Just a quick update, it's late and I need to get some sleep but I wanted to let you all know the latest news. Jerry turned 23 today and had the best present of all, he had his tracheotomy removed yesterday. It took a bit of persuading on my part, the doc wanted to wait a couple more days, I convinced him Jerry was ready to go and we were capable of managing his care from home. The time has come and I am so ready, we finally get to go home this Thursday. Just 2 more days and we get to sleep in our own beds, I can't believe its been 10 weeks. Jerry will be getting home visits for therapy at least for the first month then will likely start the outpatient therapy at Valley Med. The full neurological assessment wont be done for a few months, likely once he plateaus and stops progressing.
I planned a little surprise party for Jerry in the day room, he thought he was going to join a group session for poker night, he was surprised. Janea, Josh and Jessica came and decorated the room and helped get things ready. We had about 10 of us for pizza and cake, it was nice to relax and sit around visiting. That's all for now, it's been a long day, I'm very tired.
Good night,
Katie
Tuesday, June 26, 2012
Thursday, June 21, 2012
9 weeks
It's now been a little over nine weeks since this nightmare began and I am so ready to go home. I'm not sure where to begin, I suppose where I left off would be a good place to start. We had a roommate for 24 hours then Jerry was put in isolation because he contracted MRSA from Kindred Hospital. The positive side to this is we were moved to our old room of 3 1/2 years ago and we have the room to ourselves. It's been great having therapists, nurses and doctors who know Jerry from his past stay here. Jerry is very well cared for here and I appreciate finally getting the therapies that he needs. For the most part I've been very satisfied with our stay however if I'm being honest I'm not satisfied with the neuro rehab, which is our main purpose for working so hard to get here. The speech therapist has been working on memory exercises which is good but as of yet there has been no neurological assessment. My understanding is the psychologist is the person who is to make an assessment. Jerry has only seen the psychologist once, in the session she spent the majority of the time focusing on depression and not assessing his neuro status. The psychologist is only planning on seeing Jerry once or twice a week, I can't see that being a sufficient amount of time to rehabilitate Jerry's brain damage. After the session was over I spoke with her out of Jerry's earshot and expressed my concern about Jerry getting a proper assessment. I want a full evaluation to determine exactly the extent of brain damage, and what course of action will be taken to rehabilitate. The psychologist said a full evaluation will be done later, more then likely on an outpatient basis, she explained that he is continuing to heal and make progress and if they do the eval now it will likely not be valid by the time they get the result of the assessment because he will have advanced beyond it. I expressed that logic does not make sense to me, Jerry will likely continue to heal and regain for the next year, you have to assess where he is now so you know what course of treatment is appropriate. The doc said she will do small assessments now but the full eval will be done later. ....so why are we here? This is the best brain injury rehabilitation in CA? I don't get it! It's time to get the trach out, go home and continue treatment on an outpatient basis.
Jerry continues to improve every day, his voice is almost back to normal and his speech is not far behind, he had TMJ (locked jaw), his teeth could not come together, he had about a 1 inch gap. Jerry's jaw was in pain which is why he wouldn't do his computer and struggled with speech. The TMJ is almost gone so tomorrow he should be upgraded to a normal diet with no limitations. The challenge now with Jerry's speech is having enough air to finish a sentence, he generally runs out of air after 4 to 5 words so the end of the sentence is barely a whisper. When he's tired he doesn't enunciate as well so it gets a little more challenging to understand him, however that's usually later at night. Jerry was finally able to work his computer yesterday, he fatigued after 30 minutes but I was so thrilled to see that he was capable and now remembers how. Looking back there have been so many improvements, a week ago Jerry could not tell time, and now he can tell time about 50% of the time. Jerry had a calc 2 math equivalent but till today couldn't add, subtract or do basic math, however today he played triominos in skills group and was able to do some simple addition. Jerry suffers from short term memory but seems to remember everything before this incident.
Today I accidentally decannulated Jerry, I tried to convince the doc to leave it out however he wasn't going for it. While I was changing Jerry's shirt the collar got caught under the trach, when I stretched the collar a bit to get Jer's arm out of the shirt it pulled the trach right out. The actual trach collar that holds the trach in place was way to loose so it didn't take much to pop it right out. The doc inserted a new trach and everything was fine. Jerry also got the stomach tube removed today, I was glad to have that thing gone. So lots of steps in the right direction, progress is being made everyday and we are very close to going home, the projected discharge date is July 2.
Good night,
Katie
Jerry continues to improve every day, his voice is almost back to normal and his speech is not far behind, he had TMJ (locked jaw), his teeth could not come together, he had about a 1 inch gap. Jerry's jaw was in pain which is why he wouldn't do his computer and struggled with speech. The TMJ is almost gone so tomorrow he should be upgraded to a normal diet with no limitations. The challenge now with Jerry's speech is having enough air to finish a sentence, he generally runs out of air after 4 to 5 words so the end of the sentence is barely a whisper. When he's tired he doesn't enunciate as well so it gets a little more challenging to understand him, however that's usually later at night. Jerry was finally able to work his computer yesterday, he fatigued after 30 minutes but I was so thrilled to see that he was capable and now remembers how. Looking back there have been so many improvements, a week ago Jerry could not tell time, and now he can tell time about 50% of the time. Jerry had a calc 2 math equivalent but till today couldn't add, subtract or do basic math, however today he played triominos in skills group and was able to do some simple addition. Jerry suffers from short term memory but seems to remember everything before this incident.
Today I accidentally decannulated Jerry, I tried to convince the doc to leave it out however he wasn't going for it. While I was changing Jerry's shirt the collar got caught under the trach, when I stretched the collar a bit to get Jer's arm out of the shirt it pulled the trach right out. The actual trach collar that holds the trach in place was way to loose so it didn't take much to pop it right out. The doc inserted a new trach and everything was fine. Jerry also got the stomach tube removed today, I was glad to have that thing gone. So lots of steps in the right direction, progress is being made everyday and we are very close to going home, the projected discharge date is July 2.
Good night,
Katie
Friday, June 15, 2012
Busy 1st Day
The day starts early around here, 8 am breakfast, dressed and in the wheelchair by 9:45, therapy from 10 to 12, lunch 12 to 1, therapy from 1 to 2 or 2 to 3. Jerry did very well today with therapy, he tolerated 3 hours. I would have to say though by the end of speech therapy he was done, he started to get a little anxiety but did his best to hold it together and get through the session.
Our private room didn't last long, another patient has moved into the room. It might be good for Jerry to have this kid as a room mate, if he can get past the anxiety. The patient is 23, has a broken neck, transferred from Chico I believe that's about all I know about him so far. Jerry started to have a bit of anxiety and stress over the additional people in the room, the doctors have been evaluating the new patients, along with nurses, and therapists so a lot of people coming and going. I had to put a movie on his computer and put head phones on him to get him to calm down. It may be equally as stressful for the new patient as Jerry frequently wakes in the night and has panic, delusional melt down sessions that at times has gone on through the night till morning. I did plead with the nurse however they received 4 new patients today and didn't have a choice. The night may be real interesting tonight.
I'm still a little nervous about respiratory, it feels like we're stepping backward. Jerry had his cuff less trach changed for a cuffed trach. The speech therapist was concerned that maybe he's not ready for eating or drinking because he coughed when he drank something. The ST also was concerned about how labored Jerry's breathing was and mentioned he may need some ventilator time. I took her aside after the therapy and explained he's totally capable of eating and drinking, he's been doing it for a week and asked her not to take away food. I also reassured her that he had labored breathing because of the anxiety he doesn't always breath that way and pleaded for her to not put him back on the vent. For now she's going to leave it as is and monitor him.
All for now,
Katie
Our private room didn't last long, another patient has moved into the room. It might be good for Jerry to have this kid as a room mate, if he can get past the anxiety. The patient is 23, has a broken neck, transferred from Chico I believe that's about all I know about him so far. Jerry started to have a bit of anxiety and stress over the additional people in the room, the doctors have been evaluating the new patients, along with nurses, and therapists so a lot of people coming and going. I had to put a movie on his computer and put head phones on him to get him to calm down. It may be equally as stressful for the new patient as Jerry frequently wakes in the night and has panic, delusional melt down sessions that at times has gone on through the night till morning. I did plead with the nurse however they received 4 new patients today and didn't have a choice. The night may be real interesting tonight.
I'm still a little nervous about respiratory, it feels like we're stepping backward. Jerry had his cuff less trach changed for a cuffed trach. The speech therapist was concerned that maybe he's not ready for eating or drinking because he coughed when he drank something. The ST also was concerned about how labored Jerry's breathing was and mentioned he may need some ventilator time. I took her aside after the therapy and explained he's totally capable of eating and drinking, he's been doing it for a week and asked her not to take away food. I also reassured her that he had labored breathing because of the anxiety he doesn't always breath that way and pleaded for her to not put him back on the vent. For now she's going to leave it as is and monitor him.
All for now,
Katie
Moving Day
Jerry was scheduled to get his trach out this morning however before the procedure started we were notified by Santa Clara Valley Medical that Jerry had been accepted and they wanted to transport him at noon. I was faced with the decision to stay at Kindred and get the trach out or move to VM. If we stayed to get the trach out Jerry would have stay through the weekend to be monitored and could lose his bed at VM or have to be reevaluated when he was ready to go. I was told that VM would complete the weaning process and decannulate him. I feared losing the opportunity to get him into VM so I opted to move him. We arrived at VM around 2:30, from the time we arrived till 11:30 tonight Jerry has had a constant flow of people bothering him. The nurse came in to do an evaluation, then the physical therapist came into evaluate followed by two doctors and the respiratory therapist. He's had blood draws, xrays, bowel treatment, bed bath, he's been turned and jostled a dozen times . Originally we were put in a room with two other people, between all the activity and the noise from the other patients, Jerry was so overwhelmed he had a melt down and went into a state of mind that is generally reserved for the middle of the night. He was ranting, not making any sense, confused, hyperventilating, and worked himself into a state of delirium. I spoke with the nurse and voiced my concern that being in a room with others would be difficult on Jerry's mental status as well as very disruptive to the other patients. The nurse moved him immediately into another room. The new room has beds for 3 other patients however for now we get it for our own private room. It took a lot to get Jerry to calm down he believed he was seeing a girl in the room that was not human and was begging me to get her out. Once Jerry's meds kicked in he calmed down, returned to a more normal state of mind, then respiratory came in and started breathing treatments and using a coughalator and got him all worked up again. This is going to be very difficult, the nurses come in and bother him 9pm, 12am & 5am, breakfast is at 8am, therapy is 10 to noon and 1 to 3. Jerry was admitted to the spinal cord injury rehab not the brain injury rehab which I was upset about, the purpose of being here is for the brain injury rehab not the spinal cord injury. I was assured that Jerry will receive the same care regardless of what unit he's in however the spinal cord unit was better equipped to handle the spinal cord injury care.
I'm having second thoughts about moving before the trach was removed. This move has been overwhelming, I feel the tracheotomy weaning will suffer a huge set back here. The protocols at VM are different and far less aggressive. Jerry has handled having the red cap around the clock for 6 days, here they only want him to have it in the day but nights they want him on oxygen through the trach. The doctor intends to change the trach back to one that has the inner cuff, they don't feel he's anywhere near being ready to be decannulated, they're taking steps backward and it's freaking me out.
Tomorrow morning will come way to early, that's all for now, I need sleep.
Katie
I'm having second thoughts about moving before the trach was removed. This move has been overwhelming, I feel the tracheotomy weaning will suffer a huge set back here. The protocols at VM are different and far less aggressive. Jerry has handled having the red cap around the clock for 6 days, here they only want him to have it in the day but nights they want him on oxygen through the trach. The doctor intends to change the trach back to one that has the inner cuff, they don't feel he's anywhere near being ready to be decannulated, they're taking steps backward and it's freaking me out.
Tomorrow morning will come way to early, that's all for now, I need sleep.
Katie
Wednesday, June 13, 2012
Good News
Quick update! As long as nothing goes wrong between now and tomorrow, Jerry is scheduled to be decannulted tomorrow morning.
...pray nothing goes wrong
Katie
...pray nothing goes wrong
Katie
Waiting on Valley Med
Today was the projected discharge date, unfortunately it's not going to happen today. We are waiting for one last piece of the puzzle for Valley Med to render a decision on accepting Jerry to the neuro rehab. The doctor here at Kindred needs to return a call to the admitting doctor at VM, once the two talk a decision will be made. We will hopefully have an answer by the end of the day today.
Jerry has done very well with the red cap he has tolerated it for 6 days now. Typically they could pull the tracheotomy out at this point but Jerry is making to much secretions and needing to be suctioned frequently. The doctor wants Jerry to have a stronger catheter down Jerry's nose to suction which would be very uncomfortable for Jerr. It's kind of a vicious cycle, they need him to create less secretions and develop a stronger cough in order to pull the cannula however the cannula causes a good portion of the secretions and he will likely not get a stronger cough. I'm hoping the doctor will decide to pull the cannula tomorrow, it's always a waiting game. If VM accepts Jerry they will take him even if he's not decannulated, VM could finish the weaning process. Once VM decides to take Jerry we will likely move the following day. I was really hoping to have a decision today, so we could move tomorrow but it's so late in the day now it's likely a decision won't be made until tomorrow.
Jerry finally slept last night after not sleeping for 48 hours, he was delusional, seeing people that weren't there and having bizarre ramblings all night long. I'm happy to report that after a good nights sleep the delusions have subsided, he's much more cognizant and in a better mood, as am I, I was nearly delusional from lack of sleep.
Hoping tomorrow brings positive decisions, ...decannulation & moving to VM. I'll keep you posted.
Katie
Jerry has done very well with the red cap he has tolerated it for 6 days now. Typically they could pull the tracheotomy out at this point but Jerry is making to much secretions and needing to be suctioned frequently. The doctor wants Jerry to have a stronger catheter down Jerry's nose to suction which would be very uncomfortable for Jerr. It's kind of a vicious cycle, they need him to create less secretions and develop a stronger cough in order to pull the cannula however the cannula causes a good portion of the secretions and he will likely not get a stronger cough. I'm hoping the doctor will decide to pull the cannula tomorrow, it's always a waiting game. If VM accepts Jerry they will take him even if he's not decannulated, VM could finish the weaning process. Once VM decides to take Jerry we will likely move the following day. I was really hoping to have a decision today, so we could move tomorrow but it's so late in the day now it's likely a decision won't be made until tomorrow.
Jerry finally slept last night after not sleeping for 48 hours, he was delusional, seeing people that weren't there and having bizarre ramblings all night long. I'm happy to report that after a good nights sleep the delusions have subsided, he's much more cognizant and in a better mood, as am I, I was nearly delusional from lack of sleep.
Hoping tomorrow brings positive decisions, ...decannulation & moving to VM. I'll keep you posted.
Katie
Sunday, June 10, 2012
Red cap success
Weaning off the ventilator is complete, Jerry's now in the weaning process for getting the tracheotomy removed. The final step before removing the trach is to be able to tolerate the red cap for 24 hours. The red cap is a cap that covers the trach and forces you to breath through the mouth and nose, this also allows air to pass the vocal cords allowing the voice to return. Jerry was able to tolerate the red cap for 12 hours two days ago and could have gone longer however the doctor would only allow 12 hours. This was a huge improvement from the previous day, he was only able to tolerate the cap for 2 1/2 hours. I believe the plan is for Jerry to be on the red cap for 24 hours, if he tolerates it they'll leave it on and monitor for a few days, if all goes well the trach can be removed. Jerry has been on the red cap for almost 40 hours now. We are hoping to have the process complete by next Wednesday as that's his projected discharge date, he can be discharged with the trach it's just better to wait until it's out.
I'm hoping to get Jerry discharged to Santa Clara Valley Medical Brain Injury Rehab Center as quickly as possible. If SCVM does not accept him then I will have a dilemma on where to discharge to, my options are Domincan Rehab Center in Santa Cruz, El Camino Hospital in Los Gatos or home. The alternative facilities don't specifically have neuro rehab, they offer PT, OT and ST which are all good but his primary need is neuro rehab. If Valley Med does not accept Jerry and the trach has been removed then I will likely have him discharged home and pursue out patient neuro rehab at SCVM.
Katie
I'm hoping to get Jerry discharged to Santa Clara Valley Medical Brain Injury Rehab Center as quickly as possible. If SCVM does not accept him then I will have a dilemma on where to discharge to, my options are Domincan Rehab Center in Santa Cruz, El Camino Hospital in Los Gatos or home. The alternative facilities don't specifically have neuro rehab, they offer PT, OT and ST which are all good but his primary need is neuro rehab. If Valley Med does not accept Jerry and the trach has been removed then I will likely have him discharged home and pursue out patient neuro rehab at SCVM.
Katie
Tuesday, June 5, 2012
Night before last was a bit rough, Jerry went to sleep about midnight but was awake again about 2 am with high anxiety. It was difficult to get him to calm down, it's exhausting at his side trying to decipher the incoherent rambling. It took until about 4:30 to get him calm enough to go back to sleep then 7 am the crew starts trickling in, nurses doing shift change, phlebotomist, ENT, General Doc, Pulmonologist, needless to say I'm a little tired, I did get a better night sleep last night, thanks to my aunt Stephani and Erin for bringing me a new bed, higher up off the floor, way more comfy and I'm high enough now that I don't have to get out of bed to make sure Jerry's still asleep, I can see him from my bed....thanks again guys!!!
Yesterday morning the nurse did not dissolve the medication completely before injecting via the feeding tube as a result the feeding tube got clogged. In her attempt to unclog the tube she may have dislodged the feeding tube from his stomach. Jerry started leaking the contents of his stomach through the skin at the insertion point of the tube. The tube feed has been put on hold until they determine the placement of the tube, he had an ultrasound and xray with dye, we're still waiting for results.
Jerry's been off the ventilator for about 5 days now and he's tolerating it very well. Jerry's trach was downsized yesterday morning and so far he's had no problems. The plan will be to downsize the trach again in 3 to 4 days provided he's still tolerating well. With the next downsize they'll cap the end of the trach so it forces him to breath normally through his mouth and nose, if he tolerates it for 3 to 4 days then they will be able to remove the trach completely. Once the trach is out he'll be monitored a couple days then ready for discharge. If all goes well we could be out of here in about 10 days and on to the next phase of recovery. I'm gearing up again to fight the fight of getting Jerry accepted into Santa Clara Valley Medical neuro rehab center. I'm hoping it won't be as much of a nightmare as it was before, I don't have the staff support and advocates here that I had at Dominican Hospital in Santa Cruz.
I owe a huge thank you to my dear friend Trish who came to sit with Jer from noon to midnight on Saturday so that I could attend a wedding. Trish has been a huge support, bringing food, even made home made baby wipes that all the nurses love. You might have a new business Trish, all the nurses want to buy some of those wipes, thank you, thank you for all you've done to help.
Katie
Yesterday morning the nurse did not dissolve the medication completely before injecting via the feeding tube as a result the feeding tube got clogged. In her attempt to unclog the tube she may have dislodged the feeding tube from his stomach. Jerry started leaking the contents of his stomach through the skin at the insertion point of the tube. The tube feed has been put on hold until they determine the placement of the tube, he had an ultrasound and xray with dye, we're still waiting for results.
Jerry's been off the ventilator for about 5 days now and he's tolerating it very well. Jerry's trach was downsized yesterday morning and so far he's had no problems. The plan will be to downsize the trach again in 3 to 4 days provided he's still tolerating well. With the next downsize they'll cap the end of the trach so it forces him to breath normally through his mouth and nose, if he tolerates it for 3 to 4 days then they will be able to remove the trach completely. Once the trach is out he'll be monitored a couple days then ready for discharge. If all goes well we could be out of here in about 10 days and on to the next phase of recovery. I'm gearing up again to fight the fight of getting Jerry accepted into Santa Clara Valley Medical neuro rehab center. I'm hoping it won't be as much of a nightmare as it was before, I don't have the staff support and advocates here that I had at Dominican Hospital in Santa Cruz.
I owe a huge thank you to my dear friend Trish who came to sit with Jer from noon to midnight on Saturday so that I could attend a wedding. Trish has been a huge support, bringing food, even made home made baby wipes that all the nurses love. You might have a new business Trish, all the nurses want to buy some of those wipes, thank you, thank you for all you've done to help.
Katie
Saturday, June 2, 2012
One step closer
Today was busy and I'm very tired so I'm gonna try and keep it brief. Jerry had a good day, he's progressing and getting one step closer to getting out of here and on to the next phase. Although I hope the next phase is going home I'm afraid that it may be neuro rehab. I think once Jerry is weaned off the ventilator and can tolerate 3 hours a day of therapy Valley Med should take him into their brain injury rehab. The more Jerry is able to communicate with us the more it is becoming apparent that he has suffered some brain damage. I know right now it's important for Jerry to wean off the vent or Valley won't take him so for now that's been the primary focus.
Jerry has been off the ventilator for over 37 hours now, he is still dependent on oxygen and at times his breathing can get a little labored but it's primarily when he is being jostled around or experiencing anxiety.
Jerry has been getting in his wheelchair at least four hours a day. Today was nice because we were able to get portable oxygen so we could go for a walk. I took Jerry for a tour of every floor and even got to go out the front door, we sat outside for about 15 minutes. We met a man about 30 who had been in a gang, he said he had been shot in the back 11 years ago. He's a paraplegic and just wanted to give Jerry some words of encouragement, it was very precious to watch their interaction, I'm glad he made the effort to come over to talk to Jerry and I'm glad that Jerry was able to respond.
Jerry tolerated the talking valve for about an hour today. His voice is still very faint and just like anything else his vocal cords need to be exercised to get back his voice. He was even practicing on his own for about 20 minutes. Jerry also passed the apple sauce swallow test today so tomorrow he can begin having soft food. They'll start with apple sauce tomorrow and add new foods each day. Next week we start the next phase of weaning which is getting the trach out. They will put a cap on the end of the trach, give oxygen through the nose, and see how he tolerates breathing through his mouth and nose. He still has to breath around all the hardware in his trachea so it may take some time to build up tolerating it. Jerry is improving each day, I look forward to the time when we can resume our lives and get off this particular ride.
Good night,
Katie
Jerry has been off the ventilator for over 37 hours now, he is still dependent on oxygen and at times his breathing can get a little labored but it's primarily when he is being jostled around or experiencing anxiety.
Jerry has been getting in his wheelchair at least four hours a day. Today was nice because we were able to get portable oxygen so we could go for a walk. I took Jerry for a tour of every floor and even got to go out the front door, we sat outside for about 15 minutes. We met a man about 30 who had been in a gang, he said he had been shot in the back 11 years ago. He's a paraplegic and just wanted to give Jerry some words of encouragement, it was very precious to watch their interaction, I'm glad he made the effort to come over to talk to Jerry and I'm glad that Jerry was able to respond.
Jerry tolerated the talking valve for about an hour today. His voice is still very faint and just like anything else his vocal cords need to be exercised to get back his voice. He was even practicing on his own for about 20 minutes. Jerry also passed the apple sauce swallow test today so tomorrow he can begin having soft food. They'll start with apple sauce tomorrow and add new foods each day. Next week we start the next phase of weaning which is getting the trach out. They will put a cap on the end of the trach, give oxygen through the nose, and see how he tolerates breathing through his mouth and nose. He still has to breath around all the hardware in his trachea so it may take some time to build up tolerating it. Jerry is improving each day, I look forward to the time when we can resume our lives and get off this particular ride.
Good night,
Katie
Tuesday, May 29, 2012
So ready to go home....
I know this place (Kindred) has a very good reputation and is considered one of the best facilities in the area for ventilator weaning, I hope they live up to their reputation and get Jerry weaned quick. I'm not impressed so far and if I'm being honest, this place is a nightmare. From day one I have been uncomfortable leaving Jerry alone for even a few minutes. Upon arrival I got the impression the room hadn't been cleaned, two trash cans were heaping full in the room. Within an hour of being here Jerry's oxygen saturation dropped significantly and he needed to be bagged, there was no ambu bag in the room, someone had to run and get one elsewhere. It should be standard for every room to be equipped with an ambu bag, particularly in a room with a ventilator patient. A nurse plugged in a tube feed to Jerry's PEG tube, she didn't open the valve on the PEG, after several minutes the tubed popped off, fell on the floor she was gonna reconnect it without even wiping it with alcohol, I stopped her saying "that's not sanitary, that was on the floor", then she wiped it. There is no PT, OT, ST after 5 or on weekends, so to get Jerry out of bed and in his chair I had to rely on the nurse and nurses aid to help me. The nurses don't know how to operate a Hoyer lift or at least didn't have any safety skills, I don't think they've been properly trained, I'm the one saying watch his feet, your smashing his head with the lift bar. They don't have monitors in the room they only have one at the nurses station which does not track oxygen levels. I requested a monitor for his room and they brought me an oximeter so I can watch his sats. Jerry's sats began to drop rapidly and the oximeter started alarming, I thought someone would come running in immediately and nobody did. I went to the nurses station in which there was a doctor and the desk clerk, I informed them I needed help Jerry's sats were dropping rapidly. I went back to the room expecting there to be someone right behind me but there wasn't. I noticed that the oxygen T-piece had popped off the trach, I popped it back on and told him to take some deep breaths, within seconds his sats returned to normal. The respiratory therapist showed up about 3 minutes later. I was furious, what if I had not noticed the T-piece, how low would his oxygen level have gotten in 3 minutes, it was already at 79% when I put it back on? I asked at the nurses station why nobody came when the alarm went off and she said "they didn't hear the alarm", I asked "didn't it alarm on your monitor here at the nurses station?", she said "No, we don't monitor oxygen levels at the nurses station". How does a hospital that specializes in respiratory and ventilator weaning not monitor oxygen levels, its absurd. I'm not a complainer and generally choose not to rock the boat but when it comes to the safety of my child I won't hold my tongue any longer. I had a sit down pow-wow with management and gave them the laundry list of complaints. They were very thankful for the info, addressed the issues right away. As a result I lost my shower privilege, suddenly "The shower is for patient use only, it's not safe for me to use and would not be covered if I have an accident". It's just been one thing after the next of events that make me feel unsafe about leaving Jerry alone for more then a few minutes. Even Jerry said "Get me outta here", I explained we can't leave until your off the vent, his response was "I don't care, I can breath, lets go". I seriously considered loading him in his wheelchair grabbing an ambu bag and driving his butt to Valley Med, they can't refuse if show up in their ER. Don't worry, I came to my senses, I didn't kid nap him. Instead I called his doctor which was unavailable so I talked with his partner pleading to find another place and get us out of here. Unfortunately there are only a few facilities that do the vent weaning, Valley Med which won't take him, Kentfield in Marin which won't let me stay with him and Kindred, so for now we are stuck here.
OK so enough with the negative, on to the positive. Jerry got an eval from PT (physical therapy) and OT (occupational therapy) today. Each will be working with Jerry 3 days a week so between the 2 of them he should get 5 days a week. Jerry also had an eval with ST (speech therapist), she loves Jerry, she claims he is her most favorite patient....so cute. She was so wonderful, so many good exercises and suggestions on how to help Jerry communicate better with us. She also had a device called Intra-Oral Electrolarynx, you place the straw on his tongue and when he talks it gives him an electronic voice. It's gonna take some practice, he did well at first but then fatigued fairly quickly. The ST left the device here in the room, she'll come again tomorrow to work with him some more with it. I may have to sneak it out tonight to see if Jerry wants to play with it, practice a little. Jerry is doing well off the vent all day and then back on at night. Tonight when he goes back on the vent the settings will be very little assist, it will be like CPAP. Jerry has been spending 4 to 8 hours in his wheelchair which is remarkable, he hated the wheelchair before and refused to be in it unless he had someplace to go, now he is asking us to put him in, and when we ask if he's ready to get back in bed he says "No", he lets us know when he's ready. The doctor also gave the OK to try the talking valve again, so that may happen tomorrow as well.
That's all for now, thank you all for continued support and prayers.
Katie
OK so enough with the negative, on to the positive. Jerry got an eval from PT (physical therapy) and OT (occupational therapy) today. Each will be working with Jerry 3 days a week so between the 2 of them he should get 5 days a week. Jerry also had an eval with ST (speech therapist), she loves Jerry, she claims he is her most favorite patient....so cute. She was so wonderful, so many good exercises and suggestions on how to help Jerry communicate better with us. She also had a device called Intra-Oral Electrolarynx, you place the straw on his tongue and when he talks it gives him an electronic voice. It's gonna take some practice, he did well at first but then fatigued fairly quickly. The ST left the device here in the room, she'll come again tomorrow to work with him some more with it. I may have to sneak it out tonight to see if Jerry wants to play with it, practice a little. Jerry is doing well off the vent all day and then back on at night. Tonight when he goes back on the vent the settings will be very little assist, it will be like CPAP. Jerry has been spending 4 to 8 hours in his wheelchair which is remarkable, he hated the wheelchair before and refused to be in it unless he had someplace to go, now he is asking us to put him in, and when we ask if he's ready to get back in bed he says "No", he lets us know when he's ready. The doctor also gave the OK to try the talking valve again, so that may happen tomorrow as well.
That's all for now, thank you all for continued support and prayers.
Katie
Friday, May 25, 2012
Moving Day
Yesterday was supposed to be moving day to Valley Med, I lost count of how many times they accepted Jerry then changed their minds because they determined he wasn't stable enough for their brain injury rehab program. It's to exhausting to go into all the details, the bottom line is bureaucratic absurdities. All I can say is REALLY? I mean Really? ....It's a trauma center that takes patients who have severe head trauma who are clinging to life and they think Jerry's not stable enough? CRAZY!!!!
With Valley Med not an option I had two other choices one in Marin which will not allow me to stay with Jerry round the clock like I've been here and the other in San Leandro which will allow me to stay with him and they'll give us a private room. Putting aside the accommodations for me I needed to choose the best fit for Jerry's needs and I feel Kindred in San Leandro is the best fit. My primary concern for getting Jerry to Valley Med was they have the best neuro rehab available, we didn't know the severity of brain damage Jerry suffered, it seemed severe in the beginning. It's become clear to me in the last three days that Jerry suffered very little brain damage if any, I feel like mentally he is close to what he was before this accident. With each day he gets better, more aware, cognizant, responsive, communicative, shows appropriate emotion, he can read, tell time, express his needs. Still we won't know the extent of damage if any until he can be evaluated and that won't be happening here at Dominican. I feel like Jerry's needs have shifted from neuro rehab being most important to ventilator and trach weaning being the primary concern. That being said Kindred in San Leandro has the best and fastest success rate for vent weaning. Once Jerry is off the vent if he requires additional neuro rehab they will transfer him to Valley Med.
Jerry is scheduled for pick up at 9am, I have about 30 minutes to get ready and I haven't even had coffee yet. Gotta run, more later.
Katie
With Valley Med not an option I had two other choices one in Marin which will not allow me to stay with Jerry round the clock like I've been here and the other in San Leandro which will allow me to stay with him and they'll give us a private room. Putting aside the accommodations for me I needed to choose the best fit for Jerry's needs and I feel Kindred in San Leandro is the best fit. My primary concern for getting Jerry to Valley Med was they have the best neuro rehab available, we didn't know the severity of brain damage Jerry suffered, it seemed severe in the beginning. It's become clear to me in the last three days that Jerry suffered very little brain damage if any, I feel like mentally he is close to what he was before this accident. With each day he gets better, more aware, cognizant, responsive, communicative, shows appropriate emotion, he can read, tell time, express his needs. Still we won't know the extent of damage if any until he can be evaluated and that won't be happening here at Dominican. I feel like Jerry's needs have shifted from neuro rehab being most important to ventilator and trach weaning being the primary concern. That being said Kindred in San Leandro has the best and fastest success rate for vent weaning. Once Jerry is off the vent if he requires additional neuro rehab they will transfer him to Valley Med.
Jerry is scheduled for pick up at 9am, I have about 30 minutes to get ready and I haven't even had coffee yet. Gotta run, more later.
Katie
Wednesday, May 23, 2012
Moving Day Roller Coaster
I'm ready to get off the moving day roller coaster, one minute we're moving the next we are not, Valley Med is on again off again on whether they are taking Jerry. When Valley Med accepted Jerry they wanted to move him right away but it took them so much time to come to the decision by then he started having a setback with fever and infection . VM wouldn't take Jerry until he was infection free, in the mean time he became ventilator dependent again. Once the infections were cleared VM was ready to take him but wanted report on his respiratory issues, once they found out he had a bronchoscopy and was needing suction every hour they again decided they couldn't take him. Today the doctor who makes the decision at VM is going to speak with the doctor here and if the VM doc likes the report from the ICU doc here then we will be moving to Valley Med today. Here's the monkey wrench, if the ICU doc feels Jerry is well enough and can be released today to VM then he is ready for discharge according to medicare and the case manager if VM decides they won't take him today or don't have a bed available for him then he will be moved to Kentfield in Marin. This is such nonsense, so much time wasted on such a simple decision, let's get on with it all ready.
On a more positive note I do believe that Jerry did not suffer severe brain damage. Jerry may need speech therapy and some brain rehab, it's really hard to know until we can get him to Valley Med for an assessment. I feel like he is at least 95% back to what he was before this accident neurologically. Jerry is communicating now with his lips, he's still unable to talk because of the trach and he's not tolerating the talking valve. Jerry has some muscle weakness on the right side of his face making it very difficult for him to form words completely with his lips which made it next to impossible to try to read his lips. The facial muscle weakness has improved significantly it's almost unnoticeable at this point and he's able to form words with his lips much more clearly, I've gotten a lot better at understanding him. Jerry is showing appropriate emotions, sadness, fear, anger, humor and has even thrown in a little sarcasm. I know he can read because I asked him if he remembered how to do so and he replied yes, I wrote some words and asked him to read them and he clearly mouthed each word. Yesterday Jer asked to be put in his wheelchair which in and of itself is a huge deal, he hates that chair and generally refuses to get in it unless he has somewhere to go. It was a huge production to get him in the chair which required the physical therapist, respiratory therapist, nurse and myself. It took time to get everyone together and Jerry was getting quite impatient and he kept asking "When are they coming?", I said "Soon", he complained "It's been 2 hours". Realizing he was right it had been 2 hours was such a meaningful moment, it meant he was aware of time, could tell time and was watching the clock and keeping track. After the production of getting Jerry in the chair and started on our walk, the therapist said "That took a little time but wasn't so bad." in which you could read the sarcasm on Jerry's expression when he said "Three hours!!!" On another occasion Jerry was trying to tell me something and I couldn't quite make it out, it looked like he was saying kiss, which didn't seem right but I asked "kiss?", "You want a kiss?", he got a huge smile, rolled his eyes, turned his head away and vehemently shook his head while mouthing "NOOOO", I had to laugh and say "I was pretty sure you weren't asking for a kiss but had to ask." lol.
So here we are, waiting patiently and hoping to move to Valley Med today.
Katie
On a more positive note I do believe that Jerry did not suffer severe brain damage. Jerry may need speech therapy and some brain rehab, it's really hard to know until we can get him to Valley Med for an assessment. I feel like he is at least 95% back to what he was before this accident neurologically. Jerry is communicating now with his lips, he's still unable to talk because of the trach and he's not tolerating the talking valve. Jerry has some muscle weakness on the right side of his face making it very difficult for him to form words completely with his lips which made it next to impossible to try to read his lips. The facial muscle weakness has improved significantly it's almost unnoticeable at this point and he's able to form words with his lips much more clearly, I've gotten a lot better at understanding him. Jerry is showing appropriate emotions, sadness, fear, anger, humor and has even thrown in a little sarcasm. I know he can read because I asked him if he remembered how to do so and he replied yes, I wrote some words and asked him to read them and he clearly mouthed each word. Yesterday Jer asked to be put in his wheelchair which in and of itself is a huge deal, he hates that chair and generally refuses to get in it unless he has somewhere to go. It was a huge production to get him in the chair which required the physical therapist, respiratory therapist, nurse and myself. It took time to get everyone together and Jerry was getting quite impatient and he kept asking "When are they coming?", I said "Soon", he complained "It's been 2 hours". Realizing he was right it had been 2 hours was such a meaningful moment, it meant he was aware of time, could tell time and was watching the clock and keeping track. After the production of getting Jerry in the chair and started on our walk, the therapist said "That took a little time but wasn't so bad." in which you could read the sarcasm on Jerry's expression when he said "Three hours!!!" On another occasion Jerry was trying to tell me something and I couldn't quite make it out, it looked like he was saying kiss, which didn't seem right but I asked "kiss?", "You want a kiss?", he got a huge smile, rolled his eyes, turned his head away and vehemently shook his head while mouthing "NOOOO", I had to laugh and say "I was pretty sure you weren't asking for a kiss but had to ask." lol.
So here we are, waiting patiently and hoping to move to Valley Med today.
Katie
Monday, May 21, 2012
Not Going Anywhere
Word on the street is we aren't going anywhere and it may be awhile Jerry's got an infection of some sort, his white blood count is elevated and still struggling with the fever. Valley Med would prefer that he be off the vent and infection free before transporting him. They will take Jerry if he doesn't get off the ventilator but not to the brain injury rehab center which is where he needs to be. Jerry had a mucus plug in one of the lobes of his left lung so the doc did a bronchoscopy, went down his bronchials with a scope and suctioned out the plug. The mucus was clear which is a good indicator that was not the source of infection. So we will be here at least until Wednesday.
Katie
Katie
One month today
I can't believe we have been in the ICU for a month now, although it does feel like an eternity. To move or not to move that is the question. Today was supposed to be moving day to Santa Clara Valley Medical but everything is up in the air at this point. The Intensivist, ENT, and Pulmonologist doctors need to come to an agreement on weather or not to transport and Valley Med has to decide whether or not to accept him now or wait. I mentioned in earlier posts that Jerry was off the ventilator for 5 days and tolerated it very well his vitals were just as good off the vent as they were on the vent. Jerry had a setback physically with the fever and all the different infections going on in his body, his breathing was too labored so he was put back on the ventilator. Now after 6 days of antibiotics the infections should all be cleared up however he is more dependent on the vent now then he has been in all the time since he got the tracheotomy. I tell ya this dance of two steps forward and one step back is frustrating. I look forward to the time when life resumes as we knew it.
Katie
Katie
Thursday, May 17, 2012
Good News
I'm gonna start off with the good news, that I've been waiting for for a couple weeks now, Jerry was finally accepted into Santa Clara Valley Medical Brain Injury Rehabilitation, hallelujah!!!! Praise God Jerry will be where he needs to be and should be ready to move on Monday if all goes well. Jerry needs to get a new pic line put in tomorrow morning, then the ENT doctor will come in and put a scope down his throat to see if the swelling has gone down, if all looks good then they will try the talking valve again. Jerry tolerated being off the ventilator for about 12 hours today and could have gone longer but the doctors want him to rest at night so as not to fatigue him. The plan is to have him off the ventilator completely by Sunday because SCVM won't take him if he's still on the vent.
A friend of mine bought a ticket for me to go see a faith healer in San Francisco at this point I'm open to anything. My dear friend Trish came and spent the day with Jerry holding down the fort and communicating with the docs and nurses on my behalf so I could attend the event. Thank you Trish for all the support you have been a tremendous help to me and I appreciate all you have done.
Katie
A friend of mine bought a ticket for me to go see a faith healer in San Francisco at this point I'm open to anything. My dear friend Trish came and spent the day with Jerry holding down the fort and communicating with the docs and nurses on my behalf so I could attend the event. Thank you Trish for all the support you have been a tremendous help to me and I appreciate all you have done.
Katie
Still in ICU
Jerry is still at Dominican ICU, he was supposed to be discharged today and since he still hasn't been accepted to Valley Med he would have been sent to Marin. The discharge has been delayed however because Jerry's had a setback physically. Jerry has been struggling to regulate his body temperature and yesterday his temp went back up to about 102, he has a UTI, a staph infection in his blood, the onset of bronchitis as well as inflammation in his trachea. All this has worn Jer out a bit and his breathing became very labored so he is back on the ventilator. If all goes well he should be ready to discharge to rehab by Monday. I still don't have an answer from Valley Med but am working every possible angle and pray we can get him accepted before Monday.
I'm really starting to believe that Jerry will make a full recovery, he's becoming more and more responsive every day. It's so difficult for Jer to communicate with us because he has no voice with the trach but it's such an encouragement that he is trying to communicate. It's clear to see that Jerry has awareness, he's answering questions either with head nods or mouthing the word yes or no. I asked if he knew where he is and he lipped hospital, when asked what he was watching on TV he lipped football, he's been able to direct me which music to put on his Zune, he's following commands and answering some yes no questions. Mentally I believe Jerry is well on his way to recovery.
good night,
katie
I'm really starting to believe that Jerry will make a full recovery, he's becoming more and more responsive every day. It's so difficult for Jer to communicate with us because he has no voice with the trach but it's such an encouragement that he is trying to communicate. It's clear to see that Jerry has awareness, he's answering questions either with head nods or mouthing the word yes or no. I asked if he knew where he is and he lipped hospital, when asked what he was watching on TV he lipped football, he's been able to direct me which music to put on his Zune, he's following commands and answering some yes no questions. Mentally I believe Jerry is well on his way to recovery.
good night,
katie
Monday, May 14, 2012
Progression
After being observed throughout the night it was discovered that Jerry was not sleeping so the last couple of nights he's been receiving a medication to help him sleep. I think the sleep has helped his brain rest, he seems to be more alert and more responsive now that he's had some rest. This morning at 6:30 we had a bit of a scare his trach tube became clogged, his oxygen dropped to 0 and heart rate dropped to 40, his face was white as a ghost, the nurse ran for help and about 5 people came rushing in. Someone began bagging him as a couple others quickly worked to change the tube. The emergency start to finish only lasted maybe 2 minutes but felt like forever. Once the tube was changed all his vitals returned to normal fairly quickly.
Jerry was supposed to have the PEG tube procedure done yesterday however I was able to get it postponed to Monday which gives me until Wednesday to try and get him into Valley Med. Valley Med is reconsidering but is requiring more information, they need a Physical Therapist evaluation among other things. The PT was so wonderful and helpful, she stayed after hours to do a last minute eval and report. I'm hoping that by late Monday early Tuesday we will know if he's been accepted into VM. I did find another facility that looks phenomenal in Roseville, the case manager is also submitting all the requirements to try and get him in there as a back up should VM deny the case. I had some issues with the case manager on how he was handling some things, I was upset that he took it upon himself without my consent to submit to the facility in Marin, even after I told him I didn't want Jerry there. I've spoken with another family member who has a loved one in the ICU and she also had problems with the case manager. Apparently he has only been here a short time, I requested a meeting with the case manager and someone new showed up. Interestingly the person I was working with is no longer employed here, he resigned. The new case worker seems great, she's really advocating to get Jer to VM and got on it right away to submit to Roseville as a back up plan.
Jerry is even more responsive today then yesterday, it seems as if parts of his brain may be reconnecting. You can get him to nod his head yes or no if you ask him to but oddly enough he won't use that skill to answer questions. He's now following commands pretty consistently and seems to have some understanding. When asked he will lift his head, open and close his mouth for thermometer, stick out his tongue, try and move his arm, nod his head yes or no. It also seems that Jerry is trying to mouth words, he does not form the words completely so it's hard to try and read his lips. A speech therapist came to insert a special valve on Jerry's trach tube which would allow him to talk. There is a cuff in the trachea that blocks the air way so that air does not flow up out the mouth and nose, it will only flow through the trach tube. When the talk valve is put on the cuff is deflated so air can circulate around it. When he breaths in the air comes through the valve in the trach tube, when he breaths out the valve closes and the air has to get around the cuff and out the mouth which allows the air to pass the vocal cords to make a voice. Jerry did not tolerate the valve well, his respiratory rate accelerated fairly quickly. It was to much work for him to try and push the air around all the obstructions in the trachea. Maybe tomorrow he will tolerate it better.
Since Jerry seems so much more responsive and aware today I had an idea that maybe he would remember how to use his computer and could possible communicate by typing. I had Janea bring his computer and chin mouse to test if he would remember what to do with it. I didn't have much luck getting him to use it, it's to soon, maybe tomorrow he will remember how to use it ...we'll try again.
Happy mothers day to all you moms including my own :)
Katie
Jerry was supposed to have the PEG tube procedure done yesterday however I was able to get it postponed to Monday which gives me until Wednesday to try and get him into Valley Med. Valley Med is reconsidering but is requiring more information, they need a Physical Therapist evaluation among other things. The PT was so wonderful and helpful, she stayed after hours to do a last minute eval and report. I'm hoping that by late Monday early Tuesday we will know if he's been accepted into VM. I did find another facility that looks phenomenal in Roseville, the case manager is also submitting all the requirements to try and get him in there as a back up should VM deny the case. I had some issues with the case manager on how he was handling some things, I was upset that he took it upon himself without my consent to submit to the facility in Marin, even after I told him I didn't want Jerry there. I've spoken with another family member who has a loved one in the ICU and she also had problems with the case manager. Apparently he has only been here a short time, I requested a meeting with the case manager and someone new showed up. Interestingly the person I was working with is no longer employed here, he resigned. The new case worker seems great, she's really advocating to get Jer to VM and got on it right away to submit to Roseville as a back up plan.
Jerry is even more responsive today then yesterday, it seems as if parts of his brain may be reconnecting. You can get him to nod his head yes or no if you ask him to but oddly enough he won't use that skill to answer questions. He's now following commands pretty consistently and seems to have some understanding. When asked he will lift his head, open and close his mouth for thermometer, stick out his tongue, try and move his arm, nod his head yes or no. It also seems that Jerry is trying to mouth words, he does not form the words completely so it's hard to try and read his lips. A speech therapist came to insert a special valve on Jerry's trach tube which would allow him to talk. There is a cuff in the trachea that blocks the air way so that air does not flow up out the mouth and nose, it will only flow through the trach tube. When the talk valve is put on the cuff is deflated so air can circulate around it. When he breaths in the air comes through the valve in the trach tube, when he breaths out the valve closes and the air has to get around the cuff and out the mouth which allows the air to pass the vocal cords to make a voice. Jerry did not tolerate the valve well, his respiratory rate accelerated fairly quickly. It was to much work for him to try and push the air around all the obstructions in the trachea. Maybe tomorrow he will tolerate it better.
Since Jerry seems so much more responsive and aware today I had an idea that maybe he would remember how to use his computer and could possible communicate by typing. I had Janea bring his computer and chin mouse to test if he would remember what to do with it. I didn't have much luck getting him to use it, it's to soon, maybe tomorrow he will remember how to use it ...we'll try again.
Happy mothers day to all you moms including my own :)
Katie
Friday, May 11, 2012
A Great Day
I wanna back up and talk a little about yesterday and then I'll get to the good news of the day today. I mentioned in a previous post about a nurse talking with me about Post Traumatic Stress Disorder (PTSD), so I limited visits, kept stimulation to a minimal and kept the room quiet and peaceful. In my research of PTSD I came across another condition called Catatonic State, the symptoms fit Jerry to a T. Catatonic State is Generally a neurological disorder however it can be induced by Serotonin Syndrome, patients can be brought out of Catatonia with medication. I got very excited about this, I felt like this might be what Jerry is experiencing and was very anxious to speak to the neuro specialist about it. After talking with the doctor I was so discouraged and loosing hope. The doctor shot down the idea of PTSD and Catatonic State, even though Catatonia symptoms matched almost exactly what Jerry was experiencing the doc said it's not in context Jerry has suffered brain damage from the high fever. Doc could not say to what degree, however if there is even the slightest progress on a daily basis it's a good sign but once he plateaus there's a good chance that's where he will remain, Jerry plateaued the day he was extubated 5 days ago. I asked the doc to do another EEG which measures brain wave activity to see if there is improvement, she gave me the shpeal for the 3rd time that they don't use the EEG to determine brain damage, it's used to determine if the brain is seizing. I explained I understand it's not a tool to determine brain damage however it can show improvement in brain wave activity which is an indicator if the brain is making improvement. The doc was not going to do an EEG and it upset me, I politely said thanks and walked away coming to the conclusion she is of no help or encouragement. Ten minutes later the doc walked in the room and said she ordered an EEG and within the hour the EEG was done. The EEG showed that his brain wave activity had improved and doc said the activity is about 80% of normal, this gave me the encouragement I needed, I understand it can't determine brain damage but it certainly encouraged me that he's got some degree of brain function.
There is one thing I have not posted because it was traumatizing to me and I didn't want to bring worry to others unnecessarily. On four separate occasions from three different doctors I was confronted on what would Jerry want and to begin to consider how long to wait to make the decision to let him go. I was astounded that they broached this topic so soon into his injury, it had only been two weeks. How can you suggest such a thing when you can't even definitively determine weather or not he's brain damaged, or to what degree of damage if any. After the fourth conversation I began to feel broken down, I knew we couldn't make this decision now, no way this should even have been discussed at this point. I asked what exactly they were suggesting and was told that they could withhold the things keeping him alive, the ability to breath and receive nutrients. My response was "so he will either suffocate or starve to death? ...this is cruel beyond belief and unfathomable to me." They expressed "not as cruel as keeping someone alive as a vegetable against their will." I know what Jerry's wishes are, we've discussed it many times, I know we have to make the decision to honor his wishes if he does not recover mentally. I understand now why they wanted to bring this up so soon, because he was getting stronger physically but not mentally, he would be taken off the ventilator when he was strong enough and you legally lose the right to choose if he's breathing on his own. If I knew without a doubt he was brain dead or damaged and would not recover mentally I would honor Jerry's wishes but no one can predict the outcome and there is no MRI, CT, EEG or any other test that can diagnose the severity of his injury. So NO this is not an option we will fight, we will do what ever it takes and wait as long as he needs to recover. It became very clear to me, it was almost like I had been in a fog and it instantly lifted and I was thinking clear for the first time ...I have to get Jerry out of here. This is not the place for him, why didn't I realize this sooner, it was so obvious from the beginning, as soon as he was out of the coma he needed to be transferred to a rehabilitation center. They don't rehabilitate here, they stabilize and send you away, that's their job.
Once I had clarity on what needed to be done, I spoke with the case manager to discuss moving Jerry to Santa Clara Valley Medical Brain Injury Rehabilitation Center. The case manager was pretty adamant about sending him to a facility in Marin, I was adamant about sending him to SCVM. The case manager contacted SCVM and was told that they won't take Jerry because he is non responsive, this was extremely disappointing to me. I started researching the facility in Marin as well as looking for other facilities that may meet Jerry's needs. I was originally told that they were thinking of transferring him sometime next week so I felt I had a little time to determine where to send him. I contacted the place in Marin and found that their rehab program may be adequate however they will not allow me to stay with him and visiting hours are 8am to 8pm. This is unacceptable to me, other than leaving a couple times to shower and get a bite to eat I have been here round the clock. I need to be with him to assure he's being cared for properly, he does not have the ability to express his needs, I am his voice and I will not be told I can't stay with him. At 3:30 today I was hit with a bomb shell, the case manager informed me that Jerry was going to be scheduled for discharge tomorrow and he would be transferred to Marin because he has medicare once a facility accepts him and a bed is available he will automatically be sent there and you have no choice. If you refuse to be taken to that facility then they will discharge you home. I have the right to appeal however, then medicare will approve or deny the appeal within 24 to 48 hours. I'm not even going to go into the fight I have with medicare it's to lengthy, the short version is Blue Cross was our primary insurance and Jerry had Medicare as a secondary, when Dennis lost his Job we had to pick up Blue Cross through Cobra. At that time Medicare made itself the primary and will not relinquish primary status so we are at the mercy of Medicare and they don't have near the coverage we have through Blue Cross and to make matters worse Blue Cross cannot approve anything that Medicare has declined even if' it's something they normally cover....it's an absurd nightmare. Didn't mean to get side tracked on the insurance nightmare. It's medicare pushing to get Jerry discharged to Marin not the doctors and they don't have the authority to make that happen without doctors orders. The doctor has assured me she has no intention of discharging him before Sunday so we should have until Monday to try and get him into SCVM. If I can get him accepted into SCVM before discharge papers are drawn up then Medicare has to let us make the choice.
Now onto the good stuff, despite the bureaucratic BS, today was amazing. Jerry was finally responsive, today he finally responded to commands ....THANK YOU JESUS!!!!! Myself, two different doctors and Trish were able to get Jerry to respond to commands throughout the day. He's not consistent but he is deliberate and that is HUGE. He will comply when you ask him to stick out his tongue, smile, look at me, look at the ceiling, follow my finger, lift your head. There is one oddity and the doctors only response was "hmmm....interesting". Jerry won't close his eyes or blink, the doc did a test touching Jerry's eye ball lightly with cotton which should make him attempt to close his eyes but he didn't. Part of what is so strange is prior to extabation Jerry was blinking his eyes all the time, we determined it wasn't a good tool to use eye blinks for communication because he was blinking a lot and when you put eye drops in he would squeeze his eyes closed very tight, he's no longer doing this. I have the night nurses on watch to see if he closes his eyes at all to sleep, it's possible he has not been sleeping at all or at least not closing his eyes during sleep. Right now he's snoring however his eyes are open and he is still looking around at things, it's so strange.
After Jerry's doctor that he's been seeing the last 3 years saw Jerry responding to commands he said he needs to get to SCVM. I said they already declined him can you pull some strings? ....call in a favor from one of your golf buddies, lol? ...can you get him in to SCVM? He said "Let me make some calls and see what I can do" Pray that we can get him into Valley Med before those discharge papers are drawn up.
Thank you all for caring, praying, and leaving comments of words of encouragement I read them all and feel very blessed to have so many people that care and love our family.
Good Night,
Katie
There is one thing I have not posted because it was traumatizing to me and I didn't want to bring worry to others unnecessarily. On four separate occasions from three different doctors I was confronted on what would Jerry want and to begin to consider how long to wait to make the decision to let him go. I was astounded that they broached this topic so soon into his injury, it had only been two weeks. How can you suggest such a thing when you can't even definitively determine weather or not he's brain damaged, or to what degree of damage if any. After the fourth conversation I began to feel broken down, I knew we couldn't make this decision now, no way this should even have been discussed at this point. I asked what exactly they were suggesting and was told that they could withhold the things keeping him alive, the ability to breath and receive nutrients. My response was "so he will either suffocate or starve to death? ...this is cruel beyond belief and unfathomable to me." They expressed "not as cruel as keeping someone alive as a vegetable against their will." I know what Jerry's wishes are, we've discussed it many times, I know we have to make the decision to honor his wishes if he does not recover mentally. I understand now why they wanted to bring this up so soon, because he was getting stronger physically but not mentally, he would be taken off the ventilator when he was strong enough and you legally lose the right to choose if he's breathing on his own. If I knew without a doubt he was brain dead or damaged and would not recover mentally I would honor Jerry's wishes but no one can predict the outcome and there is no MRI, CT, EEG or any other test that can diagnose the severity of his injury. So NO this is not an option we will fight, we will do what ever it takes and wait as long as he needs to recover. It became very clear to me, it was almost like I had been in a fog and it instantly lifted and I was thinking clear for the first time ...I have to get Jerry out of here. This is not the place for him, why didn't I realize this sooner, it was so obvious from the beginning, as soon as he was out of the coma he needed to be transferred to a rehabilitation center. They don't rehabilitate here, they stabilize and send you away, that's their job.
Once I had clarity on what needed to be done, I spoke with the case manager to discuss moving Jerry to Santa Clara Valley Medical Brain Injury Rehabilitation Center. The case manager was pretty adamant about sending him to a facility in Marin, I was adamant about sending him to SCVM. The case manager contacted SCVM and was told that they won't take Jerry because he is non responsive, this was extremely disappointing to me. I started researching the facility in Marin as well as looking for other facilities that may meet Jerry's needs. I was originally told that they were thinking of transferring him sometime next week so I felt I had a little time to determine where to send him. I contacted the place in Marin and found that their rehab program may be adequate however they will not allow me to stay with him and visiting hours are 8am to 8pm. This is unacceptable to me, other than leaving a couple times to shower and get a bite to eat I have been here round the clock. I need to be with him to assure he's being cared for properly, he does not have the ability to express his needs, I am his voice and I will not be told I can't stay with him. At 3:30 today I was hit with a bomb shell, the case manager informed me that Jerry was going to be scheduled for discharge tomorrow and he would be transferred to Marin because he has medicare once a facility accepts him and a bed is available he will automatically be sent there and you have no choice. If you refuse to be taken to that facility then they will discharge you home. I have the right to appeal however, then medicare will approve or deny the appeal within 24 to 48 hours. I'm not even going to go into the fight I have with medicare it's to lengthy, the short version is Blue Cross was our primary insurance and Jerry had Medicare as a secondary, when Dennis lost his Job we had to pick up Blue Cross through Cobra. At that time Medicare made itself the primary and will not relinquish primary status so we are at the mercy of Medicare and they don't have near the coverage we have through Blue Cross and to make matters worse Blue Cross cannot approve anything that Medicare has declined even if' it's something they normally cover....it's an absurd nightmare. Didn't mean to get side tracked on the insurance nightmare. It's medicare pushing to get Jerry discharged to Marin not the doctors and they don't have the authority to make that happen without doctors orders. The doctor has assured me she has no intention of discharging him before Sunday so we should have until Monday to try and get him into SCVM. If I can get him accepted into SCVM before discharge papers are drawn up then Medicare has to let us make the choice.
Now onto the good stuff, despite the bureaucratic BS, today was amazing. Jerry was finally responsive, today he finally responded to commands ....THANK YOU JESUS!!!!! Myself, two different doctors and Trish were able to get Jerry to respond to commands throughout the day. He's not consistent but he is deliberate and that is HUGE. He will comply when you ask him to stick out his tongue, smile, look at me, look at the ceiling, follow my finger, lift your head. There is one oddity and the doctors only response was "hmmm....interesting". Jerry won't close his eyes or blink, the doc did a test touching Jerry's eye ball lightly with cotton which should make him attempt to close his eyes but he didn't. Part of what is so strange is prior to extabation Jerry was blinking his eyes all the time, we determined it wasn't a good tool to use eye blinks for communication because he was blinking a lot and when you put eye drops in he would squeeze his eyes closed very tight, he's no longer doing this. I have the night nurses on watch to see if he closes his eyes at all to sleep, it's possible he has not been sleeping at all or at least not closing his eyes during sleep. Right now he's snoring however his eyes are open and he is still looking around at things, it's so strange.
After Jerry's doctor that he's been seeing the last 3 years saw Jerry responding to commands he said he needs to get to SCVM. I said they already declined him can you pull some strings? ....call in a favor from one of your golf buddies, lol? ...can you get him in to SCVM? He said "Let me make some calls and see what I can do" Pray that we can get him into Valley Med before those discharge papers are drawn up.
Thank you all for caring, praying, and leaving comments of words of encouragement I read them all and feel very blessed to have so many people that care and love our family.
Good Night,
Katie
Wednesday, May 9, 2012
Quick Update
I'm sorry I didn't get the time today to post but thought I should give a quick update before I go to sleep.
I woke up this morning feeling very optimistic about some things I found in my research of Post Traumatic Stress Disorder more specifically in what I found out about Catatonic State. I felt like the latter fit Jerry's symptoms to a T and I was anxious to talk with the neuro specialist about it this morning. After speaking with the neuro doc she dismissed PTSD and Catatonia immediately, she said he has brain damage and left me feeling very discouraged and distraught for most the day. I will spend some time going into more detail tomorrow, by the days end today I felt very optimistic again, I have a new mission ....to get Jerry out of this hospital, they are not equipped to help him recover from his brain injury.
Jerry has been off the ventilator for 41 hours, putting the tracheotomy in was the best decision that could have been made, I wish they would have done it sooner. We now know that Jerry will NOT be ventilator dependent for life, and unless there is a setback will not have to go back on the vent again. I will give a more detailed better update tomorrow when I'm not so tired.
Katie
I woke up this morning feeling very optimistic about some things I found in my research of Post Traumatic Stress Disorder more specifically in what I found out about Catatonic State. I felt like the latter fit Jerry's symptoms to a T and I was anxious to talk with the neuro specialist about it this morning. After speaking with the neuro doc she dismissed PTSD and Catatonia immediately, she said he has brain damage and left me feeling very discouraged and distraught for most the day. I will spend some time going into more detail tomorrow, by the days end today I felt very optimistic again, I have a new mission ....to get Jerry out of this hospital, they are not equipped to help him recover from his brain injury.
Jerry has been off the ventilator for 41 hours, putting the tracheotomy in was the best decision that could have been made, I wish they would have done it sooner. We now know that Jerry will NOT be ventilator dependent for life, and unless there is a setback will not have to go back on the vent again. I will give a more detailed better update tomorrow when I'm not so tired.
Katie
Monday, May 7, 2012
Hope
Yesterday I was sad, angry and discouraged, I woke up today feeling like I had to force myself to keep a positive outlook, to keep hope alive. With hope I have the strength to endure without it I crumble. Two people have shared stories of encouragement of suffering brain injury and being told there was no hope of recovery and yet they recovered. It occurred to me that I need to hear more of these stories to remind me not to give up when I'm feeling weak. If any of you have stories to share please do, if you have a success story of a friend or family member that suffered brain injury or coma please share it with me. If you have trouble posting it on the blog or would rather keep it private you can email it to me at katie@followingjerry.com.
Jerry is doing very well with the weaning exercise from the ventilator, he has been off the vent for about 4 hours and breathing very comfortably.
Katie
Jerry is doing very well with the weaning exercise from the ventilator, he has been off the vent for about 4 hours and breathing very comfortably.
Katie
Ups and downs
Today was emotionally draining for me, fear began to set in that mentally my son is gone. I struggle with God on this one, he's already taken his body all Jerry had left was his mind and now God has taken this too. Why? ...What purpose does this serve living as a vegetable? How can this be in Gods plan? I'm confused, I'm angry and so incredibly sad. I pray for Jerry and ask others to pray but feel like a hypocrite because I don't believe God will heal him, I don't believe God will change His plan because I ask him to but I continue to ask in case I'm wrong.
Jerry is in a semicoma state in which he is awake but not responsive to commands. His eyes will look around the room and he'll turn his head and look toward sounds, however he does not appear to be aware of his surroundings. Sometimes you can get him to respond when you say "Look at me" he will look, but it's not clear if he is following the command or just turning toward the sound. Similarly you can get him to track (follow as it moves) a picture of his cat but again it's not clear if he is following the command to look at Tina (cat) "follow Tina" or if he is just interested in the picture. The doctor I spoke with today feels that there is some degree of brain damage caused by the 107 degree temperature but can't say to what extent. There are no tests ie CT scan, MRI, EEG that can definitively diagnose brain damage, the longer he stays in this semicoma state the more likely it becomes that he has suffered permanent damage.
I was speaking with Jerry's nurse this evening and telling her that I felt Jerry was present prior to extubation, it was in his eyes. Jerry would fade in and out and even though his eyes were open all the time you could feel his presence when he was there and when he was not you see it in the eyes that he checked out. After he was extubated and began to struggle with breathing I saw the most terrified look on his face, his eyes could not open any wider and that was the last time I felt his presence. Now when he is awake and his eyes are open I don't sense his presence. The nurse was telling me that he could have been so frightened that he went into Post Traumatic Stress Disorder, and he shut down. The way they generally handle this is reduce the stimulation and let him rest. I'm asking for no visitors for the next couple of days to see if it will help him in any way.
I'd like to end on a more positive note, physically Jerry is doing very well. Jerry experienced a multitude of secondary illnesses associated with the serotonin syndrome, in fact Jerry had all but one of the secondary issues. The one Jerry did not get was renal failure, I'm so grateful for that. Of all the secondary illnesses he got only two remain stress induced diabetes which he is given insulin several times a day and the lack of ability to regulate his temperature so he is always running a fever. These two are minor in comparison to what he has gone through and likely are not permanent. Lastly Jerry started weaning of the ventilator today and did very well, he spent 5 hours off the vent breathing on his own. It will be a slow process to wean off however he did so well today the respiratory therapist said he should have no trouble getting off the vent. I'm so thankful that he will not be ventilator dependent for life.
That's all for now, good night
Katie
Jerry is in a semicoma state in which he is awake but not responsive to commands. His eyes will look around the room and he'll turn his head and look toward sounds, however he does not appear to be aware of his surroundings. Sometimes you can get him to respond when you say "Look at me" he will look, but it's not clear if he is following the command or just turning toward the sound. Similarly you can get him to track (follow as it moves) a picture of his cat but again it's not clear if he is following the command to look at Tina (cat) "follow Tina" or if he is just interested in the picture. The doctor I spoke with today feels that there is some degree of brain damage caused by the 107 degree temperature but can't say to what extent. There are no tests ie CT scan, MRI, EEG that can definitively diagnose brain damage, the longer he stays in this semicoma state the more likely it becomes that he has suffered permanent damage.
I was speaking with Jerry's nurse this evening and telling her that I felt Jerry was present prior to extubation, it was in his eyes. Jerry would fade in and out and even though his eyes were open all the time you could feel his presence when he was there and when he was not you see it in the eyes that he checked out. After he was extubated and began to struggle with breathing I saw the most terrified look on his face, his eyes could not open any wider and that was the last time I felt his presence. Now when he is awake and his eyes are open I don't sense his presence. The nurse was telling me that he could have been so frightened that he went into Post Traumatic Stress Disorder, and he shut down. The way they generally handle this is reduce the stimulation and let him rest. I'm asking for no visitors for the next couple of days to see if it will help him in any way.
I'd like to end on a more positive note, physically Jerry is doing very well. Jerry experienced a multitude of secondary illnesses associated with the serotonin syndrome, in fact Jerry had all but one of the secondary issues. The one Jerry did not get was renal failure, I'm so grateful for that. Of all the secondary illnesses he got only two remain stress induced diabetes which he is given insulin several times a day and the lack of ability to regulate his temperature so he is always running a fever. These two are minor in comparison to what he has gone through and likely are not permanent. Lastly Jerry started weaning of the ventilator today and did very well, he spent 5 hours off the vent breathing on his own. It will be a slow process to wean off however he did so well today the respiratory therapist said he should have no trouble getting off the vent. I'm so thankful that he will not be ventilator dependent for life.
That's all for now, good night
Katie
Saturday, May 5, 2012
I'm sorry I meant to post earlier with an update about the surgery, the night just got away from me. I know some of you have been worried and anxiously awaiting news. The surgery went very well, Jerry is resting comfortably. There is still no signs of awareness, he was sedated however now he is just receiving a small dose of medication to make him more comfortable. I pray tomorrow he will be more alert and that we can somehow get him to communicate with us. More tomorrow....
Good night,
Katie
Good night,
Katie
Friday, May 4, 2012
Trach Day
In my last post I talked about Jerry being extubated and how difficult it was for him to breath, it was scary and painful to watch him struggle so hard just to get air. Jerry labored for about 30 hours before he began to fade and his C02 levels started to increase to a non acceptable range, it became clear at that point he needed to be back on the ventilator. Wednesday around 6 pm he was intubated and sedated to give him time to recover and rest. The original plan was to keep him off sedation to allow him to awaken from the comatose state however it's more important at this point to keep him comfortable so he can rest and regain the strength he spent while extubated. Jerry goes into surgery today at 2:30 to receive a tracheotomy. My concern was if they are giving him a tracheotomy it was because they believed he would be ventilator dependent for life and they would no longer attempt to get him off the vent. I've learned that is not the case, the trach just makes it more comfortable for him so he does not have the tube down his throat, and will make it easier for him to try and communicate when he's ready. My understanding is it's easier to wean off the vent with a trach then it is with intubation. There are risks and complications that can occur with this type of surgery and Jerry's case is complicated because of the hardware (rods & plate) in his neck so please keep him in your prayers this afternoon that the procedure will go well with no complications. The doctor assured me that of all the potential complications she has never had any of them occur and she's done this procedure hundreds of times, she feels confident that she won't have any problems with Jerry.
Jerry will be sedated until tomorrow to keep him comfortable while he adjusts to the trach, however Sunday or Monday they will begin testing his tolerance for being off the vent. The benefit of the trach is you can easily remove him from the vent and put him back on to give him opportunities to breath on his own. Once the sedation wears off he will hopefully get back to that baseline of awareness he had prior to being extubated. We still have not been able to set up a form of communication with him because he's not following commands of blink or nod. There are moments when he looks in your eyes and you know he's there, you feel his presence and sense he's trying to communicate with his eyes and other times you see in his eyes he's not there. I feel like he fades in and out of awareness but he's in there.......he's in there!!!
Katie
Jerry will be sedated until tomorrow to keep him comfortable while he adjusts to the trach, however Sunday or Monday they will begin testing his tolerance for being off the vent. The benefit of the trach is you can easily remove him from the vent and put him back on to give him opportunities to breath on his own. Once the sedation wears off he will hopefully get back to that baseline of awareness he had prior to being extubated. We still have not been able to set up a form of communication with him because he's not following commands of blink or nod. There are moments when he looks in your eyes and you know he's there, you feel his presence and sense he's trying to communicate with his eyes and other times you see in his eyes he's not there. I feel like he fades in and out of awareness but he's in there.......he's in there!!!
Katie
Tuesday, May 1, 2012
Update
Thanks to all friends and family and all those praying for Jerry! Today has been a rough day, Jerry was extubated (removed from the ventilator, breathing tube removed) today about 11 am. Breathing has been extremely labored for Jer ever since, he is not tolerating breathing on his own. The respiratory therapist has put him on a bi-pap machine to assist him in breathing however he still is working very hard to breath. My understanding is the bi-pap machine essentially does the same thing the ventilator was doing but less invasive, it uses a face mask as opposed to the breathing tube. As long as Jerry's oxygen saturation levels, C02 levels and respiratory rate remain good they will keep him on bi-pap, if any of those levels get out of acceptable range they will put him back on the ventilator either by intubation (breathing tube down the throat) or tracheotomy. Jerry remains out of the coma however he still is unable to communicate or follow commands. Please keep him in your prayers that his breathing will adjust and that he will be weaned from bi-pap and not intubated.
Thanks to all for the love, support and kindness,
Katie
Thanks to all for the love, support and kindness,
Katie
Monday, April 30, 2012
In need of prayers
Once again Jerry is in a life threatening situation in need of prayer. Last Sunday Jerry had complications with a drug interaction and experienced something called Serotonin Syndrome. His fever peaked at 107 degrees, his blood pressure dropped to critical level and his heart rate was dangerously high. Jerry was near death, barely breathing and comatose by the time the ambulance got him to the hospital. Jerry seizured throughout the night and remained comatose for the last seven days. He has mad improvements everyday from his vitals stabilizing, to his eyes opening. Today it is believed that Jerry has come out of the comatose state, his eyes have been open for the last 48 hours however today is the first day we have been able to prompt a response from him. Jerry's intubated and clearly beginning to show signs of agitation with having the breathing tube down his throat. Today was the first day that I felt a sense of relief that he's gonna pull through this. Jerry's not out of the woods and has a long road of recovery ahead, please keep him in your prayers that he will become fully awake and aware and that he won't suffer long term brain damage.
Thanks,
Katie
Thanks,
Katie
Tuesday, January 31, 2012
January 31, 2012
Thank you to all who still follow and care about Jerry's progress, I apologize for letting so much time pass since the last post. I run into people I don't see very often at the super market and am reminded that people still care and miss reading updates on how Jerry is doing. I feel that I'm not a very good writer and what I write is not all that interesting however people still ask for updates so I will try to be more diligent about updating, at least once a month.
It's been so long since I've posted I don't even know where to begin. This has been one of the most difficult years of my life and I think Jerry's as well, which is one of the reasons I haven't posted. I suppose I should start where I left off Jerry and I flew to GA in June for power soccer, which was a wonderful experience. Jerry's first plane ride was a learning experience to say the least, I was amazed how smoothly it went considering we traveled with the team and there where about eight team members in wheelchairs to pre-board the plane. The process was interesting, Jerry could only take one wheelchair so he was stuck in his soccer chair for the duration of the trip which is not very comfortable for him but he handled it very well. Getting the wheelchair through security takes a little more time then I expected, we were taken into a small private room at which point I could no longer touch or stand near Jerry. The security officer then has to pat Jerry down for weapons, the challenging part was he did not have experience in handling a quadriplegics body in the sense that he needed to lean Jerry forward to check behind his back but he didn't know how to do that on his own and could not allow me to help, I had to give him verbal step by step instructions. When that was complete he had to wipe down Jerry's chair as well as his hands and shoes with a special cloth which was then tested for explosives. Once we got through security and were ready to board it got a little bit hectic. I was told in advance that wheelchairs are not handled well when put into cargo and often come back broken. To avoid this you bring a duffel bag and disassemble the chair and put the parts (joystick, arm rests, feet rests, neck rest, head switch etc.) into the duffel and bring it as a carry on. The problem with this is they will only give you about 1 minute to disassemble and you cannot begin until Jerry is out of the chair. Luckily the coaches where there to disassemble the chair so that I could get Jerry boarded. Once we got to the bottom of the boarding ramp I had to transfer Jerry into the airport manual wheelchair designed to fit in the plane isle, the assistant wheeled him to his seat and I transferred him into the seat. Jerry is 6'3" tall and does not fit in coach very well, his knees hit the seat in front of him and his head was higher then the head rest so needless to say it was not a very comfortable flight for him. If we ever make it to China he will have to fly first class.
We had ups and downs while in GA but mostly ups, it was difficult adhering to the schedule of others and being up and out of the hotel early morning, there was a lot of rushing and running late on my part. Jerry also had difficulty controlling his chair and was disqualified his first game for lack of control in the pre-game testing. Jerry didn't get much play time in the remaining games but he was ok with it, it was to much pressure, he didn't want to screw it up for the team because he couldn't control his chair. Our team took 3rd, everyone played very well. All in all the trip was wonderful and a huge learning experience on how to travel as a quad.
Shortly after returning home Jerry was admitted to the ICU for another Pulmonary Embolism (multiple blood clots in both lungs), he spent about a week in the hospital. Jerry's doctor felt the embolism was a result of the flight, which isn't all that uncommon in people with his condition. Jerry had to go back on blood thinners and have PT-INR checks done by a vising nurse weekly. The original discussion is that Jerry would have to remain on blood thinners for life with regular INR checks, however we later discussed Jerry getting off the blood thinner after 6 months and only taking it a week before and after he does any traveling. To date he is still on blood thinners but I think it's time to advocate for him to discontinue.
In late July I took Jerry on his first camping trip as a quad, it was both challenging and very rewarding. Jessica, her boyfriend Jack, Jerry and I drove 6 hours to Trinity Lake up near Redding, and met up with friends. We had so much fun, even Jerry who was reluctant to go and had to be bribed and coerced had a blast. I brought both Jerry's wheelchairs (power and manual) because I wasn't sure if his power chair could handle the terrain. We only got into a couple of spots where the wheelchair got stuck but it wasn't to much trouble to get around it. I had two queen size air mattress that I stacked on top of each other for a bed for Jerry. I devised a method of transferring him in and out of bed via the tent back door which is difficult to explain and even more difficult to do. The transfer from the wheelchair to the bed was a piece of cake but from the bed to the wheelchair was a whole new ballgame, to say difficult would be and understatement. Our days were spent in the lake and our nights around the fire. We put a life jacket on Jerry and transferred him into a raft which we tied to the kayak, Jack and Jessica would row Jerry around the lake in the kayak. Our friends Dana and Jim have a boat so one of the days we were able to get Jerry on the tube and Dana pulled him around the lake. Thank you Dana for that awesome experience!
It's been so long since I've posted I don't even know where to begin. This has been one of the most difficult years of my life and I think Jerry's as well, which is one of the reasons I haven't posted. I suppose I should start where I left off Jerry and I flew to GA in June for power soccer, which was a wonderful experience. Jerry's first plane ride was a learning experience to say the least, I was amazed how smoothly it went considering we traveled with the team and there where about eight team members in wheelchairs to pre-board the plane. The process was interesting, Jerry could only take one wheelchair so he was stuck in his soccer chair for the duration of the trip which is not very comfortable for him but he handled it very well. Getting the wheelchair through security takes a little more time then I expected, we were taken into a small private room at which point I could no longer touch or stand near Jerry. The security officer then has to pat Jerry down for weapons, the challenging part was he did not have experience in handling a quadriplegics body in the sense that he needed to lean Jerry forward to check behind his back but he didn't know how to do that on his own and could not allow me to help, I had to give him verbal step by step instructions. When that was complete he had to wipe down Jerry's chair as well as his hands and shoes with a special cloth which was then tested for explosives. Once we got through security and were ready to board it got a little bit hectic. I was told in advance that wheelchairs are not handled well when put into cargo and often come back broken. To avoid this you bring a duffel bag and disassemble the chair and put the parts (joystick, arm rests, feet rests, neck rest, head switch etc.) into the duffel and bring it as a carry on. The problem with this is they will only give you about 1 minute to disassemble and you cannot begin until Jerry is out of the chair. Luckily the coaches where there to disassemble the chair so that I could get Jerry boarded. Once we got to the bottom of the boarding ramp I had to transfer Jerry into the airport manual wheelchair designed to fit in the plane isle, the assistant wheeled him to his seat and I transferred him into the seat. Jerry is 6'3" tall and does not fit in coach very well, his knees hit the seat in front of him and his head was higher then the head rest so needless to say it was not a very comfortable flight for him. If we ever make it to China he will have to fly first class.
We had ups and downs while in GA but mostly ups, it was difficult adhering to the schedule of others and being up and out of the hotel early morning, there was a lot of rushing and running late on my part. Jerry also had difficulty controlling his chair and was disqualified his first game for lack of control in the pre-game testing. Jerry didn't get much play time in the remaining games but he was ok with it, it was to much pressure, he didn't want to screw it up for the team because he couldn't control his chair. Our team took 3rd, everyone played very well. All in all the trip was wonderful and a huge learning experience on how to travel as a quad.
Shortly after returning home Jerry was admitted to the ICU for another Pulmonary Embolism (multiple blood clots in both lungs), he spent about a week in the hospital. Jerry's doctor felt the embolism was a result of the flight, which isn't all that uncommon in people with his condition. Jerry had to go back on blood thinners and have PT-INR checks done by a vising nurse weekly. The original discussion is that Jerry would have to remain on blood thinners for life with regular INR checks, however we later discussed Jerry getting off the blood thinner after 6 months and only taking it a week before and after he does any traveling. To date he is still on blood thinners but I think it's time to advocate for him to discontinue.
In late July I took Jerry on his first camping trip as a quad, it was both challenging and very rewarding. Jessica, her boyfriend Jack, Jerry and I drove 6 hours to Trinity Lake up near Redding, and met up with friends. We had so much fun, even Jerry who was reluctant to go and had to be bribed and coerced had a blast. I brought both Jerry's wheelchairs (power and manual) because I wasn't sure if his power chair could handle the terrain. We only got into a couple of spots where the wheelchair got stuck but it wasn't to much trouble to get around it. I had two queen size air mattress that I stacked on top of each other for a bed for Jerry. I devised a method of transferring him in and out of bed via the tent back door which is difficult to explain and even more difficult to do. The transfer from the wheelchair to the bed was a piece of cake but from the bed to the wheelchair was a whole new ballgame, to say difficult would be and understatement. Our days were spent in the lake and our nights around the fire. We put a life jacket on Jerry and transferred him into a raft which we tied to the kayak, Jack and Jessica would row Jerry around the lake in the kayak. Our friends Dana and Jim have a boat so one of the days we were able to get Jerry on the tube and Dana pulled him around the lake. Thank you Dana for that awesome experience!
 |
| Jerry Playing the maraca's drum night around the fire |
We had so much fun camping we decided to take another camping trip a few days after returning home. The second trip never happened due to an accident. I had everything all packed and loaded in the van, ready to go. The lift on the van had been broken for some time and the cost of repair was more then I had so we had been manually operating the lift. The in-out did not function electronically however the up-down still worked, to manually operate the in-out you unlock the lift grab hold of it and pull it out, when done push it in and lock it, the lift is located under the vehicle. After loading Jerry, Jack and Jessica we were off for our next adventure. We did not get far, just down the street, I had forgotten to lock the lift, as we went down the hill just before passing a tree the lift flew out, hit the tree and was ripped right out of the van. We spent the next 3 hours trying to figure out how to get Jerry out of the van. We wound up driving to a motor cycle shop and borrowing ramps used to load ATV's into the back of trucks. We were able to get Jerry/wheelchair out of the van, we transferred Jerry into another vehicle and put the wheelchair back into the van. Once we got home we were able to use the hoyer lift to get Jerry into the house and Dennis built a ramp to get the wheelchair out of the van. The cost to repair the lift came to a whopping $15,000, it took almost 2 months for the insurance to determine that they were totaling the van and paying out $8,000. Needless to say that was devastating, affordable used handicap vans that will fit Jerry are hard to come by. It took another month to find a van that we could afford, now we have a new van that is actually older then the old van but it's working for now.
In late August Jerry was signed up for a computer class and calculus 2. However we had no transportation so we were dependent upon para-cruz. The process to sign up for para-cruz took about a week so in the process Jerry missed the first 2 classes of calc. He decided it would be to difficult to come in late so he dropped the class. I wound up taking the computer class with Jerry so I could help him out, the semester went well, we both got A's. It was a little challenging because it was a night class and we were at the mercy of para-cruz and the commute traffic on the fish hook. 90% of the time para-cruz dropped us 10 to 20 minutes late to class, the teacher was very understanding of the circumstance. The semester ended in Dec, however the next semester does not start till the week of February 6th. It's been a very long break.
Jerry has spent nearly the entire break in bed, he did go to a San Jose sharks and a 49er game, he continues to go to therapy in Pleasanton once a week and had a few visits from friends over the holiday. Other than that Jerry has spent most his time in bed, not wanting to get up or go out. Jerry quit the soccer team when we were with out a van and now refuses to go back. My heart breaks for him as he becomes more reclusive, lonely and depressed, he seems to be on a downward spiral of despair. Jerry is struggling with the will to live and to find purpose for his life. Jerry expresses that he does not want to live a life in his condition, that he wants to advocate for his own death but does not want to hurt his family. Even as I type this the tears stream down my face, he has lost hope and I don't know how to help. Jerry is struggling in believing there's a God and quite frankly I'm having my own struggles in that department. I haven't lost my belief in God but I struggle to understand and accept what ever his plan may be, I've lost my desire to pray as I've come to the conclusion that God's plan will not be altered by prayer so whats the point. God has a plan ....let it play out, we are just pawns.
I've struggled with weather or not to talk about this last bit of news as well as the previous paragraph. How much should be shared and how much should be kept private? Should I only update the positive and leave the negative out? ...that's what I would prefer to do but somehow it feels fake and dishonest. I need to be real and honest, life is not always roses. So here goes Dennis and I have been living separate lives for the last year, there is no fixing what is broken and we are getting divorced. Beyond that I will leave the details out, those of you who know us well know the details, those that don't know us so well really don't need to know. To complicate matters further Dennis lost his job and as a result we also lost medical and dental insurance for the family. Dennis has desperately been searching for work, he was contracted to do a job in Gilroy, I just hope that it will lead to more work as the family is dependent upon his income for survival. The home that we live in was part of Dennis' employment, now that he is no longer employed they have given me one year to stay in the home. They have been very generous to allow the kids and I to stay in the home rent and utility free for one year. I am eternally grateful for the kindness however I'm still very worried about the future where to go beyond here.
Katie
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