Tuesday, June 26, 2012

Trach Is Out

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,


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,


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,


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.


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


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.


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.


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.


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,