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

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

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

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

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

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

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