Saturday, October 15, 2016

Thursday, October 13, 2016:
Eli is having a bit of a rough time. Post-Op Day 1 is always hard. He has a low fever, has had to be catheterized a couple of times, in some pain, and is now experiencing some weakness/delays on the left side of his body.... and he can't get any sleep! All of those things are likely due to the surgery, and temporary, so pray that they are, and that he can get in a good nap that will help him turn a corner in healing. I was telling Brandon Pressnell, one of our ministers that came out yesterday, that compared to other kids in Eli's situation, he has had it pretty easy all these years. His pokes and pains have been minimal, and he has always been high functioning as far as mobility. So, he seems pretty down about it, and upset.

Friday, October 14, 2016 1 p.m.
Need more prayers! Eli has been moved to ICU bc of suspected seizures due to low sodium, they think, or just from surgery. It has been a horrific two hours. He has been lathargic, hard to wake up most of the evening, then had two kind of like a sleep tantrum to me. Looked like a tantrum, but he would not respond to any commands, and would not acknowledge me talking to him, then started screaming for me when I'm right there talking to him. That is horrifying as a mom, and he and I both were dripping with sweat when he finally setttled. They have him hooked up, and sort of sleeping now. It's been a really rough day for him.

Friday, October 14, 2016
Not many answers tonight. I’ve put off updating, hoping to learn something, but mostly what we’ve leaned is what is not a problem. Eli had another rough day, and though he was more responsive, in
that he would either shake his head to answer, or say one word answers, he continues to decline in his physical mobility (stiffening, or, lack of control or strength), including his ability to swallow, and control his visual direction. He continues with lethargy, some agitation and frustration, and continues to run a temperature. I don’t know that seizures have officially been ruled out, but it does not seem to be a popular go-to any more. They have performed a battery of blood tests, poor little guy has been a pin cushion all day, a CT, and an X-ray of his lungs. Most doctors seem to be in agreement that low sodium was a major player in the downturn. But, that is now at normal levels, and he has not improved. An endocrinologist suggests that his already compromised hormonal system stirred up the perfect storm and have inflicted him with diabetes insipidus, an imbalance of water in the body that would cause the sodium to drop. But, that does not explain paralysis, nor does it explain the temperature. One blood tests suggests he might have a blood infection, but it is not conclusive. They are waiting on some other cultures, but it will of course be 24 or 48 hours before those are complete. My theory for his neurological setbacks - keep in mind that I have had one girl scouts first aid class - is that the water imbalance began Wednesday with him not peeing, causing his sodium to begin to drop. Then he experienced such psychological and physical stress starting Wednesday night with the insertion of a urinary catheter (to say he was freaking out is an understatement), that it caused physical stress to his post-op brain, and continued to worsen the following day with more frightening, and painful procedures compounded by exhaustion from not having any sleep (which affects the brain). His paralysis started Wednesday morning, after the first catheterization. After the long day following, I believe he had a panic attack, or mental breakdown (not a seizure) finally last night, causing more neuro damage, and from which the surge of adrenaline caused his body to be sore, and begin to stiffen up today. The facial paralysis, I believe is from the neuro damage from the mental stress. The temperature, I believe is an infection. Again, that is all me, just playing theorist. I think if the temperature can go away, we can begin to heal his brain, and most of the issues will go away, or get a lot better. Sadly, until he can eat, he can’t take his medicine from the cancer trial, because he can’t swallow pills right now. So, I fear that the two tumors that are stable will have a chance now to grow with this delay in his healing. Vic is here now, and I just pray for a good night to get us to tomorrow. I’ve said before how much I hate the night at a hospital. Something about the moon, or darkness, or barometric pressure, something causes patients chemistries to just get whacked out. So, I will be glad to get to a tomorrow that might hold answers. Vic and I both have a piece of pull-out furniture for a bed, so that is nice that we can both be in the room. It is a tough atmosphere. I’m pretty sure the child next door passed away today from something I observed. God always has a way of reminding me of my blessings.

Saturday, October 15, 2015
The night wasn't too bad, not as bad as the previous night. His port stopped working, so the nurse had to put in an IV in the middle of the night. His arms and feet are so bruised from all the sticks for bloodwork every four hours. So, it was another pretty big fit, and lots of pitiful begging, which is torture for me. This is a common scene for us these last few days. We've got five camps looking at Eli: Neurosurgery, Neurology, Endocrinology, Infections Disease, and the ICU floor team. There was some disagreement about whether Eli was having seizures or not, but in the end our neurosurgeon won out and had an eeg performed on him. They confirmed that he is having focal seizures. He was immediately put on an anti-seizure medicine. The seizures are mild, he can even somewhat talk through them, and be somewhat alert. We didn't know it, but LeBonheur is the third best epilepsy center in the country, so we are again in good hands. Still lots of questions, though. Why the paralysis, why the fevers, why the low sodium (why can't one of the top children's hospitals in the country get his port to work?). So, they are chipping away at those questions. His temp has been much better today. His ability to swallow has gotten worse, so an NG feeding tube was placed to give him nourishment. Do you know what that means? It means that a nurse shoved a tube through his nose, down his throat, and into his stomach. Thankfully, he was on the meds, and was so knocked out, he did not wake up, and only squirmed a bit. Don't know what he will do when he wakes up. Another silver lining - at least his arms don't work so well while he is getting used to the tube in his nose, so he will have a harder time jerking it out. They will do a swallow test on Monday to see what of his "swallow mechanics" are working if any. He was more awake today, even trying to talk in sentences with Vic about legos, and SpongeBob, and transformers, and the car show that was today that he missed. It is both heartbreaking to listen to him trying to talk to his daddy about things he enjoys while he is enduring so much. I promised him that we would browse Amazon, and any time this morning that he would look at me, and was alert, he would say "Amazon." Sadly, he could not even hold anything right now, much less do legos. So, I could not resist a little trip to Southhaven's Walmart for some fun things for him to at least look at, and a couple of DVD's that he recognizes even just to listen to them if he can't see them (the hospital has internal movies, but the signal is sporadic, and once you've seen the four he can see, you are kind of done.) So, he is hooked up to this eeg machine, with, I don't know, 30 leads literally glued to his head, and they have a camera on him. If understand it right, there is a tech somewhere watching the readings, and the video, plus the doctor is watching the feed from home. This will help them adjust his medicine. I am deeply saddened by the development, no doubt, and am rooted on the edge of Distraught, but it is somewhat comforting to have at least one answer to something. And I am thankful to live in a time when there are knowledgeable people, and medicinal choices to treat him. Hopefully, more answers on the way in the next couple of days.

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