We were told yesterday that Cael has adrenal suppression. Basically, his pituitary gland, which created adrenaline and steroids that the body needs is not producing any. This is probably due to the steroids he was on for so long for his lungs. When he was on those steroids, his pituitary gland basically turned off, since it wasn't needing to make any of its own. Now that he is off the steroids for his lungs, his gland hasn't kicked back in. So now he is on more steroids, just to bring him back up to the normal level he should be at.
His calcium levels were decreasing, but then today it went up a little bit again. They still don't know what could be causing it. I think they are going to try some new medicines to see if it will help. Right now he is getting a deep muscle shot every 12 hours, called calcitonin. This medicine is supposed to help absorb some of the calcium. He is also on lasiks (diuretics) to help him pee out the excess. And lots of fluids. Since he pees so much, they have to pump him full of fluids to keep up. However, it doesn't seem to be quite enough. He has dry lips and a really dry mouth. So it looks like they will be bumping up the amount of fluids he gets today.
His heart rate is still very high. He is sleeping now, and it is in the 160s. It should be down near 100. When he is awake, it is in the 180s-190s, and when he is upset, in the 210s. Those should be in the 140-150s and 170ish. There are a few reasons they think he could have high heart rate. One is dehydration, which is indicated by the dry mouth and lips. To address that, they are probably increasing the fluid intake. Another is his high respiratory rate. While asleep he is around 45 breaths per minute, and awake is 70-80. It should be much lower. For that, they put him on a high flow nasal cannula. He is getting 8 liters of air pushed into his little nose every hour. When he was on the oxygen, and we were weening him, he was down to 1/4 or less liters per hour. He hated it at first. He wouldn't even breathe through his nose - he would just open his mouth and breathe. Poor guy! The high calcium and the low adrenal stuff could also be causing it, but he has been on steroids for a day and it hasn't helped, yet.
Lastly, he is still throwing up a lot. But on the plus side, he actually seems to be hungry occasionally. He ate 2 times today, but threw up after each one. Even after throwing up, he was still reaching for the bottle though. They have gotten rid of the zantac and replaced it with pantoprazole. I think the new one is just a better medicine for indigestion that Zantac. They also have him on zofran and adavent as needed. I'm not sure it is helping, since he threw up twice already today. Those were both after food, and not just at random times though, so maybe it will get better.
Today he is gettin an ultrasound on his head to see if there is any swelling or extra fluid that might be causing the heart rate problems. If they can't find what they need there, they will do a CT. If they do the CT, I have asked that they get the chest also. They will need a chest CT soon to continue the transplant process, so I want as few CTs as possible. He's already been exposed to so much radiation already, I want to try and minimize it as much as possible.
As for the transplant, it looks like the next step is a CT. As long as his lungs don't look worse, the allergy and immunology doctors will talk with the transplant team about setting a date for transplant. Fingers crossed all this stuff gets taken care of soon so we can continue the transplant p
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