Wednesday, November 13, 2013

Hospital Update

Okay so I thought I might take the time to update everyone on Kannon while I have the time to do so since I have many wondering how he is doing. I will start from the beginning. Sunday: Zach, Kannon, and I all went to Quail Springs Mall after church. We weren't there 30 minutes when I noticed Kannon's hands (nail beds) looked blue. Panicking, I flipped open his stroller/canopy and his face was pale white and sweaty. I checked his feet and they were freezing cold and also had a blue tinge. I rushed over to Zach and had him look him over and we both left immediately. Driving 90 to nothing with our hazards on trying to get him home and on some oxygen. When we initially got home and put him on his pulse ox his oxygen saturation was 45% and continued to drop to 39%. Once we got him on oxygen we cranked it up to about 4 liters. Called his pulmonogist to tell him what was going on and he thought kannon might be having a bronchospasm (pretty much an asthma attack on roids) once we got him stable we were able to wean him down to 1 liter of oxygen. The next day Kannon still seemed to be pretty out of it, lethargic. I called the pulmonologist again and he asked us to bring Kannon in so he could take a look at him. When we got there he said Kannon sounded great, moving oxygen throughout his lungs. But he went ahead and had us get and x ray of his chest just to be sure there wasn't any pneumonia or something else. Turns out he had infiltrates in the left lung with a tiny bit of pneumonia, so he placed Kannon on an antibiotic and a steroid and we went home. That night he did well, still sounded great too. At 6:30am Tuesday morning he threw up his feeding. And then he threw up his feeding again at 10:30.  (We feed him every 4hrs on the ketogenic diet, sorry if I'm losing you here, but bare with me). At this point I am getting a little worried because on his diet he doesn't have much wiggle room for dehydration. Everything is SO strictly regulated it's borderline insane. No sugar, no carbs. But for his diet they like to keep his blood sugar in the 40-50 range to keep him in a "ketotic stage". That's to keep his seizures from getting out of control. So if he isn't able to eat because he is throwing up, we have bigger problems beginning other than just the usual dehydration. So at 12:30 we decide to give him pedialyte diluted with water to try and keep him hydrated, but diluted enough that we don't throw his blood sugar above 50 and take him out of ketosis. This typically isn't a feeding time, but we needed to get him some sort of fluid. And He kept it down. Hallelujah! Then, At 2:30 (which would be his next feed usually) I decided to check his residual. Which basically means I check to see if his stomach digested what pedialyte we gave him at 12:30p. And when I checked, he had pretty much the entire amount that I gave him at 12:30p still sitting in his stomach. Not digested. Just hangin out. So I can't give him 2:30, or else his belly will get too full and he will throw up once again. So he now has thrown up his 6:30am, 10:30am, not digested the 12:30pm, and missed the 2:30pm. So I called the pediatrician and asked to bring him in and maybe check him for the flu. So we took him and they ended up testing for flu, RSV, and strep. Positive for RSV....seriously? We were totally blindsided by that one. So we take him home, at this point teetering on the edge of admitting him in the hospital or not. Respiratory wise he sounded fantastic so we took him home and decided to give his 6:30pm feed and medications a shot. I fed him a very TINY amount (30cc's) of formula and gave him his seizure medications that he typically would get. So I checked his residual again after some time had passed by just to see if it was digesting, and I got more back than what I initially put in his stomach, which meant some of the 12:30 was still sitting in there, STILL not digesting! We called his neurologist and she said basically since his belly isn't digesting, he isn't getting obviously any nutrients and getting dehydrated, but he also isn't digesting ANY of his medications! So seizure meds, sick medications, nutrients.  And on top of all this, all day he has had a fever, that isn't going away. So to the hospital we go. That way we could put all meds (or most) through His IV. Through the night we didn't feed him anything at all. And he actually slept great, no restlessness. And his fever was gone. Then this morning at 6:30am we had to give him a seizure medication through his belly that couldn't be through IV. He tolerated it just fine. But then the next time we took his temp, it was back up again. So now we have a fever again. :( At 10:30am we decided to feed him formula, just a tiny bit, to see how he would tolerate it. He kept it down, but his belly started really bothering him again. He was unable to get comfortable and was restless, we could tell his belly was hurting just with that little bit in there. So they gave him pepsid (an acid reducer) to help with the agitation and within 15 minutes Kannon was able to rest. So because we still haven't been able to feed him really we had to check his blood sugar and it was at 30 (too low!) So we opted to give him 10cc's of pedialyte to help bring it back into range. And when they checked an hour later it was still at 30 again. So we gave him 15cc's of apple juice (something that's not too hard on the stomach, but should be enough to bring him within range again). All while this is going on we still have had a fever, and Tylenol isn't being digested through the belly, so we had to give it another way. Also, while this is all happening he is beginning to have more seizures. Probably from being sick, so it lowers the seizure threshold, and from his blood sugar being out of range, which can contribute along with other factors such as not eating, and the change and additions of new medications. So far we have had a total of 6 seizures today, most lasting 30 minutes, and that's with getting Valium and adivan. After we gave him the apple juice to help spike up his blood sugar, he started having a seizure again, and then started coughing at the same time, and just about threw up again (yup, all while having another seizure)...he managed to keep it down though. So we were able to check his blood sugar an hour later and it's now at 43. But we had to check it again in 2 more hours to make sure it was not going back down or if it was staying stable. We check his temp again and finally it is down, so no more fever again...and they just checked his blood sugar again and it came back 34, back out of Since he isn't able to eat at all, the blood sugar, seizures, and fever are an on going battle. We have been communicating with kannon's dr's in houston. They are helping to keep Kannon regulated (as much as possible) on the diet, without actually receiving the food for it...and they are helping to give the right medications, what to watch for if he is abruptly taken off the diet etc. We are running labs in the morning to rule out any pancreatitis issues. So we are praying this all is just a major stomach bug, and that Kannon's belly is being stubborn. One thing I would like to point Kannon has RSV pneumonia (!!!!) And he is kickin butt and takin names!! He has remained amazingly stable on just 1 liter of oxygen and saturation is consistently been100%. Everyone in the hospital is thrilled to see how well he is fighting this off respiratory wise, and We are too! Now, if only we can maintain that part of it, and get his little belly working right and eating good...much needed prayers tonight before you go to bed! He is our lil fighter and is doing so good despite all that his little body is exerting right now! So amazed at his strength.