We have just been moved up to a room out of the ER (Thursday night) after spending Wednesday night there. But we are here only for a short stay... hopefully I'm not jinxing him by writing this because I have done that before. Ian has been not tolerating his feeds off and on since Saturday. It became worse by Tuesday evening and by Wednesday morning he was pretty much not keeping anything down but some water.
Monday I took him into see Dr. Woo, his pediatrician, and she was able to make him smile and at that point he was keeping some feeds down. Tuesday, oddly enough, I had a regular follow-up with his GI doctor, Dr. Vargas. He and his fellow or resident (the guy who speaks to me before he does) felt that maybe he had something like thrush in his mouth and that's why he would get stressed out while eating and throw up. I did not agree but got the med and tried it that night. He threw it up. And, by that point, even feeding by Gtube came up.
Wednesday morning I had an appointment with a Dr. Platzger at Children's Hospital to get a second pulmonary opinion. I had emailed Dr. Vargas and left a voice mail for Dr. Woo to ask what to do if he wasn't keeping any feeds down. He was in a decent mood so I thought I'd take him to Dr. Platzger while I waited to hear from the others. Also, Dr. Platzger is very highly regarded has a wealth of experience so I thought he might have a suggestion. I've got more to say about Ian's future with him but that I'll save for another day.
He told me we needed to check his electrolytes because of his sensitive state combined with being on diuretics. He sent us down to the lab there at Children's and told me to head over to see Dr. Woo directly after. By the time I made it to the parking lot of Dr. Woo, he said I should drive immediately to the ER as his numbers were at a critical level.
I headed over to UCLA. While on our way, he was super fussy and I could see in the mirror that his eyes were rolling back a bit and it was making me really nervous.
So we began another stay in the ER. I had called the NICU to find out if any of Ian's favorite nurses were working to try to get an IV once we arrived. They tried to get Erin but her patient was really sick so she couldn't come down. So they sent a nurse from the PICU to try. No luck. We had a wonderful nurse in the ER. She actually was talking to me about her son who also has a shunt. They were worried that his vomiting might be due to a shunt malfunction. She had gone through the 2nd year of her son's life with a similar problem. She was wonderful to talk to. Just to have someone seeing things from my perspective a bit was very unique, especially in the ER.
She actually ended up getting the IV as well. Which was critical for Ian. She also got us a hospital bed, instead of the gurney we were on, so we could snuggle together. It was so sweet! He's so yummy and it's much better to be right next to him instead of having to pop my head into his crib to see how he's doing.
Made it through the night with the IV in tact. Not much sleep of course but that's a given. By the morning he was drinking Pedialyte like it was going out of style and even took formula now and then and kept it down.
I was sleeping and kept feeling this little arm smacking me. He was half asleep but kept flailing his arm about. I turned the light on and sure enough his arm was like a little balloon, filled with IV fluid. They did another blood draw to see if we needed to put it back in and luckily, his levels were much better so they waited.
Overall during the day he was better but not quite himself and had bouts of super fussiness. His Potassium levels were up to par but his sodium was still off. Also I still didn't feel right about bringing him home. I had tried to feel him solids and he took a couple bites but no more. At least he kept them down.
The decision was to keep him another night, switch his meds around a bit per suggestion of Dr. Platzger (I guess he had corresponded with Dr. Pornchi), taking him off Diuril and switching him to another diuretic that works to keep Potassium in check, and doubling his Sodium Chloride. They also saw something in his initial chest X-ray that was off but it was a bad shot so they wanted to redo it. And keep an eye on his fever.
At around 9pm is when they took us up to a room. By the time we were settled, did the xray and breathing treatments, it was 10:45 and time for bed. He was in a much better mood.
So we got a couple snippets of sleep between breathing treatments and vitals, then a heel stick blood draw at 5:30 (which had to be redone at 9 as a regular draw :-( etc. The labs came back with all levels better, his fever is holding at 101.3 and his mood is wonderful.
So now (Friday morning) we are going home! Hopefully to stay away from this spot for a while.
And as mentioned, I will update on another post soon, most likely we will be making the move to Children's Hospital for future care. Dr. Platzger's experience is just too great not to have him oversee our little complicated boy's lungs while he's still in this very sensitive state.
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