A Long Crazy Day

We apologize for not getting an update up last night. We were at the hospital late because Elias was having a really horrible day. Things moved rather quickly and many decisions were made and then overturned, so it was getting a little confusing to keep up with the details. To keep things straight we will start at the beginning of the day.

We arrived at the hospital early for Kat's 6 week follow up appointment with the OB. FYI, that went fine. When we got to the NICU they were attempting to draw the 5 ML of blood again for the comprehensive Fanconi genetics test. Elias was a little fussy after their unsuccessful try, but you would expect that. He finally calmed down a little. During this down time, the Doctor came in and told us that they were going to hold off on extubation. They were a little concerned with Elias' nasal passages. His left nostril is a bit small and of course the right has the feeding tube. The plan was to remove the tube from his nose and place it in his mouth. Then wait a day or two to ensure the feeding was going to work and also to make sure there was no edema or inflammation in the nose after the tube removal. So this was now the "NEW PLAN." We were a little disappointed, but it was more because the reasoning for the change seemed to come out of the blue. It is logical, and makes sense to do it this way, but the timing to introduce it was bad. Then came his albuterol puff. This is a medication used to help his lungs. He usually gets a little irritable after this treatment because it tastes bad, but today was different. He was really getting upset. He was so fussy he worked his way out of his "baby burrito" and turned red. His legs were kicking and he was flailing his arms almost as if he was shadow boxing (he looks like he will have a mean left hook). His nurse was at lunch and we were doing everything we could to try and calm him down. His heart rate was climbing to over 200 bpm and his respiratory rate was exceeding 136, more than double his normal rate. One of the other nurses in the room came over and brought a pacifier and we introduced that to him. That seemed to work, but it would only be temporary. He really was sucking on that thing. We had to hold it for him because his vent tube prevents it from staying in. It was really amazing to watch him and the power he had sucking for the first time. Dionne, his nurse, returned from lunch and we explained what happened. We did his cares (diaper change, temperature, etc., which by the way Daddy finally got the chance to change his first diaper) to see if that would help and prep him to be held. We figured if anything would work holding him should. It did for a bit but he became irritable again. You could tell he just wasn't comfortable and the vent tube was bothering him. During this episode, which now spanned about 3 1/2 hours, he had been given doses of ativan (anxiety medication to calm him) and morphine. These were obviously not working for some reason and we could not figure out why he continued to fuss. We decided to put him back in bed and took a temperature read. It was 101.2! The doctors came in to draw blood for some tests, CBC, CBR & culture for infection. Then we noticed a "puffy" area around the surgical site on his neck where the central line is placed. This is where all his meds enter, including the ativan & morphine. The concern now was that the line had infiltrated or blown and was no longer functioning. That was the first thing all day that made any sense. X rays were ordered to check this. In the mean time Katharine is still trying to calm him down with her hands on him and talking to him. He starts to calm down a little bit. While waiting for radiology to come down, the doctors ordered Tylenol and another dose of morphine to be taken orally (through his feed tube). The x-ray on the central line showed no signs of breakage, so they ordered his meds the rest of the night be given orally. They plan to do a dye study this morning on the line to see if there is a small leak that x-ray would not pick up. This also seems to have changed the plan to move the NG tube (feeding tube) this morning. We are not sure if it is being put off until later today or rescheduled for another, either way this episode sets us back at least a few days in terms of progress. The Tylenol seemed to really help, as by the time we left his temperature was down and he was resting comfortably, finally. It was very difficult to watch him in such obvious discomfort and feeling helpless to do anything for him. It was a very exhausting day, mentally and physically. However, it made it even more apparent of how important it is for us to be there at his bedside whenever possible. Thanks again for all the words and thoughts. We love you all.