Dear Son Update-Out of the ICU

Dear Son was transitioned last night to a regular Peds floor. They want to see how he will do with less care. Currently, he is still on 3 liters of oxygen via a nasal canula, receives chest pt via the vibrating vest along with albuteral every three hours. What is still problematic is the chest x-ray. Monday, Dear Son had perked up and on Tuesday, they didn't feel he needed a chest x-ray. I wasn't comfortable because I hadn't see consistency in the chest x-rays and asked if they could do one. They did it and the findings (Findings are the clinical impression by the radiologist.)came back unchanged, but in viewing it, I thought it looked worse because the left lung fluid had increased and the right lung fluid was down whereas the prior day's x-ray showed similar amounts of fluid in the left and right lung. Yesterday they did a chest x-ray (without my prompting, lol!) and the findings on the chest x-ray were worse than the previous chest x-ray. The left lung showed increased collapse and fluid and the right lung still was a bit worse as well. I typically ask to see the chest x-rays every day and I always read the impressions and the findings as well as listen to what the Attending Doc tells me. I would like to see some stability in them with the chest x-rays being the same or better on a daily basis and they agree. Also, while he seemed himself on Monday, he was more subdued on Tuesday. He did have his eyes open but was very quiet. Yesterday, he slept virtually the entire day and opened his eyes only a few times. I would have preferred to see him more alert and active on Tuesday and Wednesday however his behavior seemed to mimic the trend of the chest x-rays. They were concerned as well which they verbalized to me which is why they kept him in the ICU a bit longer. They still were unsure up to last night as to whether he could manage with less nursing care on a regular peds floor and were debating a "step down" (A step down floor is a step down from the intense nursing care of the ICU but more care than a general pediatric floor.). Going forward, they are content to do chest x-rays as needed. They also feel sitting him up would help with the fluid. Since I can't lift him into a chair, Dad came down to lift him into the chair. The hospital has difficulty locating their hoyer lift and while they do have a four man "lift team", the last time I tried to use them to lift Dear Son into his wheelchair for discharge, they couldn't locate the team and only one guy showed up. Some time later a second guy showed up and they said they couldn't lift him and asked me for help. Still unbelievable that in 2009, a level one trauma center for peds, that cares for medically complex children like Dear son, doesn't have hoyer lifts on every floor or even the ability to locate one.

On a better note, the central line has been removed and he has completed his course of Zosyn (Last week, he was on Vancomycin as well but that was discontinued).

Today, we have our follow up appointment with the Neurosurgeon that was scheduled at the time of the operation. He never came to see me after the surgery or while I was there which would have been nice. I think in light of the situation, a little face time with me would have gone a long way. He did show up briefly last week, when Dad was there, and stated it wasn't as bad as he was told, which probably wasn't the best statement to make in light of Dear Son's fragile condition. The fact that he remained in ICU for ten days and the endless discussions over the intubation and whether or not they could extubate, along with everything else, including the recommendation for pallative care, would be very hard to make a case that he wasn't "that bad". On the flip side, showing up and having a conversation with me over the surgery, would have gone a long way. I don't expect things to be perfect, but I do think in this situation, that while a neurosurgeon may not have been able to predict the mucous plug and lung collapse, I do think he could have made a better decision regarding the general anesthesia versus the heavy sedation which prompted the lung collapse.

Next steps are to get an extended EEG, seizure labs, see if he can manage with less care on a regular peds floor and to meet with the pulmonary specialist to see what is needed so we can go home. Ped Neuro Doc mentioned the possibility of being released on Sunday but I'll have a better idea when he gets back in town tomorrow. Dear Son will probably get a Nissen done in about two months or so, or whenever he had recovered.

Thank you again for the good comments and information on the last post and for your continued prayers and support.