Tuesday, June 07, 2011

2 Steps Forward 1 Step Back

I was just about to sit and write a glowing report about the amazing things Aaron is doing when the nurse practitioner called to let me know of a new concern and steps they are now taking. So mixed news today.Good News: Last night both Ronny and I went up and were able to hold Aaron. They bring me a gown to wear while I hold him and close all the curtains, Ronny on the other hand says, "I'm a guy it doesn't matter to me!" while whipping his shirt off. The nurse and I both laughed. It turns out that gown helps keep some of the heat in.
The nurse informed us that Aaron had his echo yesterday afternoon, which was surprising to us as we thought it was scheduled for today. The echo showed that his pulmonary hypertension is gone and his PDA went from large to small and the blood is now flowing in only one direction. (Happy Dance!) They are now in the process of weaning him off his nitrous oxide. He was moved up to full feedings with 24 extra calories added in and tolerating them really well. Aaron's pic-line was removed and he went 24 hours without any IV's in. His caffeine and TPN had been stopped and other than 1 shot of antibiotics before pulling the line he was done with all the infusions. The nurse did mention that his urine output had slowed down so that was something she was going to watch. They had also done an x-ray on his belly because it was a little discolored and bloated. Nothing came up so the bloating is just gas. I joked that my 7 year old would be more than happy to teach his brother how to pass gas. (I won't tell him that though!)

Not so great news: Aaron's heart rate seemed to be a little high the last couple nights. It always seems to come down when we were there talking to him. He was also looking a little pale which I mentioned to the nurses and they would shrug their shoulders and say the labs look fine (the labs may look fine but he looks pale to me!). His urine output which has been amazing hit the brakes last night. This morning the nurse practitioner ran a new set of labs and his white count is a little elevated and his hematicrit was low (hmm... did I mention he looked pale?). With the decrease in urine and hike in white cells they start to worry about an infection. Infection is the new swear word so to speak, its a very bad word, one that we don't ever want to hear!

Another x-ray was taken but still everything looks good. For now they are going to start another blood transfusion to see if the numbers stabilize. They are going to do it over 8 hours this time and see what he looks like and see if his urine picks back up this afternoon. If not, they will run another lab panel, otherwise they will wait until tomorrow to run one. I asked if they planned on giving him antibiotics but they are hoping the transfusion will take care of things. They are also stopping his feeds during this and putting in a second IV to start the TPN again until they resume the feedings. So 2 peripheral lines are being put back in. If all goes well they will be gone tomorrow.

Sam had his follow-up with his surgeon yesterday. I think we were in his office a total of 10 minutes, with the doctor only about 3 (remember his office is up at Primary Children's, 40 minutes away!). He looked at Sam, asked a few questions, wrote a few notes and declared Sam fit for full activity. He didn't seem too concerned about his fever yesterday. He then told us we needed to come back in 3 weeks for another follow up. Why???? If you are saying he's good to go then why do we need to come back? Couldn't his regular pediatrician in town do the same thing? Just asking.