Carter had a great week. Everyday he seems to get a little more comfortable being home and adapting to his schedule. He was really fussy last night and didn't want to go sleep. He would finally go to sleep than wake up restless and upset 15 minutes later. He finally went to sleep around 4 am. I too went to lay down. Sean checked him at 6:30, he was awake but lying there happy. I checked on him around 7:30, he felt a little warm, so I pulled off his clothes and loosened his pjs. He went back to sleep. I checked on him several times and then again at 10 went he felt like he was burning up. When the thermator hit 102, I started throwing pumps in bags and getting him ready to do. Dr. Newton's office said come on. Hopeful it was just a fever and not a major thing, we headed to the peds office. Carter had also started to look puffy. He looked a little worse by the time we got there and they said go on to Children's. We headed to Childrens' about 25 minutes away. I probably got here a little faster. By the time we got to the hospital, Carter was blue and bearly breathing. They rushed us back and stated bagging him. They checked his CO2- it was 96, He had to be intubated. He was swelling more and more. We got him stable and he was transferred to the PICU. They began antibiotics and tests. We never got a positive blood culture, so antibiotics were stopped after 4 days. I begged them not to stop them, but they said they do more damage if left on. It only took 30 hours for Carter to spike another fever and swell again. This time we got a positive culture- Acinobactor (sp?). Never had that one before. Hospital Grade infection, so not really the intial case of all this. It's my opinon that Carter got something when we repaired his central line. We have had tons of infections without a positive culture. I wish I had had my thinking cap on and ask for a round of antibiotics just to cover. Now here we are back in the hospital and fighting against a very strong enemy. Hopefully now that Carter is bigger and stronger we won't be here too long!
I dream of the time when we have holidays at home. Carter has managed to spend every holiday in the hospital and as Easter is fast approaching, his record will stand. Not that we are Irish and not that I really care about St. Patrick's Day. Just a thought. It's been a week and a half now and we are still in ICU. Not much to report. Still on ventilator. I have told the drs about Carter's "lazy white boy syndrome". They laugh. I don't, it's not funny. He will let that ventilator do all the work. I told them they will have to kick him off! They said give it more time. Time becomes a funny thing in the hospital. It seems to fly by and yet stand still at the same time. I have talked to many other parents who experience the same thing. When I tell people we have been in the hospital over 8 months, they look at me in disbelief. I too can't believe it's been that long, but it has just flown by. With Easter coming, I can only pray Carter puts it in overdrive to get home.
Today was interesting. I worked at the shop while my mom was with Carter. She had a conversation with the attending physician. She didn't want to tell me about it, but I made her- Sat on her head and licked her nose until she talked. Just joking. Mom said she and Dr. Morris were talking about Carter's progress and Mom made the statement, "what ever we have to do keep from losing Carter" and Dr. Morris replied," In my opinion, you have already lost him." Of course, mom was so taken back from this she began to cry and Dr. Morris said she didn't mean to make her cry. Well, my question was what did she mean? So I called and asked to speak with her. She told me she didn't have a lot of hope for Carter. I told her I just didn't understand. He had been making progress everyday and showing signs of improvement. She said that I needed to understand that she had a very narrow scope of medicine and that she only sees the worst of the worst. She said she just didn't see a clear path for Carter. I told her I didn't either, but that didn't mean certain death. She explained further that many of the children she sees are able to do steps 1-5 then they have a chance of leading a normal life and she just couldn't see those for Carter. I then explained to her that none of us are guaranteed steps 1-5. Not me, not her, not Carter. I also told her that Carter had been much sicker in the past and his will to survive is something noone understands. I told her we are Christians and we believe God has an amazing plan for Carter and it is not our job to second guess that. This conversation really upset me because how many doctors have adopted such a limited field of vision. Parents with sick children live every second, every minute with nothing more than hope and prayer. She apologized to me for upsetting my family. I told her not to apologize. I respected her opinion, just didn't agree with it. I told her because she deals with the worst of the worst that is all the more reason to be positive. No one can explain positive energy and why it works, but we see work everyday. So many times, I wanted to give up, wanted to quit. People say "I don't know how you do it." I don't either. I just ask God to get us thru today and He does. I also remember Miss Scarlet and remind myself "that tomorrow is another day.'
The Easter Bunny did find Carter in ICU. He awoke to all his easter baskets. Easter is always one of my favorite holidays and today is time to renew our Faith and focus on what we have to look forward to. Carter is still intubated and out of it for the most part. Sean and I went to church service here at the hospital. I just didn't think I could deal with all the "family-ness" at our church. I told Carter about how we hunt for Easter eggs next year. Maybe since we don't have any major holidays coming up, Carter can be at home for awhile.
