Saturday, January 26, 2008
We're day 33 in the hospital!! Needless to say, we are all ready to go. On Thursday yet another culture came back positive for bacteria. At this point Dr. Mitchell decided that it could be one of two things causing the infection. The fist thing he wanted to rue out was an infection that could be around his heart. They did another echo cardiogram because the last one they did here didn't have a good reading. The second and most likely cause was that his port was infected. If the echo came back okay, then the port had to come out. The echo was okay and so Elijah was down in surgery at 0630 Friday morning. I was able to be in pre-op with him, but eventually had to pass him off and it was so sad. I had to listen to him cry for me all as they walked down the long hall to the surgery room. There was nothing I could do to comfort him, and that is so hard. The surgery went well and only took about 30-45 minutes. The surgeon (Dr. Lobe) came out and talked with me after he was done and said that he saw a clot in the port that looked like it was probably the source of infection. Unfortunate that Elijah had to go through another traumatic experience, but if there was anything good that had to come from this it would be that at least they found what was causing his fevers so we could fix it and move on to the next hurdle. Elijah has been fever free for over 24 hours now and we are hopeful that he will stay that way. We could tell that Elijah was having some pain from the surgery yesterday, so they gave him some pain medication at about 0930 and he slept until almost 1430. This was awesome to finally catch up on some zzzzzzz. Elijah has a big pressure dressing on his chest from the surgery that will hopeful come off on Sunday morning. They were able to start an IV in the surgery room after Elijah was already asleep, which was nice (one less poke that he didn't have to experience). However, they aren't necessarily use to working with pediatric patients long term and didn't take care in taping the IV very well. Yesterday afternoon, we noticed that he was bleeding from somewhere and his IV had fallen out. So I guess so much for him not having to experience another poke!! They started an IV and luckily got it on the first try. I was only going to give them one try and if they didn't get it, I was going to have them call the life flight nurse to come and do it. That's only fair. When I work I only give myself at most two tries, but of course I almost always get it on the first, HaHa!! Elijah seems to be doing much better today and at least woke up in an okay mood. This will change I'm sure, but we take every good moment that we can get. Yesterday was also his last day of Steroids!! YEA!!! I can't even begin to tell you how exciting this is. I guess since we had to be in the hospital for this long, at least this round of steroids was all here and I didn't have to deal with him at home in reality. He started eating much better yesterday, really since he hasn't had a fever. Yesterday they did a lab that checks for his nutritional status. It was very low, which doesn't make since because he has been on the IV nutrition. The only theory the Dr had was that when he was having fevers constantly, his body was burning calories like crazy. He wanted to redraw the level this morning to see if it was up before he changed anything. Hopefully since he was eating some yesterday, that will help. Elijah will have this regular IV for now, and they were going to try and have someone come this weekend to do the PICC line. If He doesn't get the PICC line this weekend, he will get it Monday along with his bone morrow. He didn't have his bone morrow yesterday because he was just coming off an infection and Dr. Mitchell said we would be really sorry if he got an infection in his bone morrow. Apparently it won't make a difference to wait a couple of days. Dr. Mitchell said if everything goes perfectly this weekend we could maybe go home after the bone morrow on Monday. I would love to look back at all of these posts and see how many different discharge dates we have had. I'm not holding much hope for Monday, but we'll see. Regardless, we will be going home on IV antibiotics for several days. We will know after the results of the bone morrow on Monday what the next course of treatment will be. After the bone morrow on Monday, he will officially be done with the "Induction Phase" of his treatment. That's all for now. Things are definitely starting to become routine to all of us, and we are finding out what our new normal will be. Love you all!!!