Baby Maverick

I've been busy with Maverick and the kids. Hopefully things will slow down a little and I'll be able to keep this up better. Mav has had us on a roller coaster ride the past few days. His infection seemed to be responding well to the antibiotics and his white blood count and his CRP had decreased. However, yesterday they pulled out his PCL (his central IV) and last night he started dropping his blood pressure. They started dopamine for his pressure and he responded well to a small amount. Then this morning he spiked a temp of 39.2. I think when they pulled the PCL he probably got a big sprinkling of the bacteria that were stuck to the sides of it. That's just my opinion. So, he had a pretty rough day and of course he started getting very puffy again. They've changed his dialysis back to hourly dwells to get some of the extra fluid off. When I left tonight (Tues) he looked much better and hadn't had another fever since this morning. I think he may be turning the corner. He's had us pretty worried the past few days.

I didn't take a picture today, but I will post one tomorrow. When you see it, you'll notice his breathing tube is now in his mouth. That's a whole different story... Greg went to the hospital on Sunday during the day with Carter and the girls and I went to church. I traded with Greg that afternoon and was at the hospital around 4:00 in the afternoon. I went in and started doing my regular things - changed his shirt and changed his linen. He didn't tolerate it as well as he usually does and was dropping his oxygen saturations. He was also breathing a little harder and faster than normal for him. I asked the nurse what his H&H were (his red blood count). She said 8 and 22. I asked if they were going to transfuse him (give him some blood - in Dallas they had been keeping his hematocrit in the 30's). She went to talk to the resident and they ordered another CBC to recheck and make sure the readings were correct - they were and he finally got some blood late that evening. Well, if you don't have enough blood, you tend to be tired. He wasn't his usual awake self, but had been awake for awhile that evening while I was there. I finally left around 11:00pm since he seemed to be settling in an doing better. I got a call at 4:00am and the nurse said she just wanted to let me know that they had decided to do a CT scan of his head and during that he extubated (his breathing tube came out). WHAT? To say I was mad and upset would be an understatement. My first question was "WHAT?" The answer was,"he extubated and he was re-intubated orally." She just wanted to let me know so I wouldn't be surprised when I came in the next morning. Thanks... My sweet boy who loves his paci and was having a rough day because his hematocrit was low was going to be taken through the bowels of the hospital at 2:00 in the morning to check on his head because "he was lethargic". You would be lethargic, too, if you were used to having a crit of 35 and it was now 22. Due to someone's carelessness, he now lost his naso-tracheal tube and had to be re-intubated orally. It's hard to suck a paci being intubated that way - especially the kind of paci he likes. I couldn't go back to sleep, so I got up and dressed and went up to the hospital. When I arrived, I calmly said, "Ok, tell me how it happened." She told me, and it happened as they were unhooking him from the vent, getting ready to bag him to take him to CT at 0200am. At least they were still in the unit and the resident was able to intubate on the first attempt. I still don't quite get it though. I've been doing transport for almost 4 years and have moved many babies to and fro across the state with tubes and have only lost one. The one I lost was in the back of a bouncy ambulance with a baby that was thrashing his arms around and pulled the tube out. If you pay attention, things like that shouldn't happen - especially with a naso-tracheal tube. I then asked why they decided at 0200 that he needed a CT. She said it was because he was lethargic. I told her I didn't understand that decision and it made no sense to me. He was lethargic because he his crit was low. And she knew how touchy he had been, so I didn't see why they decided to trek him through the hospital in the middle of the night if he was in no obvious distress when they could've waited until the morning and had a head ultrasound done at the bedside. She just said the doctor wanted it done. When things like that happen, I feel like I should never leave the hospital. I didn't pursue it any further, but I'm not sure I'm letting that issue die that easily. One of my friends came to the hospital tonight and said I should let it be known that I don't want him transported anywhere in the hospital without me being present unless it is a life-threatening situation. I think that's probably a good suggestion. If you have a better way of handling it, let me know. I certainly don't want to be the mom that no one wants to deal with, but I've come to the point where I really don't care. I just want what's best for him. Sorry, just having to vent a little this evening.

What else? They did a tracheo-esophageal echo on his heart yesterday to check for vegetation again. They didn't see anything obvious. He's still on antibiotics and probably will be for quite awhile. They're probably going to treat it like an endocarditis with his history unless his cultures become negative quickly. The stenotrophamonas is sensitive to bactrim and ticar - so he's on both of those. They also sent his PD fluid (the fluid they drain from his abdomen with the dialysis) off for analysis yesterday to see if that's where he's losing his protein. He's having to get albumin twice a day to keep his level up. Surprisingly, his level was low in his pd fluid. They've sent off a stool sample to see if that's where he's losing it. They are suspecting he has a condition called "protein-losing enteropathy". It's a condition that is usually found in children who have a different kinds of heart defects after a surgery called a fontan procedure. Mav had transposition and had a different surgery (arterial switch). From everything I've read about it, though, it sounds like this is what Mav has. It would explain his low albumin levels, his edema, his pleural effusions, and the continuous need for IVIG (immune globulin). We'll have to see what the results say. They had to send his stool sample to a lab outside the hospital, so it will take several days to get the results back. There was a venous study done today - they were checking for blood clots. His little head swells up when he gets sick. That's just him, though. The preliminary results show a clot in his left femoral area (left groin area), probably from a previous central line. He had one there a while back and when it was removed, his leg turned an awful color for a day or so. That's probably why.

So, that's the catch-up for now. Greg and I are emotionally exhausted, but poor little Maverick. I just don't understand why all this keeps happening to him. This has been horrible. It's awful seeing your child go through all this. I can't believe it's been over three months and we're not closer to being home. I just have to pray that Mav will heal up quickly and that we'll have the endurance to sustain us. Sorry to be such a whiner, but that's just how I'm feeling tonight. Praying for better news and attitude tomorrow - Love you all - jc