Brody has contracted 2 different viruses. The first one is known as CMV and he apparently contracted this before surgery. We spent that one night in the hospital at the begining of January where they did a complete work up and this came back positive from that blood work. They said most people have CMV and don't even know it. If you were to go to the doctor they would just say you have a cold and you would never be tested for it. He was only tested because he was in the hospital and already had a compromised immune system. He gets IV meds twice a day for this and they check his blood weekely to determine when they can switch him to oral meds. While in the hospital, he somehow contracted RSV. Apparently the vaccine he gets every month to protect him against it was not effective. They said a lot of the time vaccines aren't as effective in kids with weakened immune systems. Because he has this he is on contact precautions. While in ICU we had our own private room (with a tv) which made ICU life a little easier. Whenever nurses or doctors come in to mess with him they have to wear disposable gowns and gloves. He isn't on any kind of meds for this, they just let it run its course and manage side effects. The good thing about both of these viruses is that he hasn't had any complications or side effects from these. If you didn't know he had it, you wouldn't be able to tell.
After 2 weeks in ICU, we made it to the floor! This is way better than the 10 weeks we spent in ICU last time. Our biggest struggles are our meds and feeds. Before going home we are trying to get him off some meds he doesn't need anymore and trying to work on our feeding. Eating has always been a struggle and it really isn't going that well. Brody will barely take a pacifier most days which is very different than pre-surgery. We started working with his occupational therapsit and we can't get him to take anything by mouth. At this point, we are able to rule out his heart as being the issue behind the feeding issues. We started him on some solids and he has done awesome with that. The doctor says he may just be one of those kids that goes straight to solids and sippy cups and never take a bottle. Sounds good, but the problem is we are still a ways away from that point. In addition to not eating, he is having some serious reflux issues. After or during almost all feeds he is spitting up quite heavily. It really breaks my heart to see him going through thatThere are still decisions to be made and hopefully we can figure out everything soon so we can get home.
On a different note, February 7-14th is CHD (Congenital Heart Defect) Awareness Week. In the time I have spent at the hospital and talking to people a large number of people never knew their baby had an issue until something went wrong. The fact is 1 in 100 babies are born with a CHD. That is a crazy statistic because you think you would here more about it, but you don't. In utero, at about 20 weeks the heart is developed enough to check for defects. The biggest thing they will check for is to see if it has 4 chambers. When I was pregnant they said if you can see all 4 chambers, you can rule out a number of very serious heart defects. After delivery, they can do a very simple test to check for heart issues called a pulse oximeter screening. They put this little probe on the bottom of the foot or hand and check to see how much oxygen is in the blood. If there isn't enough oxygen, this can point to a possible heart defect and can lead them to ask for further testing. It really is quite simple. The state of Texas passed a law last year requiring hopsitals to perform this test on all newborns and soon this should be implamented state wide. Be proactive and ask about the heart during ultrasounds, and ask for the pulse ox screening once the baby is born.
He looks great! SO glad the RSV is under control.
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