Kayleigh is hanging in there today. Her vent settings are lower than last night and she is still on the nitric oxide. Her oxygen was set around 35% and the nitric oxide is at 10. They are going to try to wean her off of both if things are looking up. She did gain some weight back (50 grams)and is now 1270 grams. The blood transfusion went really well and they have given her a couple different antibiotics to treat the possible infection.
We spoke in great length with the doctor today at Kayleigh's bedside. We are so blessed to have such great doctors there who care and will spend the time needed to make sure we really understand things well. Our doctor is hoping and feels like the issue at hand is due to an infection. But on the other hand, Kayleigh's quick turnaround of events yesterday leads him to believe it may be more. They are going to keep a close eye on her situation to make sure it is not the latter of the two. The situation he spoke of is due to chronic lung disease/pulmonary hypertension. Now this is not the same pulmonary hypertension as adults have and we were told strictly not to do our own research as the hypertension in preemies is a much different story.
I will try to explain this as best as I can. There is built up pressure in the heart and in the lungs to push blood along it's directed path. Since Kayleigh has a hole in her heart(VSD), the oxygenated and non-oxygenated blood will follow the path of least resistance through the holes in the ventricles. So if her lungs have more pressure because of the hypertension, the oxygenated blood on one side of the ventricle will pull non-oxygenated blood to its side (path of least resistance). So, If the non oxygenated blood is pulled to the other side of the heart and mixes with the oygenated blood and then sent out to the body, it causes Kayleigh's organs to get very little oxygen. The nitric oxide, relieves some of that pressure by relaxing the blood vessels in the lungs and helps deliver more oxygenated blood back to the heart and out to the body. That is why when they put her on the nitric oxide, she responded well to it very well and her oxygen saturation went from 60% - 90% yesterday.
Things that can cause this to happen could very well be (AND HOPEFULLY) an infection which can be treated and forgotten quickly or some kind of reaction to the anesthesia or pain/pain medication. If the hypertension/chronic lung disease gets worse, the doctor said we will tackle that issue when it happens. I am and most of you can take that for what it is worth, but the doctor was honest with us and said that if there were ever a situation that is irreversible, he will be upfront and honest about it. (Although it scares me that he would even bring that statement up as it could either mean he is preparing us for what's to come or that we shouldn't freak ourselves out because they don't have any answers yet.) He said there are other things that may be done, but we don't know what those are yet until we find out whether or not this is even an issue and how severe it is. We were told to hang tight and let's just get through this process of weaning her off the vent/nitric oxide and then we'll know what route we are going.
Basically, I am "guessing" and being "hypothetical" here so don't judge my words, but if this is more than the cause of an infection, things are not looking good. I say that because, besides nitric oxide or Viagra (also used for relaxing the blood vessels in the lungs)there is nothing that can help the situation and the outcome will be negative. We can not keep her on the nitric or Viagra for ever as they will do more damage than help, and the reason we are not to do any research is because there isn't many studies done for preemies with this issue as it proves fatal for most cases. If everything on the internet is for adult pulmonary hypertension, it is because there is no good news for preemies. I guess blood vessels in the lungs are similar to how they act with ROP. They run in to trouble with growth because something grows wrong when a baby is born premature. Just my guess.
Anyways, correct me if I am wrong with my guessing in the past paragraph if you know any further details about this issue or have stories of other preemies. It should give me ideas on some important questions that I can ask the doctors tomorrow. It is now a sit and wait game again and just pray and hope for the best. I know God has His reasons for everything and we are going to trust in Him through every situation.
Please continue to pray for Kayleigh and hope that this is not an irreversible situation.
The Freemans :)