More Tests, More Potential Problems

I think I should have had my tubes tied when I had my C Section. I am almost certainly never having another child after this one! Not just because of all of his health issues that are going to require lots of attention, but because when you have a child with birth defects, the chances of having another with birth defects goes up. And if the doctors come back and tell me there's anything else going on with this baby, someone is going to have to check me in to the looney bin.

So today I got to speak with the doctors during rounds again. They decided that since Jaxson will not be undergoing any major surgeries while he's there, they are not going to test for prothrombin gene mutation at this time. Jaxson will have a consult with the hematology department after he's discharged and before he has his craniosynostosis (skull) surgery. Which is absolutely fine with me, I was more concerned that they knew about it in advance. That test only takes a day or two to come back, so I'm not concerned that they aren't doing it now.

That was the easy part. Then they told me that genetics wants to test for something called Crouzon Syndrome. They're testing for it because of the premature sutures of his skull bones combined with his cleft palate and other things. He may not have it, it could be that he just has these defects, but they're testing for it just to be sure. They're looking for the "why" of why he has all of these problems, and that's the most common that matches his symptoms. If it comes back negative, they might look for something else or just say that there's no genetic disorder. The syndrome is basically a protein deficiency in his bones that could cause other problems during growth, but I haven't had much time to look further into it yet. I'm not digging too much until I know for sure if he has it or not.

Then they reminded me that he has his follow up renal (kidney) ultrasound today, which they did this morning. I got a phone call with the results. The cyst that was on his right kidney either wasn't really there before or it resolved itself because it's gone. Which is great news. But his left kidney has a problem: two ureters instead of one. The ureter is the tube where the urine travels from the kidney to the bladder. When there are two, there's a chance that some of that can go back up into the kidney, which raises the potential for kidney and urinary tract infections. He'll undergo a test tomorrow to see if that is happening or not and if it is, he will just come home on an antibiotic. I'll find out in the morning if there's a long-term issue that will have to be dealt with by urology or if it's just something he has to deal with.

The final thing they decided today was to try and take him off of his oxygen. After his noon feeding, they pulled the prongs out of his nose to see how he would do. It didn't last long. His oxygen saturation dropped into the 70s (they like it over 90), so he's back on the 0.1 liter until they think he's ready to try again. The doctor said that there could be an obstruction in his airway causing him to have trouble breathing. They really don't think it's a development issue with his lungs because he wasn't that early. We have to get the ENT team involved to check that out and if there is an obstruction we need to find out where it is and how big to determine if anything is to be done about it or not.

So in good news, Jaxson has been presented with a bottle a lot more often and is starting to eat on a more regular basis. It's not a lot, but as long as he's trying I'm good with that. They're also fortifying my milk with a tiny bit of powdered formula and iron to give him more calories. The result? He's up an ounce over yesterday to 6 lbs, 2.2 oz. hopefully he continues on that trend and keeps getting stronger and eating more on his own.

I pretty much just shake my head when they tell me things now. The thing is, nothing that he has going on is life threatening or needs to be dealt with immediately. Which is great, but the next 2 years are going to play hell on my nerves and probably cause me to go gray. I'm glad that Jaxson's issues are fixable, and I'm really happy that he didn't have to have heart surgery right away like initially anticipated. I just wish that God would quit throwing curve balls at me. Every time I think I have a handle on the situation, something else comes up. So now I just shrug, shake my head and try not to laugh. Because what else can I do?