What a weekend. Things have been so crazy with Sara going to ICU last week with clots in her arteries and trying to get Jaxson taken care of while juggling Jeffrey as Jayson bounces between two jobs. Yeah, it's a little nuts. Sara was finally induced this afternoon and should have her baby this evening, so tomorrow is going to be even crazier than today was!
Anyway, let me start with Jaxson. I have been getting increasingly frustrating with Jaxson's inability to eat because his respirations have been so high. He started out at 5mL and each day dropped to taking less and less. Today when I tried to feed him he didn't take anything at all. So I asked the doctors about it this morning and they still say there's nothing wrong with his lungs, but they agree that he should be recovering more by now. It's possible that there's a small obstruction blocking the flow of air, and that obstruction could be caused by his cleft. We won't know until someone from the cleft team comes down and talks to us. And that means that there is still no timeframe for him coming home. He has to be off of the oxygen (which I think is doing nothing at this point) and he has to eat his bottles consistently before they'll let him leave. It's so frustrating to watch him labor to breathe when he reacts to the bottle and he definitely wants it, but his little body just can't handle the challenge. As his mom I just want to do it for him and make it all better, but there's nothing I can do about this one.
In other news, we got some of his test results back. Hs chromosome count came back normal(yay!) but the genetic test they did showed that he had a deletion on chromosome 15. At this point, they don't think it means anything. Jayson and I have to go get tested to see if either of us have the same issue or if our genes could make that issue to determine the likelihood that it's actually a problem. The geneticist actually said that even if our tests don't show anything that they still don't think it's anything. People walk around with extra and missing chromosomes all the time and don't know it. And this test has only been around for 5-7 years, so a lot of times they get this information and don't really know what to do with it. He also wants to follow up with Jaxson and keep tabs on him because it's not horribly abnormal for a baby to be born with one major birth defect, but to have more than one is apparently an anomaly. He got the Sanderson gene for stumping doctors apparently! And they requested permission to take his picture and use it for research and publications. I have a cute kid, so I signed the consent form. If it can help another kid in the future, all the better.
After I left today, Jaxson had a very busy afternoon. The neurosurgeon came down and looked at him, but didn't say much to the nurse. Plastic surgery came down and looked at him too and someone from their team will be back tomorrow at noon to chat with me. He got taken down to have the CT scan on his skull, so hopefully I'll have the results for that tomorrow as well. Then, since he didn't cooperate at noon, OT came back at 3 to feed him again and wouldn't you know he ate 10mL for her! Little brat haha. I'm so happy that he did well! I know it was because he was more relaxed and his breathing was unr control, which also shows that he CAN do it. Just gotta get that breathing down and he'll be taking a full bottle in no time :)
So after my weekend frustrations, I got some answers today and Jaxson made a bit more progress. I think they're still going to do an MRI on his brain and spine before he leaves, unless they included that in the CT today. It was a good day for Jaxson and I've got a plan for a routine for Jeffrey and I. Mornings at Children's and afternoons with Jeffrey. Jeffrey seems in much better spirits since he spent so much time with me today, so hopefully that will continue.
I actually feel rested today. I got a good six hours of sleep last night and took about an hour nap with Jeffrey today. Plus, with all the good news, I don't feel so defeated and hopeless. Everything is going the way it should. My body is cooperating to give Jaxson the one thing I can give him that no one else can. Jeffrey is starting to come around and adjust (I think!). Jaxson is still improving on a daily basis, no matter what lies down the road. Jayson has been absolutely amazing in taking care of the house and bouncing between two jobs. I have amazing friends and family that take fantastic care of me, whether it's an ear to listen or having me over for a relaxing dinner or helping out with Jeffrey or offering me a free hair appointment, I always have someone who's checking in to see how I'm doing and asking if they can help. There is so much love and support in my life, I just know I couldn't do it without any of you!
Plus, as much as I'm dealing with regarding Jaxson, now Sara is about to have her baby (hopefully tonight!) and then she'll be stuck in ICU at Riverside until they can get her blood under control and make sure she doesn't lose any finger tips. So tomorrow's plan is to hang out with Jeffrey in the morning while Jayson goes to get a sweet rocking chair from my grandpa (speaking of awesome family, he's GIVING me his old chair that was like $600 because he bought a new one and didn't want to throw it out! He's great!), then go see Sara and the baby and head to the hospital at some point to feed Jaxson and see him for a bit. It's a flip-flop of the schedule I want, but that's okay as long as I see my boys.
As I wrap this up, I'm looking at Jeffrey who's asleep on the bed next to me. I can't believe how big this little boy is getting! He's built just like his daddy but he handles stress just like his mommy. That means he doesn't eat and he has meltdowns after bottling up his emotions for too long. I swear I did not teach him that! But he's such a great kid, I couldn't ask for a better son. He's my perfect angel and an awesome big brother already. I can't wait to watch my kids grow up together!
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