So, this post will actually be about Jaxson! Julie has been transferred to a rehab facility and is slowly regaining her strength. Sara has been moved from ICU to the step-down unit as her numbers are finally where they should be. I've been as focused on Jaxson as I can be, but now I get to write about him again.
Jaxson is fully recovered from his infections and had his PICC line removed over the weekend. He had to get another IV on Tuesday because urology wanted an additional test before we started him on an antibiotic. It was a contrast renal scan that showed how his kidneys are functioning. Initially, and this is how it's reflected in his records, the ultrasound showed that Jaxson has two ureters on his left kidney. They call it a duplicated system. However, when I talked to urology this morning, I was left with the impression that the duplicated system is actually on the right. I need to get further clarification on this to see what the actual deal is, but right now it's not a huge concern. The scan showed that Jaxson's right kidney has low or no functionality on the lower right pole. That could mean there's just some fluid in the kidney or there could be a blockage.
It sounds scarier than it is. Urology says it's common for a duplicated system to have low functionality of some kind. Basically they will do another scan in a month to see how it's doing. If it is resolving itself, they don't do anything and will check back after three more months. If it has not resolved itself then they will discuss a plan to correct it. Which will likely involve surgery. But I'm not stressing about it now because there's a good chance that it will fix itself and this will be a nonissue. If it's another surgery then so be it. But I can't even think about it right now. Right now I just want to get this kid home.
We also got word that genetics wants to do further testing for more rare causes for Jaxson's issues. I'm not surprised. I was surprised when they said they weren't doing testing, so it wasn't a shock when they changed their minds. I'm not sure what all they're looking for, but if anything comes back positive I'll deal with it then. It's just another "what if" scenario I don't want to deal with unless I have to. So I'll keep you posted as I hear more and learn about whatever they find.
So now we have to work on getting Jaxson home. Tomorrow, Jayson and I will make the final decision to have a G-tube put in Jaxson's stomach. I'm sure that we'll decide to have it done because the ony thing keening Jaxson in the hospital is his ability to eat. Because of his cleft and other birth defects, he may never gain the ability to eat a full bottle by mouth. He can't live at the hospital, so while this isn't ideal, it is what it is. When we tell them the decision tomorrow, they'll get the surgery scheduled for next week and he'll be able to come home the week after. I cannot wait to walk out of that hospital knowing that the next time I come back it will be for an outpatient visit!
We're getting closer and closer to things being "normal". Or, rather, what normal is going to be for us from here on out. The social worker came to talk to me today too. She told me about some programs that we'll qualify for because of Jaxson's medical issues and she's going to hook me up with the rep they have at the hospital so I don't have to deal with regular state run offices. Jaxson can't go to daycare for a variety of reasons, but the one that qualifies him for assistance is the G-tube. I don't know of a single daycare that would accept a child with a tube in his belly. Too much liability. Please do not misunderstand. Jaxson should be taking 150mL by mouth every day. On average, he takes between 30 and 50. So the tube is not a ploy to qualify for government assistance, it is a legitimate need in order for him to come home and learn how to function in the real world.
Physical therapy also came by today. I guess we had a busy day! Jaxson will be fully evaluated tomorrow and a plan will be set to help him learn to use his muscles. I don't think I've mentioned before that he has low muscle tone, but he does. I was given some stretches to do with him and activities to do with him over the next few months to help him develop and grow.
Every single person I've come into contact with at Children's has been amazing. We've had a few nurses that weren't my favorite, but they are few and far between. I feel that we have been so blessed to be where we are and live so close to such an awesome place. I truly feel that Jaxson is getting the best care possible and that he's going to have an excellent plan in place when he leaves. I couldn't ask for more. These people are not only good at what they do, but they genuinely care about these babies and are devoted to delivering quality care while communicating every step with parents.
You know, a lot of people tell me this isn't fair and wonder why all of this is happening to my baby. Sure, I went through that. But now that I've come to terms with how Jaxson's life is going to go, and maybe "come to terms" isn't the right wording, but I get it. This isn't "happening" to my baby or me. Jaxson is a gift. He's taught me more about life in the last month than I have learned in 30 years. He's taught me patience (don't laugh haha!), he's taught me what it looks like to fight and keep on going when it would be so much easier to give up. He's taught me what true strength is and how much of my own strength I have and how to use it. He's taught me how to feel my feelings and understand my emotions, something my logical brain just couldn't comprehend before now. He's teaching me ow to be a better person and a better mom. I am nothing if not blessed by that perfect little boy who has endured so much already.
The road ahead is going to be long and it's going to be bumpy. But I have the best people in the world at my side to travel that road with me. As long as I have them and they have me, everything will be just fine.
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