Things with Jaxson have steadily been moving in the right direction. My last post talked about how he was cleared by cardiology for all of his surgeries, and he doesn't have to go back for a year. That news had me elated, and still does really. The biggest concern we had for Jaxson has become a nonissue, and everything else is either fixable or treatable.
Following the cardiology appointment on the 14th, I took him to hematology the following Monday. It was not a good experience. I may actually seek a second opinion. The doctor told me he didn't recommend testing Jax for my disorder. Then looked at me until I asked him why. Jerk. I mean, really? You already know I'm expecting the opposite, so why make me jump through hoops to get the answer? He said that blood doctors are actually shying away from testing kids for the disorder for a variety of reasons, but the one he cited was Jaxson's ability to get life insurance. Excuse me for a second, but are you fucking kidding me? I laughed in his face and asked if he had looked at Jaxson's other issues, and he said that maybe it didn't matter for him. I thought, really? You clearly haven't look at at his records. How are you going to meet with a new patient without looking at his records? I was beyond irritated. So he's going to have these surgeries and no one is going to know if he'll clot too much afterwards. Yeah, I think I'll get a second opinion. He gets a clot in his brain from his skull surgery and I'll sue the crap out of that guy!
Anyway, after that we actually got some more good news! Thursday was a day from hell for me. I got Jaxson to Children's at 8:30 for a kidney ultrasound. Then we went down to nuclear medicine to have a contrast dye scan on his kidneys to see how they are functioning. Then it was up to the urologist for the resutlts. 3.5 hours later, Jax still has some swelling on his right kidney, but it's better than it was a month ago. And his kidneys are functioning fine. So we got to stop the amoxicillin, which is good! He goes back in December for another ultrasound to check on it again, but overall the visit was positive.
Now I'm going to take you back two posts to Jaxson's audiology test. I got the report in the mail last week and it just brought up memories of the visit and how I just didn't have a good feeling about how it went and the way we were treated. So I got in contact with an acquaintance (friend of a friend), who is an audiologist. She read the report and basically reaffirmed my feelings. She recommended that I go to Cincinnati Children's as they have a really good audiology department and apparently this is not something that Columbus Children's is really known for or good at. So we have an ENT appointment on October 15th and I think I'm going to try and schedule a visit to Cincy the week before to have that test repeated.
Jaxson's next appointment is on Wednesday when Franklin County comes out to do their developmental assessment as a referral from Help Me Grow. They'll provide home-based physical therapy, occupational therapy and possibly other therapies as needed. After that (as of right now) he doesn't have any other appointments for two weeks. I'm about 99.9% sure that's going to change, though, as his 3D image on his skull and spinal MRI have not been scheduled. And we'll have to meet with genetics after that. But this week will be relatively easy with just the one appointment and they're coming to the house.
Jaxson seems to be doing very well overall. He weighed 9lbs 11oz when his g tube got changed yesterday. He's been smiling more and awake more, and he's been taking more food from his bottle. We've been able to check off cardiology, hematology and surgery clinic from the list. Urology is no longer a worry, just something to keep tabs on. He seems happy most days, and that's really all that matters!
Jeffrey is still pretty sensitive and wants a lot of attention, but he's getting less whiny and starting to not be so clingy. I'm sure that's partially due to him adjusting to having a brother and partially due to us trying to make sure we give him our undivided attention as often as we can. He still loves going to the clubhouse at the hospital when Jaxson has an appointment, and sometimes he even asks to go there. He cracks me up on a regular basis and shows me every day how smart he is and what an angel we have in our house. I truly could not ask for a better kid to be Jaxson's big brother.
As for Jayson and I, well, we're tired. I get up and go to work 40 hours a week and try to give him as much of a break as I can when he gets home. We alternate nights taking care of Jaxson depending on my schedule. I just hope that Jax starts sleeping through the night soon because I'm not sure how much longer I can function on 3 hours of sleep or less! But really, if that's the only complaint, I think we're doing okay. Oh, there's always money problems and way too many a bills to pay, but I just choose not to think about it. Good or bad, doesn't matter to me right now. It's overwhelming to even consider what we owe, so I'm just crossing my fingers that Jax gets approved for Medicaid and it becomes mostly a nonissue.
Jaxson's ride is still in the beginning stages. I'm trying not to think about how fast his first surgery is sneaking up on me. Most everything has been so positive that I'd rather focus on that. And keeping my family happy and healthy, which is what will keep things normal for the kids. So for now I'll be thankful that there's only one appointment next week and maybe we can get some semblance of normalcy for awhile. That will help everyone relax and distress. Which is exactly what we need.
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