I almost deleted my last post because it sounded whiny. Almost. Then I realized that I need to keep track of how I'm feeling, so it's good to keep those posts and look back on it. I did start to feel better after I wrote it, though, which is the purpose of this blog, so that's a good thing. And I'm feeling better today than I have in a few days. Mostly because I got more information as far as Jaxson's surgeries go. And, thanks to a friend of mine, I got my hair done for free this morning. My hair has gotten darker since I've had kids, and I'm definitely blonde again :)
So, Jaxson has three surgeries planned for the next year. In the next couple of months he will undergo skull surgery. Disclaimer: some of the information from here on out may be hard to read. I met with the plastic surgeon today to discuss the process for his skull surgery. There is a team of doctors that will be aware of what is going on, and aside from the plastic surgeon, the neurosurgeon will be in the operating room when the time comes. Each doctor will be watching their own part as well as watching each other and communicating through the whole procedure. The plastic surgeon will make an incision that stretches over top of Jaxson's head from ear to ear. It will be hidden by his hair that way, which is nice. They then remove the fused bones and put them back how they go. He will need a blood transfusion and there are risks with the surgery, but not as many risks as not doing it. The good news is that I have the same blood type as Jaxson, so I could be a potential donor. We have a request in to hematology to have a consultation as well as to have him tested for my gene mutation that causes clotting. The skull surgery will take about 4.5 hours and he'll spend 4 days in the hospital recovering. The biggest complaint that most children have is that within 24 hours after the surgery, their eyes swell shut for two days. On the 4th day, when their eyes open back up, is when they get to come home. This is the surgery that worries me the most. It will be his first one and it's a pretty scary procedure given what they have to do. I fully trust the doctors that I met with today and I know Jax will be in good hands, but it's still scary as a mom to know that something like this is in her child's future.
The next surgery will be his spinal surgery. I have not met with neurosurgery yet, so I'm ot sure of anything with this one. I just know it takes place around six months of life and has become a more routine surgery over the years. I'm sure I'll have concerns about this one later, but for now it's just waiting to meet with the doctor.
Jaxson's third and (hopefully) final surgery will be to fix his cleft. This one will take place between 10 and 12 months. The doctor who does Jaxson's skull surgery will be the same doctor who fixes his cleft. They call it a partial cleft because it doesn't go all the way to his lip, and when they go in to fix it, they will just basically sew it together. Right now, the reason he's having trouble eating is because when he tries to suck, he can't create enough negative pressure. It's basically like sucking through a straw that has a hole in it. Which would severely annoy me and piss me off. So I'm trying to be patient and work with him with occupational therapy, and someone els from the cleft team is going to come and help work with me on his feeds.
Poor little Jaxson is going to have a rough first year. But you know what? It could have been worse. It could have been heart surgery number one in the books by this time with more in the future on top of everything else. So I'm trying to be grateful and thankful that he's not having to undergo more than what he has coming. It's still hard because my teeny little baby is going under the knife at such a young age and I'm having trouble wrapping my head around it. And then I consider that there's still a possibility of heart surgery in the future (although not in the first year) and it just makes me crazy to think of the hurdles Jaxson is going to have to overcome. He's got some good genes though. The Burks' and Sanderson's are nothing if not stubborn fighters, and Jaxson is already showing that he's got that fighting ability. And he's in the best place he can be right now, with some fantastic doctors helping him fight.
Today was a much better day than yesterday. And I have to realize that it's okay for me to break down. I cried on and off all day yesterday, and I'm not a crier. I'm not emotional. But this is my baby. And I am a mother, fully capable of loving my children more than life itself. And it's okay that I show them that. It's okay that I let my emotions show once in awhile. I am only human, and no matter how strong other people think I am, I know I am weak. But with the love and support of my family and friends, I can be strong. And with Jayson by my side, I can do anything.
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