Jaxson had his surgery on September 18th, which is also my dad's birthday and two days before my parents anniversary. His knack for timing reared its ugly head once again. But, because my family is awesome, my parents were at the hospital and so was Sam. Sara, God love her, kept Jeffrey for two nights and three days for us. It was a much bigger help than I'm sure she'll ever realize! Everything went according to plan on the day of surgery and they did not think they needed to give him a transfusion. I had previously talked to the doctors about his pain regiment after surgery because I did not want another situation like the last one. If you recall, I wasn't feeling well and had to go home so Jayson stayed the first night of that surgery. Jaxson cried for about 20 hours straight. Only after the pain team came in and we had him on Tylenol, Oxycodone and Dilaudid as often as he was allowed to have them, and it still took almost a day to get his pain under control. The doctors mostly listened. They ordered Morphine instead of Dilauded. I let it go at first because if he could get by with something a little less strong, then that's the way I wanted to go. Jaxson, being Jaxson, said no dice. I attempted to go home that night, but only made it there for about an hour and a half before getting a call to come back. The nurses weren't coming and Jaxson had been crying for 30 minutes. On my way out the door, I called and spoke with the nurse, pretty sternly. She wanted to give Jaxson morphine even though he couldn't have it for another hour. Her boss ok'd it, she said, and it would work faster. Well, don't you think you should check with the parents before doing something like that? And if you had given him his pain medicine on schedule, then we wouldn't have been in that predicament in the first place. So I ended up staying that night and sent Jayson home. The next day, Jaxson did end up needing a blood transfusion because his hemoglobin levels dropped to 6.1 (Normally 10.5-13.5) and then he was moved up to the floor. The rest of the stay was pretty easy, well, as easy as you can expect I guess. I learned how to do the distraction on Sunday and on Monday Jaxson had elbows put on his pins so that they wouldn't stick straight out. We were finally allowed to leave on Tuesday, and let me tell you how excited he was to be home! He was up an moving around as soon as his little bottom hit the floor. It was so good to see him act like his normal self after being stuck (literally) in a cage for a week.
Since we've been home, the distractions have been going pretty well. We had our first breakdown a few days after being home. His left pin would only turn 1.5 times. The right pin turned 3 like it was supposed to. And Jaxson screamed like we just broke his leg on purpose. It was awful. I sobbed for like 10 minutes, Jayson took Jaxson outside and poor Jeffrey ran back and forth trying to figure out why everyone was crying. I'm tearing up thinking about it. That sweet little boy came right over to me and put his arms around my neck and gave me the best hug. Which was amazing. And I cried harder. Now when we do the distraction, Jeffrey disappears to the basement and Jaxson cries as soon as he sees the bag with all of his stuff in it. He knows that when daddy gives him his phone and holds him a certain way that he's going to hurt. And getting the screwdriver (there's no better term for it, it's like a socket wrench but with an allen head) to attach to his pins while he shakes his head is no easy feat. Especially since I try my best not to touch his head because it might hurt. God forbid haha. It's just a really, really hard thing. I do the turning for a variety of reasons, and when it gets to the end (if you can get it to go that far), it actually feels tight. You know how when you screw something into a piece of wood and it gets tight at the end and then you can't turn it any more? Yep, just like that. On my boy's head. I teared up again last night when neither pin would turn all the way. I tear up thinking about what I'm doing to his head. The closest comparison that I have heard is that it's like a palate expander. You put the key in a contraption in the roof of your mouth, turn it, and it widens the palate to create more space. The palate is quite a bit softer than the skull, though, which is why they actually cut into the skull so that a portion of it is pulled away from the rest. That's the part that's expanding out and creating more space for his brain.
Today I woke up on the floor, like just about every other day, and felt like I was okay. I halfway sleepwalked into the kitchen to get Jaxson's food and give Jayson a hug before work. Normal stuff. I went back to feed Jaxson, who as asleep in his bouncer, as usual. While the feeding tube sucks at times, it is also amazing at times! I can keep him on schedule with his food when he doesn't want to have a normal sleep schedule, and I can make him eat when he's sick so he doesn't lose weight like Jeffrey does. Anyway, Jaxson woke up mid-feed, which isn't really normal. He was so upset and I have no idea why. I had to stop the feed and pick him up before I could finish. So I'm not sure if he just wanted mommy when he woke up, or if something was bothering him, but it took forever to calm him down. Of course, by this time, Jeffrey is downstairs harassing me too. And now mom is in a horrid mood. I hate feeling that way and I'm so glad the day turned around. I found out that I had some money left in my IRA, so I called to withdraw it and it's enough to get us caught up on our bills, plus have a little left. And then I walked down to the apartment office to discuss payment with them (we ended up behind), and the lady that helped me has twins (now 3) who were born at 25 weeks and in the hospital for 8 months. Jaxson was with me, of course, so I explained to her what was going on with him and that we just needed a little time. She took down my whole story and emailed it to the property manager, so I should hear back from them today.
On another good note, I finished the design for Jaxson's shirts. I can't wait to get the approval to roll them out! So, while this morning started out rough and I was really depressed, it looks like it's going to end up just fine. Sometimes it's hard to remember that everything is on God's timeline and that He is always there for us. He even tried to show me that everything was going to be okay. When I took Jeffrey to my parents to spend the night before surgery, the boys were playing in the back seat. Jeffrey can make Jaxson roll with laughter better than anyone! And I just smiled, listening to them. As my eyes went from the rearview mirror back to the road, I noticed a small rainbow in the sky. I did a double-take because it was pretty cloudy although the sun was shining. It was a small rainbow in an opening in the clouds. Here's what that meant to me:
9 “I now establish my covenant with you and with your descendants after you 10 and with every living creature that was with you—the birds, the livestock and all the wild animals, all those that came out of the ark with you—every living creature on earth. 11 I establish my covenant with you: Never again will all life be destroyed by the waters of a flood; never again will there be a flood to destroy the earth.”12 And God said, “This is the sign of the covenant I am making between me and you and every living creature with you, a covenant for all generations to come: 13 I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth. 14 Whenever I bring clouds over the earth and the rainbowappears in the clouds, 15 I will remember my covenant between me and you and all living creatures of every kind. Never again will the waters become a flood to destroy all life. 16 Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth.” Genesis 9:9-16I felt peace after that and knew that everything would work out, at least for the surgery. And it did. And it's still working out according to His plan. Part of me takes solace in that and knows that we will be okay as long as we keep faith. Part of me wants to throw a fireball at the sky and make Him do things according to MY plan. But I suppose He knows best :)
I actually started this blog a few days ago and haven't been able to finish it. Since I took my break, Jaxsons's distractions have become increasingly difficult. He cries as soon as he sees water and Q-Tips, what I use to clean around his pins. He cries so hard, even with turning one in the morning and one at night. If he sees the screwdriver, it's even worse. And the hardest part is that he wants nothing to do with me when I'm done. He wants daddy. Which is fine and I understand why he doesn't want me, but it's hard enough to cause my baby pain, throw in not being able to comfort him as a mother should, and it's a bad mix. I break down about twice a week, and the only thing that gets me through is knowing that he's not going to remember any of this. He won't remember that mommy caused him pain and he won't remember the pain of any of his surgeries. Thank God. I find a small comfort in that.
Jayson and I were talking the other day and we figured out that in Jaxson's short little life, he's been in the hospital 8 times (counting the NICU stay). He's had 5 surgeries, RSV and enterovirus. I think he's spent at least half his life at Children's, and he's not done. He'll have another surgery around December where they will pull out the distractors. Dr. Pearson said that he'll be able to repair the cleft at the same time as that surgery, so were thankful that they can be combined. Then it will be a matter of lots of therapy and focusing on his other issues that have taken a back seat to his skull. Like figuring out what's actually going on with his spine and pushing for an orthopedics referral to make sure there's no structural damage to his ankles and legs. I think his hips turn out too far, and his feet ar always at a right angle. His toes do not point. At the moment, it's not affecting his ability to walk, but I want to make sure we're not fighting a losing battle in therapy trying to fix something that's not going to get better. I have a feeling that he'll have braces on those ankles before long, but we'll have to wait and see.
That's what it's always about with Jaxson. Wait and see. It's the most frustrating thing on the planet. I don't want to wait and see, I want the doctors to figure out everything and just fix it! Just tell me what's going on with my little boy so that I can care for him properly and be prepared for what the future holds. The not knowing is what kills me. I want all of the information I can get. Thankfully, we have an appointment at Genetics at the end of the month. They will take mine and Jayson's blood and compare the genes to those of Jaxson and see if any conclusions can be drawn from it. Hopefully we'll get some answers from that, but I'm not holding my breath.
Which is exactly why I plan on starting a nonprofit organization to benefit kids like Jaxson. There are plenty of support groups and charities out there for kids with known syndromes, but I know we are not alone in not having a single diagnosis that encompasses all of Jaxson's issues. Right now, the doctors are treating each problem separately because there has been no evidence that the issues are connected. The only thing I have come up with is that everything is on the midline. The things that are going on with him are extremely closely related to spina bifida. He just wasn't born with his spine outside his body. I can't find anything for what I would consider a "step down" from spina bifida. So maybe he'll have a syndrome named after him, but either way, I just want to know one term for his problems.
It's funny, I see a ton of pages out there for kids that have birth defects and they have thousands of likes on their Facebook pages, but no matter what I do for Jaxson's page, it's like no one gets it. He doesn't have a single syndrome and so people assume that he's not that bad off. Don't get me wrong, he's a little fighter and I have no doubt that he's going to come out of this 20 times stronger than when he started, but it confuses people that he doesn't "have" something. I want to raise awareness on this so bad! I also think that people tend to overlook some of his issues because the big focus is his skull right now. But remember that he has a heart defect, spinal problems, hearing loss, possible vision problems, and will need TONS of therapy to get completely caught up, especially with speech. We're looking at years worth of speech therapy. And, who knows, maybe PT and OT as well. We just don't know. And I don't even know which doctor to ask about combining all of his symptoms into a single issue. Do I talk to Genetics? Plastics? Neurology? Cardiology? Is there a way to bring all of his doctors to one meeting to discuss his symptoms and come up with an effective treatment plan? I just really feel like there's not enough communication between the specialties and that something is being missed. I don't know what that might be, but I just really feel like something is being overlooked. At what point do I push harder for answers?
I don't know, I'm just increasingly frustrated with the entire situation. I just want this to all come together and be figured out so that Jaxson can have the life he deserves.
One final note and I'll sign off. We started a Booster campaign to sell some shirts and raise money for Jaxson. The goal is 30 shirts, and as of today we've sold 8. If we don't get 20, the order will not print and everyone gets their money back. So please, go get yours today! You can find the page at www.booster.com/jaxsonsride. Please share his Facebook page as well, we need to get word out there on situations like this. Just because there isn't a single diagnosis, doesn't mean it's easier than having said diagnosis. In fact, I would venture to say that it is more mentally and emotionally draining to NOT know what is wrong with your child. So please, I'm begging you to shar Jaxson's story. Even if we educate just one person, that's one person who an go on to educate other people and we can make a huge difference in the world. Thank you!
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
No comments:
Post a Comment