So I'm a few weeks behind, as usual. Jaxson had his tethered cord release surgery on March 29. We had several questions for Dr. Jackson (neurologist), which he did a fantastic job of answering. What causes a tethered cord? For those of you that don't know, the bottom of your spine typically flows free. When you have a tethered cord, there is a fatty mass, cyst or scar tissue that the spine attaches to. In infants, it is typically a cyst or fatty mass that's easy to remove. In adults, it's either scar tissue or a cyst caused by some type of injury. In Jaxson, nothing is normal. Dr. Jackson had to make a larger incision than normal and had to cut deeper than normal. Jaxson has scar tissue, and it's likely that we will never know what it's from. He had to cut into the dura a little bit to release the spine, and he also had to do a laminectomy. You can read about what that is here: http://www.nlm.nih.gov/medlineplus/ency/article/007389.htm. When kids go through a tethered cord release, the surgeon will go in and remove whatever the spine is attached to. A cyst or fatty mass is pretty simple to remove, but with scare tissue you can only do so much. Dr. Jackson cleaned up Jax as best he could, but it took longer than what the procedure was scheduled for. Shocking, I know. Because Jaxson had a hearing test at the same time, he was under anesthesia from 7:30am and finally woke up around 5pm. He was in surgery for nearly 5 hours, normally the procedure is 3-4. He also decided that he wanted to stay an extra night at the hospital, so instead of a 2 day stay, we had 3.
That was one of the hardest weekends I've ever lived through. Not only did I not see my baby for over 8 hours, but I wasn't allowed to pick him up for 2 days. He had to lay flat for that long to make sure that no spinal fluid was going to leak. It also stabilized his spine after the surgery. Listening to him cry in pain and not be able to pick him up was horrible. I was actually mean to the nurse and PSA I had that night because I was exhausted (we had to be there at 5:45am that day) and I wasn't getting any rest due to Jaxson waking up. But they were still so nice to me and did everything they could to help. The next day, to top it off, Jaxson decided that it would be a good idea to pull one of his IVs out. I was sitting on the couch when he did it and when he started crying I checked on him. Blood was everywhere! I thought he was throwing up blood and almost had a heart attack until I saw his hand. Then I got pressure on it until the nurse came in. I helped them change his bed without moving him too much and we decided not to put that one back in since he had another one. That was an instant, "OK I'm awake" moment! I went home that night and Jayson stayed with Jaxson, and by the time I got back on Sunday I was allowed to hold him. Best cuddle of my life! All of the nurses we had were fantastic, as usual, and we got to go home on Monday, so I got to spend a few hours with everyone at home before going back to work on Tuesday.
Prior to the spinal surgery, Jaxson had a follow-up ABR (auditory brainstem response). Since he has the tubes in his ears now, this test was finally able to give us some answers on his hearing. Turns out Jaxson has mild/moderate hearing loss in both ears. Hearing aids have been ordered and we should get a call next week to go in for a fitting. Part of the reason the test took so long is because the Audiologist went ahead and took ear molds while he was knocked out. Made things much easier for everyone! We opted to go with the Phonak Nios S H2O because it's waterproof and we don't have to worry about bath time or going swimming. At his fitting, they are also going to do some additional behavioral testing to get an additional baseline of his hearing without the aids. Then they'll put the aids on and see the difference in his response and if the aid is programmed correctly. The things they can do with hearing aids is simply amazing. These particular aids do not affect what he can actually hear, it only assists with the pitches, tones and sounds he has trouble hearing. And if his hearing improves, it can be reprogrammed so that the improved hearing can continue to develop on its own. And you can pick colors. Jaxson's will be scarlet and grey, of course! Pretty sweet if you ask me.
I have to send a huge thank you do my sister and parents for keeping Jeffrey for two nights. He was totally out of sorts when he came home, but eventually he got back to his normal self. He's the most perfect little boy a parent could ask for. So sweet and loving, always wanting to help take care of his brother and Buckeye, and always learning something new. I do not know any other four year old that you can have a complete conversation with that actually makes sense. He loves to tell secrets and stories and just be silly. He wants constant attention and loves to make us laugh. He also likes to get down on the floor and help teach his brother how to crawl, or just play with him and have a good time. I worry about his being so skinny his willingness to only eat a few foods, but he's built just like his daddy and has his daddy's eating habits, so I suppose it's to be expected. The doctor's aren't worried so I guess I shouldn't be either!
You know, when I tell people about Jaxson and all of his struggles, the response is always the same: "Oh I'm so sorry," or "I don't know how you do it." But it's not like that. Jaxson is such a happy baby, so loving and cuddly and playful. Is it hard to have a child with a disability? A child who needs extra attention at all times? A child that requires multiple surgeries with still no answer as to why all of this is happening? Of course it is. But it's not what you think. It's hard because I feel every bit of pain he feels. I struggle as long as he struggles. It is not hard because I (we) have to sacrifice, it's hard because we love him so much and there is nothing we can do but follow the doctor's orders. It's hard because there's no explanation and I worry that we are missing something or that we aren't doing enough. But there's an upside: Every time that baby smiles, laughs, or buries his head in my shoulder, my heart melts. There is nothing better than having a baby that, even with life starting out so rough, knows that he's loved and cherished. He knows he's going to be fed at certain times and that he has a roof over his head. He knows nothing of being alone or left to fend for himself because we're too busy for him. That was never an option. Jaxson is every bit as perfect as Jeffrey and I love them both just as fiercely.
Jaxson has a follow-up appointment with neurology this week for a wound check. He has an ENT appointment coming up to see if there is anything obstructing his airway that would cause a breathing problem and make him wake up every night, or keep him from sleeping period. He still only sleeps, at MOST 6 hours in a 24 hour period. He'll have a well-baby check at the end of the month and we may have him tested for allergies, and he has his first vision screening in May. He had a urology appointment last week and they discovered that the debris/cyst that was in his right kidney is gone, likely because the spinal surgery relieved pressure and it was able to clean itself out. So back for another urine test in July and an ultrasound in October. He still has the two ureters, so they will be monitoring for reflux. He'll go back to Cardiology in September, but the next big thing is his cleft palate surgery most likely in July. Oh, he'll have a CT on his head and follow-up MRI on his spine in July as well. So we're still very busy with appointments for him, those don't even count his therapies, which are weekly.
Jaxson's ride started on July 4th, 2012 and his journey continues. I can't believe he's going to be one year old in just a few months. Time is flying!
I will leave you with this, a phrase that will be incorporated into my next tattoo: Life is not what it's supposed to be, it is the way it is. The way you cope with it is what makes the difference.
