We made it through the weekend without much concern. Chase was plenty swollen around his head and eyes. But that is to be expected. We gave him acetaminophen and ibuprofen around the clock to keep up on any pain he might be having. By Sunday we started weening him off of the meds and his swelling was basically gone. We spent a nice relaxing weekend not doing anything too strenuous.
By Monday morning Chase was a happy boy and feeling like himself again. He had his appointment to get his head scanned for his helmet. Getting scanned should be a fairly simple process. But both times Chase was ready for a nap so was quite cranky for the scan. The poor orthotics guy had quite a challenge but was very patient and was able to get what he needed.
The helmet was ready to be fitted this morning. A few modifications were made and a schedule for getting used to wearing the helmet was given to us. One hour on...one hour off...and adding more time until he wears it 23 hours a day (only taking it off for bathes) for about 18 months. He has already worn it for a few hours today and seems quite indifferent to it.
We decided to drive downtown today and take a walk around the River Walk. I had almost forgotten about all the looks you get from people. Kids are honest and are naturally curious. It's almost funny to me at times to see their parents reactions. A kid will say out loud, "What's wrong with his head mom?" Parents will quickly try to hush their kids as if there is something wrong with asking that question. We get a lot of looks from adults where you can tell they are asking the same question...but they quickly look away as if to say, "Don't look...don't look...don't look. It's not polite to stare." Then there are those that look at you and almost give you a look of...I don't know...pity maybe. As if I might be embarrassed by having a kid with "something wrong". I'm not! I'm incredibly proud of my kids just as any mom. And there isn't "something wrong" with my kid. Nobody is perfect. And he's just fine! Honestly my favorite are the people who are naturally curious and actually have the guts to ask. I love it when people ask and I'm more then willing to tell them my story.
Well...tomorrow is our final day here!! In a way it seems like we've been here forever to the point it feels like home almost. On the other hand...I can't believe we're leaving already. We'll meet with the neurosurgeon one more time and get the ok from him to head home. We'll also get the schedule of when we are to come back. I know this process well and look forward to making our next trip back.
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When we arrived at the hospital for surgery, I expected that Chase would be plenty fussy from not eating much. He surprised me instead and was incredibly relaxed and barely made a peep. He had tried out the Pedialyte but was thoroughly unimpressed! Despite not having much to eat he fell asleep in my arms until time to go back. Even though this is the second time going through this, it's not any easier handing your baby over to complete strangers. Tears flowed easily as I watched them walk away with him and the anxiety set in.
The next part went amazingly quick. They took him from me at 11 am, called to tell me they were starting the procedure at 12 pm, then called again to tell me they were done at 1 pm. I couldn't wait to go see him and to kiss him and love on him as much as I could! When they allowed me in the PICU he was intermittently sleeping and crying and I couldn't help but hurt for him as I could tell he had some pain. The morphine helped with that. Unfortunately the IV in his neck (they had a difficult time getting a vein) infiltrated causing him to look terribly swollen in his neck and chest. By 10 o'clock at night he calmed down and started to sleep more. I tried to feed him later but he just wasn't all that interested. Then at 1 am he vomited everything in his stomach and for fear of dehydration, they started another IV to give him fluids. He was able to get more sleep after that and I could tell he was starting to feel better. By morning he was eating better and starting to act like the baby I know.
The neurology nurse came by around 3pm and gave us the clearance to be discharged from the hospital. Chase was back to behaving like himself with just some swelling to remind us of what he had just been through. He has two small incisions on the top of his head about 2 inches across. We'll be keeping a close eye on him over the next few days and just try to relax and encourage healing. I'm just happy to be done with the worst of it and happy to be able to cuddle my little boy again!
We arrived at the hospital at 11:30 this morning. To begin with, a nurse wanted to talk to us about participating in a study they are doing about craniosynostosis. The fact is that not much is known about it. So we've agreed to participate. Basically what they will be doing is keeping the bone that they will remove from Chase's head and save it for future studies. I'm happy to participate because someday I hope they are able to find some answers.
There is always plenty of paperwork to sign when it comes to these things. I hate reading when they list worst case scenario possibilities! I prefer tricking myself into believing that those possibilities don't exist! But the paperwork is signed. And the reality of surgery is upon us. The team has a way of making you feel comfortable and confident in what they are doing and I trust that the outcome will be good.
After paperwork was signed it was time for the head scan. Chase decided he was hungry at that time so we sent Ryan in for his scan first. It's hard to get the timing right for infants as they seem to have a schedule all of their own. After he was done eating we went back to be scanned. He was not impressed. He was so tired that he didn't want anything to do with being touched by anyone else. I had wanted to get a picture but he was much too tired for me to become a photographer. The process has changed a bit since Ryan's 5 years ago. They put a white sock of sorts on his head (same as they did Ryan) and they lay them down on a table and it's a simple push of a button and a laser scans his head. Simple process if you have a baby willing to cooperate. It took several times for Chase. The process wore him out!
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After the scan it was time to meet with the neurosurgeon. You can tell he loves his job and loves kids which sure makes it easier for me to trust him. We asked him several questions and he is so willing to share information and explains things well.
Having been through this before, our questions were less about the procedure and more about wondering why this happens. Truth is... not enough is known...which is why they are doing research. He does, however, believe it to be a mutated gene. Why now?...what caused it?...too many unknowns. Will my kids pass it on to their kids? Maybe....maybe not. Again...not enough is known.
Surgery is scheduled for 10:30 in the morning. I am not allowed to nurse Chase after 6:30am, but allowed to give him Pedialyte between 6:30a - 8:30a. I have visions of him being hungry and crying as we arrive to check in. We'll see how that goes.
Yes, I've been through this before but I'm still nervous and find myself whispering prayers of protection over my little boy every chance I get. For now, we'll hope for a restful night and pray that everything runs smoothly tomorrow.
The road to San Antonio is a long one for us! But the kids have all traveled well! Thankful for the portable DVD player for the older two! Chase has done quite well for his first road trip! We are all happy to be settled in to our hotel room now and as ready as possible for the process to begin.
We arrived today so that I could donate blood for Chase just in case he would need it during or after surgery. More than likely he won't. When Ryan had his surgery the neurosurgeon said he only lost three tablespoons of blood. During recovery, however, they did question at one point if maybe he needed some. He didn't though and recovered just fine.
I found out that Chase and I are the same blood type, so just to be proactive, I've donated some in his name.
People may wonder why we travel so far for surgery. In our state, we were told that there is only one neurosurgeon that corrects cransiosynostosis. He and the plastic surgeon he works with only do the traditional cranial vault remodeling (CVR). When I did the research originally for Ryan, I had found information about a much less invasive route that Dr. Jimenez and Dr. Barone were during. They started it around 15 years ago and have had great success with it. Because both of my boys were diagnosed early enough we had the option to go this route. I preferred the fact that it is less invasive, less blood loss, less time in the hospital. While it has worked out for my boys to have this option I understand that the CVR is still needed and I know others who this is the best option for them.
Wednesday is the next big day for us. We will meet with the neurosurgeon and get Chase's head scanned. While we are down here again, we are also going to have Ryan checked up. Will be interesting to see if anything has changed since were were here about 3 years ago.
Tomorrow we will try to relax. Can't
Nine days before surgery day. Admittedly, the butterflies in my stomach multiply the closer we get to the day. People keep commenting, "Well at least you've been through this before. You know what to expect." And while that's true...I'm not sure it really makes it any easier.
With Ryan, I had so much nervous adrenaline pumping through me it gave me the determination to study things out and find the treatment I felt was best for him. But now there is not the need to study it out. I already know the decision...I just have the nerves and worries of being the mom about to put her infant through surgery.
It's also hard not to feel a bit of guilt. I wonder if there was something wrong with me that caused this in them. Have it in one child and you can easily brush it off as a fluke. But two? There has to be a reason.
There is a genetic component to this I am told. Though so little is known about that. No one else in either of our families has it. So why did it start now? There are so many questions but no real answers.
"Poor kid. Doesn't have a clue what is about to happen," many have said. I know...I know... :(
I am just thankful that it can be fixed. And I just need to trust that everything will turn out just fine....just as it did for Ryan and so many others!