Life has been super busy now that school is back in session. I think I also used this blog as a form of therapy. I was able to put into words how I felt. And I'm happy that I documented the whole process because I can hardly recall a lot of the nitty gritty at this point. When it was happening it was as if time were crawling, torturing me with what ifs. Looking back, it is just one big blur. It makes me think of the Maya Angelou quote about how people never forget about how you made them feel. While I can't recall every medical detail, I will never, ever, forget how I felt. I get tears in my eyes thinking about the first time that that ass of a doctor told me that there was likely going to be something wrong. I can remember the pediatrician, months later, looking me in the eyes and telling me that something was wrong. And, more than anything, I can remember the pain of handing Ryan over to the surgeons and praying that I would get him back.
My thoughts are all over the place as I try to recap events, so let me start from where I left off.
At Ryan's post-op with Dr. Keating, everything went very well. He said he was extremely impressed with how Ryan was recovering. He said that he rated the results an "A," and called it a "home run." He was hesitant to call it a "grand slam" (he likes to use the baseball terminology with Matt) because Ryan's forehead is still fairly prominent. He said that this could take a few years to go down. But other than that, his cephalic index had already gone up to .74. We were surprised to learn that most of the spaces that he opened up would close within the next few months. With the exception of two narrow gaps, the majority of the pi symbol is closed. The most promising thing that we were told is that he's never seen a child with results this great that needed another surgery. So now, we're waiting until his next appointment in November. His scar is healing great and he is growing this ridiculous, unruly hair to cover it up.
We now look back at his pre-op pictures and cannot believe it. It just goes to show that every mother thinks her child is the most beautiful child in the world. Because we just didn't see it. We didn't think his head looked strange until it was fixed. And now that it's "normal," we cannot believe how "abnormal" it used to look. We couldn't be happier with the results.
Okay. Onto the peenie. We decided before this surgery that we needed to speak louder about going back with him when he was put under. We suspect that a lot of the stress lingering in Ryan from the last surgery was over separation anxiety and being taken back into the operating room confused and alone. We had been told at our pre-op appointment that this would be okay and that the local Children's surgical center isn't as strict with the policy as the DC one. When we arrived early on the day of his surgery, we got mixed messages. Ultimately, we were read the riot act by the nurse and anesthesiologist. They said that we needed to know what we were getting into and that it's very upsetting to watch. They said that I would have to restrain him while he put the mask on and that he would start screaming (which would be good because it would mean he would take in the gasses quicker). Then, his body would start to convulse. They told me that it's hard to watch your baby go through that. I told them that I've watched him recover from skull surgery and that I doubt it could be harder than that. Furthermore, if it made it easier for him, I didn't care at all about the emotional strain it would place on us. They reluctantly agreed. We went back with him and I held him as they placed the mask on his face. The strawberry smelling gas slowly seeped in and he groggily tried to lick the inside of the mask (making us all chuckle a little). He quickly fell asleep and we were ushered out.
On a side note, we don't really suspect any longer that he was temporarily scarred by the whole process the first time around. That's a super scary experience and to go through it without any familiar faces (in a room full of 10-12 strangers) must have been terrible.
We were told that it would take as long as 2 and 1/2 hours (surprising, considering how long his head surgery took) so I went and got coffee and then came back to update the blog and pass the time in a way that I had grown comfortable doing. ADD side note again - The funny thing about the previous section (about his head) is that I had written it down in an entry that I began in the hospital while waiting for his peenie surgery to be over. But then the doctor came out nearly an hour early.
Yes, the doctor came out early. And our hearts dropped. I'd watched too many movies to think anything other than the worse. He smiled at us and said that his hypospadias wasn't as bad as he originally diagnosed. Because of that, there was less work to do and he didn't need to put in a catheter. We were so relieved. I couldn't even wrap my head around how to keep an 8-month old from tugging at a catheter so I was so thankful. He stayed in the hospital for a few hours and then we took our baby home. He was upset for a few days and had a lot of Tylenol and Motrin, but recovered fairly quickly. At his post-op, Dr. Sparks said that it looked great.
We've since had a few concerns about it opening back up (there's about a 15% chance of this happening) so we are going back in tomorrow to get it checked on. It's difficult to diagnose because you have to be watching him urinate to see if it's coming out of his urethra or from any other places. I guess only time will tell.
I have some huge take-aways from this whole experience. I know that I've reflected on it a few times before, but now more than ever, I am so grateful that this is all that we have had to deal with (hopefully). If this is it, we are more than blessed. After being in Children's and seeing what other families have to battle or even reading other mom's blogs about their experiences with cranio, we are so lucky. Sure, we were thrown into the flames of parenthood early on and had to learn to manage quickly. But, we were surrounded by our family, friends, and an amazing medical team. We also have insurance that can't be beat. How much has this craniospadias cost our insurance company so far? Over $66,000.
So, we blissfully walk away with our renegade. Our little badass with a scar that he can brag to his friends about. And we walk away a little taller knowing that we survived the hardest challenge we've ever been presented. Bring it on, parenthood.
So thankful that Rooney is just as good on the outside as he's always been on the inside! He is a badass baby - and the cutest thing ever. LOVE YOU guys!
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