On Monday, Cannon’s pediatrician’s office called with the result of the swab taken from his incision site on Thursday. The nurse informed me that the culture was staph but that it showed that it was resistant to the two forms of antibiotics that we were treating Cannon with.
I was at a loss.
However, Cannon’s incision looked dramatically different. I had actually called early Friday morning to ask if I had to continue with both antibiotics as I felt as though his incisions looked tremendously better. There was no yuck in the spot that our doctor was concerned about, but at that time we had to wait until the culture results came back before we stopped any medication just in case. In the meantime though, another spot on his first incision started to concern me, but with the weaning in of the helmet it was hard to tell what was happening with the incisions.
Things started to gradually feel better by Saturday and Sunday and we had a new washing routine that dramatically helped his sweet little head. It is amazing though what it took to find the routine that worked best. Once the pharmacist mentioned the fact that I really needed to stay away from items with perfumes and things that would potentially dry out his head I was shocked by how difficult it is to find things in the baby department that do not contain one if not both of those items. I now have to wash his head only every other day with Cetaphil but not on his incisions. Then, I wash his incisions daily with Baby Magic, our normal baby wash and shampoo. After his bath is finished I rinse the incisions with a saline solution just to make sure it is well rinsed and gets rid of the perfumes or any other things that could irritate his skin and incisions. Once his head has been patted dry then I coat the back, sides and front of his head only with Baby Aquaphor. Which has only five ingredients! I wash his helmet with Baby Magic, rinse it, rinse it with alcohol and then rinse it with water and scrub the pads with a wash cloth to ensure that the alcohol is off so it will not dry out his baby skin. Then his helmet air dries for thirty or forty minutes, but before Chase puts it on he dries all the pads by using a towel to squeeze the excess water off. WHEW! What a routine. Although it is not down to a perfect science at this point it is getting better. I will just be excited once summer is over and maybe he won’t be so sweaty and we won’t have to worry about so much of all of this. But we will see!
On Wednesday, we went up to KC for a follow up. Originally we were going to just see our orthotist but once all the issues with Cannon’s incisions and dry skin began our surgeon wanted to see him too. I was relieved to see both as I really felt as though I had a lot of questions and wanted to see what both thought of his healing. God was faithful again and showed his faithfulness in such a real and concrete way that I seriously had such a song of praise in my heart after both appointments.
During our visit, the nurse and surgeon were very impressed with the healing of Cannon’s incisions. I told them about all of the previous stated care that is going into ensuring that those babies heal beautifully and they also thought that the dry skin was looking so much better than from the pictures I sent last Thursday! YEAH!
Then came one of my most important questions. Is there new bone growth? I was so anxious about this question because I had told Chase sometime in the last week or two that I really thought there were new little islands of bone growing. So finally the official opinion that counts….YES!!! Yes, Cannon has three very little, but very evident islands of new bone!!!! We were ecstatic! We had been told that often this does not happen until three months post-op, but I was so hopeful! God showed us that through it all he is ever present! I know that one would think that as the bone regrows it would grow perhaps like large section that fills in, however, as Cannon’s dura mater signals to his bone that it needs to regrow the bone will regrow in little spurts or islands that actually try to grow up. They do get thicker and bigger and will eventually fill in altogether and then the bone will fuse again but for now this is why the helmet is SO important. This encourages and forces the new bone to grow flat and out to fill in where the skull is now gone. The fact that we have bone growth encourages my soul so much! We are so thankful for so many prayers and God’s ultimate healing ability.
Our second question was perhaps one of the most intimidating. This was whether the genetic test had come back showing whether or not craniosynostosis in Cannon’s case was a genetic mutation. If so, Cannon would then have the possibility to have syndromes or also the possibility to pass the genes onto his children. What a heartbreaking choice he would have to make. But what was even perhaps more heartbreaking would have been the thought that if it was a genetic mutation then that meant that Chase or I had a gene that caused this awful journey to occur. So as I asked, I asked with the thought that maybe it would just be best not to know. But I asked anyway. The nurse did some looking through his file and finally there it was. No. No, Cannon’s craniosynostosis was not caused by a genetic mutation! Although, this leaves many unanswered questions, the thought that it was not a genetic mutation leaves me hope that perhaps this truly is just a random occurrence for us that would not necessarily happen again if Chase and I have more children and Cannon also does not need to worry about passing on a gene to his children!
We will soon be returning and our goal for Cannon in this coming appointment is for him to have his cranial index, width of his head to increase. Although it already has dramatically increased there was no difference from his last visit. I am so excited about his bone growth that it almost seems unreal but it is! Thank you to those of you who are still keeping us in your thoughts and prayers!
God is faithful!
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