All healed

Callie is doing great since her surgery and all the trips back and forth to Minnesota. Her follow up went great. All of the doctors were very happy with her progression. The neurosurgeon made the comment previously how serious her skull was, which made us very grateful to have found Gillette. Hearing this is something he would see in a medical journal it was so serious was a bit shocking, but really assures us this was defiantly the right thing to do. Since surgery and recovering from her infection she has become so much happier. She was always a very happy little girl, but it is so different now. She also has so much energy and is always giggling and moving. She stands so much better, is always crawling and wrestling with anyone on the floor (and she likes her brothers head the best).

With our follow up the infectious disease doctor (ID) decided to keep her on her IV medications one more week as she would be having heart surgery in January. We had a great plan in place until we got home from the 3 hour drive and her PICC line broke for the second time in 2 weeks. We were not even home more than 5 minutes. I truly just wanted to sit and cry. All I could think was there was no way I was driving back to Gillette and no one locally will replace it at night. After talking with Gillette I told them I was not going to drive back and she was just going to go without her medication for the night. They agreed this was ok and we could just talk with the doctor in the morning. They decided there was actually a greater risk of infection to replace the PICC again when she really did seem better so they had the local pediatrician pull her PICC line that day and we started on an oral antibiotic for another 10 days. I think Callie was so happy to have everyone stop messing with her and just get to her whole arm back.
It was confirmed this week that Callie will be having open heart surgery on January 7th. They will be fixing her ASD (whole in the heart from birth) along with her pulmonary stenosis (narrowed pulmonary valve – where the blood is pumped out to the lungs). She will spend 1 week in the PICU. This has been something we have been monitoring since birth. She has been stable since she was 1 year old, however she has a significant blockage that we knew it was only a matter of time before she would need this surgery. We have been waiting for her to get bigger and healthier. It has been quote the balancing act for the doctors to determine when the right time is. With the potential surgeries and sedations coming up in the next year it is time to get her heart fixed. We need to wait 2 months before moving on with any additional surgeries as she will be put on blood thinners through the heart surgery.
We do not have a set date yet, however we are thinking beginning of April she will have her second cranial surgery done. This one will be for her forehead. The purpose will be to allow for her brain to continue growing and make additional space. There is a possibility that from the movement of the bone and swelling there her surgery had on her eyes to lift the lids will “break” and need to be re-done. Only time will tell. The third cranial surgery would potentially be the mid-face. At this point it has been put on hold and the doctor will just follow her a year after the forehead surgery to determine if it will be necessary. Originally we thought all 3 would be required so that was great news to hear that maybe it won’t be needed.
We are still in the process of trying to find an ENT doctor that is familiar with the choanal atresia (Closed nasal passage) to start talking through that. We know it is still a year out so we have not spent to much energy trying to find someone. There is a lot going on and we remind ourselves one day at a time. Callie is showing huge progression and we are so proud of her!

Zak also saw the doctors at Gillette while we were there. We are excited that he does not have the Craniosynostosis (fused skull) like Callie! The cranial doctor would like to follow him annually though as his mid face is slightly pushed back and wants to be sure that it does not become an issue. He also saw an orthodontist while we were there and confirmed he will need some oral work done at some point as he does have a very small mouth. We will be seeing a dentist at Gillette and then will continue to follow an orthodontist. We also talked to the doctors about Zak’s continuing head banging. There are a few tests that they can run to rule things out before it is deemed as behavioral. We are still working through that to determine where to start and how we would like to move forward.