|Little monkey doesn't know she needs surgery!|
The day after we got back from Gainesville we had a routine follow up appointment with orthopedics. They have been seeing Anya every 4-6 months to check her scoliosis. Anya’s curve started showing up while she was still in the NICU; she is very young to have this problem. No one is sure of precisely why; it can be more common in kids who have had a lot of surgeries to the chest, but it could be something else. Dr. Kays has said he has never seen such a severe case of scoliosis in a CDHer that has survived.
Still, I wasn’t worried going into the appointment. I couldn’t tell a difference in the way she carried herself, she was gaining more gross motor skills, and there hadn’t been any change in the curve at her last visit. I was completely caught off guard when they told me her curve had increased by 14 degrees and was now at 79 degrees, and it was time to do surgery.
‘Can’t it wait until the spring; I don’t like to have her recovering from surgery in flu and RSV season.’ I pleaded.
‘I don’t want to have her go through a flu RSV season without this being corrected.’ The doctor said firmly.
Scoliosis can get severe enough that it affects the lungs, and we are at this point. This is especially an issue with Anya, as she needs every bit of lung function that she can get. I have noticed some small signs that she is not improving as she should be, and it could be the reason she still needs oxygen when she is ill. It also could be affecting her eating, as her esophagus is angled differently. Anya can’t run yet, and when she walks it is easy to see how hard she has to work to keep her head midline.
Thankfully they are going to use the device I have talked about before, the MAGEC rod system. Traditionally growing rods are put in and then they need to be surgically changed every 4-6 months or so as the child grows. The MAGEC rods are placed once, and then they can be magnetically adjusted in the office every few months. Because Anya is so small in a few years she will need to have larger ones placed, but this still dramatically less surgery than she would have had otherwise.
When we are doing the pre-surgery workup a few weeks ago I got a call from the surgeon’s nurse practitioner. She had enough platelets, but some of the results came back that Anya was predisposed to bleeding.
She has had so many opportunities to bleed out and hasn’t done so! I get that we had to cover all the bases and make sure it wasn’t anything to be concerned about, but it was kind of freaky going to the Oncology/Hematology office to get worked up. They did more blood work and determined they would give her some kind of replacement factor or something before surgery. I still don’t know what it is and I don’t think it has a name.
To make things more interesting, Anya decided to spike a low grade fever Sunday night. One dose of Tylenol settled it right down, but surgery was only four days away. She has a cough but has not had any more fever; Dr. Eaton saw her today and her lungs sound good, so we are moving ahead. As the flu/RSV season moves along, there are going to be more complex and sinister bugs making the rounds, so we don’t want to wait any longer.
Tomorrow is the day! We have all been dreading this and I can’t say I won’t break down in tears tomorrow because I will, but it will be nice to have this done. It could solve so many of her problems and help her developmentally. I have always worried about Anya’s scoliosis treatment, thinking about people I knew in school who had to wear braces and hating the idea of something that set her apart. Now she will have this started before she is even aware she is different.
So again I request prayers please and thank you for all of your support!