It’s been two days since mine and Sophie’s trip to UNC for her CT scan and meeting with the ENT and I have finally found some time to sit and breathe. Waiting for this day was so hard and trying to keep her well enough for this day was even harder. It took seven weeks from the day we scheduled it for it to actually happen and waiting was torcher. But the day arrived and I refuse to let anything get in the way of getting this done.
There had been alot of back and forth with the anesthesia dept at UNC and their concern with sedation since Sophie has had some issues coming out of sedation and a really bad reaction to chloral hydrate which is one of the meds used to sedate small children. With her aspirating they were afraid to partially sedate her and felt general anesthetic would be best, I just did not want her intubated. We arrived to prep for the CT scan as I changed her into a hospital gown and went over her medical history for the millionth time I was nervous, I wanted to cry and almost did. The anesthesiologist came in to meet me with her assisting nurse, they were both AWESOME. The anesthesiologist an older doctor with many years experience was so positive and had this great energy about her. She told me Dr. Paulson, Sophie’s ENT found her that morning and shared with her the delicate nature of Sophie’s health. After speaking with me she decided it would be best to keep the process as simple as possible and opted for general anesthesia using the gas mask and no IV or intubation unless absolutely necessary. We both agreed it would be best.
They allowed me to walk down to the room where they performed the scan and I was there to comfort Sophie until she was out, I waited the few minutes it took for the scan right outside the door and was right there to walk back to recovery with her. Her oxygen was at 100 the whole time, that made me cry happy tears. In the past it was always so hard to keep her oxygen up above 85 and she always needed some nebulizer treatments to help bring her stats back up. Not this time, she did amazing and was awake within twenty-five minutes. She was not even drowsy, she was ready to high tail herself out of there. It was the most wonderful feeling!
We then headed down to meet with ENT. We ran into fellow CDC parents Kelly & Mike and their beautiful daughter Hannah who were also there to see ENT, Kelly and I have been in contact for a while now on Facebook so we really didn’t need to break the ice we already felt like we knew each other. It was a great treat for the day!
Dr. Paulson arrived to see Sophie. I explained that in the last 7 weeks Sophie has been on five different types of antibiotics including a visit to the ER and she was saddened but was not surprised, we discussed that Sophie’s pediatrician also urged that something be done because we have run out of options to treat her. She took me to her office to show me Sophie’s CT scan results. It was not pretty, she has significant sinus disease in every sinus cavity formed. One area is even a little more mature than it’s supposed to be. The news was scary, to actually see all the damage and see her explain what is wrong with each sinus area was devastating I could feel the air leave my lungs and a heaviness take over me.
The picture below will show you the different types of sinuses, this is not Sophie’s it’s just a diagram to help you understand. The gray circles on the top sides are the eye sockets.
In a person with normal sinuses you would find sinuses like these, all the black areas are filled with air and normal. In Sophie’s CT scan there are two tiny slithers of black, barely visible and it’s 98% is completely gray. You can even see the thick layers of old mucous that will calcify eventually . Next to one of her eye sockets there is a fragment of bone that is not visible which is either to thin to see or missing and the doctor believes the bacteria has begun to eat away at the bone. It is rare to see such severe sinus disease in a child, especially to this extent.
Sinus surgery is very invasive and dangerous. When Sophie had her first sinus surgery at one and a half years old it was minor compared to what she is going to need now. The choices are to take the risk and clean her out and hopefully give her body a fighting chance or do nothing. If we do nothing the bacteria will inevitably become so strong and resistant to all antibiotics that nothing could stop it and or could leak into her brain. It’s already thinning out the layer of bones separating her sinuses from her eyes and brain.
We have no choice, we are running out of options. This is not a decision that could wait this is a matter of life and death and I chose life. Her surgery is scheduled for April 15, 2013, only three weeks away and Sophie will be kept overnight. Dr. Paulson agreed that sooner rather than later is best before more complications arise. Dr. Paulson will be performing the operation with a senior ENT who has been practicing at UNC for thirty years. They will be performing the endiscopic sinus surgery, cleaning out Sophie’s ears which are full of wax and because of the way they are formed it’s impossible to keep them clean. She will also be performing an endoscopy and checking her airway and a few other areas for possible malformations.
So this is it. It’s scheduled. I’m terrified, scared does not begin to describe how I am feeling and the worst part is I will have to go by myself. UNC is two hours away and since we are completely alone my husband has to stay here with the other kids. All I can do is stay positive, remain hopeful and trust that God has her in his hands. I know he will guide the hands of those doctors to heal my baby.
I had hoped that one day she would improve and that all the other mom’s would be right, the ones who told me she would out grow this as she grew and became stronger. But this is not something she will outgrow. Sadly this is where our journey has led us.