CT Scan & Surgery

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!

Hannah & Sophie!

Hannah & Sophie!

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.

Sinuses

Sinuses

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.

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16 thoughts on “CT Scan & Surgery

  1. annmariegubenko

    Nico has had 7 sinus surgeries and Tommy has had one and will probably need another one in the near future. They are sinus involved in their battle with CF. I will pray for Sophie and for you. She is such a trooper but it doesn’t make it any less scary.

    Reply
  2. Kat Lindholm

    I am glad that you had the CT and are opting for surgery before it does more damage. I am always amazed by what our kids go through & how they continue to smile and laugh through all of it! I’m sending tons of prayers that you remain as strong as you always have been as well as a quick, full recovery for Sophie!!!! xo

    Reply
  3. Karen Bruno

    Charity, I am so saddened to hear of what Sophie is going through and how scary it must be for you and the family, but it does sound like you have found a very competant doctor to do this procedure. I will be praying that Sophie has a quick recovery and that God continues to give you the courage and strength to get through these difficult times.

    Reply
  4. Glenna

    With God all things are possible, and I am claiming that for that Sophie! May God guide the surgeon through this operation and hold Sophie’s hand all the way… Love you guys…!

    Reply
  5. Tijuana Lewis

    I can’t imagine what this feels like, but I know who God is. I pray right now that God send his PEACE. Such a peace that even you cannot comprehend. I pray that God goes ahead in this matter and that every doctor that has a part in this will perform this surgery like no other surgery they have performed. I make a declaration that everything will be at 100% SUCCESS. Sophie’s health WILL CONTINUE TO IMPROVE and she will continue to blossom into the beautiful little girl that she is. I BELIEVE that God has this all in His hands. I thank Him in advance for the AWESOME REPORT you will have when this procedure is done. In Jesus name I pray, AMEN. ❤ Ms. Tia # teamsophie#

    Reply
  6. Tommie

    I’ll be thinking of you and Sophie as her appoinment approaches. I’m so sorry it’s come to this but understand that you’re doing what you have to do to help Sophie get healthy. So many prayers are coming your way.

    Reply

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