On Tuesday, Kerstin had her post-surgery, cast removal appointment with her orthopedic specialist. We were excited, because her feet are looking good, healing fine, we just have to get her some school shoes that she can wear over the AFO's now. Everything was going well, they didn't have that many patients, so the wait was minimal. Although, I must say, kept having a funny feeling about the appointment, before we left home, I kept thinking that I just did not want to take her. Even after arriving at the office, I was hoping maybe the doctor had to cancel for the day, I know they would have called beforehand.
We check-in, I was asked about the paperwork they mailed weeks before, to bring to the appointment...wouldn't you know, I completed the forms and forgot to take them with us. Luckily, it wasn't a big deal, I redid the forms there. Kerstin is called back, we talk with the nurse, Mandy, about the spasms she's been having lately, I told her that I was also concerned with her leaning a lot when she's either in her wheelchair, Tumble Form seat or just seating on the sofa. She was sent to ex-ray to get imaging done. During the ex-ray I just had an overwhelming feeling that I wouldn't like the news we would get, yet, I was still hopeful.
We're back in the check up room, having playful convo, while I administer her bolus...in walks her doctor, file in hand. He spoke, took his seat in front of Kerstin, she never forgets a face, so she gave him that big smile, he rubbed her arm and spoke directly to her. Exams starts, he stated she looks good in her AFO's and to keep her in them as much and as often as possible, he flexed her legs and said they looked good as well. He even noted that her dislocated right hip has flexibility and show no arthritis. All good news! Then he looks at me and says, "Mom, we looked at her ex-ray and her curve has increased...she is now at a 50 degree curve..." I think I stopped breathing!!! That's up from 40 degrees just in December. He continued, " It's time now to talk with family, because we can't let her continue at this rate, without correcting the curve, when children get this much of an increase we have to do surgery so that it does not increase. We don't want her at a point where she won't be able to even sit up in her wheelchair." As always, I sitting there looking at this beautiful child that will have to undergo, yet another surgery, trying my best to hold back the tears that are burning in my eyes. " We also need to correct her at 50 degrees verses waiting to 75-80 degrees, and that surgery would be more intense and invasive, because she would have to be cut in the back as well as the front." I'm trying to make sense of it all, even a day later...
We were also informed that, we are going to nee family friends donate blood for her surgery, they would give me all the directions for that prior to surgery. I asked how long would she be hospitalized for this surgery. He said " Let's say surgery is Monday, she will be there at least until Friday or Saturday." Another week at Children's of Alabama is in my near future, sigh! He asked if Kerstin had a pulmonary doctor, no she doesn't. He stated that was good, especially since she now has her feeding tube. As he was talking, I'm thinking and trying to remember what is pulmonary? He told me that a pulmonologist is needed on the team because of the tube, to make sure breathing is fine, there will be heavy sedation for the procedure...he also said that the long stay is because they will have her on iv fluids, but they wouldn't want he too sedated to take her boluses, because of swelling/stomach expansion. Things went blank for me, I heard him, but it seemed like I didn't. He continues on with reasons why it needs to be done in the next few months, pulmonary doctors don't like to have children having surgery when it's cold and flu season, the weather is too cold, because of the risk of them being in the hospital with sick children and them getting sick. I asked him if she could be fitted for another scoliosis jacket, and would it help? He looked at me so somber and sad, he let out a sigh, and so it would not help at this stage. Devastated, because I was putting her jacket on her. Like I said before, I thought she had started pulling my leg and not wanting it on at all. He told me at another appointment that it was too painful for her.
Doctor stepped out to get me the ex-ray image and said that his Nurse Mandy was going to talk with me about the pulmonologist and other things. She starts by saying that the new doctor will need to be seen a month before surgery. I asked when does he want to do surgery, she said late September, October or early November. I remember telling her, she will have just started back in school. She said she understood, and we could do late October/ early November. She said because if we do September we need to schedule the pulmonary doctor now. So now, it up to me to talk things over, get family and friends to donate blood and let them know, late October or early November.
I'm not looking forward to the day! Seeing this face, knowing she's about to go through something again, that no child should have to deal with, breaks my heart.
I looked at her and snapped this pic after her appointment. I thought, "You have this beautiful smile on your face, after that appointment..." We ran a few errands and on our way home, I could not stop my tears, they were rolling down my face. I saw her from the corner of my eye, looking at me...had to try and pull it together, no luck. She eventually stopped and started back watch her movie.
I have faith and I know that this surgery will be a successful one as well! I just can't help or control the feelings that this year of 2013, has not been kind. If I could go back a couple of years...
"A Patient's Guide to Scoliosis"
"Scoliosis and Rett Syndrome"
"Surgical Treatment for Scoliosis"
More to come...