I want you all to know that I never tell you about what is going on in our family and with Bubba because I want you to feel sorry for me. I received an e-mail from someone that feels that those are my intentions with my posts. It is just the opposite. It is hard for me to be as honest as I am sometimes BUT there is a reason that I am. I have received several very sweet e-mails from mothers who felt alone in their feelings and situations with their disabled or sick child. It brought them comfort to know that they were not alone. It brought me comfort to know that my words were of some value to someone. That my situation is relatable. That Bubba is not only my Hero but an inspiration to many.
With that said….
I am feeling a bit overwhelmed. Maybe it is all the catching up that I am having to do after our trip. Maybe it is because when I think of how crazy and hard this year is going to be I just get scared. Maybe it is because I never truly now how strong I am until I am tested…. and I am feeling weak.
Yesterday my wonderful mother-in-law, Bubba, and I drove in the rain to an appointment with a new surgeon. Luckily she drove, I was tired, and nervous. Our appointment was not the with doctor that had been recommended to me, it was another doctor in the same practice. I was worried I wouldn’t like him and it would just prolong this entire process.
He came into the room, sat down, and then asked “So, what do you want?” Oh, NO!! I thought… I don’t like this guy…. What does he mean what do I want… didn’t he read his chart. Then I started talking to him and realized that his office had not explained our reason for the visit. He asked me to explain Trichothiodystrphy and tell him about our sweet Bubba. He told me that just by looking at Collin he could tell that he was malnourished. He didn’t even need to see that my almost ten year old boy weighed only 31.6 pounds and was 43 inches long. It hit to my heart….”I can tell that he is malnourished from here..” It made me feel like a bad mom….I know I am not a bad mom BUT I couldn’t help but feel as I had done something wrong or let my little boy down in some way. But it was for this reason that we came to him, the expert, for help. He agreed that Collin needed a feeding tube and then began explaining in great detail what would happen, what the risks were, and what the recovery would be like.
Wow, I am scared…. Not about the surgery… I will be scared on the day of… the night before… Ok, the week before. No, right now I am worried about how in the world I am going to be able to take care of him. Let me explain what I mean. After the first surgery Collin will have a long tube sticking out of his stomach for three months. He can not pull on it or rip it out. If he manages to pull it out, which I wouldn’t put past him, he will need emergency surgery. After three months then he will go back in for his second surgery where they will place his “button” in. Think of it like a plug in a water bed or air mattress. Once this one is in and healed he can pull it out and it will not be a problem.
Collin will be in the hospital for a bit after the surgery. He has additional risks because of his skin. When I showed the doctor a picture of Collin at birth he responded “ WOW, I have only seen kids like this when I have gone to help in third world countries and they died.” That is just another testament to Collin’s strength!!! He is a fighter!!!!
By the end of the visit the doctor had completely won my mother-in-law and I over. He was very sweet and VERY detailed in his explanation. When we were leaving he looked at me with a big smile, put his hand on my shoulder, and said “it will be ok Mama.” I needed to hear that.
On the drive home we talked about all of the different clothing that we will have to alter and sew to keep Collin away from the tube. We will also have to wrap it up with an ace bandage. We talked about how hard it is going to be. I will most likely have to go with Collin to school every day to keep an eye on him. He will most likely not be able to go to summer camp this year. I will have to find a private nurse that will come into our home to relieve me every once and a while.
It is scary, new, and overwhelming.
Tomorrow I will be taking Bubba in for a CT scan to get the doctors ready for the other surgery that he needs. He will also have an upper GI done and then the two teams of surgeons will set a date. It will be a long day most likely 3-5 hours between the two.
I am scared.
I am not alone.
I am thankful for these wonderful surgeons.
I am grateful for family support.
I am once again in awe of my Little Man and his strength despite constant pain and trails.
I am lucky to have a little girl that gives her Bubba kisses as I explain what is about to happen.
I know that I have a loving Heavenly Father.
I am grateful for the gospel in my life…. It is beautiful and easy…. Life is hard, not the gospel.
I am grateful to be married to my best friend. :)
I need your prayers for Bubba.
I will keep you updated.
I will end this tonight with a picture of Bubba, so that you can see how far he has come!