My baby was turning blue and going limp in my arms. After a really bad attack, while we were at Children's Hospital, resulting in him being bagged, I was told that he was going to have this surgery done whether it is at that hospital or any other hospital of my choice. They would fly us wherever we wanted to go. So the next day, he went into surgery. And this is the result.

Today we got a paramedic intern who did not weigh him naked. I knew he had to be weighed naked. I have lived the past 2 years with a child who has a hard time eating, a hard time gaining weight, and has a long history of required naked baby weights. So after he was already really ticked about the weight and height, we went back to the dreaded room for the naked weight. Thus began the terrible tantrum which resulted in him hitting, kicking, pinching, slapping, and pulling on my hair. It's extremely exhausting as nothing will calm him down. Finally, after explaining everything to the nurse while he's screaming, and 30 minutes later, he calmed down enough for the doctor to come in and examine him.
The appointment went well after that. The doctor said we could go ahead with the procedure tomorrow even though there is a slight cold going on and he's on antibiocs. So now, after 2 years, his Mic-Key button will be coming out and he will have his Gastrostomy closed. In the pictures to follow, you can see Jayden's Mic-Key button on his tummy. That will come out and the hole going into his stomach will be closed.
"Jayden, where's your button?"
I also get nervous because we are losing this security we have learned to be accustomed to. Even though we don't use it, we know it's there in case he needs the calories or fluids for hydration. With the button being removed and the hole being closed, we lose this security. I should add, he has not needed to use the button since July 7th of last year, except for one night when he was very sick and needed the fluids.
Onward to Shaylee....
She does not need surgery (yet)! The doctors were missing a few tests that somehow didn't make it down there for today, but they don't suspect it is her gall bladder. They explained when she had the HIDA scan done and injected the medicine, that she should have experience a higher level of pain. She did not have a reaction to the medicine. The doctors said they gave her a very high dose. I was also told that even though the HIDA scan was abnormal, she could have a normal one from here on out.
So what's wrong with her, you ask? Well...
They think it could be constipation, which she did suffer from around age 4-5 and had to take medicine to help. Even if you go to the bathroom everyday, but don't empty your colon completely it can cause a back-up, so when she eats, the colon starts to contract to start digesting the food. The contracting of the colon is what is causing her pain. She will be starting on some medicine and has a follow up appointment in 3 weeks. Her doctor said if they are on the right track her pain should lesson or go away in the next 3 weeks. This is promising to us as it made sense when they were explaining it, however, it is another trial withouth a definite answer. Isn't science and medicine great?
Tomorrow we will head to Sioux Falls to begin a new chapter of our lives and hopefully move forward with Jayden and Shaylee's health. Any prayers tomorrow would be appreciated by our entire family.
I will update Twitter tomorrow, until I can post. I don't know if the hospital's computer will block Blogger. I hope not.
2 comments:
I am so excited for you guys!! I will keep you in my prayers all day please call with updates
Val and Mike and kids, We will be praying for Jayden to have a smooth sail of surgical removal of his Mic - Key button. We will also say a prayer for you guys to have strength and courage tomorrow. It is a good thing to get put behind Jayden for sure! All our love and God Bless! I will be down tomorrow to see Jayden and you. Plus, it is good news so far for Shaylee!
Post a Comment