Month: March 2010

Thank you for all of your prayers. Lucy had her CT scan yesterday and everything went well, with the exception of continued confusion over the orders for the scan.

We planned to try the scan without anesthesia but needed to have her fast just in case. So, after a hour or so of waiting we were called back to the CT room to try without sedation. When we got in the room I began asking when they were going to start the IV for contrast. The tech thought I was talking about sedation and proceeded to tell me this was just a practice run and they don’t do IV’s in the CT room. Lucy vocalized a few times she was scared without fussing or crying, just matter of fact, “mom I’m scared”. She did great!! I talked to her about why she was scared and we got through it and she laid down on the table and got strapped in. We did the practice run after sitting for several minutes waiting with her completely still. Of course, when the table moved for the practice run she looked all around with her head. We explained that she couldn’t do this when they took the pics, etc.

Then the time came for the real run and the confusion over the orders came up. I had spoken with the Dr. and hospital the DAY before to confirm ALL orders so I would know what was going to be done so we would not have to do things twice. Well, the CT tech proceeded to tell me they had spoken with the Dr. and they didn’t need contrast, etc. This scenario frazzled me a bit and they don’t really give you much time to prepare the child/talk them through it before they say “OK lets start the REAL scan”. Unfortunately, Lucy moved her head slightly on the very end of the 20 second scan and it didn’t come out. The tech was nice enough to try one more time but she moved her head at the exact same point (when the table was coming back out of the machine, she looked back a bit at something behind her). So, we ended up having to do sedation. Everything went just right with this but I was very nervous because if something went wrong they would have to intubate. Since she can’t open her mouth this would be a more pressing issue. I could tell even the anesthesiologists were a bit concerned about this. They reassured me though, as they should. She is back to her normal self today, running around and bossing everyone in the house. This was a good introduction to the hospital again for when she will have to go back in for surgery!!

We won’t find out the results until the Dr.’s office gets them and we come back in for the consult. So now we wait.

First of all let me apologize for not updating you guys sooner.  We decided to take things one step at a time and shortly after that Lucy along with several of us got sick.  So, we have been focusing on getting everyone healthy before pursuing any further steps.  It seems as if that sickness has passed so I made the appointment for her CT scan for this coming Wednesday March 10th.  We are still praying for a significant improvement over her last x-ray.

Since I last wrote I have found out some new information.  First, the procedure the doctor explained to me, removing the jaw and replacing with a rib graft, seems to be the worst case scenario.  In my research I found out that the ankylosis can be true (bone) or false (fibrosis tissue).  We are praying that it is only fibrosis tissue as this would be possibly a less invasive procedure.  Also, I have found out that there are several different kinds of procedures that can be done to correct this, so we now have some questions to go on when we meet with the TMJ specialist with her CT scan results and get a second opinion.

Lucy is doing great considering all she is going through.  She was up all night last night with a stomach bug and  despite the normal discomfort of throwing up I’m sure it was especially hard for her because her mouth does not open enough to let things escape in a timely manner.  This morning she was complaining of a very sore throat.  It is incidents like this that make me eager to have her jaw corrected.  I still have some fears but God has been working them out.  I’m not sure they will completely go away as we are talking about my child going in for surgery with blind intubation on top of everything else.

Anyways, I can’t thank all of you enough for all of your prayers and support.  We continue to feel God’s grace upon us and know that whatever the outcome of the CT scan Wednesday we trust in God’s will and hope that we will be able to use everything for His greater glory.