I wasn't sure what to expect at the appointment with Dr. Magnuson last Thursday, June 14th. He pretty much explained what all is going on with her bottom. I had no idea, just that she'd need surgery, as Dr. Stewart said... "to move butt". That's all we'd been told jokingly by him and nothing said by anyone else. We weren't even sure what he meant by that. So, a visit with Dr. Magnuson was very enlightening.
Like I said, I had no idea what was wrong. He said that the connecting piece between the bowel and anus was not in the right place and was most likely causing pressure to build in her bowel causing bacteria to grow. So, when I told him about her diaper rash that is causing her to bleed and look bruised, he said it's all related to the problem he will need to fix in surgery. The bacteria build up is apparently causing the problems with her skin. If we can't get it under control in the next couple of weeks, he will have to put a colostomy bag on her until surgery. Part of the problem is that connecting tube is being stretched since it's not in the right spot, making it smaller. There is no muscle at the opening to control it, so this explains why we get sprayed when we lift her legs while changing her diaper. The pressure is too much especially if she coughs, cries, sneezes, or hiccups. There's more details I could go into, but I've probably said more than I should.
The bottom line (pun intended) is that he will close up the current hole, move the tube over to where the muscle and everything else is set for it to be, open a hole there and we're good to go (pun intended). I don't know, this is not the nicest subject to discuss publicly, so I'm throwing in some light-heartedness to balance it out. Not trying to offend anyone. :o)
We will have to go back every 2 weeks now to see Dr. Magnuson so he can observe how things are progressing and determine what needs to happen while waiting for surgery. He said he would have to talk to Dr. Stewart, her heart surgeon, as to when to do this surgery. She has to be fully recovered from her heart surgery since she will be leaning and propped up on her chest cavity for a minimum of 3 hours. I don't know when any of this will be now. Initially we'd been told this surgery would be at 6 months old, and so Dr. Stewart said that he would put at least 6 weeks between surgeries for adequate healing. That meant her heart surgery was to be in mid September and the bottom surgery would be in November. All we are hoping for and praying for is that they can both somehow still be during 2012 to both be under this same deductible.
Our last bill from CC said we needed to pay $62,000 by the end of June. The bill only had insurance accepting to pay $22,000. This isn't correct I hope, and Lowell is trying to sort out why it says insurance isn't paying for many of these things. Just more ways to trust God. The whole financial part of this process is stressful for Lowell especially and causing more dependency on God to take care of us and provide a way for us to pay whatever we have to pay. God's been so faithful so far, I don't see Him stopping now. :o)
We have a beautiful baby girl. I still can't believe it at times. God has been so good to us! Thanks again for the prayers and support. Oh, and by the way, could you pray for Cayla tomorrow, Thursday the 21st, as we take Cayla in to her pediatrician for her 2 month immunizations/vaccinations. Not anticipating this to be a happy day. We'll see. I'm not even sure how many shots she'll need tomorrow. Thanks again! Gotta run... it's time to feed Cayla again!! :o)
Thanks for being specific so that our prayers can be more specific. It sounds like the doc has the bottom problem figured out with a good fix. Praying for Cayla Joy and for you all as you wait on the right timing for everything to take place. Praying for that rash and bottom soreness to be healed. A severe diaper rash is not good and this one is compounded. PRAYING FOR CAYLA AND FOR YOU ALL! Please give her a kiss for me!!
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