Another development in the last week has to do with Meagan's GI doctor. As you know, the whole debacle of trying to see a new doctor at her GI practice has been quite a feat. We finally got an appointment for late March, and we were all set to go. However, just a week before that the kids had fallen ill again - some with the usual "creeping crud" viruses and then 3 of the girls developed Strep. Maura seemed particularly bad for some reason. I couldn't figure out why she seemed so terrible especially since she had started on her med and been resting. However as the afternoon went on, I knew something was terribly wrong. She was the true sense of lethargic. Not very responsive. Was "passing out" standing up. Then as she was laying on the couch that evening I took her temperature - 106. I double checked with another thermometer - 106.4. I knew I had to take her into the hospital. I called Brian who left work immediately and came to meet me so I could take her in.
Fast forward to the end of the week - after decidedly being the "squeaky wheel," and enlisting the help of a few dear friends who also see the same doctor we were supposed to see, the office manager called back a few days later. She had "magically" found an appointment open for the very next Wednesday. She didn't sound too pleased on the phone. (ha)... but sometimes it pays off to keep pushing (and have a few good friends pushing right along with you on your side). We were all set for a Wednesday morning appointment and I was very glad.
We got into the office early on Wednesday. We met the new GI, Dr. B, for the first time who was incredibly nice. We went through Meagans history from the beginning....her birth, her eating troubles, what we have done over the last year and a half to help her, and what our goals were for her future. He was very thorough and talked about two options for Meagan in his opinion. First would be placing another NG tube (the tube that goes through the nose) to try and bolus her feedings. Basically, whatever she didn't finish in her bottles, we could bolus through her tube. The second option was to go straight to a gtube. (tube that goes directly to the stomach). We talked thorugh the pros and cons of both options, and he asked my opinion. I told him I really had no opinion for or against either - my only worry with the NG would be she would grab it out. It is a blessing that she is able to grab now and use her hands - but - it makes things like this tricky. I just had a feeling she would not tolerate it. He suggested we try - and if she pulls it out, then we know we need to go to a gtube. He said instead of waiting around why not come back the next morning for a nurse's visit - since Meagan had already been on an NG tube as a baby, he felt no need to admit us to the hospital to place it. He said the nurses could do it the next morning and then give me a quick refresher course on how to care for it. I agreed and we left the office.
The next morning I returned bright and early with Meagan. We met Dr B's nurse and she took us back to a room to get the tube placed. I knew almost immediately this was probably going to be a no go. Meagan fought and fought the whole time and did not want anything to do with the NG tube. I really don't blame her. She hadn't had one since 8 weeks old, so why would she tolerate it now at almost 19 months old. But, nonetheless, we tried. We wanted to see if I could get her distracted and even asleep for a little bit if she would grow to tolerate it.
As soon as we pulled into the driveway, I called the Dr. B's nurse. I explained what had happened and how Meagan had pulled her tube three times, the last time almost choking on it. I told her at that point, we were skipping this step. It was quite obvious she wasn't going to tolerate it. We were comfortable with moving on and talking about placing a gtube. She agreed and said she would have Dr. B call Dr. R to see if by chance they could coordinate surgery on Tuesday. Dr. B said it probably wouldn't happen, but he would ask anyway, which I appreciated. Dr. B called us back yesterday and said as he suspected, he could not coordinate surgeries with Dr. R. He said the Chiari surgery is too invasive and lengthy for Dr. R to feel comfortable coordinating another surgery with a child Meagan's size. I completely understood and wans't disappointed. It would ahve been nice, but, Dr. R knows best. Dr. B said to call back after Meagan's Chiari surgery and we would schedule her gtube surgery shortly after. So that's where we stand with GI.
I'm so glad we finally got in with Dr. B. He truly shows he cares for his patients and takes the time to listen to the full story and see what the best path is for the child. He tried the least non invasive path first, and when it was apparent it wouldn't work, he moved right on to helping us schedule gtube surgery. I wish the NG would have worked, at least for a while - just to give us a chance to bolus more feeds for Meagan. But, the goal of weight gain is to improve her quality of life. There is no way her constantly pulling at a tube, and crying because it was in was an improvement in her quality of life. We want to help her gain to do more - not make her miserable. So on to a gtube we go. At this point, I honestly feel relief for it.
So quite a lot going on for miss Meagan in the next few weeks. We are hopeful that the Chiari surgery holds some relief for her with her pain episodes and re-motivates her to start sitting up more often again with more comfort. Also, a side effect of relieving some of her Chiari malformation could be an improvement in her eating ability, maybe making a gtube a short term tool she needs until she builds strength. And of course, hopefully a lessening of her apnea and low heart rate alarms. All things that will be great improvements for Meagan, and truly help her keep going towards the better quality of life goal we want for her. Hopefully, at the completion of this next chapter, we see the breakthrough Meagan has been needing. So we wait anxiously for Tuesday. We are confident that God will once again put His healing hands over Meagan and his protective heart along side hers to give her the strength she needs to pull through once again.