The beginning of the week started with a visit to the Cardiologist office. Charlotte's blood pressure was 100 in the office, no crying or fussing. So, as we thought, we are going to probably have to increase her medications again. Ideally, he would do it Thur. morning, however, we have an appointment with Charlotte's surgeon that morning, so we are returning to the office Thur. afternoon for a BP check, and if it is still in the higher range, we will be returning possibly Friday to increase her medication. The worst part about increasing her medication is we have to stay in the office for 4 hours after we increase it to be sure we don't bottom out her BP. That will be difficult, but really not any more difficult that anything we have already done.
Monday evening, we also went to Charlotte's pediatrician for some of her vaccines and just to talk everything over. I also spoke with Charlotte's GI Dr. that day, and since Charlotte's intake has gotten so bad, we all agreed that we should possibly try the NG tube until we could have the other surgically placed. On a good note, Charlotte did not lose any more weight yet, she is holding her own at 16# 9 oz. But, she didn't gain either... a plateau is not a good thing.
So, today, Tues. we went to the GI Dr. to place the NG tube. We did not leave with it in... As we had feared all along, that Charlotte would gag/vomit with it in, she proved us right. But, at least we gave it a shot, and we can truthfully say that she is not a candidate for such a thing and our only option is the surgically placed tube. It was horrible to see her gag, cry, vomit and struggle to breathe with the tube in, and I knew that I could not see her or do that to her every day. But, the Dr. agreed that it was just too much for her. We don't want to make things worse.
So we left the appointment knowing that our GI Dr. is going to call the surgeon that we are seeing on Thur. and tell him that we have some urgency to get the surgery done, and hopefully he will be able to fit us in in a timely manner. In our eyes, it would be ideal if it were sometime this weekend or early next week. We should be able to schedule the surgery on Thursday.
If you remember also, there were some concerns that Charlotte's tummy wouldn't handle the tube feedings with her delayed gastric emptying. There is something else we can do for her via the tube they will place that will bypass the stomach completely and go into the small intestine. If we had to resort to that though, she would have to be on continuous feeds vs. the bolus feedings we hope to do to resemble "meals" more.
And so you may be wondering, how we are doing? Honestly, we are just simply drained. No other way to put it. We both feel as though we have given our best, but we have no choice but to place this tube so we can help our little girl. Someday, she will thank us. Right now, I just wonder how long she will last if we don't do it. And that is a much scarier thought than doing the surgery. So the answer is clear.
The Hawns
1 comment:
I have followed Charlotte's progress throughout the year and before when you were in the hospital. She is such a beautiful happy little girl. you guys are doing everything right, and even though it doesn't feel like it sometimes she knows you are doing everything you can for her. My thoughts and prayers are with you and I hope and pray that she starts to put on some weight when she gets her new tube. Now is this something she will have to always have, or will she be able to eat normally someday. You both are very strong, and the love you have for your daughter shows immensly. Charlotte is a gift, and she proves that every day. She proves to all of us that miracles happen.
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