We have a new computer - yay! It feels like it has been a long week - a lot has happened. We are still struggling with Katie's blood sugar levels. As I indicated last week, I started Katie on the full Hydrocortisone (steroid) pill on July7th - and no improvement - Katie continued to have low blood sugars - every day. We were up in Heber for 4 days (6-9th). I put a call into the Endocrinologist (and Oncologist nurse) as soon as we got back. Katie had 6 consecutive days of morning low blood sugars. She even had a low blood sugar episode in the evening on July 7th (which was very unusual and concerning!). Poor thing - I have turned her into a pin cushion! After what happened last week when I posted - waiting and wondering - and then regretting waiting, I didn't want that to happen again, so I have OVER checked her - all hours of the night and day. For those who don't understand, a lot of children with a blood sugar around 38 or so, would be non- responsive (according to the Endocrinologist nurse), and would not be able to drink or eat to raise their blood sugar. If is goes too low, she could have a seizure or go into a coma, or worse.... After speaking to the Endocrinologist, and the Endocrinologist nurse - I still have more questions than answers! The nurse was very alarmed by what has been happening (for months) and seemed very disturbed by the doctors lack of alarm about what is happening. I emailed the doctor on Friday, about my questions and concerns, and I am waiting to hear back from him - on a multitude of issues. Like, shouldn't we have a glucagon kit here at home in case Katie does become non-responsive and is unable to drink juice.
When I spoke with the doctor last week, about her low blood sugars he just said, "Hmmm. I am not sure, I guess try upping her steroid to one and a quarter pills and see if that works. Then e-mail me on Friday and tell me how she did." I was so frustrated with that response! I did increase her steroids for the 2 days and she did fine - but like I told the doctor, that may be because the increased dose worked, or it may be because Katie didn't have a low blood sugar episode (I suspect the latter, because based on months and months of experience).
Additionally, we were also back to our original concern with the daily steroid.... Katie is very sensitive to steroids - apparently even low dose steroids. Once again, Katie was not herself. She was very emotional. Gone was the laughter and smiles - replaced with lots of crying, yelling, and pouting. Katie was eating constantly - outrageous amounts - and if I tried to stop her or not feed her, she would get very upset. She was also more lethargic - and she was sweating all the time ( which lead me to test her blood sugar more, to see if she was sweating due to the steroid, or due to the low blood sugar). Katie was miserable. I was miserable. How could I do this for 6 months!? How could I do this to her for 6 months!? -- Scott said we couldn't and wouldn't. After 6 months of behaving like that, she wouldn't even know herself anymore. It would be tragic for her - and us - if she lost her sunny disposition. Ironically, she is what helps me get through it all - she is by nature, so happy and positive. I do not want to take that away from her.
The Endocrinologist's response was " I guess...." - well, I can guess too. The doctors don't know what to do for her - and what they are doing isn't working - and has actually in some ways made matters worse. If you remember, a couple of months ago, I tried waking her in the middle of the night to give her corn starch and that didn't work. -- Of course not, who would want to wake up in the middle of the night to take 2 tsps of cornstarch mixed with water! So, we know that won't work.
And the steroids are not working (in several ways), so we have decided not to give her the steroid anymore, but instead we have decided to wake her up around 3 or 4 a.m. and give her juice and a carb/protein snack. Scott and I feel this is a MUCH better solution to the problem. I can do this for 6 months - it is just like waking up in the night with a newborn. It is not a perfect solution, but we think it will be much better for Katie all around. I will speak to the doctor about it tomorrow - but like I said, they haven't come up with a solution that works. I hope this will!!! - I will ask again for a glucagon kit, just in case she ever does become non-responsive.
I also had to call the Oncologist (again) on Friday. Katie has gotten 3 sores just on the inside of her bottom lip. Her lip is a little swollen and red - and the sores are painful. Mouth sores are a result of the chemo, and we have avoided it so far, and I was hoping to avoid it all together. I also knew that could mean that Katie's levels had dropped. The nurse said as long as she was acting "appropriate" and the sores did not get any worse, then we wouldn't need to bring her in. I am just glad the sores are not in the back of her throat, and hopefully the sores she does have won't get worse. --So like I said, we had a lot going on this week!
Katie had a "break through" at church today. Katie and Conner are very shy. They rarely - if ever - talk to anyone outside of our family. I have never seen them give anyone "five' (that isn't a family member). However, on Sunday, Katie's primary teachers told me that Katie had a GREAT day. Katie talked to them, and joked with them, she said the closing prayer, and she gave her teacher "five" without hesitation! Katie really enjoyed her day. I am so glad!
I realized after my last post that I hadn't said what I was "glad" about. I had forgotten to be glad. So today, I am glad for Katie. This week she is my inspiration. Scott and I love her sweetness and goodness. She is so good! This week Katie told me, "You are the kind of Mommy I always wanted. I wanted a nice Mommy, and you are nice. I wanted you for my Mommy - you are the best Mommy I ever wanted." So sweet! - She always says to me, "Best friends?" I reply, "Best friends" and then she hugs and kisses me. I don't know where she got that from, but it is sweet. - Katie also compliments me all the time. She will tell me I look beautiful, or that I am really good at cooking yummy food, or she likes what I am wearing, etc... - Katie is quick to smile and ready to laugh. And what a laugh! Katie and Conner both have the greatest laughs - it is contagious - you can't help but laugh with them! Katie is very generous with her laughter. I am truly a blessed mother.
"There are two purposes for life in mortality. The first is that we might gain experiences that we could not obtain in any other way. The second is to obtain tabernacles of flesh and bones. Both of these purposes are vital to the existence of man. We are now being tried and tested to see if we will do all the things the Lord has commanded us to do. These commandments are the principles and ordinances of the gospel, and they constitute the gospel of Jesus Christ. Every principle and ordinance has a bearing upon the whole purpose of our testing, which is to prepare us to return to our Heavenly Father and become more like Him." (L. Tom Perry, "The Plan of Salvation," Ensign, Nov. 2006, 71)
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