Maci has TWO NEW TEETH! One has broken through the gum and the other, you can see but it just hasn't come on through the gum. Current "toofie" inventory: 3 on bottom 3 (more or less) on top.
Bye Bye to the one "hillbilly" tooth on top. I sure will miss those funny, goofy looking grins with that one, top tooth.
We saw the Endocrinologist yesterday. Now, he is NOT wanting growth hormones based on Maci's "good" growth over the last three months. He feels that it can potentially cause harm to her bones if she grows too quickly. Because of her lack of kidney function, she is already at risk of brittle bones which is why she takes two vitamin D meds. He did check her growth hormone level (blood work) to see what it may show and we should know the results soon. Of course, I cried while talking to Dr. Sinha and he frantically searched for Kleenex, that were no where to be found. That is when he said that he would check her growth hormone along with her regular lab work.
When I left, I was disappointed. I AM disappointed. We continue to hit bumps in the road. I plan to further discuss the issue with her Nephrologist when we go to our monthly dialysis clinic visit next Tuesday. I am not sure if it can or will cause bone issues if we do this short term or if her Endocrinologist was thinking long term use. I thought of several questions after I left and calmed down.
This transplant process has been a huge learning curve. Nephrology said her length would not be an issue. The transplant surgeon said "they don't do the transplants" and that YES it IS an issue and he wants her longer/taller. Endocrinology wanted to start growth hormones (GH) 3 months ago but now he does not. GI even felt GH would benefit her with her horrible reflux and Nephrology was on board with the idea where as before said they didn't think it was needed despite Endocrinology at the time saying yes, it is.
The transplant process has been a roller coaster of emotions. It seems that all of the doctors who are treating a patient should talk and be on the same page when someone is getting close to being able to start the process of transplant. I've felt like I have been in the dark on the majority of this, "behind the 8 ball" if you will and I am ready to KNOW what is going on, WHAT to expect and not be let down. I am done with being disappointed. I am SICK of dialysis. I want Maci to be able to spend the night somewhere if someone wants her to. I want to be able to visit my family out of town without having to pack the house because of dialysis or either rush home to have Maci hooked up by 8:30/8:45pm. I would like to stay out late myself. I would like Rick and I to go to the drive in movie. Yea, I know transplant is for Maci and increasing HER quality of life but I am sure that by having her parents enjoy life a little more, wait....who am I kidding?, enjoy life period......that would help Maci too. I am SICK, SICK, SICK of dialysis. YES, I completely understand that it is saving my child's life and YES I am thankful that it does and that she's done so well but I am so very ready for our next phase, DIALYSIS FREE!
Now, I am going to bed until 11pm and then back to bed until midnight and then hopefully back to bed for the last time until about 7/7:30!
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