MyQTpie
01-26-2008, 01:01 AM
OMG! You guys would never guess what happened this morning! I woke Quinn up and started to get her changed and ready to go to our therapy this morning and her tube was gone! Yes, her mic-key button was GONE! There was just a red closed up hole in her belly with NO tube! It was laying in her bed. I freaked out! All the offices were closed so I couldn't call anyone. I just went to her therapy and left a message and was waiting for a call back.
They called while in therapy and I explained what had happened. It looks like the balloon had ruptured. This was a BRAND NEW BUTTON!! They just replaced it yesterday while she was inpatient! So she tells me that I needed to come back ASAP and explains that the hole could close up really soon if not already and that she would probably have to go through another sedation and procedure. OMG!!! i started flipping out and told her that I would be there as soon as I could. I started to think, "ok, so what if I just left it out? what would happen? I mean she CAN eat by mouth and some days she does really well. So maybe we can get an N/G tube instead of taking this kind of risk again." I mean my thoughts were going wild!!! then I thought, "what if she ends up losing weight? If we wait a few more days the hole will surely be closed and then she will definitely need to be under for a new button. Maybe I should just go there and see what happens." Then i started calling family. My dad was there to talk to me. He was kinda in the same boat as me. he really doesn't like to see her with the button in, but also supports the idea that she needs it for a little while longer. so then i called my dear friend who gave me my little pep talk. Just what I needed. And I made the decision that the best thing would be for her to keep her Mic-key button. So, we took the 2hr journey back to Loma Linda.
It was aweful. I was crying because she was crying. i'm just so sick of doing this. i'm so sick of her having to go through all this pain. She was so scared. They had to use a few caths to dilate the hole a little, but she did not need any sedation and the hole hadn't closed up, which was surprising to us all. She ended up with a smaller mic-key button, which I think is much better. Her GI doctor did the minor procedure and he is great. He said that he was trying to avoid us yesterday because every time he comes around, things with her go haywire (she was discharged yesterday after 24hrs inpatient for respiratory distress after sedation). HA! Well, I guess now we know that it is not because of him. She had to get an xray to check the placement of the mic-key and things were good. That was long and grueling because Quinn was in so much pain from the g-tube and she was screaming for an hour. Plus they had to strap her down and I just couldn't take it! I started crying and I couldn't watch her go through that again. My poor baby!
I had a talk with the GI doctor though about Quinn's course of treatment. he asked how the Sucraid was working and I said that although there isn't as many diarrhea diapers, the stools are still loose. So he said that maybe they will have to increase the medication. But Quinn is in a research study for those meds I guess he has to talk to the company about it because they will tell him what to do. He said that they may want him to take a biopsy to see what group of the disease she falls under. I don't want him to do a biopsy and he definitely didn't seem to want to do a biopsy on her. We were both very apprehensive about that procedure so he said that we'll just have to see where to go from there.
So, Quinn came home a few hours later and we are hoping to steer clear of Loma Linda for a little while.
BTW: her MRI results came back normal. All of it, except they said that her lymphnodes were swollen suggestive of environmental allergies. ARG!!!! I mean I'm very happy that they results were normal, but gosh, I feel like that was a whole ordeal to have to go through for them to be normal, you know? i guess that it is better to know than to not know. I asked if she still has cerebral palsy then and they said that yes she does. There is just no physical abnormalities if that makes any sense. Well, it's time for me to go. I'm tired.
Thanks for all the support. I know I don't get on here much to support you all... I do think about you and read from time to time to stay informed. Life is just so busy with school this semester, plus with everything going on with Q. Thanks for being there anyways!:hug:
-Sarah
They called while in therapy and I explained what had happened. It looks like the balloon had ruptured. This was a BRAND NEW BUTTON!! They just replaced it yesterday while she was inpatient! So she tells me that I needed to come back ASAP and explains that the hole could close up really soon if not already and that she would probably have to go through another sedation and procedure. OMG!!! i started flipping out and told her that I would be there as soon as I could. I started to think, "ok, so what if I just left it out? what would happen? I mean she CAN eat by mouth and some days she does really well. So maybe we can get an N/G tube instead of taking this kind of risk again." I mean my thoughts were going wild!!! then I thought, "what if she ends up losing weight? If we wait a few more days the hole will surely be closed and then she will definitely need to be under for a new button. Maybe I should just go there and see what happens." Then i started calling family. My dad was there to talk to me. He was kinda in the same boat as me. he really doesn't like to see her with the button in, but also supports the idea that she needs it for a little while longer. so then i called my dear friend who gave me my little pep talk. Just what I needed. And I made the decision that the best thing would be for her to keep her Mic-key button. So, we took the 2hr journey back to Loma Linda.
It was aweful. I was crying because she was crying. i'm just so sick of doing this. i'm so sick of her having to go through all this pain. She was so scared. They had to use a few caths to dilate the hole a little, but she did not need any sedation and the hole hadn't closed up, which was surprising to us all. She ended up with a smaller mic-key button, which I think is much better. Her GI doctor did the minor procedure and he is great. He said that he was trying to avoid us yesterday because every time he comes around, things with her go haywire (she was discharged yesterday after 24hrs inpatient for respiratory distress after sedation). HA! Well, I guess now we know that it is not because of him. She had to get an xray to check the placement of the mic-key and things were good. That was long and grueling because Quinn was in so much pain from the g-tube and she was screaming for an hour. Plus they had to strap her down and I just couldn't take it! I started crying and I couldn't watch her go through that again. My poor baby!
I had a talk with the GI doctor though about Quinn's course of treatment. he asked how the Sucraid was working and I said that although there isn't as many diarrhea diapers, the stools are still loose. So he said that maybe they will have to increase the medication. But Quinn is in a research study for those meds I guess he has to talk to the company about it because they will tell him what to do. He said that they may want him to take a biopsy to see what group of the disease she falls under. I don't want him to do a biopsy and he definitely didn't seem to want to do a biopsy on her. We were both very apprehensive about that procedure so he said that we'll just have to see where to go from there.
So, Quinn came home a few hours later and we are hoping to steer clear of Loma Linda for a little while.
BTW: her MRI results came back normal. All of it, except they said that her lymphnodes were swollen suggestive of environmental allergies. ARG!!!! I mean I'm very happy that they results were normal, but gosh, I feel like that was a whole ordeal to have to go through for them to be normal, you know? i guess that it is better to know than to not know. I asked if she still has cerebral palsy then and they said that yes she does. There is just no physical abnormalities if that makes any sense. Well, it's time for me to go. I'm tired.
Thanks for all the support. I know I don't get on here much to support you all... I do think about you and read from time to time to stay informed. Life is just so busy with school this semester, plus with everything going on with Q. Thanks for being there anyways!:hug:
-Sarah