from January 5th, 2009 Little did I know that, tonight, when Taylor ASKED us to take her g-tube/mini button out, it would end up being such a major and traumatic process.
As mentioned above, Taylor asked me to "please change my tube mommy" tonight as we were getting ready for bed. She said it was hurting and she needed a new one. So, as we have done ever since the surgery took place - just over 3 years ago - we got all of the supplies set up and ready. We took the old tube out, but it was a bit more difficult getting it out than it is normally. It seemed we had to pull harder than usual. However, when we went to insert the new one, it simply would NOT go in. There was so much resistance when we put it in the stoma and it just wouldn't budge. We tried everything - surgilube, twisting, slanting - anything we could think of, but it was not going in. So, after about 20 minutes of trying (and 20 minutes of Taylor freaking out, which she does even when things go perfectly), we decided to take her into the ER at the hospital where her surgery actually took place. I stuck a 10-12 french suction catheter in the opening to keep it from closing up on us (it closes really fast, and would require another surgery if it did), and in we went to ER.
Ok, so I am going to try to make a 5 hour ER visit "story" as short as possible. We got to the ER and went straight back, as usual. The ER doc came in and assessed what was going on. He felt that it would be best to call the pediatric surgeons in, so he did. About 2.5 hours after we got there, the surgeons finally got to us. They were in surgery initially, and then had to go to a trauma patient that had been med-vac'd by helicopter. So, once they were with us, they did their own assessment, and told us we were going to get this tube back in for sure. However, they indicated we were going to have to use dilators - long steel rods that are different sizes and diameter - and find one that fit the opening currently. Once they found the right size, they were going to insert it and then start to switch dilating rods - gradually increasing them in size - to get the opening to the proper size so her g-tube would fit in.
Ok... so that sounds quite painful to me - anyone else out there think the same??? I was ok with the process, as I preferred not to put her under for another surgery, so I consented. But, I told them that she had MAJOR anxiety just replacing a perfectly sized tube in a perfectly sized hole at home, and that it would probably be best to give her some sort of med. The problem was that she has never, since her g-tube placement 3+ years ago, taken a med P.O. (by mouth). They decided to give her a TINY dose of ativan (3mL), but they pulled it up in THREE different syringes (1 mL each). Needless to say, trying to give THREE of those to her by mouth proved quite difficult. And, she considered it quite traumatic as we had to literally fight to get it in her mouth.
That was done, and the pediatric dilators were ordered. However, when opened, the smallest dilator in the pack did not fit into Taylor's stoma. So, the doctors ordered another set - with smaller dilators - that nobody could locate or even seemed to know about. While nurses were looking for the smaller dilators, the surgeons tried to stick the originial tube in (that we had brought with us from home) and they couldn't get that to budge. And, because they had already removed our "placeholder" and didn't want the hole to close up, they decided to go ahead and use the hemostats to try to stretch it -- yes, hemostats... those things that open and close (and look) like scissors, but clamp blood lines off, etc. That didn't work either, and I was so alarmed and nervous seeing those go into my TayTays belly that I could hardly watch. That said, the surgeons went hunting themselves and finally found the proper dilators and it was game time. Now, Taylor had NOT had a nap that day, and it was now past midnight. She had also had a small dose of Ativan and had already been through some major trauma. So, while the search for the proper tools ensued, she conked out. But, never fear, when they showed back up in the room with the right tools, and turned the lights on to start the procedure, she woke up immediately. And, her state of mind was NOT drugged. She either didn't get enough ativan, or it had worn off. But, as they started stretching the hole she started freaking out (as I would have). She said things like "mommy, please help me", and "owie - you are hurting me (to the doctor)", and "please stop - I just want to go to sleep". It was so heartbreaking, but I knew we had to do it. The funniest part of it all was when the nurse asked her if there was a song she wanted to sing, and she responded loudly, emphatically, and forcefully, with "Nooooo!!!!". In adult terms, it sorta sounds like "Shut the *^%$ up and leave me the %$^# alone".
Once the procedure was done, she was so relieved. She said, "It's in, mommy? My tubies in?". We told her yes, and that she was such a BRAVE little girl and she was so excited to have her tubie back in so that she could leave... do ya blame her :)
Note from mommy: This little angel of mine is SO very BRAVE. The things she has had to endure at such a young age makes me so sad, yet she is so amazingly good about it. She amazes me, inspires me, and changes me for the better day by day. Her attitude is incredible - happy, spunky, angelic - even after all the bad stuff - and her will to get through and move on to the next thing is superb. I love you Tay!!!! You are such a blessing to this family and we love you!
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