Annabelle's button has needed to be changed for quite some time. The issue is that I hate to change her tube while she's battling granulation tissue as I can only imagine the process would be excruciating. Since we've been using her tubey belt, she has kept her tubey from injury and any issues. I am so proud of her, and it's such a relief to see her able to play and climb without the fear that she's constantly going to hurt herself. When granulation tissue begins, it's an uphill nightmare for several days / weeks until we can regain control and help ease her pain. Gosh I hate it so much for her.. but fortunately, she's been doing well and with a couple weeks wearing a healthy tubey, AK and I decided last night that it would be good timing to go ahead and change hers out.I admit, I was also secretly praying and wishing for our new tube to arrive in our latest shipment anyway, and our prayers were answered - it did! Annabelle's new tube is different from the tube she's been wearing since having it placed. She currently wears a Mic-key Gtube. This new one is called a Mic-key, MiniOne Gtube. It has a much lower profile, therefore making it less susceptible to being hit / snagged / pulled / injured. The MiniOne is also much smaller than the standard Mic-Key and I begged our insurance company for months to please, please approve us to have one! I wanted all the tubey injury to end for Annabelle and they agreed :) Yay insurance! FOR ONCE!!!
(Don't get me wrong. There isn't anything at all wrong with the standard tube.. it would be fine for someone like you or I to wear, but it's very difficult for a little body that's full of sillyness and adventure to keep it protected. Annabelle doesn't hesitate to attempt back flips from her bed or slide down playgrounds on her tummy... you would think she would get used to the tube by now, and she has! but in a terrible terrible way that she refuses to protect it until it's too late and already in terrible pain. She's a hardheaded wild child - we needed something much smaller until the toddler can understand our reasoning when she's playing rough.)
Annabelle was put to bed at usual bedtime but woke up again nearly an hour later crying that her tummy hurts, she needed to make bubbles and her tubey was hurting her. That's when I decided 'yup , were changing that tube out.. something hasn't been right for a couple weeks now and it's time', AK helped Annabelle make bubbles while I gathered all the supplies needed to change out the tube. While Belle was making bubbles, she jumped and knocked over the full 60cc syringe of gastric juices, old formula and stomach bile - welcome to the fresh, eye watering scent of my home! (gag). I continued to get things together and cleanup Annabelle while AK began stripping her bed and cleaning the potent mess.
Finally it was time. With hands thoroughly washed (pep talk to make them stop shaking), distracted Annabelle watching a little video on my phone, I withdrew the fluid from her tube and exhaled - AK stood next to me holding the new tube ready for insertion. I withdrew the tube.... and it stopped. What? Why? No...... I tugged a little more and Annabelle gasped so loud as if the air was completely sucked out of her little body - I ignored her reaction and focused hard on her stomach, kneeling down closely to take a look and continued to pull.. it was stuck. I swear, it was stuck! I pulled some more and the screaming began. My heart sank deep into my stomach and I did what I NEVER EVER do - I looked at AK with teary eyes and said "I can't do it. Something isn't right - you have to do it". We switched places and I assumed the role that I am best at, and have mastered over the years with Annabelle 'providing comfort, honest answers and distractions when medically she is being subjected to things no parent wishes their child ever were. I began to sing to her our song and held her little cheek into the palm of my hand so she would make eye contact with me and not on what daddy was doing to her. It barely worked.. I spoke calmly and continued checking on the progress that AK was making.... he was wiggling and trying to pull the tube out the best he could but again, it was stuck! Finally something began to emerge - it was black.. this thick black stuff began to pear from her stoma (hole in her stomach) and I gasped. I didn't understand what that could have been.. I hated myself so much for not being able to do this at home on my own. I can place NG tube's with my eyes closed and 150% confidence - but why can't I replace a gtube?! What is wrong with my kids stomach that makes this an excruciating process??
I grabbed the tube from AK and wanted my own assessment of where we were - it was now stuck inside and out.. you couldn't push it back in and we couldn't pull it out. My fear was that something was caught inside her tummy and that is what caused the problem - each time you would pull on the tube to remove it, Annabelle would scream the most horrendous painful scream and you knew she was undoubtedly in so much pain. Finally AK pulled so hard I just knew he was going to rip her poor stomach. When he did, the tube finally came out with Annabelle's finally scream and behind it was pouring stomach juices, lots of chunky gross stuff, etc. It began to cover Annabelle, the towel she was on and soaking my bathroom vanity/sink.. I wiped as much of the gross stuff off her stomach around the stoma as I could and then began to try to place the new tube in the hole - immediately I discovered the problem. The stoma itself is so much smaller than the large portion of the tube that inflates and needs to be inserted.. getting over that place on her stomach requires stretching of her skin and tissue to make the insertion possible. I used as much lubrication as I possibly could and it was less than helpful.
The screaming and pleading from Annabelle began again "Mommy, mommy please stop! You hurting me! PLEASE mommy! Stop! THAT HURTSSS" finally, she could hardly speak anymore and I knew she was wearing down. I asked AK to switch with me again and he did - we looked at one another and agreed quickly - 'we gotta get that thing in there fast... and it's going to frickin suck.. now, go'. I held her arms and torso - I looked deep into my baby girls glossy eyes that looked so confused and begging with just a stare for all this to end and he did it. AK got the tube in and we all cheered for daddy for making it happen. I managed to inflate the balloon after a few minutes of allowing Belle to catch her breath and before checking placement, I picked her up.
I scooped her into my arms, slimy, sweaty, covered in tears and gastric fluid, rotten formula and blood - her little body was shaking so hard that mine began to do the same with hers.. I walked oh so carefully to my bed when I laid her in my arms and a pillow so very still and just talked to her.. I told her how sorry I was, how proud we are for her being brave and how beautiful her new tubey looked in her tummy. She was sore I could tell, but she was also very tired. After a few minutes, AK came to the bed and we connected her extension to make sure we had the placement correct inside her tummy and immediately we could tell we did. I removed a lot of the fluid off her stomach bc I feared she would need to soon vomit and I didn't want any unnecessary matter splashing around in her stomach while she settled down. Mady joined us and sat on the bed with me and Annabelle, she kissed her sissy's forehead and told her how beautiful and brave she is for such a little girl. My babies can be the sweetest things during the times when they need each others support the most. It's amazing to watch.
Soon after things were settled, I carried Annabelle to her room and laid down in the bed with her to snuggle up so she could fall asleep. She was exhausted. Afterwards, we cleaned the mascare of the bathrooms mess from the last hour. AK and I inspected the original tube we had just removed and it was disgusting. I have never seen anything like that before and I was completely ill by the looks of what had been inside my daughter's stomach. The balloon was filled with chunky, floating black stuff and it smelled so horrid you couldn't help but gag at getting near it. That just cannot be normal. The last tubes weve replaced were discolored, her NG Tubes would become discolored - but this was beyond disgusting! I shook my head and tossed it to the side, kept cleaning and disinfected the entire bathroom.. threw the towels and anything she was near into the washing machine and climbed into the scalding hot shower myself to scrub my hands for what they had just done to my poor daughter once again.I love the shower.. it's the only place a mommy can cry and let tears fall and no one knows. I hate days like these, they crush me.. I know they'll crush me.. I would do anything in this world to never have to look at these days again, but I can't. My hands are tied and we HAVE to do these things, regardless the pain it causes .. we don't get a choice - our choice is to care for our little girl and give her the best life we possibly can, and unfortunately, that comes with very very ugly and dark days like these. And at the end of them, there's nothing better than a glass of wine and hot shower to wash the heartache away. :(
Annabelle did surprisingly well during the night. She was hooked to her pumps all evening and didn't have any complaints until this morning that her tubey was sore. I haven't seen any granulation tissue appear yet, but without a doubt - it will surface. Any time her tubey is put thru something as invasive as what happened last night, granulation tissue is guaranteed to rear it's ugly face. We're holding our breath now for that next hurdle.
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