Gtube Placement

On December 9th Areli had her Gtube placed. She needs a Gtube because of hypoglycemia and failure to thrive. We were admitted on Dec 8th so she could receive TPN and steroids before surgery. TPN is IV nutrition and the steroids were a precaution for her suspected adrenal insufficiency.This kept her sugars stable and also provided nutrition necessary to keep her body from a metabolic crisis during fasting prior to surgery. For people with metabolic diseases, calories and sugars and fats are extremely important, they cannot fast for long lengths of time or else their bodies become extremely compromised.

The surgery went  smoothly, the mic-key button was placed and they also took 3 new biopsies from her liver. She has had 6 liver biopsies total now in her little life. The day before the surgery and the day of she did great. In the recovery room she was resting peacefully and all her stats were good so we went back into her room fairly quickly. Once there she woke up more and it was apparent she was in a lot of pain.

She received morphine through the night and she also continued TPN and steroids through the night and let the g-tube to gravity (which means letting it drain anything in the stomach by gravity). She slept well the whole night due to anesthesia and pain meds. A couple times she rolled on to her stomach and awoke due to the pain. The next morning (day 1 post placement) is when things changed. We started feeds with 2 oz of pedialite at a very slow rate (10 mL/hr) and she tolerated it great so we moved onto 2 oz pediasure at the same rate and every 4 hours decrease TPN to wean her off. Not long into the feed she threw it all up, so we took her off the feeds and back onto full TPN. We tried again and once again she threw it all up about halfway into the feed. This would continue to happen all day long. Her pain wasn't as bad and was coping with a mixture of oxycodine and tylenol. However 15 minutes before she would vomit she would cry in excruciating pain. She spent all day 1 post placement in bed, throwing up. That evening we gave her zofran (an anti-nausea medicine) before we tried yet again, another feed. She tolerated her feed almost all night, I thought we were turning the corner, but first thing she did when she woke up was throw up.

Day 2 post placement was full of more vomiting (this is the day we originally were supposed to be discharged) . Without fail she would throw up before the feeding was complete. Needless to say, I (and my family) did A LOT of loads of laundry. I even did some in the sink when I couldn't sneak away. Gotta do what ya gotta do right?

Areli couldn't hold anything down at this point. Even the 10-15 mL of water I used to flush her tube she would vomit. She was miserable.

We reverted to covering her with towels because she was throwing up so much and I really didn't want to do 2 full loads of laundry a day, one is enough and this made it easier to clean. Despite feeling so crappy, we took her on walks throughout the day to get her out the room and hopefully get her spirits up.

The night of Day 2 post placement wasn't any different. Poor girl continued to throw up and it was very painful for her to do. Up until Day 3 post placement the doctors thought that her vomiting could be effects from the anesthesia and/or feeling nauseous from the pain meds. However by Day 3 post placement the anesthesia was without a doubt out of her system and her pain was only being controlled by tylenol, but she continued to throw up. In attempts to figure out why this was happening she had an imaging dye test preformed because they were starting to think the g-tube might have been placed in the colon on accident. (ummm what?!) Thankfully, it showed that it was placed correctly, I was relieved, but we still didn't know why she couldn't hold anything down. Areli had also developed a cough during the stay and they tested her on Day 3 post placement for any viruses thinking hey, maybe she just has the flu, but those tests came back negative. Turns out she had been aspirating when she was throwing up and we suspected she was developing aspiration pneumonia because her chest was progressively sounding worse and worse and she developed a fever, so we headed off for a chest x-ray. It showed fluid in her lungs, but it had not developed into pneumonia. By this point, it was Thursday, she had nothing in her stomach since Sunday. She had thrown up multiple times a day, had fluid in her lungs causing a painful cough and an off an on fever. We went into the night very uncertain, but always hopeful the next day would be better. She once again received zofran before her night feed and we went to sleep.

Day 4 post placement brought a new ray of sunshine! Areli held her night time feeds down! In the morning she was allowed off of TPN and she was visibly feeling much better.

She held her feeds all day long and things were definitely looking up. The best guess as to the source of the vomiting was constipation. She had not had a bowl movement since Sunday and they wanted her to be able to have one the day after surgery. Finally, Thursday evening after a lot of laxatives she had two golf ball size bowl movements and that seemed to be the turning point. (Ya, ya, ya, nasty I know, but you're lucky I've left more of the hard-runny-stinky-vomiting-poopy-all-over-me-up-my-to-my-chin details out, so don't complain). Areli started to gain more energy and wanted to get up and play, however she hadn't stood on her own two feet since Sunday, and she completely lost her ability to walk or even balance while standing. It was very similar to an 11 month old learning to walk for the first time. She would hold our hands and take the big awkward steps and could not even stand up without help. I was not expecting this and it was very hard for me to see my baby relearn how to walk. To help her remember how her body works and gain strength she rode around the hospital on one of these bad boys.

She continued to tolerate her feeds, but at a much lower rate than her goal rate is but we were eventually able to leave the hospital on Saturday.

Between all our stuff, gifts,new medical equipment we looked like a train leaving the hospital!

First feed at home. I was very nervous about caring for the tube by myself, but it isn't as hard or scary as I thought. The hardest part was getting an active 18 month old to sit still during feeds, so we got a backpack for her.

We took a walk to the park while being fed...

She was able to climb and swing...

The backpack allows her to be a normal kid, while getting the nutrition she needs.

The weeks following surgery were filled with ups and downs. As you can see from the pictures from the park she was able to walk again fully after a week being home and working on it with her. She lost weight from her troubles with her feeds and went down to 19 lbs. She also ended up with a staph infection in her stoma (the hole in her body that the g-tube goes into),but luckily I caught it very quickly and we avoided more hospital time and treated with antibiotics. It was a close call because if I would have given it another day or two to find out if she did have an infection we would have spent Christmas in the hospital, but since we were able to treat with antibiotics right away we avoided the infection getting out of control. Now we are battling granulation tissue (tissue that grows because the body recognizes there is a hole in it and it is attempting to grow tissue to cover the hole) it is nasty growth that is raw and bleeds and it is hard to battle.

She has gained weight though and officially weighs more than she ever has! The tube doesn't bother her at all! She does still vomit occasionally and I don't know what from, we will see the doctors again about this, but overall we are pleased with her new accessory!
This is the pretty, less intimidating way her button can look...

 (Ignore her hands, I always catch her sleeping like this *face palm*)

But we cannot always dress it like this because it doesn't secure her tube enough and the movement creates more granulation tissue. Usually this is the way her tube looks..

I wrap everything with either her belt (I don't have a picture of) or a bandage like this to keep everything secure and it allows for less movement of the extension tube. This is what her tube looks like when not being fed..

..and this when she is being fed...

It looks extensive, but this method is the ONLY way I have been able to get rid of the granulation tissue and KEEP it away. I am looking into a product called grip loks that would serve the same purpose, but look a lot cleaner and easier.

 

We also named her button "Benjamin", ya know, for Benjamin Button!

I want to also thank everyone who helped us out during the hospital stay and after. Amazing family and friends who dropped everything to be with us and do laundry, bring or send food, bring toys for Areli and smuggle in wine for Mommy :) Fellow Mito mommy's who have enough on their own plates took the time to bring us care packages. We really did feel the support and love from our friends and family and mito community. I couldn't have done it without ANY of you, so thank you!

Love, 

Mama Linnea