We had been discussing the probability of a feeding tube for some time with Kenzie's doctors and nutritionist. She just hasn't been able to get enough calories to put on weight and grow. Traditionally mitochondrial disorders (which her condition has some hallmarks of) have difficulty putting on weight. This combined with her constant motion and muscle contractions as well as just being too tired or frustrated with her hand coordination to eat has meant she has held steady near 26/27 lbs for the last two years... that's right... we've been buying the same diaper size for two years!
After meeting with an actual GI doctor in early June, things moved quickly! The plan was to be admitted for a Nasal Gastrointestinal (NG) tube, which would require a 5-7 day stay for Kenzie. Often times this can be done out-patient. However, again due to the unknowns of her condition as well as her malnourished state, the doctors felt more comfortable with her being admitted. After 1 to 1.5 months, she would then have surgery for a Gastrointestinal tube (G tube) if she tolerated feeds from the NG tube well, which would require another week long stay. Things don't always go to plan though. And in this case, things went better!
Waiting to be admitted...
Thursday night was just spent chilling out in the room.
Watching some Disney Jr before bed... we watched a LOT of Disney Jr particularly after her procedures!
Spent some time playing in the Activity Room...
And on the roof top garden...
The lovely people at the hospital brought some arts and crafts for Kaitlyn to do. This day's project was "painting" sun catchers using coffee filters, water based paint, liquid medicine syringes, and cut outs of marine animals.
Late Friday morning, Kenzie had the NG tube placed. She was NOT happy. There was a lot of crying, screaming, and fighting. She literally passed out from exhaustion not long after.
Watching more Disney Jr while feeds are slowly being introduced. They start out at a very low volume at a slow rate to get her tummy used to it and then slowly increase the rate. She is on Pediatric Compleat (by Nestle). They also have to do daily blood work to test Kenzie's electrolytes. Basically, her body has been starved of nutrients for so long that her body could freak out and have something called "refeeding" occur.
Kenzie's first visit from one of the therapy dogs...
Not much goes on in the hospital on the weekend... Just spent time increasing her feeds and hanging out in the garden and the Activity Room. On Sunday, however, the GI team doing rounds questioned why we were waiting a month for the actual G tube. Her labs were looking good and we were obviously going to need the G tube at the end. Also taking into consideration our distance from the hospital and the fact that the length of the NG tube could affect her mobility and her ability to continue her therapies, he thought the surgeons should at least be consulted while we were in the hospital.
Sunday night we met with the surgeon. He also thought we could go ahead with the G tube surgery while we were in the hospital. He said he would have to check with the schedulers, though because it was a holiday week and he wasn't sure if there would be any OR openings.
On Monday, they attempted to do another swallow study which did not go well. Kenzie pretty much refused to drink water from her cup. We did get her to take 2 sips of water which showed she aspirated, so she now has a prescription for something to thicken her water.
While we were in the hospital, Kenzie missed quite a few Sea Dogs games. Kevin got an e-mail with a special message for Kenzie from her buddy, Slugger!
On Tuesday, we found out Kenzie's G tube surgery was a go for Wednesday! She also had another visit from a therapy dog. This one brought a little treat because of the upcoming holiday. Kenzie loved it!
We had some pretty amazing nurses... one of them, Colleen, was a freaking Braiding Queen! I will never see Kenzie's hair this cute again! Here she is getting her medicine through her NG tube for the last time!
Waiting to be called for surgery...
We ended up waiting a while. She was supposed to be the first case of the day, but an emergency came in. She ended up being brought down around noon.
In pre-op!
I am always in awe of how much our work communities come together for us! Kevin's work has donated so much sick leave to him that although he had run out, he can now be home to care for Kenzie as needed. Both of our offices raised money to assist with hotels, food, and incidentals while we were in Boston since the extreme short notice and lengthy stay was difficult. One of my coworkers anonymously donated hotel points- enough for 6 nights! Another co-worker has a friend at the Salvation Army who donated 3 nights.
Then, while Kenzie was in surgery, one of my coworkers from the Portland office stopped by the hospital to check on us. He took Kaitlyn to Red Mango for a smoothie while we were waiting. And the head of the Boston office (my boss', boss', boss!) and the person under him (who also visited Kenzie in the PICU in Portland after her horrible seizure a year and a half ago) stopped by to check on us too!
Post-op! Surgery took a bit longer than expected, but went well. It was weird seeing her without the tube on her face. Even though it had only been a few days we had gotten used to it. She woke up angry... as is her MO. Plan for the next 24 hours was to slowly reintroduce feeds, continue monitoring electrolytes, and manage the pain. Lots of resting- sleeping and Disney Jr.
We spent 4th of July in the hospital...
At this point we'd been at the hospital so long, Kenzie's original balloons were losing air. So she got a new one. I fell in love with this one. For perspective- it's almost as big as she is!
Kenzie woke up screaming in the night in obvious pain. The doctors came to see her and she got another dose of morphine which allowed her to sleep. By morning, it was decided the pain was not surgery related, it was most likely because she was "backed up". She got an enema, which shockingly she did not protest. Before the poor nurse had even turned back around, things were moving and shaking! She was pretty impressed by the amount Kenzie produced, haha. And even apologized to the poor custodian who emptied the trash- told her that she wouldn't believe how cute the kid was that produced that!
Within minutes, Kenzie was up trying to crawl around on the bed. She couldn't be held back so we brought her down to the Activity Room to burn off some energy. Talking with the doctors, we still opted to stay another night just to be sure that Kenzie was feeling well and the pain was related to THAT issue.
After 10 days, 9 nights, 5 roommates... we were FREE! Kenzie saved her 4th of July outfit to be a Freedom from the Hospital/ Independence Day outfit...
In all the craziness of the hospital and surgery, Kevin and I had completely forgotten it was our anniversary until the first "Happy Anniversary" text rolled in. Kevin recovered much better than I did and came up with tickets to the Downton Abbey exhibition currently in Boston! More proof he is the best husband ever!
No comments:
Post a Comment