Post Op - Day 4: Feedings and Travel Day
Sorry it's taken me so long to get back to posting updates - it's been a long but good week. The last update I gave was that Faith's feedings were not going well and that she was throwing up so we had to keep decreasing the quantity until it was down to only 15mls (1/2 oz) per hour. That was Thursday, 6/23, and we had been hoping to leave the hospital on Friday but there was no way without her tolerating her feedings. Thankfully, things turned around Friday night.
Faith did a great job getting through the night on Friday (6/24) with increased feedings and by Saturday early am she was up to her goal of 63mls per hour - which would take feeding her 24hrs a day to get her to her total goal of four 375ml feedings. Since she reached the goal, the lead resident told me early Saturday morning that we could be discharged by noon. Dottie, Faith’s nurse on Saturday thought it was pretty humorous that I thought we would be out of the hospital before noon - and I have to agree, you’d think I was a newbie believing it was possible! She teased me, asking me if I'd never met Murphy before!! This is a theme in my life of people calling me out for my overly optimistic outlook on life and thinking I can get a million things done (or 50 lbs of potatoes in a 10 lb bag as Fred would always say), which typically results in me pushing myself and the people around me pretty hard. Anyway, the main obstacle in getting discharged was that we needed to get a feeding pump delivered to use at home. Getting medical supplies delivered is a notoriously frustrating experience for almost every family I’ve ever talked to about it. It always take so many calls and it’s never simple or easy. The Dayton Children’s home supply couldn’t provide it because we were leaving the state and our regular supply company in Denver couldn’t send it to our house because we were heading to VA for a couple weeks before flying back to Colorado. But the Pediatric ICU Resident doc was on it, and he made all the calls to our home company and was getting it delivered. We had the choice of waiting around for it to be delivered to the hospital (which meant no way we’d be discharged before noon) or having it delivered directly to my parents in VA. We really wanted to get on the road for the ~10 hour drive, so made the decision to have it delivered to them and just feed her manually during the drive, by pouring her food into a 60ml syringe connected to her feeding tube and pushing 5mls every 5 mins through it.
We actually did manage to get out of the hospital around 1:30 and on the road to my parents by 2pm and made great time with Fred driving the whole way, Anthony navigating and me sitting in the back seat with Faith feeding her and suctioning her and dozing the whole way. I literally set my phone timer for 5 mins and would fill the syringe, push 5mls of food through it, reset the timer, doze and repeat, each hour I would refill the syringe with another 60 mls. We got to my parents around 10pm and all the sudden Faith was so excited to be there and wanted to show her dad (Fred) where he was sleeping at my sister's house (who lives right next door to them) and she was being her normal spunky self full of energy - it was literally the most active she'd been since she'd gone into surgery on Tuesday. It made me feel so good about bringing her here to my parents. This is a second home for my kids and I'm always happy to see them enjoying their time here.
The bad news upon arriving to my parent's house was that the pump had not been delivered, so I was going to have to continue manually feeding her at that very slow rate. Faith and I shared the king size bed in my parent's guest bedroom in the basement, and after I got her to bed I tried for about 2 hours to feed her through the night the way I had been in the car, but I was too exhausted to do it the whole night. So day by day over the next 3-4 days I started increasing her feedings so that I could sleep at night and take breaks during the day. I have to say I was mostly failing at getting her all of the food she needed - instead of 6 of the 250ml boxes of formula (think of Boost) I was only getting about 4 of them in. It took until Wednesday after probably a half dozen calls and waiting on hold for a couple hours and being hung up a couple of times, and giving them my sob story about not being able to properly feed my kid, to finally receive a feeding pump - by which point I had already gotten Faith up to taking a box and a half (the full 375mls they were originally trying to get her to in the hospital) in about an hour long feeding. I was very close to telling them just to forget it completely! I'm really glad though that it was finally delivered, because I immediately set it up, poured 2 boxes (500mls) of food in it and when she went to bed I connected it, pushed her meds through a port on the tube, turned the pump on and I got my first full night of sleep with no interruptions! And since then I've been able to give her 2 boxes every morning and every night while she is still in bed leaving us just 2 feedings to do in the middle of the day with just one box each - it's been a huge help!
So the hardest part of this surgery for Faith is the fact that she cannot speak or eat for six weeks - because her mouth is basically clamped shut. And the head gear is very uncomfortable to sleep with, although Faith somehow manages to lay right on it - kinda blows me away!! If you know Faith though - she LOVES to eat! This is really uncommon for kids who have g-tubes, especially when that is the only way they are getting food. I will forever be grateful to Kim Fekete - Faith's in home speech pathologist who began working with Faith when she was just a few months old until she started pre-school around 3yrs old. She came to our house once a week and she was the one who taught Fred and I about oral aversions for kids who aren't used to eating orally from birth and that it was super important for us to be stimulating Faith's gums with gum massages and biting toys and by brushing her gums/teeth frequently. Faith passed her first swallow study when she was about a year old and we began letting her taste foods when she wanted to, mostly she would taste stuff and let it fall out of her mouth into a pocket bib. It wasn't the prettiest sight, but it was great that she could sit at the table with us when we were eating and participate as well. When she was around 7 years old my neighbor invited Faith to go to movies with her daughters, and she texted me after the movie ended telling me that Faith drank half of an Icee drink. I replied "no she didn't" rather matter of factly, but the mom thought I was upset with her for giving it to her and she apologized and said I'm so sorry, but then I clarified, "no, I'm not upset, it's just that she can't swallow any real quantity of anything" and then she sent me a pic of the empty cup and said, but she did! I couldn't believe it and from that point on she was off to the races!! The girl wants smoothies, milkshakes, McFlurrys, Starbucks, ice-cream, french fries, cookies, chips, etc, every day and so the challenge of not being able to have it for 6 weeks was very depressing for her, yet in the back of my head I also know it will be motivating. You see, she is ALLOWED to have food, it's just that she can't get a straw in her mouth or a cup to her lips, etc. but I had a feeling she would find a way and within a few days she didn't fail me! At some point she figured out how to stick the feeding tube between her upper and lower teeth and starting making herself smoothies and will lay on the couch, and let the smoothies run through the tube into her mouth - YAYYYYY!!! I knew she would figure it out and I'm so glad she can have at least something sweet to taste.
Family, Baseball, Zoo and Pool time
All in all, things have been going smoothly. It's tiring and round the clock for sure, but each day gets easier, with less care. Faith let me wash her hair a few days ago and I've even seen and heard her laugh a few times. Fred had to fly home on Monday morning to get back to work in Colorado. I've been so glad to be able to have my family here and helping us out. Two of my sisters created a spreadsheet for me to track the 8 or so meds I have to give Faith from 6am to 12pm some 2, 3, and 4 times a day - it's impossible to do it without tracking on paper and it helped so much to have that printed out for me. My mom is the constant cook, always in the kitchen until some of us finally had to boot her out and take over!! I made one dinner - grilling some chicken to have with a spinach, strawberry, blueberry salad, but most of the time I am too busy to help with cooking - so I'm super happy to have them.
For the most part we've just been staying at the house most of the day, but we've gotten out for a couple of activities. Anthony really wanted to surprise Faith with tickets to a special baseball game at Nationals Park for Deaf Awareness. Faith was pretty into it and we were able to get her a wheelchair to take her from the entrance to our seats. She didn't make it through the whole game, but the three of us enjoyed being there together. Anthony's girlfriend, Taya, arrived in the wee hours on Tuesday morning so the two of them have been spending all of their days touring DC. I'm so glad Anthony is so interested in all the government buildings, memorials and the museums available here. We even managed to join them yesterday (Friday) to go to the National Zoo - where we rented another wheelchair for Faith. The wheelchair is mostly just to keep people from bumping into her, but I think it helps with her not getting too tired as well. Faith has even gotten in the pool twice and I enjoyed a lazy afternoon just floating around for 2 whole hours and getting some Vitamin
Jaw Distraction Progress So Far
As for the progress of the jaw distraction itself, it is going well. Tuesday will be 2 weeks since surgery. Her face is still a little swollen, but the change to her upper jaw is really impressive and her front teeth in her lower jaw are approaching her upper front teeth from the daily pin turning we are doing (basically pulling her lower jaw forward 1mm twice a day) we will continue turning the pins (distracting) for about 4 weeks total, which means her lower jaw will be far past her upper jaw, but again, that's just temporary until he molds the new bone into the position he wants in order to align it as best as possible. He also told me that he took some bone from her upper palate so that if her orthodontist wants to try to put an expander in again it should work to widen her upper palate and jaw.
I need to call Dr. Gordon on Monday, but my assumption is that we will just go to Denver Children's soon to get xrays to send to him so he can see the progress. Typically we do that a few times while we are turning the pins so that he can decide when we should stop or if he needs to make any other changes. There is a chance he will want us back in Dayton mid-way to check things in person, but in the past we've been able to do it from Denver so I'm hoping we can still do that. I've been extremely fortunate to be able to go on FMLA from work, but I'm hoping I can go back to working from home sometime next week after we get back in town.
Need to wrap this up so I can finally get it posted - I'm sorry it's taken a full week to write this update - hoping to keep up with it a bit better over the coming weeks!
Thanks for reading! 💜
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