Autrey and Shilo: Robbie's Month of Intensive Feeding Therapy at OCH Hospital 2019

I am so glad I made such detailed Facebook posts to keep a record of our month in the hospital:

7/22: Why am I still awake at 3:30 am?

Because Robbie and I check into the hospital today to begin his intensive feeding therapy program. I’m hopeful, but also very nervous and anxious. My stomach’s in knots, my head hurts, and my brain won’t shut down enough to sleep. Going to the hospital and being separated from family is never fun for us, but this has the potential to be especially long and brutal. This facility is highly recommended but everything I’ve read about this type of therapy says it will get worse before it gets better. Just praying there ends up being enough progress to justify putting ourselves through it.

I really should be sleeping because I only got one hour of sleep Saturday morning before I was up at 2:30 am to fly home from our trip to Utah. Sleep has been very elusive for a while and I feel like I’m barely functioning. My 7 am alarm is going to come way too fast. I really REALLY hope this hospital stay goes well. Robbie and I both need a win right now

7/23: Yesterday was a lot and Robbie wouldn’t nap until 6 pm because of the strange hospital crib in a new place with tons of people going in and out...so he was up until 11. But the first morning of the therapy schedule has gone great so far!

They are starting nice and easy with him. The day began with meds at 7 and an oral meal (tastes of peach purée and vanilla pudding) at 7:30 am then had Speech, OT, and PT. This picture was taken at the playground before his 2nd meal. Daddy came to visit and is now attempting to rock him to sleep before he heads to work while I quickly eat lunch. The rest of the day is chill with only 2 more structured meals to go. So afternoons/evenings are a GREAT time to come visit me. 😀

Also, how cute are those (American Flag) shoes? All of my boys have worn them. 😍😍😍

7/23: Hello, Nurse(s)! He loves dragging the hallways in his sweet car stroller. He says hi every. Single. Lap. 😆

7/24: Long Tubie Mom Post to Give You a Peek Into My World:

Tonight my feeding pump expertise was put to good use and helped me sort out a mistake in Robbie’s overnight feed. Twice.

I take care of Robbie’s feedings, even here in the hospital when I don’t have to, but was on the phone saying goodnight to the older boys when it was time to give night time meds and start the long overnight feed, so the nurse came in and did it for me. After I got off the phone I looked at the pump and noticed she set the dose for 200 mL (the amount of formula he gets) but didn’t take into account the additional 140 mL free water that should be added to it. I added the water and adjusted the pump dose. It was a minor problem, but I solved it. Go me.

I should have told her what I did but she made an honest mistake I’ve made before and didn’t want to come off as a Know-It-All. I’m glad I was still awake 2 hours later when the nurse rushed in as soon as she realized her mistake and quickly turned off the feed. When she noticed I had already fixed it she started it again. Setting the pump is fairly easy, it’s the troubleshooting that is a bit tricky sometimes. If you’ve never messed up setting a pump before you wouldn’t know that what she did reset the running dose total and erased the 86 mL he just ate. This means if there was enough formula in the bag he would have been overfed by 86 mL. But in this case there wasn’t that much available in the bag so when it ran out the pump would have started beeping at me that it was empty. Annoying, but not that big of a deal.

Being underfed for one meal, overfed with the possibility of throwing up, or woken up by a pump beeping are minor and VERY common Tubie problems so it’s not like I avoided a huge crisis, but I’m proud of myself for honing a particular skill the last 2 years and being the best nurse for Robbie. 99 out of 100 times these awesome nurses can do everything as well as I can, but I feel validated for being here and advocating for his every need even among other feeding pump experts. I’m proud I have mastered a skill I didn’t know existed 2.5 years ago. #tubiemom

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Soooo, the pump started beeping at the ungodly hour of 4:30 this morning. Urgh.

I watched the nurse set the pump last night as I was getting Robbie out of the bath. She set it correctly and put the 340 mL of formula in, but didn’t add a bit extra to account for priming the tube, so it started beeping with 10 mL left to go when the bag was empty. I’m too tired for this to keep happening. It probably also explains why I hear pumps sporadically beeping in other rooms around me. 🤦🏼‍♀️

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And a few minutes into our nap just now the battery started beeping because it hadn’t been plugged in. Oy. I might delegate, but I’m officially in charge now. It’s just easier that way with so many cooks in the kitchen.

7/25: Merry Christmas in July to Robbie and all the kids at OCH! Children’s hospitals are the best.🎄

7/26: Kinesio tape on his face to help with his tight and weak cheeks/jaw. OT is probably his favorite therapy. He loves playing with Miss Christine Roop Vaughan and always asks to “go play” when we walk by the gym. That swinging balance beam is pretty cool.

7/26: Brandi was meant to cross my path. When you meet someone that truly understands and gets what you’re going through, it’s amazing. Brandi is a fellow medical mama who has been sooooo helpful and so great to talk to. Brylie is a MELAS princess who defied the odds and is walking, talking and eating by mouth, even with her trach...and absolutely adores Robbie. She gives the best hugs. I’m excited for them they are on their way back home but I’m going to miss our nightly walks together. #hospitallife #medicalmamas #MELAS #Arthrogryposis #AMCstrong

7/29: G-ma is helping Dylan and Colton have the experience of running a homemade CINNAMON ROLL and APRICOT NECTAR stand (made from Grandma Cumorah Holdaway‘s apricot trees) every morning until Friday to help contribute to Robbie’s expenses. They already sold out today, but if you want to head to my mom’s house in Vineyard later in the week you could get one for yourself...for only $1 each! Deal of the century! You might want to let one of us know you’re coming because she already has 13 spoken for tomorrow morning!

7/29: Messy food fun in OT and and playing with Squigz in PT with Miss Nikki.

The chocolate dribble is from trying whole milk Carnation Instant Breakfast in Speech Therapy with a new Foley cup. New skills are tricky and messy.

He started with 5 grams of vanilla pudding per meal on the first day and is up to 23 as his highest as of this morning. (30 g is one ounce.) They are giving him a variety of yogurt, blended soup, blended strawberry/banana, and thickened apple juice.

Also, he went pee on the potty for the first time. Kind of by accident and could be a fluke, but we’ll take it. I was filling the tub for his bath last night and Autrey just set him on the toilet while he was waiting and jokingly told him to go. And he did. Of course I had to sheepishly tell the nurse since they are tracking input and output, but she was actually happy about it. Even though the older boys were potty trained by this point it isn’t on our radar right now, but it was a pleasant surprise.

7/31: Robbie and I are snuggling in our hospital room with my Gryffindor blanket watching Harry Potter and the Sorcerer’s Stone. Happy birthday, Harry!

Pictures of G-Ma with the boys celebrating at the Thanksgiving Point party. Mom makes a great Luna Lovegood in those glasses!

8/1: Kinesio tape to help strengthen weak lips. He’s been sticking his tongue out and super aware of them today.

Robbie’s Vital Stim was ramped up to 19 milliamps this morning and he tolerated it pretty well. It’s pretty high, but it shows that he was weak enough to need it. The SLP alternates between placing the pad to strengthen his pharyngeal and tongue areas.

Yesterday the SLP gave him unthickened regular water. I asked her about that because water is really tough to swallow safety and he wasn’t cleared to do that in his last swallow study. She said that she is using Frazier free water protocol to give him experience wth small doses in a controlled setting during vital stim and is making sure he closes his lips. Try swallowing without closing your lips. It’s hard. And that’s what Robbie has been trying to do. So giving him water under these circumstances while she can help him is ok and should help him progress.

She also mentioned possibly doing another swallow study at the end of this intensive to see what he is truly capable of. He wasn’t super compliant during the last one in April so having a familiar face administer it might give a more accurate picture of what he can do.

I’m so glad we’re here!!!

8/2: It was hard to be away from the older boys for the past 2 weeks we’ve been in the hospital. It’s the longest they’ve ever been away from Autrey and I. By a lot. (The only other time they’ve been away from both of us was 12 hours, 8 pm to 8 am on our 10th anniversary. And we were in the same town. So this was a big deal.) But knowing they were living it up and having a blast with G-ma and G-pa made it a little bit easier. I can’t wait to hug them in the morning!

They are flying home as unaccompanied minors EARLY in the morning and will spend time with us at the hospital this weekend. Then they will drive down to Houston with Mimi and Papa for the second half of Robbie’s hospital stay. My kids lucked out having the best grandparents ever!

8/5: Robbie and Rosa during OT yesterday. He cried when it was over. He loves playing with her. I want to get a service dog for him so badly! 😍🐕

So the end of last week/this weekend was kind of rough to watch with his plummet from his awesome few days of 50 grams per meal back down to just 5.

The SLP said that until today she was trying to get him to do her motor plan for him, but has realized that isn’t possible due to his tight and weak jaw/cheeks/lips/tongue that aren’t even symmetrical, inability to open his mouth wide, his underbite and cross bite in addition to his high palate and laryngomalacia. Working with his limited abilities is the new course of action instead of forcing the impossible.

So, she thinks the way he has tried to swallow incorrectly with his lips open probably has made his neck muscles really strong so she moved the vital stim to his cheeks today and she was happy with what she saw.

Part of the reason he had such a decrease in volume was because they needed to focus on him keeping his lips closed and his tongue in his mouth when swallowing. Focusing on quality instead of sheer volume. He was fatiguing too quickly and would never be able to get past that 50 grams anyway, so they had to back it up.

The other reason the volume plummeted is because they started to add savory foods like blended carrots, blended spaghetti, and blended soup. He would wait them out or take it and then push it to the tip of his tongue and wipe it off with his arm every time it was presented. I don’t want him only eating sweets his whole life, but Stevie (his SLP) did take the non-preferred foods off his menu for today to get him back in a groove. He had 29 grams at 3 out of his 4 meals going back to vanilla yogurt, Carnation Instant Breakfast, and water. He has been on an appetite stimulant for a week. Not sure if it's helping yet since he never had hunger cues, but we'll see.

Since the volume isn’t going to change much, we are going to tackle the rate so he isn’t tethered to the tube so long each pump feed. We went from 240 ml/hour to 360 ml/hour. We’re going to go from 45 minute feeds to 30. I’m about to try that for the second time in just a bit. The first one went well.🤞🏻

At our weekly team huddle today they mentioned that he was fatiguing during various therapies and asked if he was getting as much sleep as he does at home. DEFINITELY NOT. I have to wake him up to be weighed, vitals taken, given medicine, dressed and downstairs by 7:30 am with them sometimes coming in at 6:45 am. And I have to peel him awake for his post nap 1:30 afternoon meal. He’s been pretty happy through it all, but it’s wearing on him. I’m not exerting as much effort as he is and I’m so tired I’m losing my voice.

They are adjusting the schedule starting tomorrow to start later and get a longer break for his nap. And no more blood pressure at 9 pm or nurses messing with him or the pump at 4 am. I hope that helps. For both of us!

8/9: Exciting video of Robbie learning to stand up from a sitting position at the hospital park. And pictures of him getting stronger holding onto the swing in OT with Christine Roop Vaughan and standing with less support during PT with Nikki (or Mickey as Robbie says). 💪🏻

Today was the 3rd day I took over feeding during his 4 structured meals. The transition actually went pretty smoothly. I’m consistently able to have him take 27-29 grams total each meal, between sweeter flavored purées and Carnation Instant Breakfast. Almost one full ounce! So happy to have positive feeding experiences with him!

8/12: We ❤️ Kari! She was Robbie’s outpatient Speech Therapist for a few months until we had to stop speech therapy for language to save our limited ST visits for speech therapy for feeding after we complete this month of his inpatient intensive. Hard insurance limits are ridiculous for kids with disabilities.

She was working at our hospital today and came to visit us. She hasn’t seen him since we took the first picture the end of April and agreed he has made a lot of progress between then and now!

8/18: Spending a month in the hospital away from home, family, and friends is physically and emotionally exhausting. But other families who are in the same boat make it so much better. We’ve made some really good friends here.

Sweet Kyler arrived a few days after we did and he and Robbie became instant buddies. The video of them laughing is so adorable. That will be a tough good-bye tomorrow. I wish they lived closer, but it’s not going to stop us from getting together again! ❤️

8/18: Christine had Rosa came to OT and taught Robbie how to brush his teeth with a big boy tooth brush. This was a really big deal because when he first arrived at the hospital his jaw could only open half of what it was supposed to and we couldn’t even get a regular toothbrush to his back teeth. And at home he hated the texture of the bristles and would either cry, thrash to escape, and/or gag. I was at a loss. Rosa was a HUGE fan of her peanut butter ‘toothpaste’ and taught him well. 🐕❤️

When we arrived a month ago Robbie was taking nothing by mouth, at least consistently. 9 days ago Robbie was almost at 1 ounce per oral meal. Today he is averaging 2.5 ounces. It’s incredible. They moved him from a small maroon spoon to a large one. And also let him self feed 5 mL at a time of his Carnation Instant Breakfast out of a medicine cup. It’s still a work in progress, but he’s getting the hang of it.

The swallow study they did on Wednesday went so much better than the one in April at Scottish Rite. He was much more compliant this time and had learned so much in preparation for trying again. Stevie, his SLP, did say he had some residue, but that it wasn’t going down his airways except once with thin liquids. She said she wasn’t too discouraged bc he hasn’t been swallowing those consistencies very long. She did stop giving him a short straw after that, just to be safe. The swallow study was done during his naptime due to scheduling at Children’s Health main campus down the road, but it wasn’t a bad thing they got to see him perform when he was at his most tired and unsafe.

Thanks Sherrie-Kaye Holdaway Miller and David Miller and Doug Duke and Mona for taking care of Dylan and Colton and making it logistically possible for me to be here. This month has required Herculean effort from all parties involved with this inpatient intensive, but was 100% worth it. Robbie’s eating successfully for the first time in his life, he’s talking more, and he’s much stronger. I don’t have to steer his walker anymore and he is FAST! Improvement across the board. I can’t wait for you to see him now. You’ll notice he’s a little sassier as well. Because he’s more confident...or because he’s 2? 🤷🏼‍♀️ The doctors, nurses, and therapists get a kick out of him starting to call me Shilo. It was funny at first, but now I’m ready to be around the older boys so he calls me Mom again.

The Care Team here hooked me up with some feeding supply programs in case we need them and are referring us to dental and GI specialists and to start outpatient therapy for ST and OT. When he turns 3 and ages out of ECI we will probably do PT with OCH as well. Also, our Medicaid buy-in application was approved a few days ago for Robbie so he will get what he needs without hard therapy limits of only 30 per year or the endless fighting and appeals over covering expensive G-tube formula. Things are looking up!!! Onward and upward!!! #Arthrogryposis #AMCstrong

8/19: Our OCH Farewell Tour started on Friday, the last full day of his therapy schedule of ST with Stevie, OT with Christine, PT with Nikki “Mickey”, meals with Danielle, Child Life with Tierney and Rosa, and walking the halls charming all the nurses and staff. They called Robbie “The Mayor/King of the Halls” because of how he liked to make his rounds and say hi to everyone. It was a bittersweet day. It just so happened to also be Christine Roop Vaughan‘s last day of work before she moves to WA this week. Robbie ended up being her last patient on her last day. We are going to miss her something fierce. I hope our paths cross again.

*Deep breath* And after not being home for 7 WHOLE WEEKS between visiting family and this month at the hospital we are off to go home to figure out real life with 5 tube feeds, 3 water flushes and meds, 4 oral feeds, ST/OT/PT outpatient therapy...as well as being at home with Autrey and the older boys who start their soccer season TONIGHT and school TOMORROW! Ready, set go!!!

EDIT...I just noticed that Robbie’s empty medicine syringes made it into a few pictures. No judging. They are striped of his medical info and were disposed of properly. Doesn’t every kid have security syringes? And know how to put on blood pressure cuffs, and which button to push on the machine, and how to push the plunger on meds, and where the stethoscope goes?🤣🤦🏼‍♀️

Park slide:

Hello, Nurse(s)! Making the rounds and saying hi to everyone:

Robbie and Rosa:

Rosa teaching Robbie to brush his teeth. Rosa loved her peanut butter:

Christmas in July:

Cousin visit:

Video of Robbie walking in his walker to Child Life to play with the crew:

On our way to Children's Health for his swallow study:

Robbie and Kyler, 2 peas in a pod:

Video of Kyler and Robbie playing:

Video of Robbie learning how to go from sitting on the slide to standing up position on park slide:

Kinesio Tape to help his cheeks/jaw and OT texture sensory experience:

Loving on Rosa:

Robbie and Brylie:

Brandi and Brylie leaving to go home after their stay:

OT with Christine:

Pulling off Squigz in PT with Nikki:

"Kari Kari" came to visit us, who was his Grapevine SLP for language during Abby's maternity leave. We adore her. We had to stop SLP for language so we could save our visits for feeding therapy. Insurance is sometimes the best and sometimes the worst:

Bathtub time:

Wonder why the water changed color? Urgh. Time to take bath #2 (Pun intended.):

Attempting to stand with Nikki and build confidence:

Breanna and MJ, some of our favorite hallmates:

Tube and oral feeding schedule:

Last full day of feeding/Vital Stim and therapy on Friday:

Rebecca, one of his nurses he charmed into giving her cat that was on her badge lanyard:

His last therapy session was also Christine's last one working at OCH before she moved to Washington. Bittersweet day all around:

Farewell tour on Monday morning, our last day:

Tierney, Rosa, and Robbie in Child Life:

Stevie, Robbie's awesome SLP feeding therapist:

One of our sweet nurses who adored Robbie:

Nikki, his PT:

Danelle, his feeding tech:

All the things Dylan and Colton were able to buy Robbie using their cinnamon roll fundraiser money, and even had $50 each to keep for their hard work:

We just had our unboxing of all the therapy items Dylan and Colton’s cinnamon roll sale money bought for Robbie. Thanks for helping pull off Dylan’s idea and having a product everyone wants, Sherrie-Kaye Holdaway Miller! And thank you, Vineyard community, for being so generous! ❤️ #Arthrogryposis #AMCstrong

-Feeding chair, hospital recommended ($$$)

-Wooden pull apart play food

-plastic pull apart play food

-peanut exercise ball

-Magnet tiles

-Jumping Jacks game

-Squigz suction toys

-Barnyard Bingo

-Puppy shaped feeding mat

-Owl shaped feeding mat with silverware

-Fubbles no-spill bubbles

-vehicle shaped window clings