Archives for posts with tag: formula

img_4151We (Kevin, Grace, Graham and I) left for Minnesota on a recent Sunday. Our van was packed pretty full for a two-day trip. Grace doesn’t travel light.  (That’s a different blog post entirely!). Graham packed his own suitcase with the following belongings; a Santa hat, his Little Passports suitcase, slippers, his bug jar, books, sleeping friends, and Thomas the Train.

He was delighted to stay in the hotel that first night. He had a whole bed all to himself.   He swam in the hotel pool. Pizza was delivered to our room. Disney Jr. was on TV.

Grace was happy to be out of the car.

Grace had three appointments over two days. First, we followed up with the plastic surgeon about her eyes. All looks good. The swelling could last a few more months. We have one more appointment with the surgeon in January. After that, we will continue to watch her eyes with the eye doctor. If we see drooping again we go back to the plastic surgeon. Graham sat on my lap for the appointment. He played on the iPad at times putting his hand on my cheek and pointing my head down to see what he was doing.

After that, we went to Culver’s for lunch. One thing that’s different about Minnesota with Graham than without is our food choices.   When Graham is with us we frequent restaurants that serve chicken nuggets, chicken strips, pizza, or pancakes.   At this particular Culver’s we were able to watch the trains (the light rail) go by.   Graham led us straight to the tables by the big windows so we wouldn’t miss a single one.

We got to the second appointment. This one was with Grace’s urologist. The appointment has several steps; first an x-ray, then an ultrasound, then height and weight, then the doctor. Here’s where we had trouble. Grace needed to be cathed, needed meds, and needed food all at the same time. Graham wanted to be playing in the kid area on the other end of a large waiting room. That left one of us trying to get to all of Grace’s needs. We travel with a green bag full of Grace essentials. We put it on the back of her wheelchair. Things are organized and sorted into baggies. We need water – hot water for meds and some at room temp to keep her hydrated. There are gloves, lubricant, catheters, and wipes. Medicine, medicine crusher, syringes, and tubes are all in there too. Then the box of formula – that sometimes, depending on how you open it, drips a small amount of sticky white liquid on your hand, or the tube, but you are powerless to do anything about it because if you let go those few drops could become a lot more.

Graham was sure we were done after each step of the appointment. Because we were trying to meet both their needs we ended up feeding Grace as we talked to the doctor’s nurse and then the doctor. When we were with the doctor Graham did excellent. The doctor told us Grace will need a surgical revision of her mitrofanoff. This is not an immediate need. We have some tricks we can try to buy us some more time. Neither the doctor, Kevin, or I want her to be in surgery anytime soon.

Once we were done Graham was so excited. The Lego store at the Mall of America was next. But then we had to wait some more to schedule Grace’s follow up appointments.

All that done we left the hospital, went down the circular parking ramp, where Graham went “whee” and declared that he loved driving in circles. We were ready for his part of the trip.

He’d told us when we planned the trip that he definitely wanted to go the Lego store. It turned out he wanted to go to no other stores.   Lego store was done he was ready for his next objective. A train ride.

Grace was done being in her wheelchair.

img_4149After the train ride where Graham got to go under the airport on the light rail it was back to the hotel. He ate some pizza, played with his Legos, and went swimming in the hotel pool. He fell asleep in another big bed – all for him- watching TV.

We went to the breakfast buffet in the morning. He chose Cheerios. We talked with a few girls eating their breakfast. Graham and one of the girls had a jumping contest to see who could jump highest.

We packed up to head to Choo Choo Bob’s – Graham’s final objective. As we left the hotel room he made Kevin stay behind but led Grace and I outside to see the singing rock he and Kevin had discovered when we first got there. The singing rock is actually a fake rock with a speaker in it.   He was so excited to show it to us. He did a little tap dance as we listened to the music.

Choo Choo Bob’s was a lot of fun. We had to leave story hour after only 10 minutes to get Grace to her final appointment. Graham handled it well. Way better than is even fair to a boy at Choo Choo Bob’s. The last appointment was the eye doctor. Eye doctor appointments take at least 2 hours. Grace wasn’t being particularly cooperative. Graham actually scared the doctor when he popped out of the chair he’d been sitting in very quietly. After she’d recovered the doctor started talking about Grace’s next appointment. Graham interrupted her piping in that he didn’t think Grace should have any more doctor appointments.

Then, there were chicken nuggets for lunch with fruit punch to drink. We started driving home. Graham wanted to be home 20 minutes after we left.

img_4150I sat in the back of the minivan between the two kids as we drove home. There were moments when my shoulders held both their little heads. We’d done it. It wasn’t always pretty. Kevin and I hadn’t really unpacked any of the information we’d heard.   Having Graham there prohibits some of that.   But we’d seen a singing rock. Graham had gone under an airport. Grace doesn’t have to go back to Minnesota until January. We’d done it leaving no man behind. We’d done it together. I don’t feel like Graham should have to be with us every time, but sometimes he should be there. She’s his too.

A few months ago he’d asked me why anyone would stay in a hotel if their sister wasn’t having surgery. I tried to explain the whole concept of vacation.

Maybe he kind of got it.

I hope one day soon we can get him (and Grace) an actual vacation.

Joy

 

 

Advertisements

IMG_3542Today was a big day for Grace. She is no longer connected to a pulse ox, ECG, and drum roll please…the NG-tube was removed! So many fewer tubes and wires to contend with all at different angles are a welcome change. She has also started a slow feed of Pedialyte (just 15ml/per hour) and we have been able to give Grace her regular anticonvulsant medications that are not available in an IV form. The resident that coordinated the medication plan with our Epileptologist, who happened to be on call today, knew Grace and her treatment plan without skipping a beat and the resident so impressed by that. We are quite privileged to have some excellent providers managing Grace’s care.

It will take some time to get her gut working again as we will eventually reintroduce her regular formula and work our way back up.

Grace’s regular Music Therapist came to visit Grace today.  And Grace was happy to use her favorite red tambourine. During music therapy, we had Grace in a wheelchair that leaned back to get her out of bed and a bit more vertical but yet not strain her. On her own, she sat up!  Her progress today has wowed the staff and there is a bit of disbelief that Grace has an active ‘baseline.’

Kevin

 

IMG_9184

A growing pump and bag collection.

Grace has her pain meds on board and is resting comfortably. So far she has no real desire to be awake for more than a few minutes. She has a low grade fever that is being watched but also not uncommon post op.

The surgery went well and our Urologist is very pleased with the entire procedure. While Grace has an abnormally large bladder the doctor stated it is a beautiful bladder that did not require any augmentation as it was smooth on the inside which prevents pockets of urine from remaining that could cause UTIs. She ‘tacked up her bladder a bit’ to help with an easier cathing through the Mitrofanoff that was constructed, it is a marvel we can move organs around like that.

During the operation they checked out her kidneys which are good; we didn’t have any concern and the tests have been normal but they had an opportunity to complete a visual check.

The Mitrofanoff is created by reusing the appendix to create a channel from her belly button to her bladder that we will eventually be able to insert a catheter through.   Not only does Grace have a beautiful bladder but also a long appendix that allowed for it to be placed in exactly the place it needed to be.

She has started back on a small amount of formula and will continue to increase as she tolerates the feedings but it will take some time.

Grabbed some lunch from a neighborhood café where we got some the Harold & Kumar Poutine which consisted of House Cut Fries, Pork Curry Gravy, Kimchi, Caramelized Onion, Parmesan, Cheddar, a Soft Poached Egg and Chipotle Aioli. It was quite good but I think it is fair to say that I enjoyed it more than Joy did.

That’s all for now, we will see what tomorrow brings.

Kevin