We were so grateful to have a private room at JPCH, something
we haven’t had the pleasure of experiencing in his previous surgeries!
There were a few added amenities which were a nice touch
(such as a mini fridge, a desk and a double bed for a parent), and it was so
nice to have a quiet space for our three days in the hospital.
We made good use of the mini fridge, so we did not have to purchase
any food while we were there. We brought
sliced meat, cheese, lettuce and tomatoes to make sandwiches for lunches, along
with some veggies and fruit. For suppers,
I had baked a pizza at home, and brought along some slices. We found a microwave in a communal family
room at the hospital, so we warmed them up there. I brought muffins and fruit for breakfast,
and some extra snacks for throughout the day.
We settled into our
room fairly quickly, and made sure Levi was comfortable in his space. We had brought a variety of activities to
keep him entertained, including new books, a few card games, an old iPod loaded
with audio books and our Switch. The
Switch was by far the most popular activity, since we had specifically purchased
Minecraft for just this purpose! He’s quickly
become a big fan! His hospital room also
had a screen with access to Netflix and Prime Video, where we found a couple
movies to watch.
When he wasn’t playing games or watching shows, he was doing
his best to stay rested and hydrated. He
had an IV in his arm that allowed for a continuous fluid drip. This ensured that he stayed hydrated despite
a very sore and swollen mouth. Once he
was feeling up for it, he was allowed to start taking in some clear fluids. This meant lots of apple juice!
The technique for eating and drinking after an alveolar
cleft repair means that Levi has to take everything in via a syringe. The goal with this method is to avoid having
any food touch the surgical site in his mouth.
The surgeon said there are about 100 stitches in his mouth, and we don’t
want anything getting trapped in that area, or disturbing the graft site. Since the surgical site is quite large and encompasses
the roof of his mouth and the left side of his gum line, he uses a medical
syringe with a soft piece of tubing attached to the end. He tucks the tubing into the right side of
his cheek, and swallows from there. He
can have anything to eat or drink, as long as it can go through the syringe.
The nurses were not very familiar with this type of surgery,
and it turns out that there is nothing designed for this type of feeding, so we
worked with the nursing staff to figure out a system that worked. We experimented with different sizes of syringes
and tubing until we came up with something that worked. As a reference for any families with cleft
kids, we discovered that a 60 mL syringe with a narrow end, paired with ¼”
diameter soft blue surgical tubing worked the best. They allowed us to cut the tubing to the
length we needed, and sent us home with a roll of it so we would have enough to
last for his whole liquid diet. They
also provided us with several extra syringes.
During the process of figuring out the feeding system, we
found that it was very important to advocate for ourselves and for Levi. The nursing staff relied on us to tell them
what worked for Levi and what didn’t, so it was important to speak up.
We had a consultation with a dietician as well, which was
very informative. Levi’s liquid diet
will last for three weeks, and it is important that we do our best to maintain
his weight. She discussed the importance
of fat and protein to increase the calorie count in his meals. Low fat liquids take up space in the stomach
without actually providing needed nutrients.
She reminded us that there are taste buds all the way down a person’s
throat, so it’s important that the foods we are giving Levi still taste
delicious! I will write a separate post
about the recipes we are discovering as we learn about this liquid diet.
On the day after surgery, Levi was upgraded to a full fluids
diet (which is different than a clear fluids diet). This meant that he could have some runny chocolate
pudding, things like Ensure, and some strained soup. He enjoyed having some ‘real’ food after such
a long time!
Along with keeping Levi’s mouth healthy, we also had to keep
an eye on the incision in his hip, where the bone graft was taken from. His hip was quite sore to begin with, so we
had him walk only as much as tolerated.
When the nurse changed the bandage and cleaned his incision, everything
looked really good! The incision is
about 3” long, and seems to be healing well.
He’ll have a bandage over it for a couple weeks, and will avoid submerging
it; only having sponge baths and careful showers for now.
His pain level was managed with Tylenol and Ketorolac (an
NSAID, like ibuprofen, but a bit stronger), and he was also given antibiotics
via his IV.
At home, he is still taking regular Tylenol, but was given a
prescription of Naproxen to replace the Ketorolac. He is doing well with these pain meds, and
says he has no pain in either his hip or his mouth. He is sleeping well, and we are figuring out
the meals that work best for him.
It’s been a learning experience as we walk through this
process. I’m enjoying the challenge of
creating delicious, healthy recipes for him, and we are forever impressed with
the resilience Levi displays through all of these adventures!
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