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Will, age 3...artistic interpretation

Will, age 3…artistic interpretation

When Will was three, I walked into the dining room one day to find him perched with one foot on the edge of a windowsill, the other on the thin arm of a dining room chair over wood flooring. He was quite pleased with himself. I wasn’t particularly surprised. Will was climbing 10-foot slides at 18 months. He’s always had excellent balance, strength, and coordination. He does not get this from me. Julia, who can routinely be heard calling, “I’m ok!” after a loud *thump*…THAT comes from me.

This week, though, Will has most definitely not been his physically gregarious self. Leading up to his hospitalization was a period of very, very slow physical decline. No one really saw it. He went to school every day. And the YMCA. And therapy. And the doctor. No one really picked up on the subtle changes because they were so very gradual. But then, he got a bit hesitant and unsure of himself. He didn’t want to climb as much. He didn’t want to swim. And then he fell down. Twice. Will does not fall down.

After several days in the hospital getting IV fluids, syringe feedings, and the right medications, Will was moving more and feeling much better. But without proper nutrition getting in at home, he would deteriorate again, and so they had to operate, placing his G-Tube and giving him a PICC line, endoscopy, and biopsy. He was under anesthesia for three hours. He didn’t get out of bed for two days.

Surgery was this past Tuesday, and the team expected us to go home Friday. By Thursday, knowing he had just started walking again, we knew Friday was out, but we were hopeful for Saturday. By Friday, they were thinking more like Sunday. And then yesterday, Saturday, Will threw up after his second bolus feed of the day, and I looked at Marty and said, “We’re here until Monday.”

It’s not so unusual for a child to vomit in Will’s situation, of course, but sometimes, you just know something’s wrong. We started with what they call, “continuous feeds,” which means Will was literally getting nourishment around the clock through his G-Tube once they started using it a couple of days after surgery. Once he was up to his goal volume for the day, they started doing what are called, “bolus feeds.” This means that they give more food (formula) in a shorter period of time. So first, a bolus takes three hours, then two, then one, then 48 minutes, and so on. The goal here is for Will not to have to be attached to his pump 24/7 but rather have feedings given by tube four times a day in a manner that more closely mimics typical eating patterns and allows for him to feel hungry, which should help with feeding aversion therapy. This is immensely more convenient than having to be connected to his pump all day (although that’s possible through the use of a special backpack that he could wear to keep his pump with him).

But when Will threw up yesterday, I just had a gut feeling that we were not going home today. And when he couldn’t stand up in the shower afterward, and needed a shower chair, I was certain we were in for another 48 hours. Then we had to go to the Procedure Room, where nothing fun happens, and have his entire PICC line dressing changed  because of the risk of infection in case any vomit got under the dressing. I had to carry him down the hall and back.

Later, Will had another bolus feed, and we had to stop that one early, as he began protesting, and it appeared he was in discomfort again. He didn’t get out of bed all evening.

Marty headed home for the night around 10 or so, and by 11:30, Will was awake and in pain. He was clammy, and when I laid my hand on his chest, his heart was racing. The Chief Resident came to see him at midnight after getting a report from the nurse, and she put him on a Pulse Ox — a beeping machine that tracks oxygen saturation and heart rate. She explained that a few things can cause an elevated heart rate. The most likely culprits would be dehydration, infection, or pain. He didn’t have a fever, but he was on Motrin and Tylenol alternately, so infection was still a possibility. Pain, yes, he was in pain, but it was subsiding with the meds, and still his heart rate was up, bouncing between 110 and 146 while Will was doing nothing but lying in bed. For a child his age, it should be under 100. Lastly, dehydration was also not super likely, given how much he had taken in during the day and the fact that he had only vomited once… It was a bit of a mystery.

Ultimately, they pushed IV fluids and left Will on the monitor all night, checking vitals frequently, and keeping a close eye on him. Once our regular daytime team showed up this morning, everyone had a pow wow and they decided to run some extra labs and an EKG, and remove the PICC line, which could be a source of infection. Will’s EKG came back normal, but the blood work did not.

Will’s blah-di-blah and hoo-ba-doo levels are elevated. That’s pretty much what I heard the doctor say, although I could be spelling it wrong. A little. Anyway, these two things are indicative of an infection, and that right there meant, yup, we’re here until Monday so they can monitor Will for one more day and make sure he fights this off instead of getting sick.

Parenting is a balancing act.

Parenting is a balancing act, but at least we’re learning from the master balancer, Mr. Will.

The challenge here is balance. They want to keep Will longer to ensure he’s not going home sick. Yet the longer he stays here, the more likely it is that he could pick up an infection in the hospital. We want Will to go home and get back into a normal routine, not be lying in bed all day. Yet if we leave too soon, we will definitely end up back here.

It seems this entire experience has been about balance. Balancing respect for the doctors with gut parenting instinct. Balancing fear with facts. Balancing pushing Will too much with letting him rest. Balancing, conversely, the desire to coddle and baby Will with the very real need to have him up and moving. Balancing the need for sleep with … everything else. Balancing anger with hope. Balancing everything we need to do for Will with all of our other responsibilities and obligations.

We walked all the way down the hall this afternoon! Progress!

We walked all the way down the hall this afternoon! Progress!

It all makes me feel like, at the moment, Marty and I are the Cats in The Hat. Instead of the cup and the cake and the books and the rake, we’re balancing feeds and tests and meds and rest. Thankfully, Will has taught us a lot about balance over the last nine years, physical and otherwise, so we have his great example to follow.

Of course, if you’ll recall, the Cat in The Hat DOES fall. And he drops everything. The cup and the cake and the gown and the dish, the book and the ship and the rake and the fish. But he gets back up, and he cleans everything up, and by the time the book ends, everything is as it should be. As usual, this reminds me of a saying: Everything will be ok in the end. If it’s not ok, it’s not the end. I am sure I can come up with about a hundred examples of this saying not being true. But at the moment, I’m just going to go with it. It makes me feel better as opposed to feeling scared. And right now, that’s an important balance.everything will be ok

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