Cerebral Palsy – Page 2 – Patrick Hoopes

We have bacteria species, and a plan to try to stay at home

From our hospital stay 2 weeks ago: Playing with another family from our support group. Daddies are awesome!

We’ve been home for a couple of days now. By Sunday evening, Patrick was feeling 100 times better. He started talking and playing again. We went to the playroom and raced cars down their giant car ramps. His cousins came to visit and while we waited for them, he was playing around in the lobby by walking every silly way he could think of, including with his eyes covered.

But the night shift rolled around and, yet again, they didn’t send up his melatonin on time. And the pumps didn’t like running TPN, lipids, and antibiotics all at once. And he didn’t get to sleep till 11. And then he woke up vomiting (because his g-tube had to be clamped because the medications had been late).. not once, but twice. Only the melatonin had come up by then and so he couldn’t wake up all the way and it was well, just sad..

From two weeks ago: Pushing Daddy in a wheelchair as a form of occupational therapy. Heavy work=happier child

And by morning, I was fed up. It’s time to go home when hospital routine is making him feel sicker instead of better. So I asked them if we could finish up care at home. And they agreed. (With some cautions, but agreed.)

And so we came home and the antibiotic thankfully was due just once a day.. and so we all got to visit with Brian’s family who has been in town visiting, and then we got to go to bed and sleep at night. First time in 3 weeks that I didn’t have to be up at midnight for antibiotics.

And we’ve all been feeling much better.

One of the joys of our July hospital stay was the discovery that because we have a Physical Therapy goal to learn to ride a tricycle, if the doctors order physical therapy for Patrick, he's allowed to borrow a bike. He learned to ride a tricycle during that hospital stay. — One of the joys of our July hospital stay was the discovery that because we have a Physical Therapy goal to learn to ride a tricycle, if the doctors order physical therapy for Patrick, he’s allowed to borrow a bike. He learned to ride a tricycle during that hospital stay.

Well, except for Patrick this morning. Again today, naughty behavior has been emerging. And the nausea, which never completely went away, seems to be getting worse. And I was really beginning to worry.

And then the phone rang. It was Patrick’s pharmacist. AT LAST they have species on the bacteria. Our two best-friend bacterias… Klebsiella Oxytoca and Citrobacter. The drug-resistant bacteria that have set up shop in Patrick’s gut. Only this time, the Klebsiella is no longer susceptible to Rocefen, the antibiotic that I threw a fit to get them to put Patrick on. It’s mutated some and that drug won’t work anymore.

One of the best ways to pass time when you don't feel well in the hospital is doing crafts. This past week, Patrick discovered glitter glue and puff paint. Our lives will never be the same. — One of the best ways to pass time when you don’t feel well in the hospital is doing crafts. This past week, Patrick discovered glitter glue and puff paint. Our lives will never be the same.

So tonight, they’ll be sending me a new antibiotic called ertapenem. And they’ll be sending a nurse to keep and eye on Patrick during his first dose.

And hopefully by tomorrow, he’ll be feeling better.

Primary Children's Hospital has it's own LDS branch (congregation of the Mormon church) and every Sunday, volunteers will bring primary lessons and longs to any kid who wants them. Here's Patrick enjoying singing time. — Primary Children’s Hospital has it’s own LDS branch (congregation of the Mormon church) and every Sunday, volunteers will bring primary lessons and longs to any kid who wants them. Here’s Patrick enjoying singing time.

But I’m still happy that we’re home. Because at least he’s sleeping through the night. And I can keep a better routine so he doesn’t feel as sick. The good news is that this new medicine can still be given just twice a day and we can all still get some sleep. I certainly trust that things will work more smoothly with our GI writing orders instead of an intern, and our home care pharmacy and home nurse helping provide his care. No missed or forgotten doses of medications. And there is still a tiny chance that I can catch up on dishes and laundry. And feed us something other than cafeteria food. I think we are all happier at home. Even if Patrick does miss visits from Child Life with fun new toys to play with.

One of Patrick’s favorite people in the whole world: Jo from child life. She is the sunshine of every hospital stay.

Baby steps

I mentioned a while back that we were taking Patrick to see a doctor who specialized in rehabilitation and development. It’s about time I write about it.

The appointment went a lot more positively than I’d expected. I went in half expecting for her to see the muscle tone in Patrick’s foot and decide it was time for dramatic action. Patrick’s physical therapist had suggested botox injections and casting, and I was afraid that that was the next step.

I was so nervous, in fact, that I had Brian come along with me. That wasn’t the sort of decision I wanted to make alone. And he was kind enough to take the whole day off, which was an extra special treat.

They make you feel out a history every time you go into this office, including a list of everything that’s changed in the last 6 months since you were seen. This can be quite the task to list everything and I often just write blanket statements like “typical to short gut” so I don’t have to fill in all the hospitalizations, diet changes, etc.

The good thing about this form, though, is that it gives the doctor an idea of where to start, so she came in and right away said, “So why do you think he’s having problems with his foot?” We stripped Patrick down so she could see his muscles as he walked and then we had him walk back and forth between us. We also talked about the developmental lag I’ve seen on his right side versus his left. She watched the way he hold his hands when relaxed. She stretched his muscles to see how they move.

In the end, we didn’t decide anything new… but she confirmed a lot of things I’ve suspected. Basically, it looks as though there was some degree of brain damage caused by Patrick’s cardiac arrest. This isn’t a surprise. They did CPR for 15 minutes, which means that for 15 minutes, he didn’t have a good supply of oxygen to his brain. In fact, everyone’s always amazed at just how well he IS doing in spite of that.

This doctor, even telling me that there seems to have been damage, still calls him a miracle and says that he is far, far healthier than his medical history would predict.

The official diagnosis she gave is “dystonia”… which basically means “irregular muscle tone.” In layman’s terms, it means that his brain sends the message to move the muscle, but the message gets garbled somewhere along the way. The message the foot get tells the muscles to flex harder than they should or in the wrong direction. The faster he tries to go, the more the signal gets confused and the more unpredictable the movements.

She said to just keep working with him. She said that these muscle tone issues could vary in how much they affect him as he grows and the muscles relax or get tighter. In the future, they might still recommend injections of botox into the muscles to weaken them so he can have better control of them. But that’s not for now.

For now, we’ll continue to do what we’ve been doing. We’ll keep a brace on his foot and we’ll do stretches every morning and night. We’ll keep encouraging him to walk wherever he goes and we’ll hope that, like the rest of his right side movements, he’ll get better with practice so that you don’t even notice a difference unless you know what you’re watching for.

It’s a relief to have my suspicions confirmed and plan of action approved. For the past year I’ve been telling therapists that I suspected something was wrong. It’s only been since we started working on walking with his newest PT that it’s been clear that something actually was wrong.

It’s discouraging, though, too to know that he’s going to have this battle ahead of him. He’s young enough that his brain is very “plastic”, very adaptable and it is possible for him to overcome most of the effects of this… But it’s going to require a lot more effort from him and from me to learn to do those basic things.

Still, he’s making amazing progress with his “boot”. He spent 15 minutes yesterday walking 6 feet between his therapist and myself. Then, he spent most of the evening walking across my mother’s living room. He lets go when he’s playing next to furniture. He refuses to have two hands held while he walks. He is getting faster and steadier and braver. He’ll be walking in no time.

This Boot is Made for Walkin’

It’s been a few weeks now since Patrick got his brace, or as we call it, his “boot.” His therapist used this word the day she fitted him, and Patrick took to it. He sees me with his brace in hand and starts reaching and begging, “boo, boo, boo!”

It was hard getting used to the brace. For the first week, even an hour of wear had him grumpy, tired, and irritable. Daily stretches were the worst, as they worked the muscles that were already sore. I just kept pushing through knowing that things were supposed to get better with time.

The other awkward new adjustment was shoes. Patrick currently wears a size 5 1/2 .But, the brace measures a 7 1/2 in length, and when you allow for the bulky straps on the side, it takes an 8 to get over the brace. Obviously a size 8 shoe is too long for his foot and this difference made him seem a bit lopsided while he was getting used to it.

I really want to get over to Nordstrom, who have a “mismatched shoes” program and employees who are actually trained to help fit shoes, instead of just measure feet. Shopping for a spare shoe at Payless the day we picked up Patrick’s brace was frustrating and traumatic. I’ll forever pity the poor teenage associate tasked to wait on us.

But I digress.

Patrick has since made a wonderful adjustment to the brace. He even knows how to help me more easily get it on, if he’s not distracted with something else.

It helps. No longer does his little foot betray him at random, popping up or turning in and making him fall. He doesn’t veer into the wall every 5th step while walking halls in therapy any more. (It takes more like 40 steps.)

He’s getting brave enough to walk more and more. He takes several steps between his daddy and me (or other adults he trusts.) He forgets sometimes that he doesn’t want me to see him stand, and lets go to play with a toy. I’ve even caught him walking along the edge of the couch without holding on – just reaching out and touching every few steps to assure he’s got his balance.

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There is still improvement to be made. At least once an hour his heel still pops up inside the brace – quite a feat, considering how much there is holding it down. Only then it gets stuck. I’ve learned that if he’s crying and begging for my help, it’s probably his foot.

His foot does still turn in a bit, too.. or I should say that his leg does from the hip.

We’re meeting with his rehabilitationalist today to talk about whether or not we need to take more action than just the brace.

But for now, my little munchkin is happily practicing walking. We walk everywhere. I’ve learned to allow extra time for such adventures. For example, we spent an hour picking up 3 items in the grocery store so that he could push the cart. We arrive, when possible, 15 minutes or more early to appointments so that he can hold my hand and walk inside. And we take walks around the yard and neighborhood.

These last take the most time because for the first time, Patrick can explore the things he’s been looking at for 2 years on his walks so we have to stop often to let him touch the fences and flowers and rocks along the way. I don’t mind. He’s earned it.