Patrick Hoopes

The devil you know vs. the devil you don’t

Patrick and I had the most frustrating of mornings yesterday. Got up as usual and started out happy enough, but then it was time to connect his 8 a.m. antibiotic. I went to withdraw the ethanol lock out of his line and it wouldn’t come. Tried to flush. Wouldn’t budge.

So I grabbed a dose of Cathflo (the super declotting agent for central lines that I am learning I am VERY lucky to be allowed to administer by myself at home.) Worked it into the line, which took me almost half an hour. I left it in for half an hour.. drew back and the line drew back beautifully.

Tried to flush, and nothing. Let go, and the syringe filled with blood.

Not good. I tried several more times and just got the same result. The antibiotic was due. The TPN was running. The two can’t go through the same tube at the same time. And I was stuck.

So I called the hospital and asked for the GI on call, but they wouldn’t give them to me because it was almost 9 a.m. and the GI clinic opened at 9. So I called Patrick’s nurse, and she was stumped. She called the department at the hospital that specialized in central line repairs, and they were stumped.

Finally, Dr. Jackson’s nurse got word I was calling and called me back. And she was stumped.

It really seemed like the blood was flowing backwards in the line.. out instead of in. Which either meant a slipped placement.. or a line broken under the skin.

Both line killers.

So – while they did their research, I did the only thing I could think. I said a prayer. I put one more dose of TPA in the line. I forwarded our home number to my cell phone. Then, I packed Patrick up and we went to mommy-and-me exercise class. Makes sense, right? We needed some normal, and some distraction. And it was his last guaranteed chance to go to class before school.

Halfway through exercise class, as I was sweating and huffing and puffing… in the middle of the popcorn song where we jump all around the room pretending to be popcorn… my phone rang.

It was Dr. Jackson’s nurse telling me that they’d arranged an admission to the Rapid Treatment Unit. The plan was to evaluate the problem, do an x-ray if possible, have the IV team look at things. And then, she said, it didn’t look good.

I hung up and stayed till the end of exercise class. Why not?

Then we came home, I showered, and I packed a suitcase to see us through a one day hospital stay and a likely surgery.

We rushed up the hospital, lugged our way into the RTU, got vitals, met our nurse…

And then tested the line.

And the 2nd dose of TPA had fixed the problem. Best bet? That the clot was working like a stopper that allowed blood to flow in, but not to flush. Kind of the opposite of usual line function. And that it was blood trapped in the line that was flowing back after attempts to flush… Not the line bleeding as it appeared.

We called it a nurse visit. The doctor came to “not” consult with me, so we wouldn’t be billed for the service. He’s seen us struggle to keep this malfunctioning line going for the past 15 months.

I asked him if he’d give up and replace it yet. Knowing the risks of lost access for Patrick.

He shrugged and told me, “It’s the devil you know versus the devil you don’t.”

How often that is true with Short Gut. How often do we weigh the choice between the familiar but uncomfortable present situation and the risk of an uncertain outcome?

The choice about transplant is certainly that kind of a thing.

It takes a lot of faith and prayer and hope and stepping into the darkness to move along this journey.

And a lot of mornings derailed by emergency hospital admissions that leave dirty dishes and dirty laundry and a mountain of other unfinished tasks while we wrestle with uglier demons.

Brian and I have been doing a lot of pondering and praying to know what is the best choice about this troublesome line.

If you’re praying for us, that would be a good thing to pray for. For us to know whether to keep fighting with this line or take the risk of swapping it out in the hopes of fewer infections and clots and frustrating mornings.

Watch out for waterlemons

A week ago Saturday, we decided to go out for breakfast at Paradise Bakery. Because of nut and egg allergies, we brought his breakfast along, but when he asked to play with my fruit cup (practicing his fork skills) I agreed.

He picked up a piece of pineapple, dropped it, and gave a very big scowl. I looked to see what was wrong and discovered a long, thin cut in his finger. I thought maybe one of the finger pricks from the previous weeks’ hospital stay hadn’t healed and was infected.

So, when we got home, I put some neosporin on it, and a bandaid. That night, when I changed the bandaid, Brian pointed out that the rest of that fingertip and the one next to it looked like they were burned. We asked Patrick how he got hurt. He said the “waterlemon” poked him.

We kept doing bandaids and neosporin. And then a couple of days later, I bumped Patrick’s other hand and got the same reaction. He jumped, pulled back, scowled, then started to cry. I looked and, lo and behold, the other hand was dry and cracking too. All of his fingers looked calloused, dry, flaking and cracking.

I panicked a little bit. TPN dependence means risks of nutritional deficiencies. Zinc deficiency causes horrible flaking skin ulcers. Fatty acid deficiency can cause dry skin, but only once it’s severe enough that you also start wondering about brain development.

I called his dietitian and made her check his labs. They were ok, except a note about low Omega-6 fatty acids. The doctor had just said he thought it was ok. She suggested I rub Patrick in safflower oil.

This created quite a quandary for me. Last time I tried safflower oil in Patrick’s diet he had an allergic reaction because all culinary oils are processed on the same equipment so safflower oil can have peanut oil and almond oil in it.

So I decided to start using his regular eczema cream and keep asking.

I got a good picture of the problem and sent it to, well, everyone. His nurse suggested an allergy to the bandaids or neosporin. His GI and I had a long talk where we discussed ways to get him more fatty acids from increasing the lipids in his TPN to feeding him microlipids through the g-tube, to rubbing him in it. (Which I put more effort into. We stopped at Sprouts market that night and read every label until I found a lotion that had safflower oil, but nothing else he might be allergic to.) Finally, the University of Nebraska called back and said that Patrick’s labs had looked good in February and could not have possibly tanked that quickly and to stop worrying about deficiency.

So then I turned to Dr. Google. I try not to research symptoms on the internet. However, Google Images is a wonderful took for looking up skin conditions. I looked up pictures of zinc and fatty acid deficiency and they didn’t match. Then I looked up pictures of cracking fingertips and I found it…

Fingertip eczema. Caused by… a systemic allergic reaction due to prolonged exposure to an allergen.

I ditched the bandaids. Switched to hydrocortisone cream and aquaphor… kept rubbing Patrick in the safflower lotion for good measure because of the other deficiency anyway. And I stopped cheating Patrick on his benadryl pretreatment.

Because Patrick is allergic to vancomycin, the antibiotic they started him on 3 weeks ago, he is supposed to get a very high dose of benadryl before every dose of antibiotic. But that high dose does a number on his gut, not to mention his concentration and his mood. So when we came home from the hospital, I started backing off the dose.

So we upped the dose.. and then we got hospitalized and they took him back up to the full prescription strength. And they made him stay on vanco a few extra days in case that was the cause of the fevers, and then finally let it be discontinued.

Patrick’s fingers almost immediately started to get better. They are still dry and we are still doing a good lotion regimen a few times a day. Patrick voted down a few brands, but is really in love with Aquaphor (“Apa-poh”) and several times a day will ask permission to just dip his fingers in it. This is helping a lot.

Poor little kid.. as if there weren’t already enough other things to worry about this month. And I still can’t convince him to lay hands on another “waterlemon.”

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.

Not again!

Here’s the ultimate test of the value of the switch to wordpress. I am trying a quick blog to update everyone everywhere about what’s going on.

20130718_060340 — Taken a couple of weeks ago, during our last admission. He’s watching the construction going on outside the window.

So, quick version.. About 3 weeks ago Patrick had a really bad few days. His stomach was upset. He had a hard time concentrating. He was in a BAD mood and into everything. It went on long enough that even though his labwork didn’t show any signs of trouble, I requested a set of blood cultures and skipped a nap to drive all the way to the hospital to get them done.

And then, that night, as I was getting Patrick ready for bed, I checked his temperature and discovered he had a fever. We called his doctor and came up to the hospital.

We were here 6 days, our longest stay in over a year, because it took forever to get the infection to respond to the treatment. (For various reasons I may or may not expound on later.) And because it took an extra long time to get the right antibiotic dose. It was a frustrating stay because he never got horribly sick, but he had staph epi in his line and it’s notoriously hard to clear. And the longer it took to clear, the more the doctors wanted to try a different approach (understandably.)

And, well, because the night shift just couldn’t manage to help him sleep through the night. But that’s a gripe for another day.

I’m afraid I jinxed us. One of the dramatic changes the doctors wanted to do to be sure to clear the infection was to switch from using ethanol to using vancomycin, a targeted antibiotic, to protect the line.

I raised more than a little bit of a stink. I insisted that we still use ethanol at least 4 hours a day. I made the attending come discuss it with me. And I won.

But i felt guilty. And when we went home, I did my best to follow doctors orders and put a heavy preference on vanco locks over ethanol.

Fastforward to today. For the 2 weeks since bringing Patrick home, I’ve been giving antibiotics every 8 hours.. including a dose at midnight. Tonight was supposed to be our last night.

Patrick’s cousins are in town and we’ve been having a grand family party. Aquarium trip. Hiking in the mountains. And today they rented a bounce house.

Patrick and I were very excited about today. Only one matter of business to take care of. A visit to his physical therapist. We have been waiting for MONTHS for a new DAFO (brace) for his foot to help with his worsening muscle tightness. And, Patrick has been dying to show his therapist how he’s learned to ride a tricycle.

Well – we got to the therapy office. And we got in the elevator. And Patrick’s breathing got a little shallow. And he gave a little shiver. And a hundred memories rushed back into my mind and I knew something was wrong. I remembered what a bad and out of sorts day he had yesterday, how his tummy was upset, how he had a hard time concentrating and kept getting into trouble.

So the elevator doors opened and I didn’t get off. Pushed the down button and went straight to the family clinic on the first floor. And I asked for a thermometer.

A nurse came out and checked and at first his temp was normal, but she rechecked and got 99.0. In his low ear.

So, we hopped in the elevator and went back upstairs to cancel our appointment.

Patrick was distraught. He didn’t want to be sick. He wanted to see Miss Holly.

Well, Miss Holly came out and I explained what was happening and she explained that the brace company had rejected the cast we’d sent as a model for his foot and asked her to recast. If we missed this appointment, it would be another month without a brace.

So – we made a deal. I’d call the hospital, she’d cast his foot to get a mold for the brace. Patrick would, well, try to cry more quietly.

By the time we left the therapy office, Patrick was sold on going to the hospital. So, we hurried home. Checked a temp. 101.8 this time. 15 minutes later. I grabbed the transplant go bag because I didn’t want to waste time packing, gave him some tylenol, and we booked it up to the ER.

The tylenol worked. Mostly. His fever was the same when we arrived.

And so, here we are. We are antibiotics to cover all the major bacteria, and an antifungal. I threw a bit of a momma bear tantrum when they tried to tell me they didn’t think we needed the antibiotic that kills his recurring kleibsiella bacteria.

He doesn’t feel well. He is tired. He only napped for 10 minutes. We have tried going for walks and in the end, he just prefers to lay in the bed.

And so, here we are. Hoping culture results are fast and clear. Hoping we are giving him the right drugs. Wondering how we’re going to make tomorrow bearable.

Just like every summer.

Mid-July rolls around and I start to get nervous. And I hate that we are here because I don’t want to be superstitious about certain months. But for some reason, summers are always hard for Patrick.

And so, I’m quite discouraged tonight. I am sad to be missing out on my first-of-the season tomatoes that I harvested this week and the green beans on my plants waiting for harvest and the great big yummy yellow zucchini sitting in the fridge. I hate that Patrick and I had finally hit our stride again, finally had a routine again, finally were catching up on the chores again. (Does anyone want to iron a month’s worth of dress shirts?)… And now we are starting over all over again.

But at least it is 10:30 and I can go to sleep because tonight giving the antibiotics on time is someone else’s responsibility.

Look who figured out how to take a self-portrait

So in preparation for catching up some blog posts, I pulled the pictures off of the camera I keep on my nightstand. And found this little surprise.

Note the wardrobe change. This has happened more than once.

So why did the blog change?

Thought I'd spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose. — Thought I’d spice up this post with pictures from our visit to Dream Night at Hogle Zoo, courtesy of HopeKids. Patrick asked me to get out my camera in the seal-viewing area and struck this pose.

Thank you so much for your patience with the transition over to the new blog page. I see that some of you have already made it along with e-mail subscriptions and all. I added a new subscription for anyone who had been subscribed to cotaforpatrickh.com. You should have gotten an e-mail from WordPress prompting you to confirm. If you got it right, then you got a notification of this post in your e-mail.

Anyway, I’ve been asked a few times a question that I want to clarify. Some people are wondering if the switch means that we are no longer fundraising with COTA.

The answer is, OF COURSE we are still working with COTA. They have been a wonderful support to us. We’ve raised $21,921.81 so far which is AMAZING! And they have still been an amazing resource for us. I can’t even put into words how kind and concerned they are every time I talk to them.

So why the change?

A couple of weeks ago, a COTA representative called me because the website domain was up for renewal. It has been 4 years since we started fundraising. Can you believe that? 4 YEARS!

4 years ago, COTA asked me to move our blog onto their web platform and servers so that they could help us make sure that our online fundraising presence followed all of the rules and regulations required by the 501(c)3 status. 4 years ago, we had a committee planning monthly fundraising events. We were new and required a lot of supervision.

But now, well, we’ve been at this for some time. We’re a little more seasoned. We don’t need someone to screen all the posts to make sure we got the verbiage for fundraising right. Our campaign has gotten smaller and a little less busy.

And so, we can follow a little bit more lenient set of rules. My personal blog no longer is required to be hosted on their servers.

If you remember, back in the day when I had time for personal hobbies, I was dabbling quite a bit in graphic and web design. I have been itching for years to get control of my own blog design back. To get features like tagging and categories and an automatic Facebook and Twitter feed. (And a smoother CMS to work with so that posting blogs would feel like less of a chore and I’d do it more often.) I am thrilled to have the option to post pictures and quick blog entries from an app in my phone. I think I’ll do a better job sharing with you more often. And, as icing on the cake, I could save COTA the cost of maintaining my domain and hosting so that that annual fee could go to helping another family with their transplant expenses.

So, long story short, I jumped at the chance. I’ve been backing up this blog for the past couple of years, but I decided to take advantage of having to sit up half the night waiting to give antibiotic doses and get the rest of the blog moved. Pulled it off in just a matter of days.

And here we are.

We have not given up on COTA and they have not given up on us. You can still make donations through the links on the top right-hand side of the page. We are still collecting used cell phones and ink and toner cartridges and other assorted electronic devices. And we are still open to putting together big fundraising events, if you have any great ideas. In fact, I’m thinking maybe it’s time for a new batch of “Got Guts?” shirts, since we’ve got a new domain. (That project may take me days, or weeks, or months.. but it’s in my little head.)

And I am SO VERY excited to be able to continue to share the story of our journey with you at this, our new blogging home.

If you haven’t subscribed already, there’s a box in the sidebar on the right.

Or you can follow the twitter feed at https://twitter.com/HoopesPatrick

Or the facebook page at https://www.facebook.com/PatricksGotGuts

King Buckle Boy

Patrick likes to script our lives. For example, we will be riding in the car and he will say..

Patrick-“Mommy?”
Me-“Yes, Patrick?”
Patrick-“No ‘Yes Patrick.’ ‘Yes, Buddy’!”

Then..
Patrick- “MOMMY!!?”

To which I must reply, “Yes, Buddy.”
And then he tells me what he wants.

Only yesterday he was not Buddy. He was “Buckle Boy”. Just out of the blue. And after a few repetitions, daddy added “King Buckle Boy”.

All day today he has been “King Buckle Boy”. Well, that and “Meow meow” which came from a conversation I missed between him and daddy.

Hooray for imagination

Mommy big cart, Patrick little cart

A few months ago we discovered that the Smith’s Food and Drug between Patrick’s school and our house has child size shopping carts available between their customer service desk. Now, at every opportunity, that’s where we do our shopping.

He loves the independence and is getting better at not taking everything off of the shelf or running away.

I find it exhausting, but he is happy and very cute with his little shopping cart. And, hey, it means he will happily agree to a shopping trip.

So long as we go in off-peak hours and have a short shopping list.

I have so much to tell you! – but it may be at a new domain

It’s been a crazy busy week with a line infection and hospitalization, results from our month of neuropsychology testing, a fun like a trip to the aquarium and a brand new tricycle.

But – I’m holding it all in for a few more days because it’s that time of year again where we decide if COTA should renew this website and, well, it came along at the same time when I had an itch to change blog platforms.

So bear with me and keep an eye out. We’ve already set up a new domain name ofwww.patrickhoopes.com and right now, if you go to that page, it’ll redirect you here. BUT in a few days here, maybe a couple of weeks at most I hope, you’ll see a new and updated website and this one will go away.

I’m putting my hubby to work finding a way to get the new blog to still e-mail you updates when I post. We are planning to move our subscriber list. I’ll do some research into RSS feeds. And I’ll try to post it all here in the next couple of days so you don’t lose us.

But write it down now, just in case the unexpected happens.

Thank you firefighters

I’m giving up on trying to catch up on the blog. The long and stort story of the past 2 months is that Patrick is out of school. He does not like playing home alone all by himself. And so, we are being Summer Explorers. Every day, we pick a theme. I have about 200 pinterest pages of different themed ideas to keep us busy. Some days it’s crafts. Some days it’s field trips. Sometimes books. And on and on.

Plus, we are seeing 3 therapists every other week, and doctors, and are going to weekly mommy and me exercise classes and story times at the library.. and I’ve signed up him for Kindermusik playdates. We are trying not to get bored.

We spent a week learning to explore, a week on things in the sky and another on things in the water. This week, we finally made it to earth and the topic yesterday was firemen.

So we baked cookies and made a thank you card to take to our local fire station. Then the TPN delivery was late and we ran out of time.

So we got up this morning to deliver them anyway. The firemen were so kind. (And their dog so little and fluffy and cute!) They gave Patrick hats and a pencil and a trick or treat bag just because. Then, because the fire truck was out, they gave him a tour of the ambulance. He thought it was big and scary, but very cool with LOTS of neat doors.

Thank you fire fighters.

Today, since yesterday spilled over, we are talking about jobs. We went to the grocery store and met a butcher and a baker.

And now naptime is over. So this post will be too.