Tag Archives: the zoo

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.

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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.

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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.

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Outpatient

Last entry, I wrote about Patrick coming down with a common childhood illness and how much more complicated that is for him.

Well, as predicted, this illness definitely had it’s impact. The day after that blog entry, Patrick started throwing up. As it turns out, herpangina, better known as Hand, Foot and Mouth is caused by a series of viruses that live in the intestines. Symptoms indicate that Patrick’s was caused by one called “enterovirus.” As a result, Patrick started to lose so much fluid by g-tube that I was having a hard time keeping up replacing the fluid.

By the time Brian got home from work, he was pale and weak, running a fever, and we were worried. I put a call into Patrick’s GI to ask if they wanted to check blood cultures. By the time they called back to talk about putting in those orders, we’d changed our minds and asked if he could just come in for a night of observation. The night went well and Patrick was obviously feeling better with no additional treatment and by morning, we were asking to go back home. (Especially since we’d barely gotten any sleep.)

By early afternoon, we had been officially discharged when we discovered another problem. When I went to connect the TPN, one of Patrick’s lumen’s wouldn’t flush at all. I tried a few times without success. But we were sleepy and his nurse timid. We’ve unclotted lines lots of times at home. He still had one working lumen, so I said “let’s go.” On the way home, I made calls to get the anticlotting agent sent to me.

All night long I tried to work it, getting up every couple of hours to try again. It just didn’t work. By morning, I knew it was a lost cause for my efforts. But by this time Brian was also sick, I hadn’t slept in 2 nights, and Patrick needed rest. So I made phone calls instead of running in. Eventually, we made arrangements to go in to have the hospital staff try to unclot the line. We arrived around 8 p.m., (we asked to wait until we’d at least had Brian’s birthday dinner with his parents)… And the nurse tried all the things I’d tried. Finally, at midnight, we declared it a lost cause and they sent us home.

Patrick’s doctor called the next day to tell me that, as we suspected, Patrick would need a new line. And we went on, finally feeling a bit better, with celebrating Brian’s birthday. We took Brian shopping for a few big wishes, then went out to dinner. That was all the energy any of us had.

I talked to surgery the next day to make arrangements for the new line to be placed. Since Patrick still had sores in his throat and his surgeon was out of town anyway, we scheduled it a week away on Tuesday.

That was a week ago today. The surgery went well. We checked Patrick in at 6 a.m. then talked to the nurses, surgeon and anesthesiologist who’d take care of him. The anesthesiologist said what we all know, “He looks a lot better in person than on paper.” Still, even minor surgeries can be major for Patrick so we didn’t really relax until his surgeon came and told us all was well.

The only complication was that Patrick was bleeding fairly easily. But that seemed to be under control. We came home and I sent Brian off on a business trip to DC the next morning.

His occupational therapist came the next morning as I was trying to find an assistant for the day-after-surgery dressing changes. Since we’ve been specifically trying to help him with those, she volunteered to help. All went smoothly and we were playing with her after when I noticed that I could see blood on the new dressings.

I peeked under his shirt to find that the old line site had bled since the change so much that it had soaked the dressing and was now soaking into his shirt. So his OT made a quick departure as I called the hospital who suggested I change the dressing again and apply pressure. It worked and he went to sleep.

But, come 6 p.m. the same problem came back. I called the surgeon on call this time and got the same instructions. They worked again, but I realized that Patrick needed to be helped to be a little less active until things healed.

Lucky for him, we’d bought a zoo pass the weekend before, so I packed him up and went to the zoo where he’d be strapped down in the stroller for the morning. It worked and we had a great time looking at the animals (I think the zoo deserves a separate post)… He only scratched off his dressing once while we were there, and I was able to get a new one on without any bleeding at all! And I managed to keep the IV tubing away from the stroller wheels until we were exiting, when they got tangled so badly they broke, but fortunately I pulled off a quick tubing change without any incident and we made it home safely and ready to nap.

He seems to be healing just fine from the surgery now… and his sore throat is gone. His tummy even was better for a couple of days. He’s back to losing a ton of fluid again this week which means either the enterovirus is still there… or he’s been exposed to something else… which is possible.

It’s work sometimes to keep Patrick outpatient, but as my next posts will show, it gives him the chance to experience the joys of life, which makes it worth all my work.

Sorry this entry is so long! Between Patrick, Brian and myself being sick at various times and me “playing Florence Nightengale” as Patrick’s case manager put it, this is the first chance I’ve had to catch up stories. I thought I’d start with the medical first so I can follow with tales of fun later.

A trip to the zoo

We took Patrick and his cousins (and their parents, and grandpa) to the zoo yesterday. The last time we were at the zoo, Patrick was far more interested in the enclosures than in the animals themselves.

This time, however, he started to take notice that there was something different there to see. In fact, in the giraffe house, he tried all he could to get me to hold him close enough to touch the giraffes. (This could be especially dangerous because one of Patrick’s favorite games is to bonk his head into things he likes).

As is often the case with Patrick, this zoo trip was a little more complicated than your average outing. Patrick’s temperature was a bit high yesterday, so I carried a thermometer around in my pocket to check it regularly.. With the children’s hospital less than 10 minutes from the zoo, we figured we’d see all we could, and then run quickly if he got into the danger zone.

On top of that, while putting Patrick into his stroller, I managed to snap the tubing for his lipids in half. Thankfully, the lipids are just his “cheeseburger”.. needed fats and calories, but optional enough that we could wait till we got home to fix it.

Thankfully, the fever hasn’t evolved into worse and the lipids were restored without incident. I’m sure Brian’s brother thinks that we always have this kind of complications whenever we go anywhere. And, I’ll admit, it happens more often to us that I’d like. But as frustrating as it may sometimes be, it really is worth all the extra work it takes to do these family things when we can.

I am thrilled that Patrick was able to enjoy the zoo. And that he picked my favorite zoo animal to try to pet.

Patrick’s First Date

On Monday, Patrick had his first date… play date that is. My good friend Lindy was here visiting from Seattle with her daughter, Lauren. We decided it was a great excuse for Brian to take a day off and for us to finally go to the zoo.

It was a wonderful day! We started out at lunch where Patrick and Lauren sat in high chairs (this was Patrick’s first time) and played with spoons and straws and napkins. Then we went and picked up the zoo pass.

It was beautiful weather. It seemed like every stay at home mom in the valley had decided to get out to enjoy it. I’m sure it helped that there’s an adorable baby elephant, a baby giraffe, and a baby monkey, to name just a few of the new arrivals at the zoo this season.

Lauren was totally into the animals. Patrick was more interested in the enclosures. (The glass, hand rails, etc.) But they both enjoyed the day…

… even if Patrick was worn out by the end.

Patrick and Lauren really seemed to have hit it off. This is good news, as Lindy is the only person I know well in Seattle and Patrick and Lauren will probably get more than their fair share of each other as we go through this transplant journey.

I think this picture says it all. Yes, they held hands in the car, by the waterfall, and at dinner. This could be the beginning of a beautiful friendship.