Category Archives: Traditions

Fireworks

Last year, we watched our community fireworks from the roof of Primary Children’s Hospital while Patrick was admitted for the first of a series of yeast infections. This year, we were able to take him to see them in person. Patrick isn’t bothered by big fireworks. He just sits back and watches them. He does think it’s kind of unfair to keep him up so late… though he really did enjoy the time to play with family.

For the 4th, my family had our tradition “Tank Wars.” We build origami cities, incorporate them with fireworks, then send in firework tanks to set the whole thing ablaze. Patrick was not so happy with these. They were close and much more dangerous. However, he also couldn’t keep his eyes off of them.

It’s always an occasion for Patrick to have a holiday at home. We felt really spoiled to have a whole holiday weekend.

Who needs sleep?

There’s a song by the Barenaked Ladies called “Who needs sleep?” Here’s a line from that song: “With all life has to offer, there’s so much to be enjoyed. But the pleasures of insomia are ones I can’t avoid.”

If you’ve been waiting for an update on the concert, I need to apologize. See, Patrick’s been having a hard time sleeping this week. It seems every few nights something goes wrong and wakes him up. First it was diaper rash. (When his prescription strength creams fail him, the result is massive skin breakdown that makes me want to cry just looking at it.) Then, I accidentally turned off his TPN pump and had to monitor glucose and hydration in the middle of the night. And my little happy-go-lucky optimist responds to these discomforts by trying to cheerfully play through them. So instead of being up crying, he’s up jumping and playing until I pinpoint the cause of discomfort and get him settled.

So – my good intentions of writing earlier in the week were thwarted by extreme exhaustion. And then a series of coincidences landed us in the hospital for about 36 hours.. not helping sleep, but helping to remind me not to procrastinate.

Here’s a rundown of the other events of the week.

Wednesday, Patrick had an appointment with his GI, Dr. Jackson.  Patrick’s central line was a bit slow to heal this time around and was a bit weepy even 2 weeks after placement. So I asked the doctor to look just to make sure there was no infection there. Since we were looking for infection, he checked his temperature and it was 99.3. So – Patrick and I hung around for an extra couple hours in the hospital. Dr. Jackson came in and we took off his central line dressing so he could examine it up close and take a culture of any fluid that was there. It looked healthy, just healing, so I went ahead and put the dressing back on. Then we went down to the lab and had blood cultures drawn. Those cultures were all negative.

That night, I got that getting sick tickle in my throat and started to run low-grade fevers.. kind of like when you get a flu shot. Never sick, but not quite right. Since the cultures were clean, I said “Ok, he has a virus, too” and didn’t think more of it.

Friday, Brian came home early from work and since we’d all missed a lot of sleep, we all laid down for a nap. I got Patrick up to put on his afternoon TPN around 4. Only when I tried to draw ethanol out of his line, I just got air. Tried again, got air again. Finally, 3 syringes full of air later, I looked and found a hole in Patrick’s central line.

So away to the E.R. we went. They’ve implemented a new policy that sent us to the Rapid Treatment Unit (RTU) for the repair which, by the way, is WAY preferrable to the E.R. Many fewer bugs and much quicker, more attentive care. The RTU is set up to give basic medical care that takes 24 hours or less.

Well, part of any admission is to check a temperature and Patrick’s read about 100. They rechecked it rectally and it came up 99.8, so we could justify not automatically being admitted. I explained the viral symptoms, but they decided to check cultures anyway. Then they repaired the line and sent us on our way.

The next day, Patrick woke up feeling great! No fevers. So since it was memorial day weekend, we packed up and headed out to Tabiona – a small town in Eastern Utah – for a family reunion. He loved the car ride.. playing in the back seat, singing with the radio, napping, and even trying to figure out how to whistle. Had a great day with cousins, aunts and uncles.

That evening, we got home to find two messages on our answering machine. The blood cultures they’d drawn were showing a staph infection.

Now, in case you haven’t noticed this, I’ve spent a lot of time learning from infectious disease over the past year. And one thing they’ve taught me is that 1 in every 20 positive cultures is a “contaminant”.. that is, something that grew in the culture that didn’t come from the blood sample taken. And staph, although it lives on all of our skin and can get into central lines, usually isn’t one you pick up at home. It’s most often contracted in the ICU. Every positive “staph” culture Patrick has ever had has been a contaminant.

So – I called the doctor and made my case that Patrick wasn’t sick and that this was likely a contaminant. We decided to recheck the cultures on Sunday.

Well, Monday morning rolled around. For once, we were planning to be home for Brian’s day off and had a big to-do list.. And at 8 a.m. the phone rang. Sunday’s culture was positive for staph, too. Patrick’s still healthy, but we’d better go in.

So, just to be safe, that’s what we did. We got there at 9:30. Because it was a holiday, things took longer than usual.. but by early afternoon they’d drawn a new set of blood cultures and by 4:00 p.m. had started some antibiotics. Meanwhile, Patrick’s nurses got to run to try to take care of all of his basic daily needs.. a slow process when doctors have to write for them and pharmacy has to fill them before it can happen.

A quick soapbox moment. One of the most frustrating things about going into the hospital is how difficult it is to maintain the same quality of care and quality of life as at home. There are so many more steps, so many more people, and so many more lawsuit-prevention policies that it is exponentially more difficult to accomplish the same things that I do at home in the midst of daily life. In a short 36 hour stay, I think the nurses had to call the pharmacy at least 10 times about administration questions, late medications, and my ever-hated argument about whether or not they’ll let Patrick have his home TPN. (I usually lose this battle and they hang something with sugar, water and electrolytes but none of the good vitamins, minerals, and fats that he’s used to.) They started him out on a super high dose of antibiotics. (I won’t let that happen again. I’ve seen it done 3 times now with the same result and I’ll speak up next time.) And they accidentally ran his TPN at a 5% of it’s prescribed rate for the night. ( Thankfully, this only resulted in a grumpy, sleepless night as Patrick got hungrier and thirstier. They caught it in the morning and there was no other harm done.) I can’t really fault the nurses here. They work their tails off trying to get everything right within Patrick’s first 24 hours. The fact of the matter is that he’s a complex kid who has a lot of special care. For me it’s routine.. but in the hospital, it’s the exception. In fact, there are some things that require special permission every time because it doesn’t match hospital policy. Still, it’s frustrating to me to have to work so much harder to maintain the status quo. I much prefer to just do it myself at home. Ok. Getting off my soapbox now.

Yesterday morning, Dr. Jackson came on service. I ran into him at the nurse’s desk looking up info to find out why Patrick was in the hospital. We talked about the 4 sets of blood cultures that had been drawn. By then, the cultures drawn in the hospital Monday were still negative for infection. Looking back, it was looking more and more likely that we’d had two contaminants in a row. So Dr. Jackson said the words that we love him for saying so often: “I think you can do this at home. Would you like to go home?”

He helped sort out a few more questions and then set the wheels in motion for us to go home. Because they’d started Patrick on an extremely high dose of antibiotic, we had to stay till 4 to have them check his blood one more time to make sure that he’d been able to get it back out of his system. Brian got off work and up to the hospital by 5:30 p.m. and we made it home shortly after that.

Patrick will be on antibiotics for the next 2 days at least and then they’ll check cultures again to make sure that he doesn’t have a real infection. And then hopefully things can go back to our at-home normal again for a while.

Whatever happens, we’re resolved to made better use of this time at home. Procrastination isn’t really an option when you can’t tell where you’ll be hour to hour. I would hate to get the transplant call and leave my house in the condition it’s in right now.

And – I’ll be getting that blog entry about the concert up hopefully before the end of the day tomorrow.

Oh – the best news of all? With us healthy and at home, Patrick slept a blissful 11 hours last night! Which meant mom and dad got some sleep for once, too.

Festival of Trees

The Festival of Trees is a big Christmas tradition here in Utah. Groups and individuals decorate and donate trees, wreaths, crafts and more. They’re displayed to the public for a week, and available for sale. All proceeds from sales, admissions, and goodies sold are donated back to Primary Children’s Hospital to help families in need.

We took Patrick to the Festival tonight. He wasn’t so sure about the crowds and was only vaguely interested in the trees. He did really like the chains used to protect the trees and the excuse to ride with Daddy and pull Mommy’s hair. At the end of the evening, we took him to meet Santa, which was a pretty good 1st Santa experience. Patrick loved his beard and sleigh bells.

This year’s Festival was a bit bittersweet for Brian and myself. There were a couple of trees there honoring friends’ children who passed on this year. Those brought tears to our eyes. It meant all the more to know first-hand the tender moments that happen in a children’s hospital. Just one way that Patrick has changed our lives and hearts for the better.

Patrick’s 1st Birthday Party

Patrick had SUCH a good birthday! He could tell from the party preparations the night before that something good was going on. He watched me decorate his birthday cake… and then was too happy and excited to go to sleep.

He did, though, finally, and when he got up in the morning, he was again just HAPPY! It’s like he knew this was a big day.

Because Patrick’s birthday is on Halloween, we dressed up and invited guests to do the same. We chose a circus theme for the party. Patrick was dressed as a monkey. Brian was the ringmaster. I was a clown.

We spent the morning finishing things up for the party. He thought watching me hang streamers was great fun! (I used red and white streamers to create the feel of a circus tent in our living room.) About 1 we changed into costumes.. he loved my clown wig and played with it for most of the rest of the day.

Slowly the guests arrived. Because Brian and I have brothers, sisters and parents nearby, we knew there would be a lot of grown-ups… so we made all the circus activities self-serve. The adults helped the kids paint their faces and learned to make balloon animals for them. We had popcorn and animal crackers and caramel apples.

Of course, most everyone came in costume. Some carried on the circus theme… My dad came as a lion tamer, with my mom dressed as his lion. My brother was a magician.

Some of the friends and family who dressed up

Once everyone arrived, we sang Happy Birthday and Brian blew out Patrick’s candle. (Patrick was too confused about why everyone was singing and just kept watching me to see if it was OK.)

He’s not allowed sugar, so he couldn’t have cake, but he was given permission this week to have cheetos and hulless popcorn, so that’s what he munched on instead.

Daddy’s better than any boring old snack.

Then we opened presents. He got lots of new toys and some new clothes. He loved them all, but I think his favorite thing about the party was not the gifts, but the fact that all the people he loved best were there.

Patrick & “Papa”, Brian’s dad

Patrick and Grandpa, Emily’s Dad

The party wrapped up around 6. All the kids went home with hands full of balloons, balloon animals, caramel apples, and cracker jacks with faces all painted. I think everyone had a really good time!

That put us just on time for trick-or-treaters. Patrick didn’t go trick-or-treating this year… he’s too little and not allowed candy anyway. At first he liked seeing all the people who came to the door. Eventually he got tired and not too happy when people would ring the doorbell. Eventually I sat him on my lap and we read books until we were sure he was good and tired. Then, we turned off the porch light and put him in bed. He was exhausted, and so were we.We all crashed for the night.

Gotcha Day

In the adoption community, the day an adoption is finalized is known as your “gotcha day.” Well, miraculous as it is, Patrick’s adoption was finalized on January 7th.

It took a couple of days for the news to get to us, and a week before the papers arrived and it really seemed real. But, late as the news is in arriving on this blog, it is true.

LDS Family Services’ lawyers were amazing and petitioned the court for early finalization so that there would be no legal hurdles to our taking Patrick out of state to be evaluated for transplant. And, well, the court agreed.

In following his holiday tradition, we submitted our part of the petition on Christmas Eve. But Patrick managed to finally have his own day in his gotcha day. January 7th is the day after we celebrate the Italian tradition of Befana in our house and wrap up our Christmas season.

We’ve made arrangements to go to the LDS temple with him on February 13th so that we can be sealed for time and eternity as a family. This is a special ceremony in our faith. We believe that marriage and families are intended by God to be eternal, not till death do us part. Marriages performed in LDS temples are performed for time and for eternity and children born into an “eternal” marriage are likewise a part of that family for eternity. A sealing ceremony provides that same promise for adopted children. Patrick will be tied to our family as though he had been born to us. This is something that his birth family wanted for him and a day that we have been looking forward to for a long time.

Patrick’s First Christmas

Although this picture may not reveal it, Patrick had a very nice first Christmas. It almost came and went, we’ve been so busy. It was a definite feat to get Christmas letters out (sorry to those of you who are still waiting), goodies made (again, sorry if you haven’t gotten yours yet), the tree up (only took a week of intermittent effort) and presents bought and wrapped.

But the most important elements of Christmas were still there. Brian and I had our traditional Christmas Eve dinner and Patrick played in his bouncy seat nearby and enjoyed his feast of 14 mL’s of formula. We opened our Christmas Eve pajamas (another family tradition), and Patrick loved his so much that he slept his best night yet in his. We decided it was probably the last year we could get away with sneakily opening our other presents on Christmas Eve (this is a remnant of being the kidless ones who travel around to family on Christmas Day)… so we opened all our presents before going to bed. All in all, considering everything that’s happened in the past month, it was still a very nice Christmas. I can’t wait to find he time to dig into the books that Howie bought me.

Patrick’s had presents rolling in all week, so we only wrapped him one for Christmas… a gloworm that he loved so much when we found it in the store that we had to buy it. But he was definitely spoiled by friends and family… and we were able to finally just about finish getting his nursery furniture, appliances (yes, he has his own fridge), and decorations together.

We spent the afternoon and evening… and actually all weekend… visiting with family. Everyone loves holding Patrick so much that I have a hard time keeping track of it so that it’s fair for everyone. It was fun to be able to share him with grandparents, aunts, uncles, and cousins.

We’re hoping for one more miracle this Christmas and will post details about it as soon as we know if our wish comes true.