Transplant Day 7 and the tooth fairy


This picture kind of tells most of the big news of the day. Look closely and you’ll see a few things.

1) Patrick was able to wean off of oxygen to room air during the night last night. That means no more nasal cannula.

2) They decided that his g-tube was providing sufficient drainage for his belly. He’s still having bleeding, but no apparent side effects. They have been trying to clamp his belly periodically throughout the day. If things continue going well, they’ll start feeds through his belly soon.

3) Patrick lost his first tooth. We noticed a loose tooth a week ago as Patrick was leaving his class Halloween party. When he went to the OR, the anethesiologist said he’d pull it so it wasn’t a choking risk. Then the report came back that it wasn’t loose enough yet. Well, today it was quite wiggly. And tonight, as I was putting Patrick to bed I noticed it was missing.

He was terrified. He thought something really bad had happened and insisted we needed to press the nurse call to take care of this big emergency. It took a while to calm him down. Then his nurse came in and helped me make a big deal about it. We called some other family so he could tell them and after a little bit of celebration, was proud and not scared. We’ve told him the tooth fairy will take care of finding it in his bed and he’s excited about finding some coins there.

Other big moments of the day: Patrick had his first scope. This is the entire reason that Patrick has an ostomy right now.. so they can easily look inside and check his intestine for rejection. They brought the scope right to the bedside. Patrick was pretty worried, especially as this happened first thing in the morning. But the doctors did a great job of putting him at ease, showing off the equipment, etc. Because there aren’t pain nerves in the intestine, they can just do the scope right at the bedside… Just slip in the scope, look around, take a biopsy and done. The longest amount of time was spent taking off Patrick’s ostomy bag so they could easily reach where they needed to.

He was downright adorable the whole time.. and when they sent a puff of air in to open the intestine (they said this might be uncomfortable), Patrick just giggled and said it tickled. Whew! We are doing those at least weekly for the next month and then very regularly for up to a year.. and so it was a huge relief that he wasn’t scared by it.

Really, our only scary moment today was walking. Physical therapy came and because we’d had all the excitement of a scope, a bath, two tubes and lots of adhesive removed all in the wee hours of the morning, Patrick was just plain tired. Also, with all of that going on, I don’t think they had been very consistent with pain medicine. Anyway, he made it out to the goal they’d set and was doing so well, they decided to push for a few more feet. Only, he was hurting and didn’t want to go 2 more feet. He just sat down on the floor and cried. (This is a problem on so many levels when it comes to protecting an incision and protecting an immune system.) It took a good 10 minutes to coax him into walking back to the room and then, only with me hugging him the whole way.

We’ll try again tomorrow.

Really, it was a pretty good day overall. He napped for almost 3 hours on my lap after his walk.. then I took a break and went back to my room for my own nap. We’ve played all evening and are just getting ready for bed.

One more thought, though.. Mail time is quickly becoming our best time of day. Patrick loves opening all of his birthday cards.. Some of the messages and other gifts leave me in tears. We should be moving out of the ICU soon and plan to plaster the walls with them. I’m not sure there will be even an inch of spare space.

I can’t believe that a week ago at this time, Patrick’s team was getting a call that Patrick had been matched with a donor for a long-anticipated transplant. It breaks my heart to consider what the donor family was going through at that moment while we, completely unaware, were putting the finishing touches on Patrick’s birthday present and plans. How quickly life can change.

I’ve shared it before, but this song and video have been in my thoughts often this week as I consider the selfless sacrifice in the midst of devastating loss.¬†

State Fair

After dinner tonight, we were trying to decide what to do with our evening. Then, Brian remembered that it was the opening day of the state fair.

If we’ve learned nothing from life with Patrick, it’s that you’ve got to take opportunities when you have them. So, even though it was already 7 pm on a weeknight, we decided that since we could go to the fair, we would.

Patrick loved it! First, we came across a pony ride. And, since we were seizing every opportunity, decided that Patrick should get to ride a horse. He was pretty nervous about it. It was halfway through the ride before he was willing to even put his hands down.

Then, we went on to see the other animals.¬† Right away, we came across a very friendly goat. He was standing up on the edge of his pen begging for attention. Once I realized how friendly he was, I let Patrick pet him, too. Patrick loved it! Not only did he pet the goat, but he actually gave him several “loves”.

Next, were the cows. Patrick’s eyes lit up when he heard them “moo.” Soon, he was saying “moo” too, delighted that he actually knew what sound they made.

The sheep were also friendly enough for Patrick to pet. Patrick was a lot braver right from the start. He’d touch the sheep’s nose and then turn with a big cheesy grin for Daddy to take a picture.

The pigs were exciting. We were in just the right place to watch them move one from its pen to be washed. Patrick was transfixed watching the farmers try to chase down and lather the pig.

By then, the sun had set so we left the animals to be greeted by a fully lit carnival. Again, Patrick could barely take his eyes off of the sight. He’s never seen anything like it and was just soaking it in.

Finally, we stopped and bought some freshly cooked doughnuts. Patrick couldn’t get enough of these. They were so soft and warm! The perfect treat on a cool evening.

Usually, Patrick would crash in the car after that much excitement, especially being up past bedtime. But tonight, he just couldn’t quit talking about it. Our ride home was filled with happy moo’s, neighs, baa’s and oinks from the back seat, mixed with giggles and excited gestures.

I think this may be one of the best family outings we’ve ever taken.

Patrick’s 2nd haircut

We always stall as long as possible between Patrick’s haircuts, just cuz we love his little mophead. However, Patrick had hair in his eyes in front and his hair was past his collar in back… all except the very back of his head where he’s rubbed all the hair off while scooting around.

This is the best before picture he’d allow. His eyes are closed because he didn’t like the mist from the water bottle.


Patrick's Second Haircut


Most of the haircut was patient waiting, with a few wiggles.



Of course, he did start to get sleepy by the end.

But in the end, still turned out quite handsome.

Thanks to Wes of The Hair Place for a great haircut. And for keeping Daddy looking nice, too.