Tag Archives: the Church of Jesus Christ of Latter Day Saints

Transplant Day 45 and Gingerbread

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Well, it’s about 6 p.m. on a very quiet Sunday evening here in Omaha. Patrick is taking a little time in the playroom and I thought I’d throw out a quick update.

It’s been a simple day. We slept in a little bit because we were told no labs. I had Patrick in the bathtub when there was a knock at the door. It was his home nurse. She hadn’t gotten a change of orders. So while she called looking for those instructions, I got Patrick back out of the bath and dressed just in case. But she got it sorted out and went on her way.

That put us a little ahead of our expected schedule for the morning. We ate breakfast and got meds and then pulled out the Dora Candyland game they have here to play while waiting for our next plans.

I decided that maybe a Sunday morning outing would be a nice change of pace today. The Mormon Trail Center has a gingerbread house display every Christmas. I’d heard about it from more than one of the nurses. So I invited any of our friends at the house willing to be up and out earlier in the day to meet us at 10:30 to go over. (I am still hiding from crowds to protect Patrick from illness with his weakened immune system.)

We don’t have many early risers in the house right now, so only our friend Wendy joined us. Her son is 18 and had a transplant a year ago. So while he slept, she came with us.

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The gingerbread houses were fun and impressive. There were simple displays from scout troops and other kids groups. There were also very elaborate displays with sculpted candy and such. It inspired us to want to set up a gingerbread house making activity here at the house.

Then, we went upstairs in the visitors center and took a brief tour. I should maybe get tired of that, but I really don’t. I see so many parallels between the sacrifices that pioneers made crossing the plains to our life right now. Separated from husband and family. Small living quarters. Nebraska weather. And hard trials. I was really glad we got to go.

And they finished off the tour with this little video about the true and first gift of Christmas, Jesus Christ. I’ve been meaning to share it with you. Now seemed like the right time. I was talking to Brian last night. He’s doing all the grunt work of Christmas this year. Mailing cards, wrapping presents. Meanwhile, I’m here with my little nativity advent tree and only serving Patrick and the other people in the house as my jobs right now. It’s a different Christmas season and teaching me a lot.

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Anyway, we came back to the house and ate lunch, put in some laundry, visited with some of the other kids for a while. Patrick was sent a 12 days of Christmas gift countdown by our church youth group and today was the first day to open a present.

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Then the elders came with the sacrament. Our usual guy was busy this week and so this was a new father-son duo that came to visit. They got a bit lost on the way. It always seems so very brief when there are no meetings around the sacrament. I miss church horribly right now. I’m realizing that I had found a way to work scripture study and prayer into our hospital routine.. But this new Ronald McDonald House routine has been harder that way. Patrick can’t sleep in because of labs and that’s when I was reading before. And with his insomnia, he is up till almost 11. You think finding time to blog is hard? Try finding time for quiet study and meditation when you have a 6 year old who is desperately stir crazy with you in every waking moment.

But I can tell today that it needs to be a priority. Sundays are kind of a day to refill spiritually and I can tell that my lamp is running on empty and there are no meetings of any kind to refill me. That falls to me these days.

There’s no dinner in the house tonight so I probably had better go up and make us some dinner here sooner or later.  But I thought that while I had a quiet moment and an internet connection, it was worth checking in. Sorry about the typos in yesterday’s blog post. I wrote from my phone and I obviously didn’t do a good job proofreading.

Transplant Day 31 and a Day of Rest

It seems like Patrick turned a corner last night. I wish I could say things are all better. Today, for him, things are still hard. His fevers are gone. He hurts and hurting is making him not want to take deep breaths. Because of that, even though his lungs seem a bit healthier, he’s still requiring oxygen support when he’s awake. (Not always while he’s asleep, which confirms the idea that he’s in pain.)

Therefore, we have seized upon this Sunday as a day of rest.

Of course, it didn’t start out in a very restful note. The fire alarm went off here in the hospital this morning at 5. I wish I could say that’s a small thing, but it’s not. Strobe lights flash in all the halls. They shut all the doors. And this recorded voice repeats, “There is an emergency in the hospital” over and over again. I wish I could say this is a rare thing, but it does go off somewhat regularly. The difference today is that it didn’t stop. After about an hour, they did finally figure out how to shut the voice off. “Mostly.” But at 7 the strobes were still flashing and the doors were still closed and because that somehow affects the security doors in the pediatric units, security was there.

This was enough to get Patrick good and awake for a little bit last night. Not the end of the world.. right before the alarm he was awake needing pain medication anyway. I was really grateful for his nurse last night who, instead of offering sympathetic words, got silly and made Patrick laugh with silly antics and a pillow fight at 5:30 a.m. I learned a lot from that as I saw how much better Patrick felt laughing.

Once Patrick was feeling a bit better, I decided not to force the idea of sleep. I turned on a Blues Clues and told him I was still tired but he could watch or sleep so long as he was quiet. (Last night, because he was hurting, Patrick opted to sleep in his bed alone with me asleep in the recliner, which almost stays reclined, next to him holding his hand.) I went back to sleep and so did he.

Then, about 7 a.m. Brian appeared cuz I guess he’d been awake, too. We did an early morning shift change and I headed off to get ready for church. Since Brian flies home in a few days and it will be a while before I have the chance to attend in person again, we decided that today was a good day for it.

I had the chance to visit with some of the Ronald McDonald House staff while I was waiting for it to be time to go. One of them had been to the temple open house when they built the temple here and we had a good talk about temples and why they are important to us.

I only stayed for sacrament meeting. It was good to be able to sing hymns with a congregation. I met the bishop and the newly called compassionate service leader who went through her own big, long, scary illness and hospitalization a year ago and knew all the right questions to ask.

Then I came back to the hospital where I found that Brian had been trying to help Patrick get up and move around the room, but it hadn’t been going easy. Patrick hurt and getting up just made him need more oxygen. I found him sitting in the recliner and we played playdough together for a little bit.

Then, the men from the ward (congregation) came with the sacrament for Brian and Patrick. Today a 12-year-old deacon came along and Patrick was excited to make him play playdough, too.

After they left, Patrick was looking beyond tired.. so we decided it was time for a nap. Patrick tried to avoid it. First, he stood an extra long time leaning against my shoulder. We discovered that daddy blowing zerbets on his back made Patrick’s heart rate go down and his oxygenation go up. Then, he opted to walk to the mailbox on the playroom. But once we got there without oxygen on, he was tired and I carried him back and put him to bed.

He slept 4 hours. He is only awake now because he needed his diaper changed. But his monitors reveal that the sleep has helped him to feel better.

So it’s been a very quiet Sunday, and a much needed chance to rest. I keep reminding myself that, though much smaller than transplant, yesterday’s procedure was a surgery and it will take a few days for the pain to go away again.

People often comment or ask how it is that we stay hopeful and positive during these hard times. Patrick’s attitude helps a lot. So does the support of the staff here and all of our friends and family.

Today at church one of the hymns reminded me of another way, too, that we are getting through this. Here are the words I sang today that brought a tear to my eye and some comfort to my heart.

I believe in Christ; he stands supreme!
From him I’ll gain my fondest dream;
And while I strive through grief and pain,
His voice is heard: “Ye shall obtain.”
I believe in Christ; so come what may,
With him I’ll stand in that great day
When on this earth he comes again
To rule among the sons of men.

I’ve spent the evening trying to find a good Christmas Advent for Patrick. In years past, I’ve done an activity a day calendar with baking and outings. But many of my activities don’t fit right now and I don’t feel we can plan ahead enough. So I’m looking instead at a symbol of Christ/craft a day idea like The Truth in the Tinsel.  Just gotta figure out if I have the resources to pull it off here.

Because today I was reminded that it is Christ’s atonement that carries us through this. He took upon Him all our pains, both physical and emotional.. not just the pain of sin, but our grief and other sorrows, too. His resurrection means Patrick will one day have a perfect body, free of all this illness and pain. Better than a transplant. Much better. He is the Prince of Peace.