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.

Transplant Day 28 and Thanksgiving

I didn’t get to blogging last night. Patrick has had some really good moments, some really difficult moments, and a very busy treatment schedule for the past 2 days. This is the first quiet moment I’ve had. So let me catch you up.

Two nights ago, I emptied Patrick’s ostomy bag and put him to bed. (In case you don’t know, an ostomy or stoma is a place where a surgeon has made a small piece of intestine come out of the skin. It drains into a bag. Patrick needs to have one so they can easily and safely do scopes to watch for rejection for the next year. Eventually, they’ll take it back down and reconnect him.)

Anyway.. I put Patrick to bed a little before midnight. By morning, his ostomy bag was still empty. When his nurse gave him his morning meds, he couldn’t keep them down. And as the day wore on, it seemed his discomfort was growing more and more. But we told the team and the surgeon said get him up and maybe it will wake up.  If not, then call and a resident could come use a small tube to help break up and drain out any small blockage.

Well, 2 p.m. rolled around and still nothing and Patrick’s belly really hurt. We called the resident. She was really hesitant and thought that it was dangerous to put a tube into Patrick’s stoma and new bowel. So she wasn’t going to do it without permission. The fellow (who is over the residents) had been in the hall pulling up chest x-rays during the conversation, so he hadn’t heard the instructions.  It took another hour and a little bit of firm insistence before she finally consented to come do the procedure.

But, once she did. Patrick felt lots better. The nursing staff decided that they would insist that this be done once every 8 hours at least. Because of that, Patrick was much more comfortable for the rest of the afternoon.

All that pain made it so Patrick didn’t feel much like getting up and moving much. Thank goodness for family, though. When Brian’s brother Mark heard that we were going to be here for Thanksgiving, he and his wife immediately started to make plans to come celebrate Thanksgiving with us. They rented a house for the weekend so they’d have a kitchen to cook in. They drove here from Denver, arriving Wednesday night. Then, the night before Thanksgiving, they went and found a grocery store, bought all the food for the meal, and went to work.

So yesterday morning, while Heidi stayed behind and cooked, Mark and his kids came to play. They threw a ball, blew bubbles, put on a mini puppet show. They brought Patrick big smiles, even though he didn’t feel very well. Then, they went to help pack up the food and Patrick took a nap. He slept through dinner, and that was really ok, since he wouldn’t have been eating anyway.

For a Thanksgiving dinner in the hospital, this meal was amazing. As I’ve said before, this hospital is abandoned on weekends and holidays. So we set up dinner on one of the long tables in the cafeteria. We all ate until we were well stuffed.  The kids played in the cafeteria and we rested and talked.

Then I came upstairs so Patrick wouldn’t wake up alone. Good thing, too, as he woke up crying in pain. His nurse got him a hot pack and some pain meds, though, and with his belly a little less full it helped.

Brian came up after his family had left for the evening and with pain medicine on board, Patrick was ready for a walk. We got the nurse to bring in a cart for some portable oxygen. His walking was stiff and clumsy and guarded… But getting up and moving seemed to have helped his lungs. His oxygen saturation was much better for the rest of the evening. That, after a day of restarting respiratory therapy, seemed to make a really big difference.

It was a busy evening, though. Nursing staff is short on a holiday so the nurses were running like crazy. But still, with several antibiotics on the IV pump in the evening, the pumps just beeped and beeped.  Finally, we made it to sleep at midnight. Unfortunately, vitals woke up at 5 and then labs at 5:30 and so we were both exhausted by morning. Therefore, this late post. I’ll start writing about today next and hopefully post after adding a bit more right at bedtime.

Transplant Day 27 and Baby Steps

Well, since I blogged this morning, I don’t have a lot of updates. Patrick’s made steady progress all day. He still needs some oxygen support, but not as much. He slept till noon. He played in his wagon.

It was a good mail day. We got cards from Patrick’s kindergarten, a picture of the Salt Lake Temple from a friend, and a package from Patrick’s therapist and social skills group. Those things came on just on time to lift our spirits. Patrick was confused and sad to wake up in the ICU when he’d expected to go back to his room last night. Brian and I were just tired.

In addition to that, Brian went to Village Inn to pick up a couple of pies I ordered yesterday for Thanksgiving dinner. When I placed the order, they noticed my out of state phone number and asked what brought us to town. Well, when Brian got there to pick up the pies, she came out and explained that she had bought our pies for us. Just the kind of gesture to make the morning after a bad night better.

Patrick had a CT scan this afternoon to look at the current state of his lungs. That scared him and brought some tears… but they let Brian and me hold his hands and we even got some smiles during the test.

It’s been great to see his smiles. I hadn’t noticed how much they had been missing till I saw them come back. He is sore and afraid of being more sore so he hasn’t wanted to walk much. His neck is kinked and he doesn’t want to turn his head. But overall, he’s still feeling and moving better.

After it hurting to talk yesterday, Patrick has stayed with his default method of communication from yesterday. He is waiting for yes/no questions and then answering with sign language. This is better than not talking at all… but I hope his words come back soon.

We were transferred back to the pediatric floor today to a room that is a touch smaller but otherwise a mirror image of our previous room. Since his lungs are still kind of at risk, we are packing smarter this week… keeping things a little more put away and hanging fewer decorations on the walls.  But it is nice to have more space and more quiet at least.

Brian’s brother and his family arrived tonight. They are making Thanksgiving dinner tomorrow. It was really fun to see them. Patrick was so content that he fell asleep in his wagon holding Mark’s hand. I don’t quite have the heart to move him back to bed yet.

Transplant Day 26 and Atelectasis

Atelectasis: the collapse of part or (much less commonly) all of the lung.

Last night was one of the hardest we’ve had here. Patrick’s fever reached 104. And he was really struggling to breathe. Anytime he’d lay down, his oxygen saturation dropped. Anytime he sat up, he coughed violently. Finally, at 1 a.m. his nurse put him on oxygen and as long as we slept with the bed up and me helping to support him sitting up as he slept, he was able to rest.

At 5:45 a.m. radiology came to take a chest x-ray. It showed that Patrick’s pleural effusion had about doubled in size. It also showed that both lungs had “atelectasis.” In other words, his lungs were partially collapsed because of pressure.

When the team came around, they said that he needed them to help get the fluid out. If the fluid was from a pneumonia or infection, they could culture it and give the right antibiotics. If not, then they could from there start looking for other explanations for his fevers. The effusion itself can cause fever.

But he’d need sedation and that meant he’d need to have his feeds shut off for 6 hours. And that meant the earliest time would be evening.

Getting him up was rough, but once he was up, he seemed to do better. To help with the lung collapse, we played games that made him take deep breaths. We used birthday blowers to knock down towers of cups. We blew bubbles. We played with whistles. This kept him doing as good as possible, but as the day wore on, he needed more and more oxygen. I just tried to keep him happy sitting up, playing games, coloring.

His new homebound school teacher Mr. Chambers. came this afternoon. Patrick was dead tired and had figured out that sign language was easier than talking. So, this isn’t exactly how I figured Patrick’s first day of school in Omaha would look. But – it was the first step and that’s what matters. We’ll have an IEP written by the end of the week and dive in with 3 one-hour school sessions a week. Mr Chambers is very nice and very compassionate, too.

Also, Home Health came to deliver Patrick’s enteral feeding pump, get signatures, and give us any training we needed. We’ve used this pump before, but it’s been a long time and we weren’t using it all the time before.. So I figured a refresher course was in order. This pump is tiny and lightweight and Patrick will have no trouble at all moving and playing while wearing it in a backpack. It’s purpose is to do a drip feed of formula into his stomach all day long until he is able to eat enough calories on his own.

————

At this point in my blogging, from yesterday got interrupted. It is now Wednesday morning and I’m going to fill you in on the rest of what happened last night.

About 4 p.m. yesterday, we heard from Patrick’s nurse than Interventional Radiology’s schedule was full and they were putting Patrick onto his schedule for 10:30 a.m. today. Thank goodness for our awesome nurse Debb who was worried about Patrick’s continual decline. She made a lot of noise and I think is part of why things are better right now instead of just starting right now.

A little later in the afternoon, the nurse practitioner came to check in on Patrick before going home and tell us the plan to wait till morning. We said, “What if things keep getting worse overnight?” She answered that if there were an acute emergency, they’d take him down sooner. So Brian asked what constituted an acute emergency. The answer: Needing 2-3 liters of oxygen. So we pointed out that he was already on 2 liters of oxygen and desatting when he tried to sleep. She countered, “but at least he’s resting comfortably.” And I said, “No.. he’s so uncomfortable he’s been lying there trying to sleep and is resting because he’s exhausted from the effort.” She left the room rather quickly at that point. Half an hour she came back to say that they were working on setting up the procedure as soon as possible.

That was at 6 p.m. They took him down at 8 p.m. Because things were happening quickly, we got to give the same general history a few times to a few different residents. But eventually, the anesthesiologist came over to explain that, with his lungs already stressed, they thought it safest to intubate him for the procedure.

And then we kissed him goodbye and they said it was a quick procedure and we’d see him soon.

The procedure actually was pretty quick. With general anesthesia, an hour and a half is really fast… and that’s about how long it took for the doctor who performed the procedure to come tell us that things had gone well. They removed about 250 cc’s (or a quarter of a liter) of milky white fluid from the sac around his lung. That doesn’t sound like a ton, until you imagine Patrick’s tiny body carrying around 8 ounces of liquid in his lung. Then it sounds like a lot. They let us see the x-rays last night. His right lung had been entirely collapsed.

She said they’d call us back soon. But then we just waited. And waited. And we finished our show. And I started a blog. And then a chaplain came looking for someone to visit. And it before we knew it an hour had passed.

(A side story about the chaplain. After visiting for a while, she asked if she could pray with us. She said the prayer and closed “In Jesus’ name.” Then after saying “Amen” she blushed and said, “I didn’t think to ask if you were Mormon.” We said that yes, we are. Then she tried to apologize for praying in Jesus’ name. So we had a minute to stop and explain that we do, in fact believe in Christ and pray in His name and that her prayer perfectly fit our method of praying… And then that’s when the doctor came.)

Back to the story – the interventional radiologist came back to tell us that they weren’t having success taking out Patrick’s breathing tube. His lungs were too weak and needed extra time to recover before they’d work properly. He was making significant progress and she was sure he’d be ok before long. But, to be safe and give him time to recover,  she told us they’d keep him intubated till morning.

We were joined by a nurse manager who explained that in the hurry to get Patrick into the ICU, they’d put him into an adult room but that they were moving him to a pediatric room in under an hour and that they’d like us to wait till then to come back. We started to say, “OK. That gives us time to go clean up and move his things,” when we looked up to see one of the techs from the pediatric floor coming with a cart of things from Patrick’s room.

This kind of the last straw.. The idea that they couldn’t even wait for us to have time to get an update from his doctors before they were packing up and moving out his things. While we cleaned up, there was someone from housekeeping waiting because he’d been called to come clean the room and hospital policy requires that they respond within 5 minutes of the page. We don’t mind so much that they tried to help clean up and move the things… as the fact that he wasn’t even settled in the PICU before they had done it.

On our way out the door with the mountain of things that Patrick has accumulated during our stay, the nurse manager from the PICU came to find us to tell us that they had extubated Patrick. Ok, THIS was the straw that broke the camel’s back. Patrick was awake and we were downstairs cleaning his room and unable to go be by his side. She might have said something about “this is just how things go.” And we might have given her an earful about compassion. We are a little less angry this morning. But it’s going to be hard to bring ourselves to try to make Patrick’s next room feel homey again because it caused such a problem when he needed to move.

Anyway – with the fluid off of his lungs Patrick has been doing much better. He his heart rate is down, meaning his pain is going away. He is weaning off of oxygen. He is catching up on his very much needed sleep.  His fevers are gone. His lungs are a little bit crackly, but that will probably get better once he wakes up and starts moving and breathing again.

They are still waiting for lab results about the fluid that was drained. However, right now the working theory is that he had developed a chylothorax. “A chylothorax is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity due to either disruption or obstruction of the thoracic duct.”

I asked the team to teach me this morning what it means. What it means is this… Patrick’s transplant required cutting his lymphatic system. While it heals, it might become “leaky.” When they switched him to Elecare instead of Vivonex formula, they changed the type of fatty acid he was getting. And those fatty acids go through the lymphatic system and if the system is leaking, the fats can get trapped in places like the lungs.

Most transplant kids go through this. Patrick just got it worse than others because they switched his formula over so early.

They’ll go back to Vivonex formula. They will restart feeds slowly. They’ll watch closely to see if the problem comes back. And we’ll go from there.

It means more time in the hospital for him. But, hopefully before long they’ll get him back out of the PICU and onto the pediatric floor.