Short Gut Syndrome – Page 3

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 30 and warranty maintenance

Patrick finally got some good sleep last night. In fact, he was well on his way to sleeping all day. At 10 a.m., he had succeeded in going back to sleep again no matter the interruption. Therefore, I was in my PJ’s with hair uncombed when the team came for rounds.

I hopped out of bed and found them reviewing the imaging from yesterday. And what they saw looked like good news. The images of the gut still looked healthy throughout. The only sign of trouble was right where the stoma came through the abdominal wall. Right before, there was some dilation that showed that there was a narrowing there.

I asked what that meant they could do.. the answer was pretty straightforward. The surgeon, Dr. Mercer, could take him to the OR and open up the stoma a little more. He said he had some time on his schedule and could take care of it today.

Then, he turned around and said, “Don’t be surprised. My OR nurses are very efficient today. They may come for him in 20 minutes.”

So I called Brian who was finishing up laundry and told him to come quick, which he did. I hurried and got dressed. He got Patrick cleaned up and dressed. And then, sure enough, they came to take Patrick to the OR. The nice thing about this plan was that there wasn’t much time to worry. But it certainly scared and frustrated Patrick. It was hard to send him off knowing how worried he was.

The procedure was quick and successful. Dr. Mercer said that as soon as he released the pressure, he felt like the bowel said “Ah! That’s better!” There was a little scar tissue causing a twist and then a little bit of a narrowing in the abdominal wall and he thinks that was all the problem that was there. So now things should work very well, even when Patrick is ready to eat solid foods.

They also did Patrick’s 3rd scope and biopsy while he was asleep and reported that the bowel looks pink and healthy.

Dr. Mercer said no worries about this. Just consider it some warranty maintenance.

According to the post-anesthesia nurse, Patrick woke up and immediately asked if everything was done. Then he went back to sleep. When she called me back, he was awake again and sad. He asked me to lay in the bed. Then he told me he didn’t want to talk. So we just layed there together. I even laid with him as we came back to the room.

Unfortnately, after we got back to the room, he started to feel worse and worse. His oxygen saturation was low so they had to turn his oxygen back on. That isn’t a huge surprise given the condition of his lungs. However, it was a surprise when he started running fevers.

It sounds like his full tummy might have made him aspirate (inhale) some bile as they were intubating. We’ve seen this a couple of times with him and it’s pretty consistent. Some fevers. Maybe some trouble with his lungs called “aspiration pneumonia.”

The good news is that they are already doing all of the possible prescribed treatments. Antibiotics. Chest x-rays. Respiratory therapy. They did an x-ray and it looks good. His lungs sound good. We were able to get him settled down enough to keep some tylenol down and that has brought the fever down a bit, too.

He got feeling good enough to sit up and play with some playdough and he is asleep now. They have even been able to turn down the oxygen some. He’s also been asking to drink water, something he hasn’t wanted for well over a week… that tells me that his tummy has felt too tight for a while now and how that it doesn’t (and his mouth is dry from the oxygen), water sounds good. Thank goodness his belly is to suction right now and he can drink all he wants.

The great news is that his stoma is working great now, too. The funny thing about raising a kid with intestinal problems is that there are so many occasions to be extremely excited about stool.

Transplant Day 29 and some gut rest

Well last night was frustrating. The nursing staff was spread thin because of the holiday and it took a lot longer than usual for them to respond to the non-critical things. From 10-11 p.m. one of Patrick’s antibiotics ended and the pump alarm rang and there was no one to shut it off. I silenced it for a while, but Patrick insisted that it was the nurse’s job and my job was just to cuddle and talk to him. How can you argue with that?

Unfortunately, the nurses were trying not to bother him while he slept, so every time Patrick woke, they’d try to come in and do vitals. Problem is, that mean they were in the room half an hour each of those times and we were awake at midnight and 5 and 5:30. (Not complaining about nursing… just stating trouble with sleep that comes with not doing well.) Then, at 6 Patrick’s nurse came to deliver the news that the resident didn’t want to come drain his gut again “unless he’s really uncomfortable.” Well – 10 minutes later, Patrick woke up crying. He said “bucket” and, before I could react, he threw up all over everything.

Yes – uncomfortable. Apparently, with nothing moving out of his gut and feeds still moving in, Patrick’s gut and belly had finally had enough.

So we got him up and changed the bed and gave him a bath and turned on some Blues Clues. And we waited for the doctors to come for rounds.

Rounds were actually kind of a relief today. They talked about different causes for this new problem and tests that could look for those problems. They aren’t thinking rejection at this point.. perhaps some inflammation or something called an ileus where the gut just temporarily stops moving or a mechanical issue with the muscle wall around Patrick’s stoma or a type of irritation called pneumatosis.

Then, Dr. Mercer came into the room to try out draining Patrick’s belly himself. When he saw how little a catheter needed to go in to immediately drain, he was actually really relieved. He said that ruled out a lot of possible problems. It also eliminated the perceived huge risk of draining. He showed Brian then and there and wrote orders that the nursing staff or parents could do that as often as needed.

They also stopped feeds, restarted TPN, put Patrick’s g-tube to suction so he wouldn’t have to throw up any more, switched as many medication as possible to their IV forms, and ordered some tests. The rest of the morning was very busy. Patrick had an x-ray of his abdomen and then later a CT scan to look specifically for pneumatosis or any other narrowings or problems. I guess we did a good job selling the idea of how fun a CT can be because Patrick had already been asking if he’d get to go in the “donut” again. We got comments from the radiology staff and nurse about how comfortable he was doing something that terrifies most other children.

Patrick and daddy in a wheelchair headed to CT

Later today, they’ll come do an ileoscopy (scope through the stoma) and biopsy again.

Hopefully, one of these tests will show us what is going on. It is possible that Patrick’s belly just needs to rest and reset after all of the trauma of last week.

Regardless, with symptoms alleviated, the rest of yesterday was a good day. Without pain, Patrick was feeling up to sitting up and playing more. (In fact, he was more than a little afraid of his bed after all the scary things that had happened there this past few days, so he was doing all he could to get me to let him be in other places.) This means that his lungs have opened up and he was able to wean off of oxygen. His lungs are still recovering and they are trying to get the fluid all the way out of them and the lungs totally reinflating. His oxygen saturation is a little bit low and he sets off alarms when he sleeps, but he quickly rebounds and no one comes running at this point.

Having family here definitely lifted his spirits, too. He and I were both worn out and frustrated and mad yesterday. It would have been a hard day had just the two of us been trying to be together. But Patrick’s family made him feel like a million bucks. Really, seeing the pride in his eyes when I came back from doing laundry (it was a big laundry day) at having his uncle all to himself was impressive. And seeing him happy and laughing as he played with his cousins was a big treat, too. This little boy needs people and fun.

Brian went with Mark’s family to the zoo in the afternoon and Patrick and I took a much needed nap and some quiet individual play time.. But then they came back and we played in the playroom and went out to a break room to eat dinner.. and then back into the room for another priesthood blessing. (Patrick asked if Mark could help daddy give him one.) Then they gave him some gifts, including a ball that was then used to play monkey in the middle. He laughed and laughed.

When they left, I let him stay up and watch some of his new Dora DVD while we finished up his care and I got ready for bed.

I’m finishing this blog post up in the morning. Patrick has slept soundly all night. X-ray snuck in at 5:30. (Patrick’s nurse is fairly mad they did because she guards to be sure they don’t wake patients who don’t need it.) Patrick was really upset about it, but then tucked up his arms under my side and went back to sleep. A little later they came to draw labs, saw his bed needed cleaned up, and the same happened.

After such a long and hard week, it is so good to see him comfortable and sleeping peacefully. Hoping that goes a long way towards a better day today.

Patrick’s days are busy right now. He starts the day with labs at 5:30 and a chest x-ray at the latest moment that the nurses will allow to get him sleep but still get the results on time for rounds. He has meds at 7 and at 9, and because he doesn’t feel well, that means running zofram for nausea first. He has 2 antibiotics each given 3 times a day with a benadryl pretreatment before. He has respiratory therapy 3 times a day. He has vitals every 6 hours. And diapers. And stoma care. And a bath. And pain management. And getting up to walk. And trying not to go stir crazy.

It’s been 4 weeks since transplant. One thing we know from this journey.. So much can change in a day, or week, or month. We really appreciate all of the ongoing support and love that you offer Patrick, near or far.

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 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.

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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.

Transplant Day 24 and a fever

Well, I hit post last night and crawled in bed with Patrick as promised.. Only to have Brian notice as he moved Patrick to bed that he felt kind of warm to the touch. Patrick was running a fever of about 101. So they called the doctors and they ordered blood cultures (including peripheral ones, which means they had to use a needle which always makes him scared and sad.) Then, they gave him Tylenol and told him he could sleep.

His night wasn’t the greatest. He tossed and turned and felt like he was burning up. But, with Tylenol, he didn’t register another fever. And this morning he wasn’t the happiest, but he was ok.

I talked to the nurse this morning and asked if we could get cultures on the other side of Patrick’s line and also test to see if he had a virus. So they did a respiratory viral panel. (Sidenote, this is abbreviated RVP here, but VRP at home and they keep correcting us here thinking we are making a mistake, when really it’s just a difference in word order.)

The viral panel was negative and it’s been almost 24 hour and the first set of cultures is also negative. His lungs sound clear. Patrick’s done ok all day, though didn’t seem to feel much like himself.

They don’t usually start antibiotics for their transplant kids unless fevers either get really high or last a long time or they can’t find a cause.

Finally, this evening, we let his Tylenol wear off again. Patrick kind of curled up in a ball and started to breathe heavily. Sure enough, the fever was back at 101.

This is proving to be a tricky balance. We don’t really want to give him narcotic pain medicines anymore. But the alternative is Tylenol, which hides a fever. We don’t know if he’s really had this problem lurking but hidden for a while. And the team keeps saying that Patrick only ran a fever once in the previous day, when really it’s just that Patrick could only handle the pain of his tylenol wearing off enough to show a fever once in the past day.

Because Patrick hasn’t been feeling well, we have had a pretty quiet Sunday. I had to go do some laundry at the Ronald McDonald House this morning. While I was there, I did a little bit of rearranging and organizing to get the room ready for Patrick to come there. It’s small and organization is going to matter.

Then Brian called and said the elders were on their way with the sacrament, so I hurried back.

Usually, I would have done some homeschool-style Sunday School today.. But none of us really felt like doing much of anything.. So maybe we’ll wait till later in the week.

So, we are just waiting and watching and praying that if something needs to be discovered and treated, that it will be. Otherwise, we just keep planning for the best case scenario that Patrick might be ready to move out of the hospital one of these days. After all, it’s a holiday week and if we follow Patrick’s rules for holidays, something big has gotta happen.

Transplant Day 21 and baby steps

Today was a relatively quiet day. In fact, by the end of it, I think we all were feeling more than a little stir crazy from being in the same room together doing the same things day in and day out. But quiet is good.

Patrick definitely had a better day. Between the slight reduction in feeds and me finding a way to be super sneaky and unsmelly in emptying his ostomy bag, he didn’t spend the day feeling sick. That left him free to try other things.

Like walking, for example. The physical therapist came by and encouraged us to let go of his hand and try walking. He was a touch unsteady and there certainly moments where he moved the wrong way and it hurt. But he did it. And it gave me the idea for a game that kept him motivated to walk several more times. Because Patrick loves Blues Clues, I drew some pawprints on slips of paper and I hid them in strategic places that he would have to bed or reach a little to get. Then we’d go play Blues Clues and find the pawprints. He actually was really upset when I wouldn’t play anymore tonight.

And speaking of pawprints, we decided to go check out pet therapy today. They have several specially trained dogs that visit the hospital. Very sweet and obedient. Patrick was more fearful of them than I expected.. perhaps because he’s still sore and was afraid they might jump on him. But it gave us someplace to go to today, at least.

The other big news is that Patrick’s biopsy results came back. Amazingly, today’s rejection score was a 0. No rejection at this point.

That leaves us with a few goals to work on. 1) Get Patrick’s feeds back up that 5 cc’s more to 95 without making him sick. 2) Switch him over from IV replacement fluid to replacing lost fluids through his g-tube. As long as he has an ostomy (which will be over a year), he’ll need a little bit of extra hydration. 3) Get a plan of how to pay for Patrick’s Valcyte. It turns out that they missed checking a box on the patient assistance application and are now having to reprocess it.

I’m spending tonight at the Ronald McDonald House. It is strange to be here. It is strange to know they are there. I also have gotten quite used to going to bed with Patrick so staying up late to finish the laundry has me quite tired. And that is making me appreciate my husband because he has been doing this for us every few nights for the past several weeks.

I also appreciate the flexibility of the people he works for and with. I have been trying to find a way to give him more time to catch up on work. And in the end, he just keeps setting aside what he’s doing to come in and save me.. to make sure Patrick is up and walking, to make sure I get a chance to eat and shower and change my clothes, to snuggle with Patrick so he can nap.

Before long, we are going to have to let him go.. and I can tell you I am going to miss having him here. Patrick will too. Which is part of why, despite Patrick’s protests about my leaving, I am here and they are there tonight. At least, in my mind it is.

Transplant Day 14 and Daddy’s back

I think our biggest news of the day is that Brian got back from his short trip. Patrick and I were so glad to see him that I’m afraid we didn’t let him do anything else.. Just play with or cuddle Patrick. Patrick was so happy to see him.

Otherwise, just continued forward progress on the same milestones. Increased feeds. Walked a little farther with a little less support. Sat up a lot more with a lot less pain. Decreased pain medicines.

I shopped for home health companies today. I guess it’s kind of uncommon for the patient to call up and say “I want to make sure you can get me the following supplies.” Usually, setting up home healthcare is something the hospital just takes care of for you. But I wanted to be sure that we would have access to all the things that make Patrick’s life better. I think we found a good fit. Just one more tiny step towards our next goal.

Tonight was movie night in the hospital. The literally put out a red carpet. Then, they set up a conference room to look like a movie theater, complete with boxed candies, popcorn, pretzels and pop. Patrick has only been to a movie in a theater once. I wasn’t sure how this would go.. But thankfully the movie was Planes Fire & Rescue, which had that “I love cars” appeal. He did a lot better than I expected. Guess he’s 1)growing up and 2) not feeling great so screen time has a greater appeal.

I was talking with another family yesterday. We decided that adults could learn a lot from the way that kids do illness. I mean, imagine if you had to go to the hospital. Would you prefer to just sit in your drab hospital room reading? Or would you prefer to have a room all decorated in bright fun things, to have someone bring you your favorite hobbies every day, and to have a low-key party once a day? Wouldn’t you find getting better easier that way? Kids know what they’re doing. We grown-ups are the ones getting it wrong.

Another milestone: Patrick willingly went to sleep in his bed while I laid in the parent bed across the room. He is feeling more at home here.

2 weeks ago tonight our transplant team was looking at a transplant offer deciding if it was time to call and wake us up and tell us to come. Patrick is doing so well for just 2 weeks in.

Transplant day 11 and a tired tummy

IMG_20141110_184332 Still moving forward today. G-tube feeds went well overnight and so they doubled the rate to 10 cc/hour this morning. So far, so good.

The physical therapist came by and she was very pleased by how well Patrick is doing. In fact, most of our talk was a reminder to me of how important it is to watch and slow Patrick down for a little while so he doesn’t accidentally open his incision.

He’s slowed himself down a fair amount anyway, though. He kind of overdid yesterday and his sides are hurting today. So we did a lot more resting and gave more pain medicine. He did still walk to the playroom and sit at his desk. He also napped a lot and rested in his wagon.

We asked the woman from child life for help finding a volunteer to get me back to our room for a shower, change of clothes, and a filling meal. Well, the first volunteer showed up at 1. I was actually a bit upset because it was earlier than I expected.. but I went and it was good to get clean and to rest. And it was good that Brian got to spend a little bit of time working and taking care of other things today, too.

Meanwhile, the sweet grandma-like lady who shuffled me out for a break watched Patrick while he napped, put on movies for him, and then took him to music therapy.

Patrick came back from music therapy grinning from ear to ear, laughing and talking about the drums and “ma-ca-cas.” He had a great time.

However, then new volunteers just kept coming. We sent the ones who came at 3 away. But at 5, we let them stay and went to the store for a few needed things and then out to dinner. And now i know that I need to be careful what I ask for in a hospital where spending time with the cute 6 year old is the appealing task on the job list. Actually, I think I’m going to come to really rely on those volunteers to help me take care of myself. The combination of tired, head-achy and hungry had me quite unhappy this afternoon. It is so nice that there are people willing to come in and help me with Patrick so I can take care of me, too.

One clarification that I was asked. I have been saying they “clamped Patrick’s stomach”… what I really meant was that they closed the clamp on the drain from Patrick’s stomach. No actual clamps on bellies.

Transplant Day 10 and the Sabbath Day

Overall, today was another peaceful day. I’ll admit that I think Brian and I are beginning to feel a bit slothful. But I think we are on the road to that changing (in a good way) soon.

Today’s milestones:
1) We asked the doctors if it was time to remove the IV in Patrick’s neck. The answer was an emphatic, “yes!” We didn’t find a good time till evening, but Patrick is much more comfortable.

2) After tolerating clamping and tastes of food yesterday, they started feeding formula into Patrick’s stomach through his g-tube. The rate is only 5 mL/hour. However, that is the most we had ever succeeded in feeding Patrick before and it’s the starting point now. It’s only been running for an hour, so we’ll see how it goes. But so far, so good.

3) This morning when Brian asked Patrick if he wanted to get up to walk, it made him cry. However, at 10, after some pain meds, he got up and walked to t

he scale to be weighed. We pointed out the playroom two doors down the hall and offered to bring a chair he could stop to rest in on the way to look inside. Not only did he make it there, but he decided to stay to play. 2 hours later he was looking tired so I coaxed him back to the room.

Patrick got into the playroom, sat down in his chair and asked what he could play with.

He loves playing house, so the kitchen, complete with baby, kept him busy for an hour.

4) Given the success in the playroom and his love of crafts, I cleared off and set up a craft table in his room. He’s been there drawing for an hour and a half.

Breathing treatment while sitting at his craft table.

5) Dad and I changed Patrick’s ostomy bag without help. The nurses were busy helping another kid having a much worse day when we discovered the leak. So we just dived in. It’s kind of like riding a bike. You don’t forget. Just have to learn how to work with new supplies and anatomy.

6) We got to take the sacrament. This is so important, to have a time each week to remember Christ and renew out commitment to Him. In turn, He promises that His Spirit will be with us, something we especially need right now.

Last week, things were too crazy and we didn’t get in touch with the local congregation on time. But this week, they knew about us. Two men from the ward came for a visit and to administer the sacrament. One of them was the anesthesia resident on Patrick’s case the night of his transplant. Patrick was delighted to see him again.

We also had a visit from the Relief Society (women’s organization) and Primary (children’s sunday school) presidents. They scheduled in advance, but I fell asleep helping Patrick nap and they ended up visiting with Brian alone. That was kind of a bummer. I looked forward to meeting them. I hope they come back. But they did bring a sweet little card with the primary kid’s fingerprints and names and some curriculum materials.

This will help, too. I really need to get my game together and plan some home-sunday-school for us. Patrick’s not going to be allowed to go to church for a long time and that teaching is too important to miss.. For all of us.

Anyway – Sundays slow down even in the hospital, so I thought I’d blog early. We could use the rest. Mondays are not quiet. Therapists, social workers and a whole slew of other people will be back to work tomorrow.