scary moments – Page 2 – Patrick Hoopes

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 25 and a Bad Day

Well again, I posted last night and then went to be with Patrick and things got worse. I’m kind of afraid to hit post early tonight.. But try hard not to believe in medical jinxes.

Yesterday evening, Patrick’s fevers started to show up even with Tylenol in his system. He also started to have coughs that he couldn’t suppress. He was so miserable, he just curled up on my lap and didn’t want to move. His nurse called the resident and more cultures were ordered as well as a chest x-ray. They also started antibiotics and an antifungal. Daddy gave him a priesthood blessing, too.

And then, we just tried to let him sleep. Sometime between 3 and 5, his fever broke. By morning, he was feeling better.. but certainly was not back to himself. His cough is still bad. He’s breathing heavy. And every time the tylenol wears off, his fever comes back.

I was frustrated during the night because I just kept hearing that everything was coming back negative. However, today when the doctors rounded, they said that they’d seen a pleural effusion in the x-ray. That means that there is fluid around the outside of his lungs. That is why it is hard to breathe.

Rounds were kind of refreshing. It’s nice that our input is both welcome and helpful. I told them about what had happened overnight, Patrick’s typical infection history and medication allergies, and my own thoughts and worries.

The current working theory is that he has some kind of respiratory bug, maybe a pneumonia. But his lungs sound good and he’s on the right IV antibiotics to help. So today’s orders were wait and watch. If things get worse, they’ll do a CT scan. Welcome to the world of immune suppression.

He napped all day and woke up with lower temps but more trouble breathing. He’s spent the day in bed watching Blues Clues. Good thing kids like watching the same DVD’s 1000 times. These TV’s are too old for our chromecast to work so we are limited to just what we own physically. We have enough for about a day’s worth of Blues Clues viewing and Patrick doesn’t mind rewatching the same thing over and over again.

I have tried to keep other things moving forward. Got him officially enrolled in school. His teacher should come tomorrow if Patrick is still doing ok. Got word that the insurance company has responded to the appeal and decided to cover the Valcyte after all. Ordered some more ostomy bag samples. Convinced the team that they still want to do our discharge training early this week in case Patrick gets better over the holiday weekend.

Alas, the evening has been hard again. His fevers have reached 104 when his tylenol wears off. His heart rate is high. His oxygenation is low, but holding. And he’s having a hard time keeping his medications down.

Darn holidays. We need a better kind of holiday tradition.

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.

Summer vacation

Tomorrow marks 3 weeks since Patrick’s last day of school. For most people, summer vacation is in full swing. For us, we’re finally starting to get our bearings. It’s been an unusual start to summer.

Things seemed smooth enough. I spent that first weekend after school ended gathering myself to start a tradition Patrick and I are calling “Mommy School.” Between therapies, Patrick has a LOT of “homework”. He’s supposed to spend 10 minutes every day doing eye exercises. He’s supposed to be practicing writing and cutting and and gluing and using a keyboard. We’re supposed to be strengthening his core, working on activities that use both sides of his body evenly, and encouraging him to cross midline. He’s supposed to be practicing telling me stories in various verb tenses, using articles, and correcting his use of pronouns. Plus working on vocabulary building, sorting skills, categorization skills, social skills, attention skills and on and on. All of this to help keep him progressing on his current trajectory which, discouraging as I may find it, is approximately two years behind most of his peers.

Except, it seems, when it comes to the alphabet. Patrick has the alphabet down pat and tested in the top 25% of his preschool class.

Our first day of Mommy School. Learning the shapes of letters by building them from playdough.

A practical life mommy school lesson on how to sweep.

And so, this summer we introduced “Mommy School.” We’re doing an abbreviated letter of the day curriculum, since letters are what Patrick loves. Every week is assigned two letters and every day a word that starts with that letter. Then I go out and scrounge up books, worksheets, crafts, activities and field trips on that theme.

Teddy Bears — B is for Bears, and a teddy bear picnic.

The first day of Mommy School went GREAT! Until, that is, Patrick developed a fever. The next day of summer break was spent cuddling a sick, feverish kid in a chair. He had a cold and we were grateful to be able to stay home sick like other children. By Thursday, Patrick had mustered the energy to play on his own again. But, by then, I was sick.

Patrick sees 3 therapists on a regular basis in the summer. It's hard work, but fun too. Patrick's reward for a good hour of work in physical therapy is the chance to climb the rock wall. — Patrick sees 3 therapists on a regular basis in the summer. It’s hard work, but fun too. Patrick’s reward for a good hour of work in physical therapy is the chance to climb the rock wall.

In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.

Our second week of summer break, Patrick and I were finally starting to be healthy again. But Brian wasn’t. And it didn’t matter if we were healthy or not because on Saturday of that week, my little sister was getting married in my backyard. So, I declared “C is for Camping” and we pitched a tent in the living room. Amazingly, this both occupied Patrick and kept the room clean while he binged on movies and we scrambled to finish last minute details on the house and yard.

I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.

We also sneaked in a couple of outings.. a family night at Red Butte Garden and a field trip with friends to the Natural History Museum. (I picked up a free month-long museum pass at the local library just so we wouldn’t have excuses to just stay home and work.) Besides, in order to get Patrick to let us work, we let him watch his birthday movies on endless loop, which left us all craving some family adventures.

Patrick loved the children's garden best, especially hopping on stepping stones across the fish pond. — Patrick loved the children’s garden best, especially hopping on stepping stones across the fish pond.

The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.

The wedding went smoother than expected, though playing hostess and trying to keep Patrick from completely melting down about how his house was filled with children who were not sharing his toys with him kept me busy enough that I didn’t manage to take a single picture.

I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom's Facebook page. — I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom’s Facebook page.

My sister was a beautiful bride and the happy couple truly looked happy and in love. Patrick eventually settled down with Grandma who let him fetch endless cups of water from the refreshment table and pour them all over himself and her and all went well enough.

Except that it turns out that maybe the bug that had Brian sick isn’t the one that had Patrick sick as I ran a fever all night.

So, Sunday we took a sick day and we stayed and home and did absolutely nothing except that Brian cooked us a delicious roast. The day was delightful and refreshing. Perfect after two frantic weeks.

Yesterday, I put together a week’s worth of Mommy School worksheets, made a chore chart, got Patrick’s TPN labs drawn and kind of regrouped. Then, in the late afternoon, I changed Patrick’s central line dressing and discovered that, much to my dismay, what had once been a tiny little hole in the clotted side of the line had grown big enough that I was worried it would pull off. But it was after hours and I wanted the head of the IV team to be involved in choices about the repair.

So today, we spent our kind of restart to summer day exactly as summer days seem to go for us.

Over breakfast, I made a bunch of phone calls to people at the hospital trying to find the best way to get the line repaired. Eventually, I sat down and had a little cry because I wasn’t getting in touch with the people I wanted and I knew we’d have to go to the E.R.

Then, Howie gave me a pep talk and a hug and a kiss. Then he talked to Patrick and helped him to gather the courage to get his line repaired. (He was terrified that it was going to hurt when they cut the broken part off of his line.) We headed up to the E.R. where our timing really was perfect. We didn’t wait at all for them to start working. Patrick’s line is a different brand than our hospital stocks because it was placed in Nebraska, so that complicated things and the repair took about an hour and looks a bit sloppy. But it will do for a clotted line.

And then, when all was done, we headed off to the Children’s Museum for a couple of hours. We managed to get there at a nice slow time on a nice slow day. Patrick actually got to enjoy exploring the museum and would have happily stayed there all day. His favorite spots were the Bob the Builder exhibit, the gas station, and the pretend E.R.

I didn't know they'd built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time — I didn’t know they’d built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time

Eventually, we had to go because I was parked in a 2 hour parking space and, honestly, we both needed a rest. So we stopped in at daddy’s office to pick up the leftovers from a lunch he’d cooked for them today. And then we came home and convinced Patrick to nap by 4.

Which brings us to right now. Brian just walked in the door to a quiet, clean house and me blogging and said, “Now that’s a sight I don’t see very often.” Here’s to maybe a little bit more of this? Perhaps a few prayers for this line to hold out through the summer and grant us a little bit of peace ..and maybe even health?

Getting a line in and back on the transplant list

Sorry to have kept you waiting for updates. As you’ll see from this post, it’s been a crazy few days.

First of all, if you haven’t heard word any other way, the doctors in Nebraska were able to get a new central line into the Superior Vena Cava and Patrick is back on the transplant list. I mean to post updates but didn’t expect them to order bed rest and minimal activity for the next days after the procedure and, well, accomplishing that is kind of a full time job where Patrick is concerned.

We checked in to pre-op at 5:30 a.m. which is 4:30 a.m. Mountain Time and we were all incredibly sleepy. Pre-op was the usual flurry of activity as we met anesthesiologists and got fluids ordered and labs drawn. (They had an amazing phlebotemist who managed to draw blood without Patrick even crying and on her first attempt.) We met the OR nurse whom Patrick loved so much he said she was “Kinda Jo”, in other words, put him at ease like his favorite child life specialist. He collected teddy bears and various and sundry medical equipment to use on the bears and charmed everyone in sight.

Then we got the meet the doctor and go over the plan.

The procedure it took to get us there absolutely terrifies me. I order to get around the blockages, they put a guidewire in through Patrick’s femoral vein and ran it up to his heart where they repositioned the veins in order to reach the right ones and get around the clotting and scarring. At least, that’s what I understood. He followed along with x-ray and ultrasound the entire way to make sure things went where they should.

What I really gathered from the description of the procedure is that it was insanely dangerous. As the interventional radiologist was going over the risks with us, I just kind of had to shut off the part of my brain that could process what those risks might mean and remind myself that without it, he had no long-term chance of survival. Instead, I honed in on the fact that he sounded confident in what he was doing and that, well, it just felt right. I couldn’t help but think that THIS was the reason we’d been impressed to transfer Patrick’s care to the University of Nebraska. Because they had doctors who had developed this technique to save access and save lives.

Knowing how difficult Patrick’s access can be, we all kind of hunkered down expecting them to need hours. So, when we looked up at the status board after just a couple of hours and see that they were closing. Then, sure enough, there was the doctor telling us that everything had gone well and that he had a new line in place.

As we understand it, this is a rare direct superior vena cava line, entering the vein directly after going through soft tissue. (Patrick’s GI is questioning this, so I’m getting a copy of the procedure notes so I can go back over what was done and we can understand it.)

He went ahead and put in another double lumen line for us. Because they stock a different brand, the line they had was rather large, a 9 french, but that could kind of be a good thing. Should be less prone to clotting problems.

He also us that this line is to, under no circumstances, be taken out without his approval. If Patrick gets and infection, if the line breaks, if it clots, whatever… the team at the University of Nebraska needs to get involved. Maybe they will teach the team here how to keep the site open. Or, maybe they will fly us back out again. Whatever happens, they do not want to have to attempt to repeat this procedure. We were told that, next to transplant, this is one of the riskier and more specialized things that they do at their hospital.

Whew!

And by the end of the day, Patrick was back active on the transplant list.

The rest of the day was kind of crazy. Because of the risks of bleeding from that femoral access, Patrick was ordered to 3 hours of total bed rest with that leg completely immobilized. Knowing our child, we quickly agreed to request sedation for that.

At first, the sedation made things a little easier as we scrambled to attached fluids to the new line to keep it open. We also called to ask that his old line be removed while he was sedated (they’d left it in thinking it was still needed, but decided we didn’t need that to be done at home.)… and then scrambling to round up information about the new, different brand of line and repair kits, etc.

Patrick started to wake up just a little and was, well, cuddly. That’s normal for him, but normally I’m also allowed to hold him. This time, he had to stay in bed. So he settled for holding onto my head. For half an hour, he held my head as tightly as he possibly could. (Meanwhile, the doctor came back to pull the old line.)

Patrick making his teddy bear play tablet while on forced, sedated bed rest

About an hour in, the nurse decided to stop giving him sedation and just let what was in his system and me distract him. So, we played games on the tablet and we checked the blood pressure of the teddy bear and tried out a Nintendo DS. Meanwhile, Brian went back to the Ronald McDonald House to bring back TPN and to try to meet our delivery of medical supplies.

2 hours in, the doctor said that Patrick could sit up in bed and make sure his leg was ok with the extra movement. The post-anesthesia nurse was kind of tired of him tying up the space in PACU I think (they could only keep giving him sedation there) and so she discharged us to their extended care unit.

The extended care nurse acted as though she hadn’t received report from the PACU nurse, though. When we got there, she tried to insist that Patrick needed to stay lying still in bed for another hour because that’s what the orders in the computer said. And so, well, yes, I went a little angry mama bear on her and told her that I would not have agreed to come to her unit had those been the instructions.

And then we spent the next half an hour trying to keep Patrick still sitting up in bed, doing crafts, sipping water, and not chewing on or removing the COMPLETELY inappropriate non-pediatric pulse oximeter on his finger.

And then, I don’t know who talked to her, but the nurse came back in and cheerfully told us we could get Patrick dressed and he could be discharged. Like the nurse who I’d gone crazy on didn’t even exist.

Anyway, we were grateful for the dismissal as we had managed to squeeze in an appointment with one of the transplant surgeons at 1 p.m. and 1 p.m. is when Patrick was supposed to be cleared after 3 hours’ bed rest.

So, we hurried over to the Intestinal Rehab Clinic and checked in for our visit and a little while later, Dr. Langnas joined us. We explained to him our concerns about whether or not waiting for a combined liver/intestine transplant might be increasing Patrick’s wait time. He listened to our concerns and then explained the benefits that he sees for Patrick in the liver listing. Then he promised us a future date where, if Patrick has not received a transplant, he will take our concerns back to the transplant review board for reconsideration.

The rest of the day we spent trying to help keep Patrick down. We went back to the Ronald McDonald house again for a little back and let Patrick play in the playroom. Then, in the interest of some forced holding still, took a drive instead. Patrick heard us mention the temple as a possible destination and voted for that. So, with our bruised and bandaged and druggy little boy, we went and visited the Mormon Trail Center and Winter Quarters Temple grounds. Then came back on time for a yummy lasagna dinner courtesy some generous Ronny House graduates, then went to bed early and exhausted.

Playing pioneer at the Mormon Trail Center

After tucking Patrick into bed, it hit me just how serious what he’d been through that day and week really was. Another case of him surviving against the odds, an unquestionable miracle. And a VERY close call. I shed a few tears of fear and relief that night, said a prayer of gratitude, and went to bed.

Mission Impossible

I probably have this idea in my head because we watched a Mission Impossible movie a couple of nights ago. But I swear that today, as I ran from one major problem to another and felt myself being powered by pure adrenaline, that my life is no less demanding than a Mission Impossible mission. Maybe a little more dull and much more sedentary.

Here’s why today had me thinking that. I stayed up till a little after 11 last night finishing off Patrick’s care notebooks, a 30 page medical history and emergency plan for Patrick’s school staff. I was woken 4 times during the night, twice by IV pumps alarming. Twice by Patrick’s mylar balloon drifting into the ceiling fan in the kitchen.

At 7:30, Patrick woke up and I tried really hard to explain that we had a busy morning and needed to get ready quickly. After a summer of lazy, he did his best but we were definitely out of practice.

We finally made it downstairs and I scrambled to put finishing touches on school supplies. That doesn’t mean pencils and papers for Patrick. It means putting together a medical supply emergency kits, diaper changing kits (with instructive labels on each bottle of cream), care notebooks, first aid response cards (miniature and laminated to fit in Patrick’s backpack), and allergy safe labels on boxes and bags of snacks.

Patrick’s school open house started at 9:30 and we got there a little after 10. I felt really bad for coming so late.

BUT we had a chance to meet some other parents and kids and explore the classroom a bit. As we were nearing the end of the open house, I had a chance to meet the speech therapist and special education teacher who’ll be working with Patrick this year. I kind of tried to make a mad scramble in my tired brain to remember the relevant information I wanted to discuss with them about his goals. I think we covered the main points and I was impressed that they seemed to be on the same page as me. Then I went over with the teacher and classroom aides a refresher course on his medical care and diaper care and what ADHD and sensory processing disorder mean for him. And, of course, how and who to reach in an emergency.

I left the classroom half an hour after the open house was due to end. We walked Patrick’s medical supplies down to the school nurses’ office, along with a copy of the emergency plan, and briefly went over their questions.

Then I pulled out my phone and noticed that I had missed phone calls. Lots and lots of phone calls.

On the drive to the school, I’d called Patrick’s dietitian to tell her that we can’t get blood to draw off of his new line right now and ask if she really needed any labwork done today. (A nurse visit popped up in the schedule yesterday.)

That call prompted her to call Patrick’s GI, Dr. Jackson, who’d spent the morning bringing himself up to speed on Patrick’s new line and being put on hold for transplant. And he was quite concerned.

Oh, and I’d missed the call back from the transplant nurse in Nebraska.

So, when I got in the car, I called back Dr. Jackson. He apparently spent the morning going over operative notes and talking to the radiologists and other surgeons. And he’d learned something about Patrick’s new line that was alarming.

We had misunderstood what we’d been told about the placement of the line. The azygus vein is not a central vein. That means, it doesn’t directly connect to the heart. The tip of the new line is in a dilated part of that vein. But, after the tip there are some collateral (spiderlike veins that grow around a clot to reroute bloodflow like the little streams that form around the sides of a river if it is partially blocked.) And it is those that are connecting to the main veins and to the heart.

And since those veins are small and could infiltrate just like a peripheral IV vein, (or swell and close off that access, too) Dr. Jackson wanted Patrick off of his TPN ASAP.

Because of Patrick’s low lipid protocol, there is a lot of sugar in his TPN. It’s a very high osmolarity formula that kind of rips up small veins. So tonight we got a shipment of a lower osmolarity, lower sugar formula to run until we get a resolution.

Dr. Jackson also contacted the nurses and doctors in Nebraska on our behalf.

Anyway, I spent the drive home talking to him, then brought Brian up to speed, grabbed a quick lunch then called back the Nebraska Medical Center. They asked me to fedex them a CD of all of the imaging done of Patrick’s vein in the recent past and e-mail them all the radiology reports I had.

By then, Patrick was pretty tired and pretty tired of me on the phone, so I tried to rock him to sleep for his nap. But the phone rang. A homecare nurse seeing if I needed my TPN pump reprogrammed. Then it rang again. The homecare pharmacist setting up a shipment of the new formula fluid.

By this point, I texted my sister. I could tell I was in over my head and needed more time than I had.

She drove over while I got Patrick down for a nap, then stayed with him while he slept. Meanwhile, I scanned all my radiology reports. Then I drove to the hospital to pick up the CD of radiology images that Dr. Jackson had requested on my behalf, stop in medical records for accompanying reports, and then down to the pharmacy for a prescription for ranitidine to replace the IV form Patrick usually gets in his TPN. Of course, on the drive up talking to the homecare pharmacy to order tubing and other supplies to go with the IV fluid. And, in the waiting room, e-mailing the nurse in Nebraska to decide that they wanted their own venogram done anyway and that they could schedule Patrick’s procedure without me sending a CD after all.

By now it was 3 p.m. and I was feeling a bit like my mind was doing stunts Tom Cruise could only dream of. I was exhausted with trying to change gears and think of entirely new life-critical details. Fortunately, 3 p.m. is 4 p.m. in Nebraska and close of business for the intestinal transplant office.

So, when I got home, I just had to make dinner and clean up a little bit until evening.

Dr. Jackson called this evening and we had a good conversation about where Patrick is and where things are going. The best phrase of the conversation was when he told me that he thought that the doctors in Nebraska are just smart and daring enough to be able to “Macgyver something” to keep Patrick listed if possible.

But we also had a good talk about where else central lines can go and how to reduce and treat clotting in veins and genetic predispositions and a whole bunch of other crazy things, kind of like Dr. Jackson and I like to do. Is it strange that he and I kind of enjoy talking over medical problems together?

The encouraging thing to me is that, although he called our situation “sobering”, I could hear in his voice that he has a lot of hope still.

And that he’s pushing to get things done, and quickly. I think he said he’d e-mailed the surgeon twice and had sent a copy of all of the radiology reports that he was able to send by e-mail to his nurse.

This evening, we received the delivery of new fluid and got it started. (The sad thing about this change is that, with fewer calories, Patrick can’t afford a tubes-free time every day. The good thing is, the bags are split into two per day so they weigh less and he’ll be able to wear his pack.).. After connecting his fluids for the night, we picked out clothes for school, put on PJ’s, and tucked Patrick into bed.

I’m hoping for a little more calm tomorrow. I’m happy Patrick doesn’t miss the first day back at preschool. And that, amazingly, we pulled that all together in the midst of all of the rest of this madness.

And maybe I can get phone calls done while he’s at school. Maybe even a plan for how to get out to Omaha. Maybe.

Or maybe, if they’re not ready for me yet, I’ll just go sit on the lawn at the park next door and read a book and delight in the knowledge that at 10:15 every Monday-Thursday, Patrick gets to go visit the sensory room. And all his favorite aides from his old class get to come into his new class for morning circle time. And some of his familiar friends are still there.

I think I had enough adrenaline for one day today. Heck, I’ve had enough this month to get me by for a year.

Looks like we need another miracle after all

Patrick insisted I take this picture of him eating an applesauce cookie. So good to see him with an appetite again.

I truly feel like getting Patrick a line through his interior jugular vein into his azygus vein was a miracle. An absolute answer to prayer.

So I was more than a little confused with the phone call I received from Patrick’s transplant nurse coordinator yesterday. In the morning when we talked, she was quite pleased with the ingenuity of Patrick’s line placement and thrilled to hear he was doing well. We discussed infection prevention strategies and his position on the transplant list.

Then she called me back in the afternoon. She’d updated one of the transplant surgeons. And, as it turns out, in order to perform an intestinal transplant surgery, you have to have a central line in the superior vena cava. It can’t be in the azygus vein. The logistics don’t work.

They asked us to fly Patrick there next week to let their specialists see if they can solve the problem. Until it is resolved, Patrick has been put on hold on the transplant list.

At this point, other than knowing that the insurance company has approved the trip, that is all we know. We have about three dozen questions that we don’t know the answers to.

Despite the news, Patrick is doing great. Infection free and bacterial overgrowth at a minimum, he is feeling great. He ate at all three meals and had several snacks today, too. I swear he was eating once an hour. He’s napping well. He’s playing happily. He is very confused about why mommy is in a bad mood.

Mommy is doing her best not to be overcome by her tendency towards catastrophic thinking.

At least I have plenty of distractions. Hospital stay followed by a week of travel followed by another hospital stay is not the way to stay on top of your housework. And I’m nowhere near ready for Patrick to go back to school, even, or perhaps especially, if we might miss the first day next week.

We are hoping to get some answers soon.

Thank you for your prayers. I know they’re helping. If you don’t mind, we could really still use them for a little while.

The line placement was a success

We are home and in our own beds after a very VERY crazy day. Before you have to read too far, I’ll tell you that the surgeon was able to get a central line into the same vein.

Now back to the day…Patrick wanted out of the room after being cooped up yesterday, but we were a little too late in our attempt and the nurse needed us to hang around to make sure medications were given on time this morning. He spent the entire 2 hours the medications were running doing some running himself around the room, despite my protests that he was pulling his line with the very short tubes.

When he finally got to leave the room, he took off literally running… fast enough that I had to run to keep up with the IV pole.

We got to the playroom and he starting flitting from thing to thing.. And then I realized that the damp spot I’d seen on his chest was more than just damp… it was dripping wet. So I looked and, sure enough, the good lumen on the central line had broken.

So, we turned and headed back to the room, picking up Patrick’s favorite child life specialist on the way back. You should have seen the nurse’s face when I walked onto the pod and said, “His central line is broken. Please call the team and the IV team right away.”

We cleaned him up, talked to the doctors, and wrapped up the line to keep it clean. Then Jo from child life helped Patrick place an IV into Tubes’ (Patrick’s medical me doll) hand. As we finished, IV team arrived and we went and got a real IV for Patrick. Explaining the procedure actually seemed to help a little bit with his fear.

Then the GI team came for rounds, got brought up to speed, and redressed the broken line to keep it sterile. We opted not to repair it as it was due to be replaced anyway. Then surgery came by and had me sign a consent.

By then, Patrick HAD to move. So we took advantage of the short break from tubes that having to wait for a bag of fluid that was safe to run through a peripheral IV (TPN has too much sugar and other goodies in it that wreak havoc on veins.). We hopped on his physical therapy bike and started doing rounds of the hospital. My goodness is that boy fast! And even with only one good hand to steer with, he was flying through the halls.

Did I mention that Patrick’s OT said that she was going to recommend that Patrick always get to borrow a bike when he’s inpatient to burn off energy and help him calm down?

Amazingly, riding the bike wore Patrick out. He was so tired he didn’t want to pedal anymore. We came back to the room, rubbed his lavender calming cream on his feet, and he fell right to sleep.

While he was napping, my cell phone rang. It was Dr. Jackson (Patrick’s GI) calling to say that he and Dr. Rollins (the surgeon) had looked at the radiology and decided it was too risky to change out Patrick’s central line. And as I started to explain that that ship had sailed, Dr. Rollins arrived in the room.

He’d just been brought up to speed and knew that the line needed changed. But he told me that he honestly didn’t know where a new line could go. We talked about how much of Patrick’s access had been lost and how he wasn’t sure he could get a catheter to pass over a wire to change the line out over a wire. Then we talked about those scary other places central lines can go like in the groin or liver. It was the first time those options seemed real and I was quite scared when he left.

Thankfully, Patrick napped a little and Brian came up and we grabbed some lunch and talked and I didn’t spend too much time alone with those thoughts.

And then Patrick woke up from his nap and Jo from child life came back with a box of things to teach Patrick about surgery. And surgical transport came to get Patrick, then got called away on an emergency, and came back an hour and a half later.

Patrick finally made it to the OR around 3:30 p.m. The surgeon was cautious, but hoped it wouldn’t take more than 3 hours. We went and set up shop in the waiting room.

And because I didn’t expect a fast outcome, we were surprised to see him back after a little over 2 hours instead

We were amazed when he told us that he’d been able to change out the line over a wire. We were even more amazed when he told us that there was so much scar tissue in the superior vena cava (the vein that enters the heart where lines are usually placed) that the wire wouldn’t go through it. And surprised yet again when he explained that somehow his wire had landed instead in another major vein called the azygos vein. He said that sometimes they do put lines in that vein, but usually have to go in surgically through the chest.

I can’t help to think that that represents a bit of a miracle.

And when we got back to the room we flushed the line. I almost wanted to cry at how smoothly it flushed. I knew Patrick’s line was bad, but feeling the contrast makes me amazed that it lasted for 15+ months.

And then, because they offered and because we were tired and homesick, we accepted a quick discharge.

We will still need to go back in a couple of weeks for a venogram to see exactly where Patrick’s veins run now. There’s this amazing process called collateralization where the body, when it starts to have thrombosis or scarring in a vein, starts to make new blood vessels instead that connect to the heart in all kinds of crazy ways. A venogram will show us exactly how those things connect.

We did one in Nebraska, but it was somewhat inconclusive. So we are going to give Primary Children’s a go.

But for now, it seemed like we’d had enough hospital and enough sedation and it was time to let everyone rest. Patrick ran around home very happy tonight. And very funny. He was making up all kinds of silly jokes that made me laugh. He even ate 1/4 of an applesauce cookie.

And on that note, I’m going to quit staying up while the rest of the household is asleep.

Thank you all for your prayers and thoughts and love.

Losing the line we were told never to lose

Or perhaps I should title this post “A date with the devil.” We are being forced to get to know the devil we don’t know.

Believe it or not, we finished a course of antibiotics and we went on vacation. Brian went on a business trip to the Ukraine. Patrick and I went to visit our good friends, the Laylands, in Seattle.

But writing about those things will end up waiting for another day. Because I’m writing tonight from a hospital room. Again. And there are things on my mind that, for me, have been the subject of nightmares for many months now.

Patrick has lost his central line. Not entirely yet. But it will have to be replaced.

It all started Saturday night right after I put Patrick to bed after our first day home from Washington and went to clean up before Brian returned from Ukraine. Patrick had been in bed about half an hour when I heard a plaintive “Mommy”, and then that unmistakable, heart stopping sound of him throwing up in bed.

I ran up the stairs but was too late. The poor little guy threw up half a liter of nasty green stuff. He must have felt awful all day. It took an hour to settle him enough to sleep.

Saturday morning, a homecare nurse had come to draw some labwork and follow up blood cultures. All seemed well at that point.. But i was very glad for those cultures when Sunday morning, Patrick was having low grade fevers. We went to church just to be able to take the Sacrament and see how long we could make it. We had a backup plan for our assignments at church.

And it wasn’t long before it was obvious Patrick didn’t feel well enough to sit quietly. So I took him to the foyer to let him move and I got on the phone with his doctor to see if we could come get more bloodwork done. And I pulled out a thermometer, and there was the number we had waited all morning for. 100.4 degrees farenheit. And official fever.

So, we made a bit of a scene leaving church, packed bags, and came to the hospital.

It took several hours to restart Patrick’s antibiotics. 8 for the one I thought he needed most, which just about made me crazy waiting for as he got feeling sicker and sicker. But as soon as they were given (along with a Priesthood blessing), Patrick started to feel a little better. We even slept through that first night.

All seemed to be going smoothly by the end of the 2nd day. I was a rockstar advocate mommy and got Patrick therapy, a picture schedule, integrative medicine & aromatherapy, and even talked to the palliative care team about signing him up for their services. I even managed to get his GI, surgeon, and a radiologist to have a care conference to discuss replacing Patrick’s positional line. They came back in favor of a change and suggested a plan of action to decide if and how to proceed.

And then, at 4 p.m., we came back to the room to draw cultures and start his antibiotics and his line wouldn’t draw. Or flush.

We ordered TPA and we worked it, and we worked it… and, well, after 4 hours of effort, he was exhausted, I was heartsick, and the line was still not working. And the plan from the care conference was upgraded from a hypothetical, optional plan to a necessity.

I did not sleep as well last night. (And not just because the nurse was slow about keeping the pumps from alarming and banged the door.)

Today we put the plan into action. Patrick went to radiology for a sedated ultrasound of the veins in his upper body. The order was for light sedation.

We learned today that Patrick is very capable of fighting light sedation. Made him silly and sleepy, but he was still perfectly able to fight the test. Moderate sedation didn’t fix things either. In fact, with sedation all of his inhibition control was gone and none of my usual distraction tricks were even an option. The ultrasound was wiggly, to say the least.. but the technician was patient and kept trying to get the information the doctors wanted.

Listening to her review her images with the radiologist, though, made my heartsick. As usual, Patrick’s right side vessels are fairly scarred. (Though perhaps a little better looking than the last I’d known.) But, they worked enough to give a better answer about the left side than before. Instead of just saying “Inconclusive”, what they said was that the left subclavian vein (the one in his shoulder) has lots of little collateral vessels around it too and shows evidence of being swollen at least, if not scarred, and also probably has a clot in it.

I asked the radiologist if that would explain the tricky behavior of this line for the past year and he said absolutely, that the vessel may have been pressing on the line. He also said that changing out the line over a wire was a risky move, given the clot in the line. But that I’d need to discuss that plan with our surgeons.

Other vessels were open, but most of them looked to have some kind of narrowing.

The rest of the afternoon was a little crazy. I got permission to change out Patrick’s button while he was still sedated and that went quickly and smoothly and he doesn’t seem to understand it even happened. That’s what we hoped for.

And that meant that Brian came up for the ultrasound and stayed the afternoon.

But it was a rough afternoon. Patrick didn’t sleep under sedation and he didn’t sleep after, either. He fought REALLY hard all afternoon to stay awake. We could tell when it started to wear off because he finally stopped fighting.

But because of low heart rates, he still had to stay in bed till 5:30. We got out for a short walk, but when we came back for TPN at 6, and I asked the nurse if all was done so we could leave, she told me no. She didn’t want to use the automatic settings to taper Patrick’s TPN levels up (to protect his blood sugar levels)… and so, we couldn’t leave the room.

The idea of making Patrick stay any longer in the room with the same old toys and bed and short IV tubing kind of broke my heart. So I had a very short little cry about it. Then I went and helped myself to several fitted sheets and used the extra safety pins around the room to build us a fort.

That tided us over for the rest of the evening.

Tomorrow will not be an easier day. As of tonight, they plan to take Patrick to surgery tomorrow. The surgeon will probably attempt first to put a line back into the same vein. That means that he’ll put a wire into the catheter, remove the old line leaving the wire, and then use the wire to guide a new line in.

That is the best case scenario.

The worst case scenario is that that won’t work. In that case, they want to repeat a venogram.. which is a contrast study of the Patrick’s veins. And they will use that to pick a new vein to put a line into.

It is entirely possible that the surgeon will come in in the morning and decide that he wants to have that done before Patrick goes to the OR. And then we’ll just do that tomorrow and the surgery the next day.

And the worst of worse case scenario is that the wire over doesn’t work, none of the other vessels are still wide enough to get a central line into, and then we’ll start discussing desperate measure that I don’t really want to get into in a blog post unless they happen.

Needless to say, this is scary. I am still terrified of the idea of Patrick no longer having veins to give nutrition through. I do not want to imagine that happening.

We are not to that point yet. There are veins in other places in the body that can be used. But there is still a lot of pressure to make one of these sites work because in order to have a transplant, Patrick has a have a central line in his upper body.

I’m scared and I’m sad.. and I’m really, really lonely for some reason this stay. But I’m calm. We have been praying and fasting about this line for a while now. I can’t help but think that this is an answer to those prayers.

So, if you’re the praying type, please join us in praying for the surgeon and his team and the radiologists tomorrow. We’d love to save this access site. We’d love to get another year and a half or more out of another. And I have this faint little hope that maybe the next line won’t scare me every time someone else flushes it, (and sometimes when I do, too.)