transplant – Page 5 – Patrick Hoopes

Transplant Day 13 and a little fun

Well, we survived another day here without Daddy. (Brian was gone yesterday and today for work.) In fact, today was a little happier. Unlike yesterday were his steroids were making him feel out of control, today Patrick was just loving and fun. We got up early and gave him a bath right away which he didn’t want and cried a fair amount about. (In hindsight, the nurse had told me she’d given his medication later than I thought and I was starting him out kind of in pain.) But once he was settled in his wagon, all was good.

We mostly just hung out in the room again for the morning. A volunteer came and they played while I cleaned up. He asked for and took a nap all on his own. During his nap, I snuck out to call my insurance case manager. With Patrick progressing so well, the team wanted to make sure we start working on a plan for home health care just so that doesn’t end up being what keeps us here. I also had to take a little minute to finish up some school enrollment paperwork. And then, it was back to play.

We painted. We opened the mail and played with the gifts inside. We used some of Patrick’s birthday money to buy a learn-to-spell game that they had in the book fair downstairs and played with that for a while. As an extra treat, one of the Short Gut mom friends that I’ve known since the very beginning of our support group arrived here with her daughter and husband today and we got to spend some time in the playroom together. She coaxed Patrick into showing her how his walker works. (He’s been refusing to use it to walk.).. and he stood up and basically ran across the room. That was enough to sell him on it. I told him it makes him extra strong and extra fast and so he stands up in it and away he goes. I think that’s the beginning of a lot more freedom for him.

And then, to top it all off, an awesome group of volunteers came and put on a “carnival” for the kids today. They had carnival games and really hammed it up to make it fun. I don’t think I’ve seen Patrick laugh that hard or often since he got here. And they sent him back with a prize to boot. I was really very proud of Patrick because he listened and obeyed when we told him that he should wear a mask to the party.

Then, we came back, ate dinner and he asked to go to bed. Tonight, he even chose, after playing “you’re a little sweetie” for a while, (that’s a game where he hugs and kisses and gives ugga-muggas and then calls us sweeties for it), he even chose to let me get up out of bed and let him fall asleep alone.

Good news of the day: Patrick’s feeds were increased again today.. twice. He’s now at 8 times more than he ever tolerated before. Also, we were able to space his pain medicine more than we have before. Tonight he told me he didn’t want it because it makes him feel yucky. I’m listening and we’ll see how he does tomorrow with tylenol mixed in to help us spread out the stronger drugs.

Also, I think I figured out how to work the ancient heaters in the room and this place no longer feels like a sauna. The colder it got outside (and it’s well below freezing at night), the hotter our room was getting.

Daddy’s work sent a personalized Av’s sweater. (31 for Patrick’s transplant day.).. and he wore it all day

We turned the craft table into a painting table today.

Patrick coloring in the playroom. Notice that he is sitting in a regular chair.. without back support.

Playing carnival games. The man who dived in as Patrick’s guide was so kind and devoted to making Patrick happy.

Fishing at the carnival game. Equally devoted in this group of youth was the young woman who sat under the fishing table for the entire event.

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.

Transplant Day 9 and Home Away from Home

Medically, today was very uneventful. I can’t remember Patrick every being so low maintenance when in the hospital. He has his TPN that runs over 24 hours (at half the rate it was running before). He has some replacement fluids, which are about 1% of what he was needing before. Then an antiviral that goes in his IV. All the rest, his anti-rejection medications, his acid reducers, his pain medicine.. they all just go in his g-tube. Other than the pain medicine, he only has things scheduled every 12 hours. I swear I was told that medications were going to be more complicated than this. We must not be to final doses yet or something.

Anyway, the team came around this morning and so far, he’s still doing great. They left his g-tube clamped all day, instead of to drain. And that was ok (for the first time in ever.) They also wrote orders for Patrick to start taking clear liquids. He was so excited when I brought him a cup of water after days of begging for one. He even got to eat dinner with us.

Otherwise, he alternated between playing in his wagon and sleeping. He slept till 8 a.m. He took a 3 hour nap. After a week of sleep deprivation in the PICU, a nice, quiet dark room was just what he needed to finally rest. And a comfy wagon and access to lots of new toys sent as birthday presents back with Brian were just the right incentive to walk from his bed and sit up just a little more for a while.

Have I mentioned that Patrick has me read and then studies carefully every single card we receive. And thanks to all the cards, banners and gifts, his hospital room already looks quite homey and comfortable.

For Brian and myself, today was moving day. We checked out of the room we’ve been staying in on hospital property and moved to the Ronald McDonald House. Even though it’s a bit farther from the hospital, walking in felt just like home.

After moving our luggage upstairs, we made a stop at a grocery store. I have never bought so much pre-prepared food in my life. However, it just make so much more sense to do this than to keep paying crazy high prices to eat in the hospital’s cafeteria. What we spent today would have covered maybe 3 or 4 meals at cafeteria prices. We’ve got a fridge in Patrick’s hospital room and there’s a mini kitchen on the unit, so it is easy to keep food there.

I was also very excited to discover that the grocery store closest to the hospital happens to have a moderately sized allergy friendly food section, including some of Patrick’s favorite safe foods.

And, well, that’s it. Brian is taking the night at the hospital tonight. I’ve come back to the Ronald McDonald House to unpack, do some laundry and have a night off. Patrick is so happy to have his Daddy back. So am I.

Transplant day 8 and a new room

Patrick woke up happy and friendly this morning at 6 a.m. During the night, he’d managed to work himself into a position where his head was resting on my shoulder, which made him as happy as can be. (He has an IV in his neck right now that makes it impossible for us to comfortably have him rest his head on my arm.) So, we found his tooth fairy money and we layed in bed and snuggled and talked. Then, the morning excitement came.

They don’t love sleep in the PICU. As soon as he was awake, they wanted to weigh him. I insisted they at least give him pain medicine first. But weighing is one of Patrick’s least favorite activities as it requires that he stand entirely on his own. Today, he managed to be weighed, but when I wouldn’t pick him up and carry him back to bed, he curled up on his knees on the floor and refused to move. It took some effort to come up with a way to coax him back to bed, but we eventually got here.

Physical therapy stopped by earlier today and asked about taking him to walk. We crafted a couple of plans that we thought might help motivate him. One of them included me offering him a wagon. But still, when it was time to get up, Patrick didn’t want to have any of it. Eventually, we just took him anyway. Once he got to the wagon, he’d earned a ride around the unit which brightened his mood and, with the wagon’s removable side, I was able to coax him to walk from wagon to bed a couple of other times during the day. Getting him out of bed 4 times in a day is a record.

Out for a wagon ride as a reward for a long walk this morning.

There weren’t many medical changes today. Patrick’s hemoglobin was low following yesterday’s biopsies, so they gave him a transfusion. I hadn’t realized how pale he was until I saw him with color again. That meant an awful lot of monitoring by his nurses, though, which meant very little time for sleep.

I finally gave up and just sat out of sight at 2:30 and he fell right asleep. But he only slept a half hour before they came to finish up the last of the medications that had to be given in the PICU. They gave me a cart to pack all of our things on. (Would you believe this kid came here with just a suitcase that is still sitting back in my room? All of this has been accumulated in his week here!)

All but one bag on this cart represents things acquired by Patrick in our time here. Some are borrowed. Others are gifts

Then, they made a big fuss about getting Patrick ready to go and out of bed into his wagon. So I moved him to his wagon.. and then we waited, and we waited, and we waited because the nurse on the floor was too busy.

Finally, at 5, Brian texted to say that he had arrived back in Omaha and just a little while later, appeared in the room. Goodness, it was a relief to have him back.

Not long afterwards, they finally came to move us out of the PICU and onto the Pediatric Floor. This is probably going to be our home for a while… But they gave us one of their bigger rooms which is going to be a whole lot more comfortable, assuming they leave us here instead of playing the hospital shuffle. I think this is one of the largest hospital rooms we’ve ever stayed in, complete with sleeper couches and a closet and a fridge.

It’s strange to have so little going on after such a busy week. Nurses pop in and out from time to time, but mostly we’ve been left alone.

I think we are all exhausted and looking forward to what will hopefully be a better night’s sleep. Now that Patrick has had his moving day, Brian and I will have ours. I understand there is a carload to get situated. Then we’ll see about settling into what we hope will be our home away from home routine for the next few weeks.

For anyone still looking to send mail, our room number is now: 6229. Mail time is currently our favorite part of the day.

Patrick picked this pose: sleeping in the wagon.

Transplant Day 7 and the tooth fairy

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

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

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

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

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

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

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

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

We’ll try again tomorrow.

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

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

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

I’ve shared it before, but this song and video have been in my thoughts often this week as I consider the selfless sacrifice in the midst of devastating loss. https://www.youtube.com/watch?v=J44vAOp1BmM&feature=share

Transplant Day 6

I consider it very good news to share that today was supremely, well.. lazy. Patrick is talkative and happy today.

Things didn’t start out that way. First of all, one anti-rejection medication requires vital signs, including blood pressure, to be checked very 30 minutes and so Patrick already wasn’t sleeping well. During the night, he kept rubbing at the staples around his belly button until he made the incision weep and we had a steroid fueled tantrum about 4 a.m. over whether or not I was a mean mommy for not allowing this.

Perhaps it was this or perhaps it was the effect of waking up sore and in the hospital again once more, but he was just plain sad getting up today. Respiratory therapy came in to do his morning breathing treatment, which Patrick has generally liked. But today it was a new person and he didn’t want anything to do with her. The nurse that was with her asked Patrick if the balloon in the room meant it had been his birthday. Patrick just broke down in tears. Yeah, someday he’ll get it. But right now, that added up to one very sucky birthday. It’s the first time he’s let go and cried about all he’s going through.

I think it was healing. Eventually, we got him to settle down enough for the breathing treatment and managed to change the tube on his nose, too. And then, he was ok. In fact, he was pretty darn happy. He sat up in his bed and played with toys all morning. He made friends with everyone who came into the room. He had a really good day.

We really were lazy all day. Patrick had some bleeding from his drains, which isn’t necessarily concerning.. just means that the suture lines from the transplant might still be healing. But I decided that it meant he should rest. So I let him just play on the bed and took an extra long time getting dressed and eating lunch myself. Occasionally, as a treat, I dip some mouth sponges in water for him. That’s about the maximum level of our excitement.

After lunch, Patrick had a package from our Primary (children’s sunday school) full of gifts and pictures colored by his friends at church in the mail. Included in the package were several chap sticks that I’d been told were specifically intended to be used as a motivator in therapy.. so I told Patrick to earn one, he’d need to get out of bed. He walked to the chair, we sat there all day watching TV, then walked him back to bed.

The effort of walking back and then a diaper change left Patrick’s little body trembling, so we called that good enough for the day. And now here we are, being lazy till bedtime.

A few milestones today: Patrick has weaned off of oxygen support. If he makes it through the night and has a clear x-ray, he’ll probably be done with respiratory therapy. He also got to get rid of a catheter now, which means we’ll need to remember to check diapers.

But that’s all the news, so in the absence of news, a few observations about life here. It’s different being here at yet another hospital. Grown up hospitals are different in so many ways from children’s hospitals. Some good, some bad. Here just a few things that have stood out:

1. Adults are so much more serious about illness that the mood of the whole hospital is just much more serious, professional, and somber.

2. Because adult visitors go home at night, the cafeterias here don’t operate at full capacity at dinner time. We were getting really tired of sandwiches, grill, and chinese food. I finally remembered to eat there at lunch and use my packed lunch for dinner. Eating a real meal (fried chicken and mashed potatoes) made me indescribably happy.

3. Also, because visitors go home at night, they like to shut down other parts of the hospital. Like half of the elevators and escalators. At first, when I was barely functioning, this really bugged me. Now, I welcome the excuse to take the stairs. After all, I have sat in a chair all day.

4. The PICU here is tiny. There are fewer than 12 beds. That means that it’s not hard to get to know the staff. Yes, the team rounding is still huge.. but it’s the same people, so I’m not having to constantly learn new names. It also means that I get to sleep here in the room if I want, (read: if Patrick wants.) And it’s really, REALLY quiet. Unlike the rest of the hospital, not sad and serious most days.

5. Being one of very few children in the hospital also means that Patrick is being spoiled out of his mind. You would not believe the pile of gifts and activities this kid is collecting! We were very well taken care of at Primary Children’s. Spoiled even. But this, this is almost gluttony. There are worse places to be planning to spend our holidays.

5. Finally, this hospital is huge. I spend most of my time floating around this tiny little corner of it. But probably this weekend, we’ll move out of the hospital’s family housing and a few blocks away into the Ronald McDonald house. I am trying to figure out how to make that work smoothly, given how long it takes to either walk to the Ronald McDonald house or to drive to a parking garage, park and walk through the building (without its escalators running.) This is going to break my hospital routine. Of course, not having Brian here to run all my errands and bring me food and clothes is going to do that anyway.

Transplant day 5

First of all, let me say that this was a much better day. Last night, right after I finished posting, the team came in and said that they felt it was time to mix up the pain medicine routine. Immediately, he became more himself. Also, right afterwards, respiratory therapy stopped by to start doing a treatment they call CPT. Unlike the mask that terrified Patrick, CPT is just like a great big massage. It put Patrick right to sleep.

It also told us that it was time for mommy to sleep in Patrick’s room. So, with Patrick asleep from his breathing treatment, I snuggled right up next to him and crashed. With pain under control, his oxygen saturation popped up to almost normal (though with oxygen running). Patrick and I slept snuggled all night. Since he is too sore to roll over and attach, he slept holding onto my ear. (That is sweeter than it sounds.) And by morning, he’d found his voice again. We gave him a bath and put on a new hospital gown.

Physical therapy came by early in the morning and we decided that with him feeling better, it was time to try walking again. They fitted him with a child sized walker and away we went. Patrick was scared at first and just kept crying for mommy to save him. I just got down on my knees and cheered him on and pointed to the next landmark until we got him to where Daddy was waiting to hold him in the chair.

The rest of the morning was quiet. They tried a nebulizer. He hated it. They discontinued those orders (hooray.) I did laundry and made a few more phone calls to Patrick’s doctors and therapists to cancel his appointments and let them know where he’d gone.

And before i knew it, it was almost noon. Time for Brian to leave to catch his flight home. So we walked Patrick back to bed with still some tears, but a stronger body and more courage. Then kissed daddy goodbye and settled in for a nap.

Patrick was in a great mood after nap. I’d decided we needed to do something sitting up in bed to help his lungs clear this afternoon.. So I reached into the big box of trick-or-treat prizes and found a set of paints. Patrick was SO excited! We gathered up a too-large hospital gown and pulled up his table and away he went to work.

The nurse gave him a cup of water to rinse his brush in and he immediately tried to drink it. Patrick is desperate for a drink of water. He was furious when I told him no. (Thanks to steroids and not feeling well, little tantrums are big explosions right now.).. But eventually accepted the little pink mouth moistener that his medical team had approved and his mouth looks and feels so much better.

Patrick’s transplant doctors stopped by to check on him this afternoon. Their jaws about hit the floor as they saw him today compared to yesterday, up in bed and playing. And that’s what he did for most of the rest of the day. We painted. We blew bubbles. We played with a harmonica. Child life sent a medical student to come make putty out of borax and glue. After changing his ostomy bag and taking a short nap, we got Patrick up one more time and walked him to the chair. This time he was pretty quick and made it with no tears. We sat in the chair and called grandma, then watched the new episode of Daniel Tiger, then walked him back to bed where he’s been playing with the cars he got for his birthday happily ever since.

We still had our hard moments. Beginning to understand having his ostomy has Patrick worried. It broke my heart when he apologized to the nurse that she’d had to clean him up when the bag leaked. And the tears over wanting a drink of water are heartbreaking. But these are big, big things that would upset anyone, big or small. And they won’t last forever.

Again, the kindness of family, friends and strangers has astounded us. Gifts and cards arrived at just the right times today. It seemed that in all of the hard moments, something else would show up. Thank you, thank you for your generosity.

Those first steps were scary and hard, but he’s getting better.

He’s figured out this posture is the best way to stay out of the way while the nurses get his lines settled

Patrick was so excited to be able to sit up and do something creative after so many days. I could barely keep up.

Transplant day 4

Today was a hard day for Patrick. It seemed to start out ok. His nurse overnight did a great job keeping him comfortable. At 6 he was well rested and talkative, though a little sad. His nose was itchy and when he rubbed it, the cannula in his nose rubbed just enough to make it bleed. His oxygen saturation was low, so we had to suction his nose, too, which is pretty awful for him. But, with Daddy cuddling, all was good for a few hours. Until they wanted him up to walk. That hurt.

When he got to the chair (about 2 feet away), he was sore and tired, but in good enough spirits that he dared work himself down into his favorite snuggly sleep position. That’s when the trouble started. Snuggling down made his oxygen saturation dip even lower. Soon, his nurse came back to suction his nose, really thoroughly this time. He was hysterical. And, it didn’t help.

So they decided to call for a chest x-ray and his nurse had him walk back to his bed for it. He was already sore from fighting the suction and walking was agony. But when he was done walking, he still had to sit up straight on the bed and have an x-ray taken. And I had to step out of the room while they did it.

Unfortunately, that x-ray showed that Patrick has gunk in his lungs and fluid buildup around his lungs. (They run a ton of extra fluid in the first couple of days after a transplant to make sure the veins stay open and happy so the graft will take… All that fluid has been just sitting in Patrick’s tissues and he was rather plump and sore this morning.)

They’d already started him on a medication to help him get rid of the fluid. They decided to order some medicine to help him cough. Patrick is refusing to cough. So they gave something IV and then brought a mask to administer a breathing treatment with.

That was the end. Patrick didn’t want a mask on his face. (I’m sure he’s seen enough of them in the OR.) He toughed it out the first few 10 second tries I did for him… But then he decided to fight… And when I tried to help hold him because he was fighting… Well, he lost it. Kicking, screaming, squirming, fighting with all his strength. This is amazing considering how little strength he has. But it surely left him worn out.

The breathing treatment didn’t work. They had to increase his oxygen several times to get things stable. Patrick was spent. He just sat there, not moving, not talking. I finally told the doctor that this wasn’t like him. We were going backward if he’d lost his words again.

They listened. They let him rest. They added some pain medications. They ordered a different kind of breathing treatment that just gently massages his sides to break up the junk in his lungs. And he has done better. He’s seeming calm. He’s slept a bit. His vital signs look a little bit better. And I’ve learned my lesson about letting them push him. Patrick is not one to be pushed. Challenged, yes.. But not compelled. I won’t let tomorrow go this way.

The hardest thing about the day is how just plain sad Patrick was. Because it was Monday, we had a parade of people in and out all day introducing themselves: social work, ostomy team. nurse coordinators, child life, and on, and on. And all the while Patrick just sat there looking like he wanted to cry but with a firm determination he wasn’t going to cry in front of anyone. And anytime I tried to talk to him about it, either his oxygen saturation would drop or someone new would come in.

He’s figured out he has an ostomy. (Where the intestine is brought outside the abdomen in one spot and drains into a bag.) He needs this so they can monitor for rejection for a year. I’m sure he’s confused. But anytime I’d try to help explain, there was one more person. Always trying to cheer him up. Some days, you don’t want to be cheered up. Some days you need to cry.

I think the treatment plan is better now. I’ll spend the night in the room tonight to keep an eye on things and to help him feel comforted. Tomorrow is another day. (And hopefully a good one, as tomorrow Brian goes home to get what Patrick and I need to stay here for a while and I’m gonna be on my own.)

We did have some good things in the day. Brian made it to Walmart which means we have food and socks (only I packed socks in the hurry to leave) and slippers for Patrick and some other needs. We got a lot of answers to questions we’ve had from the people who came by and called. I got time to get some of the e-mails and phone calls taken care of to tie up loose ends at home.

And in a very special bright spot, Patrick received 35 e-cards today. How amazing it was to read words of encouragement and support from friends and family and also from people we have never before met. I’ll admit, that is what got me through the moment today when my heart was breaking.

Thank you. Thank you!

Patrick’s Getting a Transplant – Day 1 (and a half)

Last night, as Brian and I were turning off the lights to go to sleep, my cell phone rang in my hand. I looked at the caller ID and my heart skipped a beat. It was the transplant team. It was 10:30 p.m. It took me 2 rings to get the courage to answer.

Patrick’s transplant coordinator asked how his health had been, and then she told me that she was calling because they had received an offer for donor organs for Patrick.

I thought I’d be excited when this call came. I was not. I wanted to shout “NO” and hang up the phone. Patrick has been having a very good year. His health has been good. He is loving kindergarten and for the first time has had friends his age. I’d just helped to a Halloween party in his class. It was a hit and he’d had a great time. We’ve gotten in to one of the best mental health programs in the state and were making good progress with his attention and behavior. We’d been trying a medication for his ADHD and it was a hard adjustment, but it seemed to be helping. He’s been learning to read. And I just planned his birthday cake and finished wrapping his presents.

Did I want to change any of that!? NO!

But at the same time, we know a very hard truth. Patrick has been defying odds as he lives with a terminal illness. There is a reason they let us do a wish trip. Patrick is running out of access. His intestines have been redilating and sooner or later would need surgery again. Patrick has been living on borrowed time.

We have said for 5 years that transplant would come at the right time for Patrick. Why that time happened to be during one of the happiest seasons of his life, I don’t know. BUT it did. And we couldn’t pass up the opportunity. Who knows when it would come again.

Getting ready to go was a chaotic mess. We had bags packed for us, but needed to pack Patrick’s things. We needed to call insurance and the doctors and somehow get to Primary Children’s, then to Life Flight and then to the Nebraska Medical Center. We needed to gather family to say goodbye and get blessings. And we were supposed to do it in 6 hours.

We didn’t do it in 6 hours. I was too confused. The hospital and Life Flight couldn’t agree.. And it took extra time. And it was ok.

Patrick's doctor- with us since we got to Utah, almost as much family as physician — Patrick’s doctor- with us since we got to Utah, almost as much family as physician

We got to the hospital a little after midnight. There, we were met by Patrick’s amazing GI who had come in and stayed up just for us. He wrote orders and then saw us off.

We got to the airport and were met by two amazing nurses and a pilot. Patrick had to ride lying on a gurney, but they managed to make it fun enough that, even though we’d woken him 2 hours after he went to bed (on a day he hadn’t napped), he laughed and played and was ok.

We arrive at the hospital around 6 a.m. and were shown into the PICU. There was some bustle of admission, but things were pretty quiet. Before long, Patrick had snuggled up and fallen asleep. And so did I.

Eventually, they came for some labs. We let him open his birthday present. Then, Child Life came by and asked if he needed a Halloween costume. As I’d left his awesome purple minion costume at home, we borrowed a Buzz Lightyear. It barely fit, but he was happy. And it came just on time, as the Nurse Practioner told us just then to let him up to move around. We made it out just on time to go trick or treating. Each department of the hospital put together mostly non-food goodies. Patrick happily went to each of them saying “Happy Halloween” and being showered with gifts. He came away with quite the haul. We even made the news.

http://launch.newsinc.com/share.html?trackingGroup=69017&siteSection=ndn&videoId=28082677

Trick or treating in a borrowed costume (with accessories)

About 2/3 around the room of trick or treats, we got a call that they wanted Patrick back in the room for a procedure. We made a hurried run back to the room where they explained that they wanted him to go to interventional radiology to try to place another line. That sounded like a request to do the impossible. It turns out it was hard, but possible. Patrick currently has 6 lumens.

Going down early for this meant that Patrick would need to be intubated and sedated earlier than we expected. It wasn’t worth the risk to wake him up again. So I used the little time that we had before sending him down to try to explain to him what would happen. I could tell he didn’t get it. I could tell he was scared.

But it was time to go. So we did all we could to tell him we loved him and help him feel brave, and then we walked him to the procedure room and kissed him goodbye.

He spent the afternoon intubated and asleep. He woke a little once and made a furious fight to take the breathing tube out of his throat. It took several people to keep him safe until they were able to get some more meds to settle him down. Hard, hard moment.

But the rest of the day was peaceful. With him asleep, they were able to get the other catheters and lines in that they will need to be able to monitor and take care of him during and after the surgery.

Finally, around 6 p.m. they came to take him to the O.R. We sat a bit on pins and needles till them, because until the organs arrived here and were inspected, there is always the chance of the transplant not going through.

It’s 9 p.m. now. The last update said that they were finishing putting in the liver and were just about to start putting in the other organs.

It has been a very emotional day. We have shed tears of fear and of hope and of grief and of joy. We have celebrated a birthday and Halloween and then said goodbye to our son for an indefinite amount of time. We have doubted ourselves, and we’ve been given flashes of reminders of faith. We have been touched again and again by the encouraging words of our family and friends and even of strangers.

Once again, we find our lives entirely overturned. I honestly don’t know how we are going to do this. But I am trusting it is going to be ok.

I’d like your help with something, if you don’t mind. Patrick’s birthday celebration got cut short when they took him early to place that line. I’d love for him to wake up to a room full of birthday wishes. Would you consider mailing a birthday card or sending an e-card? Mail to:

Patrick Hoopes
Patient Mail
Room # 5349
P.O. Box 6159
Omaha, NE 68106-0159

or you can send an e-card that will be printed and delivered to him http://www.nebraskamed.com/patients/well-wishers