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.
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
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.
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.
Cuddling with daddy
Getting up to walk
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.
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.
Today was a relatively quiet day. Patrick slept pretty well on his own. They gave him some pain meds (first post surgery) early this morning. When we go to his room, he was more alert than we have seen him post surgery. When he realized we were there, he asked Emily to get into bed with him to cuddle, when she did, he snuggled down and took a nap. When he woke up he asked that we put his new birthday shoes on, which we did. He has been wearing shoes all day.
We spent most of the day trying to get Patrick to understand that he really is hurting, and that it was ok to say that he he was in pain. We have gone up on pain meds, but we are good with that.
This morning a physical therapist visited and wondered if we would like to get him up and standing a bit, we thought would be a good idea, but he was sleeping at the time. This afternoon after we changed dressings, and got all the medical necessities done we asked that they call PT and see if they were availiable. PT arrived and decided that we needed a better recliner, and moved things around. Then she said ok, we’ll get him out of bed and have him walk to Mom, which is a bit more than we had planned. We got him out of bed, and his feet didn’t really work, but we helped him take the 5 or so steps to mom. We got him in Emily’s lap, and he said “ouch”. Tells us that we pushed him a bit. He has spent until now in Emily’s lap mostly sleeping.
This morning during rounds (when the whole team goes from room to room to discuss the plan for the day) the surgeon that performed the transplant declared that Patrick needed a room with a window. Patrick was having a hard time knowing if it was day or night because there was no window in his room. This afternoon, right before PT came I asked about it, and they said they had a room ready we just needed to make the move. After PT was finished, we made the move to a slightly smaller room, but it has large windows (with a view of another wing of the hospital). When Patrick has been awake this afternoon he just looked out the window.
Things are fairly calm here. They have been pumping Patrick full of fluids (this keeps all the blood vessels open, and blood flowing), which has him quite puffy (swollen). All in all he is doing well remembering that is 48 hours post major surgery.
I’ve had the thought that I should answer questions that some of you might be wondering. If you have more questions please feel free to ask, we are all in this together.
First what do we know about the donor? The answer is pretty much nothing. I got out of the surgeon that they weren’t in the hospital. We have been told that sometime in the future we can try to get information, but that is up to the donors family.
How long will Patrick be in Omaha? That is a hard question to answer. We have been told that the absolute best case scenario is 6 months, but plan on somewhere around a year. I’ll be back and forth a bit, but Emily and Patrick will be in Omaha. I’ll come back to Salt Lake this week to pack and finish getting the house ready, and then I’ll drive back so we can have a car in Omaha.
One last note – Patrick will be immunosuppressed to some degree for the rest of his life. This will mean that for a time (probably even after he gets back to Salt Lake) he won’t be able to be in crowds, including church or school. This will mean that our social boy will be kept away, but that is the price to pay for getting these fancy new organs.
Thanks to everyone for the love and support. We really appreciate all the offers of help.
Emily’s blog from last night left us in the waiting room. Around 11PM I looked up at the status board in the waiting room and all the other procedures had finished, just Patrick on the board in OR 3. About 11:45 we got a call saying that they were done and the surgeon would meet us in the PICU lounge. So we packed our stuff and headed back to the PICU.
We got to the PICU lounge and watched a kid try to climb the walls. We were pretty sure he had family on the floor, and he wasn’t allowed to be in the room, so he was stuck in the waiting room. I then realized that he probably didn’t get to participate in any of the Halloween fun that had been happening outside the hospital that night. I couldn’t get to unhappy with him for trying to entertain himself.
Dr. Grant came and sat down with us. She said everything went well. He was able to keep his G-Tube, and his belly button. G-Tubes are often removed because they remove parts of the stomach to try to make food pass better. And belly buttons are often in the way of the incision, however usually if you tell the surgeon that the belly button is original and it wasn’t created by some other surgeon, they do their best to keep it around. She mentioned that she removed his spleen and gallbladder partially to make room for the new organs, and partially because they have potential to cause problems down the road.
Dr. Grant was able to completely close his incision. She mentioned that the likelihood that they will have to go back in and clean things out is about 50% so she only stapled him closed.
We both looked at each other and knew that we were all dead tired, so we agreed that we would chat more in the morning.
We then watched them wheel Patrick by with multiple people from the team surrounding him. They had told us that we needed to wait before we could come back, but no one really told us how long. There is a lot to get done when any patient comes out of surgery, not to mention one like this, so they prefer not to have parents around getting in the way and asking questions for a bit, which to us is completely understandable. Some told us to wait an hour, some said that they would call us when they were ready (that never happens). So we sat there, half awake. Finally I decided that I would go ask the receptionist to call back and see if we could go back and kiss him goodnight and head back to our room to get some sleep. They agreed. When we got back to his room we were greeted by the main PICU doc with many questions. Guess we didn’t need to wait that long.
We answered the docs questions, and said hi to the team that would be taking care of him that night. They mentioned that they would be trying to extubate him in a few hours which caught us off guard. We asked that they call us if they did, they agreed. We wandered back to our room which is about a 5 minute walk back.
We both got ready for bed quickly, and were asleep as fast as we could.
We slept pretty well. We got notification of a voicemail on our home phone, so we listened to it, and it was the nurse asking us to call because she had a few questions. So we got ready for the day and headed up to his room.
Patrick was still pretty out of it. He would open his eyes just a little bit look around, and fall asleep. Which is what he did most of the day.
In the early evening we were doing what we could to try to get him to fully wake up and open his eyes. I had walked to a grocery store and among the things I picked up was chap stick. Understand that Patrick obsesses over chapstick, when he has some it is like his little friend, he has to have it everywhere. We offered him a stick of chapstick, and he immediately wanted it, wouldn’t open his eyes but wanted to hold it. His hands weren’t really coordinated enough to hold the chapstick though. He fiddled with the chapstick for a bit, and we asked him if he wanted to put some on Emily’s lips. He nodded, so Emily put the chapstick in his hand and bent down so he could reach her lips. The nurse was out of the room when this happened. As the nurse came back in the room, I heard another nurse comment to her “He is putting chapstick on his mom, I think he is awake enough to come off the vent”. So the nurse went and got the doc, who gave the go ahead.
They turned off the vent and took the breathing tube out (extubated) him. He started to try to talk, and had a croaky little voice, but at least we could attempt to communicate with him.
They put him on oxygen using a nasal cannula. He doesn’t like things in his nose, so he made every attempt to pull out the cannula.
Because he was off the vent, we could ask to hold him. The nurse happily agreed, and we started getting things ready so Emily could hold him. This was a bit of a process, with IV lines, monitors and other tubes attached it takes a bit to move him. But we did fairly easily. He is much bigger since the last time Emily held him in the PICU. But they were both happy to be in the situation.
The rest of the evening was spent with Emily hold Patrick trying to keep his hands away from the oxygen cannula. I did what I could to keep them both comfortable. Patrick got a little more voice back, but it is still not what it should be, but that will come with time. He is still quite out of it. He hasn’t had any pain meds or sedation since this morning, but he is not really complaining about pain. He is a great little trooper.
As I finish this blog Emily is already asleep. It is amazing how tired we are.
Thanks again for all the thoughts and prayers. Tomorrow is the sabbath for most please join us in thanking our kind Heavenly Father for this amazing blessing, and asking a blessing of comfort on the family wherever, whoever they are for making the choice to help so many other families at such a hard time.
Finally mommy got to hold Patrick.
Patrick wanted Emily’s glasses. We just happened to have some glasses from trick or treating the day before.
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
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.
The Life Flight and ambulance teams
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.
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
**Disclaimer: I know you all want to read about our much bigger news. However, I had this post all but written before I got busy with Halloween and birthday planning last week. So, I figured I might as well finish it up and hit post. I promise I am following tonight with other news, too.
Our family did something that, for us, was completely upside down last week. I went on a trip. And I left Patrick home with his Dad. I recognize that this is not unusual in the world we live in. However, it is incredibly unusual for the primary caregiver of a home infusion patient to travel without them is very unusual.
Let’s start by saying that we survived. In fact, I think it was good for all of us.
A few months ago, I was invited to attend a research panel on the subject of lost Central Line Access. This came through a doctor who I had e-mailed a few times because of my support group and later because of the troubles we have had in placing a line in Patrick.
At first, the idea seemed a bit crazy. But the more I thought about it, the more important it sounded. Here a group of experts was gathering to help try to figure out how to research and solve the exact problem that is putting my son’s life in jeopardy. Why wouldn’t I take the chance to go meet them and contribute to the discussion.
Well, why, except that we’d have to pay my way and have Brian take time off to fill in with me while I was away. As we discussed it, we decided it was a really good idea for me to try to go. (Brian also thought the break would be good for me.)
So, last Sunday I snuck out of church early and headed to the airport. I got picked for expedited screening at the airport and made it to my gate in under 30 minutes. Then I looked around and thought “Well, how what am I supposed to do with myself?” Remember that usually when I fly, we spend something around half an hour in security alone, and then we have to repack bags, change a diaper, gate check our stroller, and make arrangements for early boarding. Oh, entertain a very active child while keeping his IV tubing safe.
That Sunday was one of the longest and quietest in my memory. I read books, watched movies, played video games, sent e-mails, checked on Facebook, worked on a birthday video and still had time to spare. I finally made it to my room, called home, and then went to bed a little after midnight.
Morning seemed to come too early, but without anyone else to get ready, I was still dressed and ready with time to kill.
The panel itself was amazing. I tried taking notes, decided writing was too slow, switched to a computer and filled 12 pages. I learned so much about what might cause patients to lose central line access. I am itching for this panel to bring forth fruit in the form of better understanding of how to keep patients from losing central line access quickly the way that Patrick did. I can’t go into details about the research plan that was decided upon.. but I can say that it is a huge but simple step that could lead to so much better understanding, and with better understanding comes better care.
It was also an amazing experience to be in a room filled with these brilliant medical minds. I got to sit with and get to know better many of the people responsible for designing and manufacturing central lines. I came home with a stack of business cards and am already working on hopefully becoming a little bit more of a patient advocate in this area.
And then, when the conference ended, I took a cab into Washington D.C. I spent the evening and morning playing tourist. (Only getting myself lost a couple of times and never irreversibly) before time to come home.
On the flight home, I sat next to a talkative man who had been all over the world. We compared travels and experiences and opinions. When we landed, another man asked me what my career was that allowed me to be so well traveled. When I told him I was a stay at home mom of a special needs child his jaw about hit the floor. For some reason, that gave me a bit of an ego boost. I think I sometimes feel like I disappear a bit in this important but unlauded role.
Being away from Patrick and Brian was an eye opening experience. I think it was for them as well. I think we all like our roles. (Though, I’ll admit, it was hard to come back home and dive right in.) I think we can go several more years before sending Mom away on another big trip. But it was really fun to stretch my wings and remember what it’s like to be just me for a while.
I loved reading Brian’s retelling of the events of our wish trip. I’m so glad he was able to capture those memories and share them with you.
It is very strange to come home and be right back to normal life. Life where things are too busy to spend time telling the stories of the Wish Trip that I wish I had time to tell. I’m looking forward to our star-raising party for just that opportunity. But for now, I’m gonna grab a moment and tell you what I wish I could tell you face-to-face.
I wish I could tell you how different it was to travel with everything planned out and taken care of for us. We travel a lot. But this time, someone else made sure that we had what we needed, that we knew were we were going, that we always had a chance to be fed. Give Kids the World does exactly what it’s name says. But what the name doesn’t say is that they wrap up tired, worn-down parents in their arms and do all they can to lighten their load and make them feel special, too.
And they give you the best gift in the world in giving you a chance to witness joy on the face of your child over and over again. That gift is so precious, especially to parents who have seen their children’s faces filled with pain and worry and fear many more times than is fair to any child.
Every night, after giving Patrick his melatonin and tucking him into bed, I’d lay next to him while he fell asleep. Every day, he’d relive the excitement of the day. We’d relive rides and retell the conversations had with the characters we met. One very special evening, after meeting Spiderman, Patrick and I had a good 20 minute heart-to-heart about what superpowers are and what amazing thing each superhero can do. Describing “web-slinging” to Patrick and seeing him overflowing with excitement at the idea… Yes, that is one of the precious moments I hope I never forget.
I could tell you how amazing it was to receive the same magic treatment at each theme park, too. We didn’t go in assuming anything was owed to us. A quick jump to the front of the lines seemed like more than enough special treatment. But most places we went, they went above and beyond that. We were told not to expect to skip lines for characters, and yet when Patrick wanted nothing more than to meet Donald our first day in the Magic Kingdom, there were the Disney Castmembers showing us through the back entrance right to Patrick’s favorite character. Or the morning we decided to pop in and see if there were any cancelled reservations at the month-long-wait-list Beast’s Castle restaurant and they handed us a piece of paper and told us to go right in.. At SeaWorld we were told we’d need to buy a tray of fish for me, but when we tried to do so we were informed that we were their “guests” today and not only did we get that extra tray of fish, but a trainer who commanded the dolphin to jump right up so Patrick could touch it. And in Universal Studios they were determined to add to our experience. Not only did we get to turn around and ride the same ride again when Patrick wanted more, and were given special meet and greet opportunities after the animal show… But if someone met us and didn’t know anything more they could do for us, they’d make sure to give us a hint about some way to sneak in a little more.. like where to sit on the parade route for an uncrowded extra-long show by the cast of Dora.
And speaking of Dora the Explorer… in order to meet both Captain America and Dora and Boots, we virtually ran in our parkhopping and, if the Fitbit was right, covered a couple of miles in that hour. But it was well worth it to see the look on Patrick’s face when Boots walked out in front of him. And to see him flexing his muscles with his favorite superhero, too? Yeah, sometimes we parents do crazy things for our kids.
Like spending every day for a week out walking miles (about 10 a day) in the crazy mix of hot humidity and afternoon thunderstorms that is Florida’s daily weather. I don’t think a Utahn can properly prepare themselves for that kind of humidity. But, why didn’t anyone warn me that we’d need ponchos? And a game plan for when lightning closed everything. I don’t see myself moving to Florida anytime soon.
We were amazed that Patrick stayed healthy. Our second day, we were afraid that wasn’t going to hold. He had a cold when we left our house and as we went to lunch at Universal Studios, he got really grumpy and started rubbing his ears. We were contemplating which nurses we could call back home and whether or not the first aid station would be able to help him. Thankfully, after his nap, his ear seemed better. He stayed healthy. I caught his cold, instead.
Brian didn’t tell you much about the last days of our trip.
We left Give Kids the World on Saturday morning. Brian drove to the airport to trade in our rental car. (Make a Wish only rented our car for the length of our wish trip, so we needed a different car for the days that we extended to visit family.) Meanwhile, Patrick and I stayed behind to pack up the room and give Patrick one last chance to play on the Candyland playground.
Leaving the village was bittersweet. We visited to see Patrick’s star on the ceiling of the castle and snuck into the Amberville station (train station/arcade) to play with the remote control boats before leaving. (When Brian first saw them, he said it’d always been a dream to play with something like them. Moms and dads can have wishes granted too, right?) Give Kids the World will always hold a special spot in my heart. I think we’ll spend our lives looking for ways to give back.
It was so nice to go spend some time with Brian’s aunt and uncle. We were exhausted after a week in amusements parks. So to go and just sit, visit, play with toys, watch Women’s Conference on TV (The Church of Jesus Christ of Latter Day Saint’s boasts the largest women’s organization and the largest conference for women in the world), and just rest for a few days …that was heaven.
Sunday, we slept in, wore our pajamas till well past breakfast, and watched Dora the Explorer. Then we took a nap, went to church, and in the evening all of Brian’s cousins from the Florida area came for dinner.
Dinner was wonderful chaos with kids everywhere and food overflowing. Brian’s cousin taught Patrick to play duck-duck-goose. He thought this was hilarious, except that instead of running for his spot in the circle, he’d just yell “Goose!” and run away! I couldn’t help wishing that this family didn’t live so far away. He was just so at home with them.
Monday morning, we packed up once more. Patrick’s gift haul filled an entire large duffle bag by itself. We put on our matching Minion t-shirts and then went to Silver Springs for a glass-bottomed boat tour. It was a lot of fun, even if we didn’t see any gators or monkeys. Patrick, however, didn’t know what to do when that was the only ride planned for the day.
We drove back to Orlando and grabbed lunch at Giordano’s Pizza.. a favorite restaurant of mine from my days in Chicago and not found anywhere outside Illinois.. except in Orlando. Mmm. Deep dish pizza!
It was starting to rain again as we arrived at the airport. We thought we were in the clear when they let us board the plane, but then lightning started again. We waited an hour before finally being able to take off. Amazingly, Patrick handled this pretty well. Thank goodness for the tablet.
It was late when we made it home. The air had that perfect Utah fall chill in it. Thank goodness for that. It helped ease the transition back home. Because face it, as good as home is.. nothing compares to a wish trip. We were glad to be back to normal, but very, very sorry to see it go. This is the kind of experience that just changes you. You want to tell everyone about it.. but there just isn’t time to put it all in words.
Patrick talked about nothing but his trip for most of the next week. At least, until his favorite friend at school fell and had to get stitches in her head. His head’s now full of friends and school, which is also wonderful. But we talk about his trip still a little every day.
Here are some pictures taken of us by Give Kids the World and Disney.
This picture was taken as we arrived in the village. Our villa and rental car are in the background.
Mickey came to the visit our first day in the Village. Patrick was a little star struck.
The family with Mickey.
Goofy signed Patrick’s stuffed Mickey. Patrick loves names and he loves Goofy, so that was about the coolest thing he could have done.
Arriving in the park. Patrick’s not looking too happy because the with the ferry ride and long security lines, it had taken us over an hour to get into the Magic Kingdom.
Meeting Minnie. After this day, I became “Minnie” to Patrick.
After meeting Mickey and Goofy in the village, Patrick’s first wish in the Magic Kingdom was to meet Donald. We were surprised when a cast member snuck us in the back for some time with Patrick’s favorite character.
Meeting Daisy
Tigger and Pooh were headed off shift when the cast members snuck us in.
In the picture, Patrick is asking Pooh where his central line is.
Brians’ cousin and her little ones joined us for this day in the park.
It took a lot of coaxing to get Patrick to come for this picture. He just wanted to look at Mater and McQueen’s wheels and doors.
This Mickey Mouse could talk. Here, he asked Patrick to fly with him.
Waiting for Mickey
Patrick loved dancing with Mickey so much that getting this still shot was kind of a feat.
Notice how soaking wet we are. We got caught in a downpour right before and ducked in to meet Mickey to get out of the rain.
We visited Tinkerbell because it was still raining and she was in the same building as Mickey.
Visiting Santa on Christmas at the Village
We were so excited when Pluto showed up in the village, since we couldn’t find him in any park.
Horseback riding. The helmet was a touch big.
Patrick still can’t stop talking about Mayor Clayton. (Notice: a few days in Patrick starting saying “cheese” for the camera and running away. He was so sick of being photographed.)
Our favorite magic picture
Mama and Papa Bear – volunteers in the village. Patrick really fell in love with them and insisted on saying goodbye before we left.
Patrick Hoopes 