hospital stays – Page 4 – Patrick Hoopes

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

How can I help?

Yesterday when we were checking into the Ronald McDonald house, our host asked where we were from. When we said Utah, he said, “Oh! Mormon country!”… Then after a pause told us he’d just come back from Utah after helping to settle some kids who’d been through a really rough time. “Mormons really take care of their own.”

We can testify from our own experience that that is true. And yet, our amazing friends, family, and congregation are always asking what more they can do. One of the questions we hear most during these long difficult stretches is “How can I help?”

So, in tribute to all of you, and in answer to the dozens of people who have asked for ways to help over the past few weeks, I thought I’d pass our waiting room time bragging about some of the ways we’ve been helped over the years.

1. Visits.. It doesn’t matter if we’re at home or in the hospital. A new person always lightens and lifts the mood. For example, last hospital stay one of our friends was brought to the hospital for work and found herself with some extra time. She texted and asked if it was a good time to stop by. She came and, because Patrick needed out of the room, we walked down to the playroom. That’s when we discovered his line had broken and we turned around and headed back to the room. She walked with us, and as nurses swarmed the room to help the problem, noticed that the breakfast cart had come. So she went and picked up a muffin and milk for me.

I share this story for two reasons. First, it shows that you might just dive into chaos and wonder if you’re in the way. The truth is that Patrick talks about who visited all day long, whether the visit was at a “good time” or not, whether we actually had time to chat and play or not.

When we got home, another friend came to visit and brought a few new toys and a balloon. (New distractions are always a big help). Patrick’s talking about that visit a week later.

We get lonely. We get sick of each other. We need our days broken up. We may not be great hosts, but just your presence helps.

2. Food. In the Mormon world, bringing food is something we’re exceptional at. And believe it or not, it really helps. On the return from one hospital stay, a friend showed up with a pan of uncooked enchiladas. It was a few days later when we got to cooking them, but it was so nice to have a prepared meal in the fridge. Once we returned home from a trip to find a pizza on the porch. And you may remember when we charged a cookie entrance fee to visit Patrick in the PICU. Those cookies were needed sugar during time when we rarely wanted to leave Patrick’s side, and a lot of fun to share with nurses and other hospital staff and patients as we had so many of them that we couldn’t eat them all.

In the hospital, lunches are especially challenging for me. I often can’t get out of the room to get something to eat. Once, I picked up the phone to order room service to the ER 10 times in an hour and never could stay on the phone long enough to place an order. I often just skip lunch when Patrick is hospitalized. But I’m a grumpy bear when I’m hungry. Food helps me be a better mom.

If you really want to make my day when we’re in the hospital, show up with a sandwich or some snacks. (Do you know there was once when Patrick ran a fever and wanted me to lay in bed with him for 48 hours and the only food I ate were the snacks friends delivered?)

I love our family who faithfully pack Sunday picnic lunches to eat on the patio? Even though the medflight helicopters blow all of the food away when they take off and land? And I love my mom who often things to bring along things like fresh fruit and vegetables.

3. Play time. You’d have to not be looking to miss that Patrick is a VERY active and playful little boy. He wants to be doing something every moment and if he gets bored can stumble into trouble very quickly. One of the biggest helps for me is when someone will come to play.

For this entire summer, my next door neighbor’s youngest daughter has been coming over to play with Patrick. She has so much more energy than me and is more than happy to push him all around the backyard in his stroller to make him laugh, or to read books, or to do crafts. We’ve even taken a couple of field trips to a nearby splash pad. Because Patrick’s an only child, having another child to play with is an amazing gift for him. And for me? It gives me a short break from being the one who thinks of fun things to do.

Playdates are an amazing help. The patient practice Patrick gets playing with other kids. Often they come at moments where you may wonder why we’re crazy enough to go out, but it offers just the break and distraction we needed.

I’ve had teenagers come to play while I did dishes and another friend come bring the most amazing craft and science projects. I’ve even had friends ride along to doctor’s appointments to play with Patrick in the waiting room. Patrick is so happy to have the company.. And any opportunity to wipe down counters, fold some laundry, load a dishwasher without little helping hands helps me.

4. Help with the chores. That brings me to my next topic. Chores. I always have more things on my to do list than I have done. Especially since conversations with doctors, appointments, hands-on medical care, and quality time with Patrick trump household duties quite often.

My little sister is awesome about this. She often comes by in the afternoon after school or work and helps me put the toys back in the toybox, sweep, prep dinner, iron, etc. If Patrick wakes up while we’re working, she takes him to play and lets me finish.

When Patrick was coming home from the NICU, a “cleaning crew” from our church came and sanitized the house. And one sweet lady took about a dozen shirts from me, ironed them, and brought them back to put away. I’ve had people take home our laundry, wash, and return it. We’ve had neighbors water and mow our lawn, pick up our mail, bring in our garbage cans. And on and on.

It makes a home feel so peaceful when it is clean. And often, helping me clean is easier than helping with Patrick.

5. Help in medical moments. I have to give a special shout out to friends, neighbors, and family who have stepped up and learned to do things they never imagined they’d need. You have prepped TPN, given meds through a g-tube, changed countless central line dressings, restrained Patrick so I could change a button, clamped off broken lines, treated allergic reactions, caught vomit, changed diapers with our crazy diaper cream regimen, sat with a febrile little boy so I could pack a hospital bag, and on and on. And, in what is the one of the smallest and biggest things you do, you have carried Patrick’s backpack while he explored so we could sit down.

We are a part of a very, very lucky and small minority of special-needs, and especially short gut, parents who have not just one but several people we can call on in these moments. Because of you, we still make it to the temple sometimes, catch a hockey game, see a movie, and go on dates. You make it so he can go to Primary at church with the other children. You get me to the dentist. You let me nap.

5. Listen. You read my blog. You follow us on facebook. You help us troubleshoot. (Like the onesie pattern that Brian’s mom and I developed over the years to keep his line and button safe at night… or the countless little issues solved by brainstorming with other short gut families online.) You chat. You call. You stop and give me a hug and let me cry without saying anything at all.

6. Prayer. And, when you can do nothing more, you pray for us. I have felt us lifted up by your prayers. I have felt the peace of your prayers. And I have seen countless medical miracles because of your prayers. Thank you for thinking of us, praying for us, and keeping our names on prayer rolls and in prayer groups and flickering in the flame of sacred candles.

Thank you. Thank you. Thank you! How would we have made it this far without you?

And thank you for continuing to offer your help. I hope this brag list helps answer your question of how you can (or already do) help.

The line placement was a success

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you all for your prayers and thoughts and love.

The devil you know vs. the devil you don’t

Patrick and I had the most frustrating of mornings yesterday. Got up as usual and started out happy enough, but then it was time to connect his 8 a.m. antibiotic. I went to withdraw the ethanol lock out of his line and it wouldn’t come. Tried to flush. Wouldn’t budge.

So I grabbed a dose of Cathflo (the super declotting agent for central lines that I am learning I am VERY lucky to be allowed to administer by myself at home.) Worked it into the line, which took me almost half an hour. I left it in for half an hour.. drew back and the line drew back beautifully.

Tried to flush, and nothing. Let go, and the syringe filled with blood.

Not good. I tried several more times and just got the same result. The antibiotic was due. The TPN was running. The two can’t go through the same tube at the same time. And I was stuck.

So I called the hospital and asked for the GI on call, but they wouldn’t give them to me because it was almost 9 a.m. and the GI clinic opened at 9. So I called Patrick’s nurse, and she was stumped. She called the department at the hospital that specialized in central line repairs, and they were stumped.

Finally, Dr. Jackson’s nurse got word I was calling and called me back. And she was stumped.

It really seemed like the blood was flowing backwards in the line.. out instead of in. Which either meant a slipped placement.. or a line broken under the skin.

Both line killers.

So – while they did their research, I did the only thing I could think. I said a prayer. I put one more dose of TPA in the line. I forwarded our home number to my cell phone. Then, I packed Patrick up and we went to mommy-and-me exercise class. Makes sense, right? We needed some normal, and some distraction. And it was his last guaranteed chance to go to class before school.

Halfway through exercise class, as I was sweating and huffing and puffing… in the middle of the popcorn song where we jump all around the room pretending to be popcorn… my phone rang.

It was Dr. Jackson’s nurse telling me that they’d arranged an admission to the Rapid Treatment Unit. The plan was to evaluate the problem, do an x-ray if possible, have the IV team look at things. And then, she said, it didn’t look good.

I hung up and stayed till the end of exercise class. Why not?

Then we came home, I showered, and I packed a suitcase to see us through a one day hospital stay and a likely surgery.

We rushed up the hospital, lugged our way into the RTU, got vitals, met our nurse…

And then tested the line.

And the 2nd dose of TPA had fixed the problem. Best bet? That the clot was working like a stopper that allowed blood to flow in, but not to flush. Kind of the opposite of usual line function. And that it was blood trapped in the line that was flowing back after attempts to flush… Not the line bleeding as it appeared.

We called it a nurse visit. The doctor came to “not” consult with me, so we wouldn’t be billed for the service. He’s seen us struggle to keep this malfunctioning line going for the past 15 months.

I asked him if he’d give up and replace it yet. Knowing the risks of lost access for Patrick.

He shrugged and told me, “It’s the devil you know versus the devil you don’t.”

How often that is true with Short Gut. How often do we weigh the choice between the familiar but uncomfortable present situation and the risk of an uncertain outcome?

The choice about transplant is certainly that kind of a thing.

It takes a lot of faith and prayer and hope and stepping into the darkness to move along this journey.

And a lot of mornings derailed by emergency hospital admissions that leave dirty dishes and dirty laundry and a mountain of other unfinished tasks while we wrestle with uglier demons.

Brian and I have been doing a lot of pondering and praying to know what is the best choice about this troublesome line.

If you’re praying for us, that would be a good thing to pray for. For us to know whether to keep fighting with this line or take the risk of swapping it out in the hopes of fewer infections and clots and frustrating mornings.