Tag Archives: Primary Children’s Hospital

Transplant Day 804 and Look Ma. No lines!

**Composed yesterday in the surgery waiting room**

This is a good news post. But I’m finding myself so very out of practice at writing updates in the surgery waiting room that I am having a little bit of a hard time getting started.

At 7:30 this morning, we kissed a very drugged and giddy Patrick goodbye at the O.R. doors. He is having his port removed today. We haven’t needed it in a while. We left him with a central line because this his veins are so scarred that putting in a new line will certainly be difficult. This port has been so much healthier than any other central line he’s had before. And it saved him trauma with labwork. We didn’t feel any rush to get rid of a line

But this summer Patrick’s bloodwork started to come back so stable and consistent that his decided to switch labs to every other month, the port became more effort and risk than benefit. (They have to be flushed every 30 days regardless of if they were used.) We knew we’d need to have a talk about removing the line soon.

Last October, we took Patrick for his annual transplant checkup. When we raised asked the doctor if we should be considering taking the port out, he was surprised to find it was even still there. There was no question that it was time. Soon… But of course, we still took our time.

We allowed time for the doctors here to talk to the folks in Nebraska and know what would be involved in removing a direct superior vena cava line. We tried to wait for the end of cold an flu season.

But also at Patrick’s follow-up in October, the doctors decided to stop Patrick’s prednisolone, which was a major part of his immune suppression. Within two weeks, he started to have a severe pain in his side. After about a week, a small bump finally formed. And when we took him on a rollercoaster ride, that bump burst revealing a small abscess.

For some reason, one of the dissolvable stitches in Patrick’s ostomy scar never dissolved. It just stayed there as long as his immune system was heavily suppressed. But as soon as the prednisone was gone, his body started to rebel against a foreign body. He’s had a recurring abcess for several months now. Just a little pimple that would rise and fall. But it hurt like crazy. And that’s what finally got us here.

So here we are. An hour after Patrick went back, the surgeon was back out to report that all had gone well. He’ll have a little bit of an open wound where the abscess was an a pretty sore area on his chest until the space where the port was heals.  But overall, this should be pretty easy.

We’ve taken the port for granted for the past year or so. That makes this transition a little bit simpler. But the simple realization that Patrick has IV line for the first time in his life is a little bit disorienting.. miraculous.. scary.. comforting.. umfamiliar.. splendiferous!

Now not every fever could mean sepsis. Now he’ll have to have labs drawn from the shoddy veins in his arms. Now we won’t have to wake up early once a month to apply numbing cream before the port is accessed. Now we may not have numbing cream at all. Now he won’t have to protect his chest to play. Now it matters more if he eats and drinks. Now we won’t have to worry if a clot is forming. Now he may not automatically qualify for nursing. Now there’s one less thing that makes him different from other kids.

But really, it’s about time. Because I keep forgetting that it’s time to access his port. And I keep forgetting to tell doctors he even has one. He really didn’t need it anymore.

I’ll leave you with the words of a song that Patrick is singing or making me sing at least once an hour right now.


“I feel better, so much better
Thank you doc for taking all the ouchies away.
I didn’t feel so good till you fixed me like I knew you would
And I feel better. So much better now.”

Transplant Day 176 and Please Stop Chasing My Rainbows

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Two weeks ago, my youngest brother got married. Brian and Patrick didn’t stay long, partly to protect Patrick’s immune system and partly because Patrick gets horribly bored at long wedding receptions. But I stayed behind at the reception. It was wonderful to catch up with family and friends that I only see when big events bring us together.

It was also a little strange to discover that so many of you read my blog, even though we haven’t talked in ages.

And there was something said to me by one of the women I’ve known and respected forever that’s been sitting a little funny with me that I’d like to address. She said how glad she was that we were home, especially as my blog had made it sound like we were living in “less desirable” circumstances.

This struck me funny because, although I really struggled with the loss of comforts of home at the Ronald McDonald House and the awkwardness of living in close quarters with other families day in and day out.. my memories of the Ronald McDonald House are overall very fond memories and I’m afraid I didn’t do the place and the people justice in what I wrote.

Patrick and Ronald last December

Patrick and Ronald last December

This week, a video was shared on Facebook of one of the families that we got to know while we were there who hold a very special place in my heart. They were there seeking the same miracle central line placement Patrick had needed to be listed for transplant and that mom and I bonded in a way few can over shared trauma. I don’t think to can understand how terrifying and desperate that end-of-the-road, hail mary, do or (literally) die situation really is. The video talked about how wonderful her son was doing and about how the Ronald McDonald House had helped her family. I thought it was good news and I wanted to rejoice.

The next day I learned that the video had, in fact, been shared in tribute. Instead of good news, the worst had happened. Lost central line access had put her son at the top of the transplant list. In the short time since we’d left the house, he’d received “the” call and gone for transplant. But something went wrong in surgery and he never woke up. He passed away this week.

We made a very calculated choice to stay at the Ronald McDonald House. Yes, there were financial benefits and proximity benefits. Yes, there were difficulties and uncomfortable parts, too. But we knew that being there meant the ability to share our journey with other people who’d get it.

I can’t describe the connection we have to the other families who lived long-term with us in that house. I learned how to be a transplant mom from them. We helped each other in every way we could. Cooking together. Doing each other’s laundry. Crying together. Celebrating together. They are part of my heart and having them now spread across the country facing these trials without being close to lean on each other for daily support is hard.

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The truth is that doing this at home would have been much MUCH harder. During all those months away, the people who loved us back home would often say, “We wish you were here at home so we could take care of you.” It happened so often that I almost expected to have to set up a visitation schedule to slow the flow of friends and family through our front door.

But the reality is that coming home has been very lonely. Because we can’t go out, we probably see less of the people we love here at home than we ever did before. I don’t want to sound ungrateful. A lot of you have caught us in the halls at church to express your love and many of you have offered help in the way of meals or help cleaning. But it is easy to forget that left at home is a very social 6 year old. I often feel like Brian and I are his only friends. And finding the balance between taking care of my own responsibilities and making sure he has time every day where he is shown how very loved and important he is has proven to be a challenge.

Besides that, it is hard to imagine the kind of life we live unless you experience it. Everything we do has to take into consideration how and by whom Patrick will be taken care of. We don’t just go to work or to dinner or to church. We can’t just call up a friend and say “let’s get together.” We skip most extracurricular events. We don’t get to be apart for school. And when Brian travels this summer, I will be the only wife staying home.

When we DO catch you in the halls or on the street somewhere, we are having a conversation that we know is going to be very brief and so we know there is a choice between trying to take time to answer questions about Patrick and sharing our lives honestly and sincerely wanting to spend time hearing about and catching up with YOU. We don’t want every adult conversation we have to be consumed with medical updates, and so we may skim or skip over details. One friend accused me of trying to hide how I’m really struggling. I’m not trying to hide anything. I just don’t want to waste our conversation.

You won’t read as often about the things that made me cry on this blog right now. We have a different set of frustrations here at home. I don’t want to put in print the experiences where someone I love might have innocently hurt my feelings. I know that hurt feelings have much more blame in the person feeling them. I’ve learned over the years that people are trying to say things that are supportive and helpful and if I look between the lines I see and hear and feel love.

Because soil contains bacteria, gardening requires mask, gloves, and overclothes. Patrick still thinks it is worth it to help.

Because soil contains bacteria, gardening requires mask, gloves, and overclothes. Patrick still thinks it is worth it to help.

But there is one thing I have encountered a few times that I’d like to talk about because it is hurting and I don’t think you know.

I’d like to ask you to stop trying to find my silver linings and rainbows.

There was a marvelous sermon given in LDS General Conference a year ago. If you’re facing hard times, and let’s face it, who isn’t?, I highly recommend that you read this talk in its entirely. You’ll find it here. In it, President Dieter F. Uctdorf said:

We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?

It took me a lot of years of hard trials to learn that happiness is not something that comes to us after trials have passed. Happiness comes from learning to be grateful for our blessings right now. It comes from learning to see God’s hand in our lives. Right. Now.

That doesn’t mean that if you are struggling, if you are mourning, if you are going through hard times right now that you are ungrateful, unfaithful, or unhappy.

It has been a hard couple of weeks. We took a gamble and took Patrick out a little more than usual two weeks ago and he got sick. Being sick made him frustrated and moody. It meant even more limitations for him, which made him angry. We had a week of daily appointments.. appointments we shouldn’t miss and so we gloved and masked and we still went, which only made him feel worse. In the times inbetween, Patrick expressed his anger by acting out against the only people he had to vent to, his parents. Steroid fueled kindergarten anger is hard to deal with. Add to that the sleepiness caused by antihistimines and the insomnia caused by prograf and a stuffy nose? And monitoring his oxygen saturation periodically while he slept to be sure he was still doing ok. And, well.. you can imagine.

Thankfully, his prograf levels were accidentally low when he got sick and he was able to fight off the illness without needing medical intervention. But just as he got better, Brian caught the cold. He was down for the weekend, and then I got sick, too. Remember, we all spent the winter in fairly sterile settings and so none of us has immunity against this year’s viruses. Well, on the heels of a stressful week with Patrick, my body was fairly weak. I have spent the last few days fairly sick.

And it has rained most of the week. So we have been stuck inside more than usual. And, as Patrick has felt better, his body’s sensory system has been craving movement, so this was not a good week for that.

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If you asked me this week how Patrick is doing, I probably would have told you about those things. Because that is what has happened this week and it helps me to talk about my struggles.

That’s the rain in our lives right now. And friends are there to talk about the rainy times, too, right?

However, right now when someone asks me how Patrick is and I mention that we’ve been stir crazy, missing school, easily sick, wondering why we are struggling to hard to set up playdates, lonely, etc., I can almost predict the response. The person I’m talking to will ask me how much longer things will be this way. They’ll point out that Patrick’s almost 6 months post transplant and wonder when his medications will change and his medical team will allow him back in public. They’ll try to show me the end in sight.

I know you mean this well. You don’t like to see us struggling and you hope that relief is coming soon. You want to point out that there’s a rainbow just around the corner or a silver lining in the clouds.

But right now, that isn’t what I need. I need someone to walk with me in the rain. I need you to help remember how much I love my raincoat and umbrella. I need us to look together at how rain makes the earth clean and helps the flowers grow.

In other words, I need you to listen to me about my struggles and maybe try to help me figure out how to get through what needs done this day and this week. And maybe to listen about the good things too.

Because a lot of good things happened in the past 2 weeks. We got set up with Primary Children’s liver transplant team so that now, we have a transplant coordinator who checks Patrick’s labwork and calls me to see how he’s doing and I don’t have to bug his very devoted doctor with every little question and play intermediary with the transplant team in Nebraska.

We also saw Patrick’s rehabilitationist and neurologist this week. They both assured me that, while Patrick’s cerebral palsy and other symptoms of his brain injury aren’t gone, it hasn’t been made worse by all he’s gone through lately. He doesn’t want to wear a brace right now and getting to physical therapy would be difficult. And they both assured me that, given all we have gone through recently, it’s ok for that to be on the back burner right now. They’ll keep watching for trouble. Someday we’ll get back to working on strengthening and stretching and improving his gait so he can run and climb. But for now, I shouldn’t feel guilty for not doing more about it.

Also this week, Patrick and I went to a teacher supply store and bought some math manipulatives. We managed to hold 1-2 hour study sessions every day without major tantrums. Patrick counted and added the new pattern blocks without getting upset with himself or me. And his teacher was really impressed when she came by the progress Patrick has made in reading, writing, and math.

I taught Patrick to ride his scooter. We laid in the grass and watched the clouds.

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But I might not get to telling you about those good things that happened right now if you ask me about Patrick’s current struggles, and I answer honestly, and then we spend our brief conversation time talking about what things might be like when the rain stops. I promise, I may be wet and soggy and tired.. but I don’t so much mind the rain. And let’s face it, we’ve got a pretty rainy forecast ahead of us.

Our trials don’t mean that we need all of our responsibilities taken away. Yes, it may take more coordination for me to participate now than it was before I was a mother. But it is also healing to do normal things. I got to go to a youth activity and teach teenagers how to do data entry on vital records used for geneology this week. I had to get a babysitter, make special arrangements for dinner, and work around Patrick’s school schedule. But it felt good to be out among people and sharing my talents. It is nice to be included. I’d like to see you. I might have to suggest a less crowded venue for an outing or we might have our conversation interrupted two dozen times by my 6 year old. My life is messy right now. But I’d like to share it with my friends.

You might even learn something I haven’t posted in this blog. There is a lot I don’t write about.

Good things are on the horizon. Patrick’s 6 months transplant anniversary is coming up this week. A lot of things will hopefully change for the good. We are talking about when and how to go back to school and church. We also know that it isn’t going to be easy for Patrick, who has always struggled with routine and crowds and sitting still, to come back to them after such a long break. So we’ll need to take it slow and it might not seem to go well for a while.

I know that chronic disability is hard to wrap your mind around. Everyone likes happy endings. We like resolution. We pray for and believe in miracles. We don’t like people we love to struggle with hard things for years and decades and lifetimes. And I know that when you think of transplant you think of it as healing, a cure, and end to struggling. And so watching this be a long recovery and lifelong challenge goes against all of that. God promised joy in this life. But He didn’t promise us a life free of sorrow. Quite the opposite, in fact. He promised to refine us, and refining takes fire.

But I promise, it’s ok. We are ok with it. We can be happy in the rain.  But rain is best when you’ve got someone to splash in the puddles and share an umbrella with us. I promise, I’ll listen about your storms, too.

I told my friend that there were hard things at the Ronald McDonald House that I sometimes miss it. I miss being surrounded by people who were all facing the same struggles and so able to mourn together. I miss those friends who made the best of hard times with me.

But I think I miss it most because I didn’t feel like I needed to sugar-coat my trials. Because often it isn’t until I say things out loud and see the look of pity on someone’s face that I even realize that it might be pitiable.

President Uchtdorf again:

We can choose to be grateful, no matter what.

This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as beautifully in the icy landscape of winter as it does in the pleasant warmth of summer.

When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace.

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My friend who lost her son this week is raising funds to help cover his funeral expenses. His fundraising page can be found at: http://www.youcaring.com/memorial-fundraiser/jalen-boyce-s-medical-memorial-fund/342215#.VTg_itc1flc.facebook

Transplant Day 149 and how liver enzymes meant a weekend in the hospital

Hello from “The Hotel on the Hill.” If you are new to our blog, this is the nickname for Primary Children’s Hospital which is situated in the foothills of the Wasatch mountains on the edge of the Salt Lake Valley.

We have been here since yesterday afternoon. Here’s why.

A few weeks ago, Patrick’s nurse checked his temperature when he came to draw his morning labwork and it was a little high. Later that day, his labwork showed elevated liver enzymes and a slightly higher white count. These two signs together usually mean an illness and we thought that maybe Patrick had a bit of a stomach bug. The numbers stayed high for a couple of days, then went back down. We called Nebraska Medicine and they said they would check some viral studies to see if something was brewing. No one seemed too concerned.

For the past several weeks, this pattern has repeated itself. Once or twice a week, Patrick’s temperature has gone up. His liver enzymes go up. Sometimes his white count goes up. Sometimes it doesn’t. And Patrick never got sick. And no one ever seemed really worried.

Well, this Tuesday, when they checked Patrick’s labs, his liver enzymes were up by almost 100 points. His white count was normal this time. His temperature was 99.7. He was acting fine. But they also finally got around to those viral studies which showed no concern for the viruses they suspected might be to blame. Also, Patrick’s prograf level was a touch high and the transplant team decided to drop his dose by half.

I texted Patrick’s local doctor, Dr. Jackson, to let him know about the change and that night he called me.  He suggested that the one other thing we hadn’t checked for was infection in Patrick’s central line.. maybe some small amount of bacteria seeded there. So the next morning Patrick’s home nurse came by and drew cultures and repeated liver enzymes and prograf levels. The liver tests came back pretty early. The enzymes that had been high were the same, but another marker was now up, too.  And Saturday morning, as we were getting ready for the day, we got a call from the GI fellow on call who said that Patrick had tested positive for a line infection.

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Well, Patrick was still feeling fine. So we asked if we could still take him to the Make-a-Wish easter egg hunt we had gotten him up early for. Then I called Dr. Jackson to figure out how exactly to proceed. We talked about starting treatment at home, but Patrick needed some vancomycin.. a drug we have a love/hate relationship with because it clears infections, but Patrick’s pretty allergic to. It gives him a rash, so he has to have benadryl. It also makes his belly quite sick and we didn’t know how a new gut would take it.

So, we made a plan to bring Patrick inpatient for the weekend while we start antibiotics and figure out what comes next.

Because he is still so soon after transplant, we are making our first stay in the cancer/transplant unit, or immune compromised unit. (ICS). At first, I was worried they might kick us out after we went through all the work to make an infection-risk-minimal admission. They don’t accept transplant patients after the initial immune suppression and they didn’t know us and thought maybe someone was sneaking us in. But once they heard “5 months since transplant” it was ok.

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They are experts with central lines here, which is nice. They don’t do g-tubes or ethanol locks often, though. Apparently only short gut and related GI diagnoses get the full gammut like we do. So there’s still some teaching to do.

The nice thing is that they keep the rooms super duper clean and, really, the nursing staff here is in general a little more experienced.  The techs are really on the ball making sure things are cleaned up, diapers charted, extra food collected, teeth brushes, baths given, etc. There are things in this unit that I would have killed for in Nebraska. Like washing machines down the hall. (Last night Patrick had a diaper leak and they just showed me to the washing machines so I could clean it up.) And bathtubs. Patrick was very excited to take a bath here this morning. And needleless hubs with scrub caps and a policy of scrubbing the hub for a full 15 seconds and then letting it dry.

The room is smaller, but these rooms feel like home. And the parent bed is comfy. And the view is spectacular. And the cafeteria is just downstairs and still serves most of our comfort foods, even though they’ve just remodeled.

So it’s different, but it’s home.

This has been a very long week. We are all very tired. Monday night, my cell phone rebooted and wouldn’t load its operating system afterwards. Brian plugged away at it every chance he got, but there was no fixing the problem. So I had a few panicked days where I could see abnormal labs but couldn’t text as I normally do to communicate with Patrick’s medical team. Thankfully, Google has amazing customer service and pulled off a warranty exchange before Friday.

Tuesday night, I started to get an ache at the back of my throat. I hoped it was allergies, but was pretty sure it was a cold. I woke up sure I was sick. So I masked and gloved up, stripped and washed all my bedding, did as much laundry as possible, clorox wiped everything in sight and just tried to muddle through with as little exposure to Patrick as possible. It took round the clock mask-wearing, lots of handwashing, lots of running outside or to another room to sneeze or cough of blow my nose, and lots of picnic lunches (so I could eat without breathing near him) to get through the week. Thank goodness family was in town visiting. Two nights in a row, Brian took Patrick to dinner with his family, leaving me home to rest, clean, eat, and breathe mask-free.

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I was still sick and masked yesterday when we came up here. I was almost afraid they wouldnt’ let us into this unit with me sick… but I’m following the same precautions the rest of the staff here does so it turns out it was ok.

Thank goodness I am better today, though. My ears are so tender from wearing a mask all day and night that I can barely stand to wear my glasses and putting a mask on this morning to walk Patrick to the playroom almost made me cry.

It hasn’t been a better week for Brian, either. Coming home from work and taking Patrick away immediately is not easy for him. And he has some some busy weeks, preparing for some organizational changes heading his way.

So we were beyond grateful yesterday morning when Patrick’s doctor asked if we’d like to wait and come into the hospital at 1:00. We had promised and easter egg hunt and we had a great time. Make a Wish throws a great party and no one looks twice at you wearing masks and gloves and not eating any candy. Patrick was so very excited to meet the Easter Bunny. We got his face painted. We had a great time in line with the clown making balloon animals. (Have I mentioned Patrick loves clowns?)  The egg hunt was only mildly interesting to him. He gets tired walking still and so running around hunting eggs wasn’t the most exciting idea.

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The eggs were filled with candy and Patrick was a bit disappointed. But we knew we were headed to the hospital and were feeling generous and Brian had a coupon. So, we offered to let Patrick trade his candy for a prize and we headed to the Disney store.

We talked briefly about heading home and doing our chores but opted for some family fun time instead. We started at the Disney store where Patrick picked out a Mickey Mouse train set. Then we went to a built-to-order pizza restaurant and let Patrick design a cheeseless pizza. He loved it and scarfed it down and packed up his leftovers to go.

We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.
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Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.

And then, it was time to come up to the hospital.

And it was strange being admitted to a new place that is different but familiar. We had an ok night. Patrick didn’t nap on schedule. Not a surprise. But after they gave him benadryl at 5, his eyelids got droopy.

I turned on a broadcast of the LDS Women’s Conference right after Brian left to go get things cleaned up and packed up at home. They started off with a video presentation of a song that Patrick knows from church, The Family is of God. View the video here. Knowing he loves these things, I pulled him up on my lap to watch. He snuggled right down and his eyelids started to droop. The song ended and I told him to stay cuddled and I’d get him a show on his tablet. Well, his tablet was slow and before I had a show loaded, he was asleep. He slept on my lap for 2 hours. I got to bask in a quiet evening of gospel and sisterhood and uplifting messages about the importance of motherhood and womanhood and family. The entire conference is available to watch, read, or listen to here. Largest women’s conference in the world. Totally worthwhile and inspiring if you have time.

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And then, he woke up was very mellow the rest of the evening. We watched movies, played with syringes, cuddled on the bed. At 11, he seemed tired enough finally to sleep so I turned out the lights and he was out in 5 minutes. He slept all night except for diaper changes and woke up with the sun. (Much to my chagrin).

Rounds came early this morning. They said that he had immediately responded to antibiotics and his liver numbers were already trending down. No cultures have grown out, though, from the labs drawn right before antibiotics were started and we can’t quite explain it. The doctor suggested that another option for the off liver numbers being bacteria from Patrick’s gut gettiing into his liver through the gastric bypass created at transplant. I guess we’ll explore that more.

But the long story short is that Patrick seems to be responding well to treatment and shouldn’t be hospitalized long. And we’ll have more conversations about the cause of the problem and the fate of his line in the future.

It’s been a quiet Sunday. Patrick is so much calmer in the hospital now. I don’t know if that’s from practice being in the hospital and entertaining himself alone or because his sensory processing disorder is less of a problem since transplant or because his nurse last night started giving him all the used syringes and passed along in report to continue doing so and he has like 30 of them now, plus extensions to connect them to and that always keeps him happy. But he’s quiet and once we’d all had a nap we were all happier.

That was a lot of story to tell. I really should blog more often so you don’t have as much back story to read through. Oh well.

“Do you know deep in your heart that your Heavenly Father loves you and desires you and those you love to be with Him? Just as Heavenly Father and His Son, Jesus Christ are perfect, their hopes for us are perfect. Their plan for us is perfect, and Their promises are sure.” – Carole M Stephens, Relief Society General Presidency, LDS General Women’s Conference, October 2015

 

Transplant Day 114 and settling in

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Patrick and Max rediscovered each other this week. Starting with this moment. Patrick got Max up in the morning and tried whistling for him. Max got it and started singing back.

Whew. It’s been a week that we’ve been home. In some ways, it seems like this week has gone very slowly. In others, it has flown by.

Settling in at home has been a lot of work. For one thing, our vanload of possessions from Nebraska didn’t fit into our new home. I will admit that I had more than one panic attack over the pile of boxes sitting in my living room waiting for me to clean out and make room for their contents. It seemed that no matter how hard I worked, there were always still so many boxes. We finally got the last of them emptied and put away last night. Too bad it took filling another pile of boxes with things to be sorted through and donated or thrown away. At least that pile is in the basement at the moment.

But unpacking, though it took the bulk of my physical effort, was only part of the job this week. I spent a good portion of Tuesday morning sending e-mails and making phone calls. We get some reimbursement for Patrick’s travel home.. just some, but some is better than none and needs to be claimed.

And then there was homecare. It should have been easy to get homecare orders here. But our homecare company wouldn’t accept out of state orders. They had to be rewritten by Patrick’s doctor here. However, those orders got lost somewhere along the way. (And, research turns up, would have been incomplete anyway.) So Thursday morning was devoted to scanning my discharge orders and prescription medication lists, etc. and making phone calls to make sure that medical records actually arrived. Friday, a week after we left Nebraska and our last day of supplies, we finally got a delivery.

Labs with homecare nursing went a bit smoother, but I’m still not convinced that a copy of the results is being routinely faxed to the team in Nebraska.

Other projects included e-mailing Patrick’s school to start working on getting him an education plan, grocery shopping so we weren’t entirely dependent on others to bring us meals, talking to insurance to make sure preauthorizations were all set up, and getting a referral to feeding therapy.

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These two are now inseparable. Now that we don’t have to worry about Max biting TPN tubes, and Patrick is learning not to lock Max in random rooms around the house. Max only has to be caged when he gets bitey.

On Thursday afternoon, the weather was beautiful and Patrick was pretty burned out on watching mom unpack boxes and talk on the phone. So after I made it through the morning business, we decided to take a picnic lunch to the park.

Patrick chose some of his foods. Veggie straws and crackers. I picked more nutritious things, too.. Chips and guacamole, chicken nuggets, and an assortment of dipping sauces to experiment with.

Then, I let Patrick pick a park. He asked for the one next door to his school. We didn’t think about that it was by the school until we were there. Then he wanted to go visit his friends at school. School was just letting out and it was kind of hard to have to say no. Thank goodness one little boy came over to play. He wasn’t a best friend, but he was a familiar friend and then helped ease the pain a little.

So did lunch. Patrick ate and ate and ate. He discovered he likes veggie straws in ketchup, but wasn’t a bit fan of the chicken nuggets. That’s ok. As long as he tastes the new foods, I’m happy right now.

Friday we had our first post-transplant appointment with Patrick’s GI, Dr. Jackson. Have I mentioned how much we love that man? He scheduled us in on a day that his clinic was closed. He spent and hour and half making sure that he learned all he needed to from us and that we had time to ask all of our questions. Patrick is in such good hands.

We talked about making a plan for when Patrick gets sick to allow him to bypass the emergency room as long as his ABC’s (airway, breathing, circulation) are intact. We went over Patrick’s medications and new anatomy and diet. We asked about sending him back to school, and found Dr. Jackson to err on the side of caution where our hearts are more than the team in Nebraska does. (We really want to wait out cold and flu season.) He let Patrick be the doctor and check his heartbeat and eyes and ears as well.

The general gist of things is that Patrick is doing well and Dr. Jackson is committed to helping him continue to do so. And it was nice to be back with a doctor who loves teaching. I now understand why and how some lab results are followed.

One of the very rare moments when Brian got to join us for naptime and Patrick let me out of the bed. Usually, I lay with Patrick and read scriptures through his naps.

One of the very rare moments when Brian got to join us for naptime and Patrick let me out of the bed. Usually, I lay with Patrick and read scriptures through his naps.

And so, here we are. Tomorrow’s plan is to get labs, to change a central line dressing, to try to clean up the pile of boxes in the basement, to make a meal plan, to do some mommy school with Patrick, and to cook dinner (still a novelty for me.)

Oh, and to spend a LOT of time barefoot. I’ve had enough of having to wear shoes and socks to last me a good long time. If it weren’t for labs, I’d maybe even try spending the morning in pajamas.

———-

One more thought. A lot of people are asking rules for visiting Patrick. I really appreciate the caution about keeping him healthy. Here is what I’ve posted on the front door.

Our son recently received a transplant. Please help us protect his gift of life by keeping germs away.

Please advise us if you have recently had or been exposed to a contagious illness. This might include:

  • Fever
  • Runny Nose
  • Cough
  • Sore throat
  • Vomiting
  • Diarrhea
  • Rash
  • Pink eye
  • Nausea or dizziness

You may be asked to wash your hands, wear a mask and/or gloves, or reschedule your visit for another day.

Please do not visit if you have an illness or infection treated with antibiotics in the last 48 hours, or if you have been immunized with a live vaccine (Measles a.k.a. MMR, Smallpox, or FluMist) in the past two weeks.  Thank you for being immunized.

In other words..if you are actively sick or think your odds of getting sick are getting high, you might postpone your visit. If you’ve been sick and are feeling better, then ask. Good handwashing is probably good protection the majority of the time.

Transplant Day 10 and the Sabbath Day

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

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

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

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

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

 

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

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

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

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

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

Breathing treatment while sitting at his craft table.

Breathing treatment while sitting at his craft table.

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

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

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

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

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

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

Transplant day 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.

Mission Impossible

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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