Today was Patrick’s last day of kindergarten. It was over almost as soon as it began. I think it finally sunk into him this morning what I was saying because he was very worried as he got ready. Worried about missing his friends and worried about there not even being familiar teachers in summer school. To help with a little closure, I did a quick google search and found some printable thank you notes he could color for his teacher and aide. And then we were off.
I don’t know much about his day, except that he came out laden with gifts. His special education teacher came out with him at the end, too, which I thought was very thoughtful of her. He was given the “jolly rancher” award for always being so happy. And we had to linger a little bit at the park by the school to let him finish a popsicle he’d been given. Then, we met Brian downtown where we went out to lunch to celebrate the occasion.
It hardly seems real, except that getting Patrick needs several bags of supplies and safe snacks for school and all of that is in my kitchen now.
The last day of kindergarten represents the kickoff of a very big transition week for us. In less than a week, Patrick will have his broviac line removed. I am counting down the end of a week’s worth of those supplies in amazement and a bit of fear.
I’ve had some horrible dreams this week. I dreamed that Brian was on TPN, only it wasn’t available and his blood sugar was crashing. I dreamed I had a line that needed changed to a port and I felt so helpless and out of control trying to convince the nurses in the hospital to follow the pre-op directions I’d been given about my medications. It made me realize just how Patrick must feel, which was kind of crushing. Then I dreamed that Patrick was in surgery for his line but 5 hours had passed. That is really REALLY bad for that kind of procedure and brought back some horrible memories. Have I mentioned that it’s common for patients and caregivers dealing with this chronic illness, especially transplant, to suffer from a form of PTSD?
I’m just trying to push forward and take care of what needs to be done to get ready for what’s coming in the next couple of weeks. It is hard to keep them in the right order when new things keep needing my attention.
For example, yesterday I dropped Patrick off at school and ran to Walmart. The goal was to pick up a fruit for dinner and some entertainment for the plane ride to Nebraska. But as I headed to the checkout, my cell phone rang. It was the district nurse calling to give me a heads up that a group of district nurses had met to review the medical needs of students for the upcoming school year. And they had determined that Patrick no longer requires full-time nursing at school.
This is great news. He’ll still have an aide to help him with his many needs during the day. But it’s kind of bad news, too. It means that he no longer has to attend the medical hub school that he’s attending. And they wanted me to tell them where I want him to attend next year.
That’s not exactly a simple question. The school next to our house is quite small and not really given a lot of resources. Sending Patrick there would be very complicated and require bringing in a small army of people to work with him. I think we’ll be asking for an exception to be granted and for him to be able to continue at Whittier, at least for one more year.
It also means that I need to add making a list of care that an aide needs to be able to provide to Patrick, independent of a nurse. By Wednesday, when we’ll meet to also work on revising his IEP to get him through till the next IEP meeting.
In addition to that, Monday Patrick and I will meet with Patrick’s favorite Child Life specialist to help to teach him about having a port. On Tuesday, he’ll have his end of year kindergarten assessment. I’ve got to get orders for supplies for Patrick’s port ordered and delivered before we leave, and prescription refills ordered before we leave.
And in the midst of all of this, our church responsibilities have us pretty busy this weekend. Especially for Brian.
This is just the beginning for this summer and I’m having a hard time wrapping my mind around all of it.
But at least one thing is under our belt. Patrick’s a kindergarten alum. Now if we can just get him caught up a bit over the summer and make the right school plans for next year.
I’m also coming to the realization that summer is coming and that, in the past, I’ve been an amazing mom in the summer with lots of plans for fun and education. I am nowhere near that prepared this year. I am just trying to get through the next couple of weeks. But my mind is starting to hatch some plans and I hope I can make some of our traditional summer magic.
It is disorienting to realize that next week is kindergarten’s last week of school. We only just started and it’s almost over again. I feel really bad to be just gearing up while teachers are working to try to take care of the mountain of things that need to be done for the end of the year, I’m here trying to squeeze every last drop out of the few weeks that we have available to us.
I am amazed at all that they ARE doing for him, though. For example, I noticed that Patrick’s class was at recess every day when we arrived. So I asked and they revised his IEP to allow him to go to recess with his friends every day. He is in HEAVEN getting that extra time with his friends. And I understand that he is doing better in class, too, as a result.
Also, I’ve been working all week with his special education teacher on getting the forms completed for him to be able to participate in Extended School Year (a.k.a. summer school). They hold 3-day weeks on 4 weeks during the summer. He’ll attend in the morning. The goal is to keep up the momentum that has just started again.
They did offer one amazing thing that I hadn’t even imagined as a possibility. There is a therapy pool at the school. And, because by the time summer school starts he won’t have a broviac line, Patrick’s doctors have given him the ok to work in the pool. It feels like this little piece of normal… my son being able to be in the pool during the summer. Even if it came about in the most abnormal possible way.
Speaking of doctors, we had a follow-up with Patrick’s GI this week. His dietitian came in, too. It’s the first time we’ve seen her since transplant. I wondered if she was amazed to watch him eat a kids meal while we talked. His growth charts look amazing. I think it’s the first time I’ve really looked at one post-transplant. He’s growing at a normal rate. He’s in the 50th percentile.
They ordered some labs to check to make sure that his vitamin levels and overall nutrition are still good as he’s learning to eat on his own, but doesn’t exactly have a traditional balanced diet yet.
Also this week, or maybe the end of last week, I talked to the team in Nebraska about Patrick’s next follow-up with them. We scheduled an appointment in June to replace his central line with a port. (This is why he’ll be allowed to swim, by the way. No more external central line.) We will be going out the first week of June and it will be an outpatient procedure.
I thought we’d have clinic, too, but it sounds like they feel we’re doing a great job communicating by phone and don’t need the extra visit.
So it sounds like we have a game plan for our summer. At least the start of it. Patrick’s last day of school is the last Friday in March. June 1, he’ll have end-of-year testing. June 3, we’ll meet with the school to make plans for next fall. That night, we’ll get on a plane and fly to Nebraska. The next morning, he gets his port and we come home that weekend.
The next week, Brian leaves on a business trip to Norway. And the week after that, Patrick will go to his first day of summer school. He’ll have two weeks on, then off for the July holidays. Then back again. Brian has a pioneer trek with the youth in July and another international business trip in August. And before we know it, it will be time to come back to school.
I’m trying to pull together some materials to keep working on mommy school in the down-days. I’ve let Patrick develop some lazy at-home habits this month but, really, we have a lot of ground to cover over the summer. Hoping that the extra respite time while he’s at school will give me a breath of energy to keep up with all the rest.
It is amazing to me to consider how far Patrick has come in the past 6 months. How much our lives have been changed in the last 6 months.
We decided to celebrate Patrick’s transplantiversary and half-birthday in grand fashion. After all, a transplant is an awesome birthday gift but a really sucky birthday party. Patrick deserved a party.
Right before transplant, Brian won a weekend getaway at a work party. So we finally redeemed that trip this weekend. Brian took Thursday and Friday off of work and we drove up to Bear Lake. Patrick was excited about the trip but very confused that our vacation didn’t include a plane. Let’s face it, we often fly off somewhere and THEN drive 3 hours or more once we get there. So a 3 hour drive, while that was a pretty big trip for me at his age, was a pretty small thing for him.
I still can’t get used to packing without TPN. I was able to pack all we needed with each of us only needing a small carry-on bag. I did, however, have two big bags of food that I took with us. Because Patrick is a hungry little monster and having food always available is kind of important. We knew that it was off-season in Bear Lake and we weren’t sure what food options we’d find for him. And besides, it was fun to have lots of snacks.
Patrick doesn’t believe in sleeping in the car. But sometimes, he just can’t help himself.
The trip was a much-needed dose of rest and family fun. We drove up Thursday afternoon and arrived in the early evening. They were still working on cleaning our room when we got there, so we opted to go for a drive. We ended up in Montpelier, ID for dinner at a little pizza joint. They were kind enough to make Patrick a little cheeseless personal pizza.
I love seeing finished plates that look almost like what other kids leave behind.
It always takes time to get Patrick settled in a new place. Hotel rooms are especially problematic. But we did succeed in finally getting him settled down. We stayed in the family suite so we could have a bathtub and a fridge. That meant, however, that instead of a bunkbed, Patrick had a fold-out couch. Have I mentioned Patrick won’t fall asleep away from home without me? Yeah, my back was pretty sore come morning. Getting too old for fold-out couches.
The next morning, Brian had planned a big surprise for Patrick. After a pancake breakfast, we went to a vacation rental shop and picked up a 4-seater ATV. Patrick has been jokingly asking me if we could drive our car up the side of a mountain for a while now. I think he was surprised to find out that it was actually possible. My thrill-seeking, rough-and-tumble, car-loving boy could barely wipe the smile off his face. He laughed his head off through all of the roughest parts of the path. Finally, we ended up off-roading in some snow and decided we were all tired. So we headed back down, stopped in a meadow for a snack, and then Patrick voted it was time to be done with the mountain.
We ended up stopping and letting him just play with the vehicle for a while before returning it. And then, because we had time and because the vehicle was muddy, ended up driving it over to a car wash.
Patrick is a big Bob the Builder fan right now. So he was really excited to find himself up in rural country where there were also lots of construction vehicles. We had a great time spotting the real versions of diggers and cranes and dump trucks.
He was a little less enthused about visiting the lake. I didn’t think to bring him a camera along. (I need to remember he wants to be a photographer). And he wanted his dad’s. Eventually, though, we showed him the fun of throwing rocks in the lake and then he was sold.
Inbetween outings, we hung out in our hotel room. Amazingly, after the first night, Patrick settled down and was happy to be there so we got the chance to watch a movie together while he played. We also explored a couple of local cafes and I was really proud of Patrick for trying food everywhere we ate. I was also very impressed that they restaurants were all so willing to help us invent Patrick-friendly foods from the items on their menus.
And then, Saturday morning, when Patrick got up he told me that he loved our hotel and didn’t want to go home.
But we had to go home anyway. And, as with any vacation, once we made it home we were all just happy to be here.
Saturday evening, we let Patrick pick his birthday dinner. He threw me a loop by asking for chicken soup and grilled cheese. (With an egg allergy, we can’t just open a can for this.) Thank goodness Daddy was up for the job.
And after dinner, we had birthday cupcakes. We sang Patrick happy unbirthday and he blew out his candle before I could explain making a wish.
Enough wishes have been granted this year for our family anyway. 6 years. And 6 months.
This picture was taken 6 months ago at Pumpkin and Mustache Day in Patrick’s kindergarten class. I didn’t know it then, but the Halloween parade and party the next day would also be his last day of school.
6 months ago, I tucked him into bed and then I went and wrapped up his birthday presents and I went to bed, but before I fell asleep my phone rang and our lives changed forever.
I dare say, at least as far as I can judge right now, for the better.
Today, I had an IEP meeting with Patrick’s school. Can I tell you what an amazing school he is in? They were completely behind me asking for a slow transition back into regular school. In fact, they were good with just about everything I asked them to consider. This meeting was amazing!
Here’s the gist of things. There is a month left of school and Patrick’s immune suppression goals have been adjusted down because it’s been long enough since transplant to try. And the transplant team said that about this time we ought to consider starting to ease him back into the normal life that they did the transplant to hopefully give to him.
So, after a very thorough discussion today, the decision was made to start letting Patrick attend school for an hour each school day. He’ll attend the last hour of every day. He’ll spend the first half of that time working with a special education teacher to help him to make up as much ground as possible. And then he’ll spend the last half of the day with his kindergarten class so that he can work on relearning the classroom routine and social skills. Also, once a week, I’ll bring him in a little early so that he can spend time in occupational therapy as well rebuilding his strength, working on writing and other fine motor skills, practicing eating, and so forth.
Because he’ll only be in school part time, he’ll also still qualify to work with his in-home teacher.
And, when the school year is done, he’ll take a short break, and then get to participate in the extended school year (or summer school) program this year at another medical school that is actually even a bit closer to our home.
The mood in this meeting was so positive. I genuinely believe that this team is happy that Patrick gets to come back to school and eager to help him succeed in every way that they can. How many people come out of an IEP meeting saying that?
That doesn’t mean that his IEP meetings aren’t still intense. There is a lot to coordinate and I am constantly amazed at the efficiency with which they run these meetings. (Also, with their stamina to do so many back to back to back at this time of year. They had already done several that morning with several more to go.) We made plans for how to drop Patrick off and what to do if classmates are sick and an aide to be with him in the classroom and what physical activities he can participate in and what to do when he needs to stay home and how to make sure that he gets the absolute most bang for the buck out of his hour a day at school.
For the rest of this school year, they’ll be reimplementing the amazing IEP that they wrote for him the week of his transplant. Then we will reconvene in a month to figure out where he is on his goals and what the best plan for school next fall will be.
The most amazing part? I thought we’d be waiting a week or two more for medication changes but the team in Nebraska says that because he kept swinging too high, they brought his dose down and he’s already there. That doesn’t mean he’s not immunocompromised. But this is about the best it’s gonna get for a while and so we might as well let him live.
We are taking the next few days as a family to celebrate Patrick’s 6 month transplantiversary and half-birthday (because, face it, transplant is an awesome birthday gift but a sucky birthday party.)
And then on Monday, Patrick starts school.
I’m trying to wrap my mind around gathering all of the supplies, emergency plans, paperwork and other little details I need to have ready by Monday at 10:45 a.m. I’m hoping this is as good of an idea as it sounds. That he has the strength. That he can stay healthy.
It’s strange to think that a month ago, I answered a phone call and our lives stopped and reset.
And now, 6 months later..to the day.. we’re trying to kickstart life again.
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
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.
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.
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.
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.
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.
It’s a quiet snowy afternoon and seems like time for an update. This is a busy week comparatively for us. With spring break over, Patrick’s back to a regular schedule with his home hospital school. In this district, they have assigned him a teacher for 2 hours a week. She comes one day a week on Tuesday afternoon and stays and works for 2 hours.
When I heard that schedule I was actually really upset. We had 3 hours a week scheduled as 3 one-hour sessions when we were in Nebraska. Patrick rarely stayed on task for the whole hour. We often didn’t get all 3 sessions in. And I really wondered if this schedule could possibly work.
I would never have expected how well this would work. Ms. Emily is a special education teacher in a “behavioral” classroom in another elementary school in the district. That means that it’s no longer just me with strategies to keep Patrick on task. His teacher is really good at finding a balance between pushing him to do hard things and finding ways to turn breaks into educational opportunities or “teaching play.” It’s teaching Patrick to ask for a break when he feels overwhelmed or frustrated and that is a skill that will go a long way for him.
I really worried about the long sessions, but she’s good at keeping a variety. Patrick earns the chance to play educational games on her iPad when when he completes more challenging work and that seems to make the time pass. (And gives us moments where she stops and teaches me ways to work on the same skills at home.)
I think the best thing, though, is that she is bringing me tools that actually are helping me to make good use of the time I spend teaching Patrick. Not that I wasn’t doing my best before. Thank goodness for the resources of the internet or Patrick would have been much further behind. But there is something to be said for materials prepared by a professional educator for your child’s needs.
For example, she brought me a stack of sight word flashcards. They are printed on goldenrod yellow paper which she says is the color our minds learn best reading from. Patrick was pretty resistant to these when she first used them to try to test his knowledge. But she started to plant the idea of sounding out words to him and pointed out a few sight words that he could use that skill on. Patrick and I sat down that week to run through the cards and before I knew it, Patrick was figuring out words by sounding them out, and asking me for more cards to work with.
He is practicing with about 20 sight words cards right now, most of which he’s mastered at a glance. As he gets good at these, we just add a few more in at a time and soon he’ll have that whole stack memorized. She added to that showing me how to use some touch prompts on his arm to help him sound out and blend words together and he’s really starting to be good at reading most any CVC word, new or not.
In the same session, she gave me a stack of worksheets that she’d cut out of a handwriting notebook. And two plastic page protectors. I really doubted this one… but as it turns out, Patrick is totally in love with this particular workbook. I looked online to just get a copy of it and it’s about $100 off the shelf. Basically, it’s pages where he practices tracing numbers. But it has just the right mix of activities that catches his interest. Trace a number 6 times and then practice drawing that many pictures of a totally simple object for a kid to draw, for example. Who knew Patrick would love drawing suns and balloons and candy canes? And on the other side? We practice counting and patterning. I really need to make it to a teaching supply store and get some tanagrams and counters to match the workbook.. But he doesn’t seem notice they’re missing so far.
This work has been reinforced by another little bonus this school district threw in. To honor Patrick’s IEP, they send an occupational therapist out to work with him for 20 minutes a week. 20 minute, again, sounds like nothing. I feel bad for the therapist who devotes 2 times as much driving as she spends teaching. But her support in handwriting and other fine motor activities has taught us a few helpful things like labeling the lines on Patrick’s page with sky, flowers and grass that help him fit his writing within the lines. And because the therapist comes from the school he used to attend, she brings along familiar things that he worked with before that really make him happy and willing to work.
The grand sum total of this is that instead of spending time hunting for curriculum for Patrick, I’m given tools to work with and all the time that I can fit in for school work is spent working and Patrick’s making good gains.
The more I see how things are being done right here, the more convinced I am that things were done very, very wrongly by Omaha Public Schools. Patrick’s teacher was a sweetheart who really meant well. But I’m certain that several of the rules governing special education were broken. I can tell you I certainly will do things differently if I ever have to work with that school district again.
The upside is that things are good here. It’s still a struggle. Patrick is a little bit TV addicted right now and he isn’t always happy when I pull him away to work. But only at first. He’s always happy once we get started.
And we especially struggle on the days that Patrick doesn’t feel as well. We finally finished the 2 week course of antibiotics. It is so nice to only have to get up to refill formula, not to wake up and stay awake to try to give antibiotics. It took a few days to get Patrick past the insomnia that giving him Benadryl every time he woke up was causing. But finally, the family is getting a little better sleep and that helps all of us do better.
Sadly, though, allergy season hit just as Patrick came off of the Benadryl. He had some hayfever symptoms those first couple of days. Or at least, that’s what we thought was going on. Two evenings ago, Patrick started to sound stuffy, too. By yesterday morning, he was sounding pretty congested. Of course, there was also this massive wind-storm that came through and I thought that was to blame. Then, overnight, it snowed. 6 inches. It has snowed all day today. And Patrick isn’t breathing better with the air cleared out.
We had an appointment with his GI and an intro appointment with the liver transplant clinic today, too. I took him, masked. And his doctor thinks this is likely a virus.. so far, he doesn’t think it’s anything overly concerning. (Though I guess we are watching in case his immune suppression causes a latent virus in his body to get worse. But they don’t think that’s it. It’s more likely he caught something over the weekend when we splurged a bit to spend time with family.) Anyway – so far, we are just supposed to keep a watchful eye. Patrick isn’t horribly sick or getting worse. He’s not running fevers. His oxygenation isn’t the best while he sleeps, but humidifiers seem to help with that. And he sounds pretty cute when his little voice gets croaky and cuts out.
Otherwise, it was a productive appointment. It is actually kind of comforting to know that Patrick’s been assigned a transplant nurse coordinator here in town who can get us a doctor quickly is Patrick needed things. They’ll also be watching Patrick’s weekly labs and making phone calls to doctors, the Nebraska transplant team, and us if anything looks off.
Dr. Jackson and I talked about getting orders in place for Patrick to be able to go back to school part-time. He needs to write a letter summarizing what Patrick’s medical and nursing needs will be as he goes back to school. So we talked about my goals and how what he wrote could help with those. He said would recommend for nursing support for Patrick because, as he put it, a multivisceral transplant makes him “one of the most complex patients in the valley.” I wonder how the district will interpret this. I’ve been trying to get an appointment to talk about and plan for Patrick to transition back to school and need this doctor’s letter first because the district trying to figure out what services he needs to attend school and where he’ll go that those can be offered.
Anyway – in brief summary, this is what the school year is looking at right now at our house.
With a lot of Bob the Builder in the background. Patrick rediscovered Bob the Builder this week. He is thrilled to find that he already owns Bob the Builder toys. He doesn’t remember this was his favorite show when he was 2.
I’m trying to figure out how to make Bob the Builder do math. Surely that would increase the incentive and willingness to work at it. Patrick hates math because counting is boring. (And hard in the midst of his ADHD and brain injury.)
Oh, P.S. As I cleaned off my car this morning, I was pretty sure that that much snow overnight would have shut down Nebraska school. Kudos to Utahns for being hard-core in all sorts of weather.
I am writing from the window seat of a room in the Omaha Ronald McDonald House. Today marked 1 month since they told us that he could go home to Utah. And so, today, he had a follow up visit to see how things are going.
It’s been an interesting few days. First of all, can I say how much it broke my poor little brain to try to pack for this trip? Travelling with TPN was hard. It took lots of big luggage and days of coordinating Fedex deliveries and special planning and packing for airport screening. In the past, I brought every suitcase we own packed to the 50 lb limit and also have at least 4 boxes shipped. This time, well, what I needed to bring was not iV supplies. It was formula. And food. I had to pack snacks.
i got everything gathered to put into suitcases and I looked around and I had too many suitcases. And the problem flustered me so much that I had to just go to bed and sleep on it. I had nightmares about not being properly packed. Then, I got up in the morning and I filled the extra space in one suitcase with pillows and blankets and I decided that we didn’t really need one bag as a diaper bag and another one to carry my electronics and medicines. And none of the bags weighed over 40 pounds. And it was all ok.
In fact, it was easier to get to the airport. Brian had flown in and out of this city enough times to know which flights would be fuller and have a busier airport and did a great time picking us a slow time in the airport. Patrick and I donned masked. (I wore one so Patrick wouldn’t feel so alone).. and i gave him a new pair of touch screen capable gloves. And we strode into the airport not struggling under the weight of overfilled bags.
Brian also had applied for TSA precheck status which meant screening for him and Patrick went much more easily. I still had to go through a regular line which felt, well… very strange. To leave them and go off on my own. But things were simpler. Patrick’s many medications had to be checked in the mass spectrometer.. but that is so much simpler than checking a cooler of IV fluids that they still were done by the time I got to them. They’d have beaten me had they not decided to let Patrick be screened in his wheelchair/stroller.
The flight was difficult. Patrick really has a hard time not playing with the window shade and keeping his feet off of the feet in front of him. Under normal circumstances, you can redirect this. But his steroids make it very hard to change Patrick’s mind once an idea enters them and we had a few stretches where I just had to hold onto him to keep him from hitting the seats around us until he settled down. It wasn’t all that way, though. He ordered himself a “diet water” from the flight attendant and had a happy snack time and we played with stickers and some mommy school games I’d laminated and brought along. Patrick’s desire to learn still overpowers most other things. And thankfully, the flight was only 2 hours anyway.
We rented a van and drove to the Ronald McDonald House. It was strange to be back and feel so at home here. Before out of state clinic visits were big adventures in new places. Now, well.. this is just a second home. Patrick, in fact, loves pointing out that we are coming home when we come back to the Ronald McDonald House each time we do. He is very mad at me that we are not restocking the fridge with his favorite foods and are eating out instead.
However, I like him eating out. He figured out he likes hamburgers last week and I love seeing him eat half of a hamburger plus some fries when we get him a kids meal.
We are aiming for a more vacation-like trip. Last night we went out and explored a shopping district called Old Market that we heard about but didn’t brave in the cold. It’s kind of a cool atmosphere. Like a toned down Pikes Market in Seattle, but with fewer people. And well patrolled by police. They allow street musicians, but not others begging on the corner.. so you could enjoy that ambiance of that little addition. It is warm here and nice to be out.
We did stop at the store for a few snacks and staples (and some sugar-free soynut butter that I haven’t been able to find in Salt Lake). And we stayed up snacking while waiting for meds time, even though Patrick was far too tired and overexcited about being here.
Today’s been a really nice day. In the 70’s, so we have been able to be out in short sleeves. We have never caught nice weather in Omaha before. We got up with the sun, as Patrick always does.. and made it out to go to the zoo early. We really love this zoo and find something new each time. This time it was the otters that caught his fancy. He didn’t like the sea lion training, though we did. And he was tired and wanted to go back to the room early, but we didn’t let him.
I’ve been tired today. At midnight last night, as I refilled Patrick’s formula feeds, I noticed that I’d left the charger for his feeding pump home. And I tossed and turned worrying about it all night. Trying to think who I could borrow from and what it would take to get homecare set up again in this city for just a few days. It was top priority this morning. It wasn’t hard to fix. I made a call to our homecare company who said that they often will lend chargers to people in a similar situation. So I called Children’s Home Health, the company we used while we were here, and explained the situation. They said no problem and to come pick up a pump. I signed a form saying we’d pay if it wasn’t returned and they gave me an envelope to return it in since they won’t have open offices the day we leave. And that was that. Easy peasy and why did I worry so much?
Oh well..
Patrick’s clinic appointment was this afternoon. That was also easy peasy. We checked in and there was some confusion about insurance now that we are more than 3 months after transplant.. but they voted in the end to leave that for the financial folks to sort out. We weighed Patrick in and he’s gained again.. and even 22 kilos, or almost 50 pounds.
The doctor we saw today was the surgeon who did Patrick’s transplant, Dr. Grant. This made me very happy. Not only does she, literally, know him inside out but we really seem to click as far as philosophy of care. She said that he was doing remarkably well and to keep on this same path. They were happy to hear he was eating and the dietitian adjusted his feeds again so that he’ll have 8 hours without tubes in a day… I had to promise to keep him drinking in that time so he stays hydrated.
Dr. Grant asked what we were doing about school. We confessed that we hadn’t dared send him back yet and were setting up home school instead. She actually seemed pleased with this answer.. she kept saying “It’s only been 4 months.” Pointing out that it’s easy to overlook how new this all is because he doesn’t have an ostomy or a feeding tube in his nose as most kids do this short time after. She started out recommending summer school or back to school in fall.. then conceded that maybe sending him back sometime after spring break so he can finish this year with his same friends and teacher would be a good idea.
After his physical exam, she pointed out some stitches we could have removed next time he’s sedated. And she said that she doesn’t think he still needs any physical restrictions. Monkey bars here he comes.
And then she said the words we’d dreaded. “So what do we do with this central line?” I decided to just speak my mind. I told her that we were ok with him not needing a line, but worried removing the one he has given how hard it was to put in and the chance of losing that access. I said this once before to another surgeon and was told I was being overly conservative. But Dr. Grant suggested just what I had imagined as the best solution in my mind: A port. This is a central line but one that stays under the skin except when it’s needed. There’s a small disk that can be accessed with a needle.
The nice thing about it is that it isn’t as prone to infection as a broviac line. It won’t need a dressing and he’ll be able to bathe and swim and get dirty. Also, it means that Patrick’s labs will be easier to draw and less painful, since they can numb the site. The disadvantage is that it’s still a central line and runs a risk of infection and needs careful monitoring for fevers.
We made a plan to come back after the end of the school year and have them change Patrick’s broviac line for a port. We’ll leave that for a little while longer till we know it’s safe, and then remove it.
We won’t need to come back to Nebraska until then. Oh, and labs can now be once a week.
So overall.. still good news.
And now it is on with our mini-vacation. We have had a snack and a nap and are now headed over to the hospital for movie night.. then back here where some nice church ladies are cooking us a turkey dinner.
I don’t want to delay the fun, so pictures will have to come in a later post.
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.
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.
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.
Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration. – Charles Dickens
I am blogging tonight from my own bed. Patrick is in his bed playing instead of sleeping. Brian is at the computer in his office. We have been home since Saturday. It feels good.
I’ve learned a lot about home in the past several months. I have learned that the essence of home: the part that’s made of love and family and faith and shared joys and struggles… that part is fairly portable. For we made homes out of a variety of hospital rooms and out of a small, overcrowded room at the Ronald McDonald House. Brian commented that coming back to our house wasn’t home. Home was where we were, and when it would come back to us every couple of weeks, it really did feel like it was home to be all together.
But there is something about us all being beneath our roof own homemade home together that is very comfortable. It is nice to not share walls with anyone. To not share a fridge or a kitchen or a dinner unless we choose to. It’s nice to let Patrick leave me and not worry about where he has gone.
Picking up and moving on under 24 hours notice is, well, stressful and crazy and very disorienting. After my last post, I had a horrible time sleeping. I’d wake up for something little and then lie awake for an hour thinking of all that needed to be done for us to go. None of us slept well. And when Patrick was up early, we just got up and got to work. We had accumulated a lot of stuff over the 3 and a half months in Nebraska and packing it up in an order that would make some sense and be accessible during the trip home was no small task.
We rented a mini van to bring it all home in. Brian called it “the more comfortable version of a U-Haul.” With stow and go seating, he just put the seats flat. And we filled it. And entire mini van.
We tried to steal some goodbyes. Patrick’s teacher came over and brought some gifts and read one last book with him. We met up with the friend from church who helped to organize all the offers of help and meals and such that came from them for a playdate. (Patrick pulled out his g-tube by accident and I very cooly popped it back in right at the park.)
And then, I got THE phone call saying that everything was supposedly in order and we could go.
So we finished loading the van and cleaning out the fridge and we checked out of our room and we started driving.
We went about a third of the way the first night.. crossing most of Nebraska. Patrick did a lot better than I expected. We packed the back seat with pillows and blankets so he couldn’t lose his toys and I passed him snacks as we went along. I put on my bluetooth headset so I’d be able to answer calls hands-free and turned on an Audible book and we just drove and drove. It took me some time to figure out how to manage cruise control while following but eventually got the hang of it.
We checked into a hotel in Sidney Nebraska around 9 p.m. We made a mad scramble to get Patrick’s medications and formula somewhat on schedule. Then we went next door the Perkins for dinner. It was the only restaurant in town open that late and a game had just let out so they were busy and Patrick was barely staying awake.. But he really wanted his ham and potatoes and toughed it out.
And then we crashed and the big comfy hotel beds just felt SO GOOD!
Patrick was up early again the next day and so we got up, too, and got bathed and dressed and meds done and then grabbed some breakfast. Right after the 9:00 meds were given, we hopped back in our cars and drove again. I finished one book and started another. We convinced Patrick to go ahead and take a nap.
I missed the sign saying we’d entered Utah. I was too busy trying to catch up to Brian after some slow trucks and a steep canyon had separated us a bit. And then, as I caught him, I started to notice that I recognized what we were passing. We were almost home. And having to stop to go to the bathroom in Park City about killed me because I knew how close we were.
We arrived home about 7 p.m. on Saturday evening to find yellow ribbons tied to the trees (that made me cry.) The house had been scrubbed clean by friends that morning. There was dinner waiting in the fridge and balloons in Patrick’s room.
Patrick was thrilled to be home. He immediately emptied his toy box. Everything looked exciting and wonderful to him. And to me. Though, I’ll admit, I was a bit frustrated to find that I couldn’t remember where I keep things in my kitchen.
It felt so good to lay down in my own bed and go to sleep.
That is one of the most often asked questions I’ve been getting. Did it feel good to sleep in your own bed? Well, yes.. it felt good to fall asleep there. But sleep didn’t come easy.
See – Patrick hadn’t fallen asleep alone in 3 and a half months. When I kissed him goodnight and walked out of the room, he started to scream. He got more and more panicked and angry. He said it was too dark. Patrick has NEVER been afraid of the dark. But I guess that is the byproduct of all of the trauma that he has been through recently. PTSD is VERY common in patients who have undergone a major medical ordeal like transplant.
I didn’t know what to do. I didn’t fit in Patrick’s bed. And I didn’t think he’s sleep with his lights on. So I said a silent prayer. And then I went in. I sat down next to him and told him I knew he was scared to sleep alone. I offered to help him say a prayer. He fell apart sobbing. It was heartbreaking.
I let him settle down and then told him I was going to walk away for just a minute and I’d leave a small lamp on for him. Then I’d come back. I still didn’t know what to do.
But when I went back, I got him up and held him on my lap. I read him a book. I told him we could leave the lamp on. I went out to my car and got the hot pack bear that he’d slept with in Nebraska on cold nights and warmed it up. Then I told the bear to take care of him and help him be brave. And I kissed him goodnight. And he snuggled down and was asleep within minute.
And I said a little prayer of gratitude for patience and wisdom.
And then I went and slept in my bed which felt great. But at 2:30, when I filled Patrick’s formula and changed his diaper, I somehow moved my back the wrong way.
After months of sleeping on too-soft mattresses, my back wasn’t so sure what to think of a nice normal firm mattress. And I couldn’t sleep in my bed anymore.
So no, I didn’t get a really great night’s sleep in my bed the first night. I ended up sleeping on the couch until 5, when Patrick woke up scared and I went and picked him up and we slept in the recliner in his room together instead.
Things have gotten better, though. Patrick still needs to sleep with “Louie bear” (named after Patrick’s ostomy.. long story) and with the light on. Sunday night, he only screamed and cried for about 15 minutes. Last night, he slept without tears. And tonight.. he sat up and played in bed just like he used to do.
And my back only hurt for a couple of nights and then got used to being in my bed again.
Sunday I went to church. It was VERY strange to be back. I knew I’d get lots of welcome from lots of friends and was a little hesitant about the attention. But I was happy to see them and it was ok. I told Brian I didn’t know where to go during the sunday school hour. I wasn’t sure I wanted the spotlight of going to the adult class.
He reminded me that Primary (children’s sunday school, where I am the music leader, but an assistant music leader has been leading each week)…still didn’t have anyone to play the piano. I voted for that. And I actually had a really great time. This is, after all, my favorite job in the church. And I didn’t have any of the responsibility.. Just the fun.
We had visitors for most of the afternoon.. my parents, my sister. Then, we went out to Brian’s parents. His mom had made us dinner. Ham and potatoes, special for Patrick. I remembered that I hadn’t heard anything about labs the next day and ended up making some phone calls to peacemeal something together.
Patrick’s nurse did come Monday morning. We slept in a bit and were barely ready on time. It took some time to update Patrick’s chart with all the new meds.
Because Monday was President’s Day, Brian didn’t have to work. We went out for breakfast.. I have missed Kneader’s french toast so much. It was yummy, though we established that their staff is either unwilling or incapable of making toast without butter for Patrick. Oh well.
Brian’s body was screaming that he needed a down day. So he took the job of supervising Patrick, who was still nostalgically exploring all of his toys. Meanwhile, I dove into Patrick’s room. We no longer need the drawers and drawers of IV supplies that we were using to give Patrick TPN. However, he does have a lot of new medications that we get 3 months of at a time. And he needs tube feeding supplies.
I worked all day, listening to Audible as I worked. And 3 boxes and a giant garbage bag later, I’d cleaned out the old supplies and moved in the new stuff.
That’s how the past few days have gone. Patrick and I try to get out part of the day to let him ride his bike or drive his car. The weather is like spring here right now… crazy coming from bitter cold Omaha… and so we only wear light sweaters outside.
But the rest of the day, I mostly clean. A friend came over and helped me clean out Patrick’s closet and his cupboard of craft and homeschool stuff in the kitchen. Today, I went through all of his toys and pulled out the old and broken stuff to make room for new. I filled both of our garbage cans. I have piles of boxes in the basement to donate. And I am maybe a little over halfway done with moving back in.
This is moving out of order. Usually, you clean out when you move out. You don’t move out, buy all that you want, then move back in and have to clean to make room for it.
Thankfully, being home means being surrounded by friends and family and help and meals just keep coming. I haven’t made an entree yet. And that has given me time to work.
I’ve also spent some time working on the business side of moving back home. There are claims to cover the cost of transportation to sort out. And there is getting homecare set up here. For some reason, that still isn’t done and I hope they figure it out before I run out of ethanol locks on Friday. (Thankfully, I received our month’s shipment of all the rest of our supplies right before we left Nebraska and that means no time crunch.) There are follow up appointments with doctors. Patrick’s GI, Dr. Jackson, has been great about being available to help us transition back. And figuring out how and when to go back to therapy. And e-mailing Patrick’s school so they can start working on all that it will require to get him back there when the time comes, which might involve hiring even.
It’s been a full week. But it is so, so good to be home. The stress is just what needs done and trying to keep Patrick entertained. Not the stress of being alone, but not alone.
I love the Ronald McDonald House. What would we have done without them? But there is nothing like being just here as our family and not needing to worry about anyone else. About knowing that we can pick up the phone and just call if we need something. About knowing where things are in the grocery store and what they should cost. And not getting lost trying to get to or from places.
I don’t want to let this blog drop and I’m sorry it’s taken me so long to get back to it. I don’t think well when I’m cluttered and all these boxes and suitcases have me feeling very cluttered.
But I know this journey is still just beginning.
Not only that, but I still have some things I’ve learned to tell you all about. Next time. Tonight, I’m gonna go snuggle up in my bed and go to sleep.
I was almost going to put off writing one more day. Then I thought, “Well maybe I’ll send a short update out just so people know we are ok.” Then I pulled up the blog and realized I haven’t written in almost a week. So I’m going to try my best to post a quick blog. I am very VERY sleepy so this may not be my best.
Things are good here. Patrick’s belly finally has been seeming settled. On Sunday I turned up Patrick’s feed rate without it making him sick overnight.. a first since he got sick and a sign that he might finally have beaten the virus. However, the diaper I changed just as I put Patrick back to bed has me questioning my confidence in that notion and we’ll see what the night brings.
We’ve been working on finding our rhythm again this week. I mixed up the routine a bit this discharge. I realized that it wasn’t worth the struggle of trying to do so many things outside of the room. It just means more exposure for Patrick. And more time spent tracking him down when he wanders or telling him to stay out of things and more bad feelings between us.
He was so happy to be back at the Ronald McDonald House. So happy to be able to play without rules with his choice of toys. The first couple of days he didn’t want to leave the room. So I started making formula here in the room instead of in the kitchen. And I started drawing up his morning meds at night and putting them in the cooler I keep in the room so I don’t have to go get them in the morning. And we don’t go out as much. And we are both cool with that.
Patrick trying on my new hat and scarf.
But we have had some fun, regardless. Friday, Child Life at the hospital arranged for a mini carnival and haircuts to be held at the same time. So we went over and got Patrick and myself much needed haircuts. And while it was my turn, Patrick got to go into the room next door and play. Then, he got to pick carnival prizes. Only he didn’t just pick for himself. He got gifts for Brian and me, too. He picked me out a bottle of lotion which, really, is the first time I think I’ve ever had him pick a gift for me and struck me as very thoughtful. He picked hoop earrings for Brian, but then noticed a Rubix cube and changed his mind. For himself, a book light that we use every night to read his picture scripture stories.
Saturday, we got together with a friend that Patrick made here at the hospital. They are staying in the Leid, a hotel attached to the hospital. His grandma and I have been watching for a chance to get them together. So on Saturday, I invited them to come play in the snow. We had a foot of snow, but it was 45 degrees and starting to melt.
So, in the morning, Patrick and I ran out to Shopko and bought some snowboots and waterproof gloves on clearance. We also picked up some snow dye bottles. And then we had a McDonalds happy meal together. (The little boy is here doing the intensive feeding therapy program so we thought that eating together might be good peer support for both boys.) Then we went out and played in the snow for several hours. We built a snowman. Patrick’s friend then said we needed a snow elephant, so we built that, too. I dug a box out of the recycling bin and we helped the boys sled on a little hill and they laughed and laughed. We made snow angels. We threw snow at each other, but not snowballs because our perfect packing snow made killer snowballs. A family in the house from Tennessee kind of timidly came out to play, too. I think the moms had as much fun as the kids.
Sledding in a box works when both the hill and the kids are small. We wore out the bottom of the box, though
Patrick putting some extra color on our snowman. When we started, he just had a red hat. But he was already melting as we worked
When we started, the snow in this yard was pristine. I finally realized most of our housemates are from the south so even if they weren’t at the hospital, they didn’t usually play in snow. This just felt better.
And then, by the end of the day the color had all run off our snowman because of the heat and by the end of the next day, he was just a little pile of snow.
Another treat is that Patrick can take baths again. Since transplant, baths have been very limited and often forbidden. With an ostomy, they were possible but had to be short. After takedown, he had an open incision for almost a month. In the hospital, I only do sponge baths. So to be able to put him in the tub and let him play is a treat for both of us. He’s had a few 1 hour baths. One morning, I just put all the towels in the room on the floor to catch the spills and splashed and let him go.
So much has changed for Patrick. It will be a lot to get used to when he comes back. He is eating like crazy these days. I’ve started to let him have snacks to just graze on. I put the in the disposable coffee cups that the house provides. So he munches on cheerios while we drive. I have cheerios in my seats. Who knew I’d be happy for that little milestone one day?
On Sunday evening, I packed him a cup of veggie straws and we went for a drive. He finished his cup after 10 minutes and asked to go back home for more. I didn’t oblige. Instead, we went to drive across the “Mormon Bridge” just cuz we’d heard about it. Then, as I was driving back, I noticed signs for the “Lewis and Clark Monument” outside of Council Bluffs, Iowa. So, we went over there. Arrived just as the sun was setting, reflecting in the Missouri River. Being in a state park, on a hill overlooking the city.. felt a bit like home. Patrick was just happy to wear his snowboots and stomp in snow and mud.
Patrick said “take my picture by this wall”. So I did.
Patrick also snacked on Cheerios all through our Primary lesson this week. We were looking for a room to do this in and found the Sunday house staff member resting on the couch in the room we usually use because her back was out. Patrick just snuggled up next to her and watched her show and ate Cheerios. Then, when her show ended, I told him it was time to do his lesson. So he asked her to join us. She obliged and it was very sweet, and kind of nice to get to have someone else listening as we talked about Jesus and his resurrection and atonement. She even sang along with us. Patrick tried to make her say the prayer, but I persuaded him to teach her about how we pray and let her listen just this one time.
Anyway – I was saying… so much has changed for Patrick. He is growing up in so many ways.
He eats. Kind of all the time. It’s still new and most of what he eats is like what you’d feed a toddler still learning to eat. But he has discovered a love for ham and cheese sandwiches. He chews up and swallows the bread and cheese, but spits out the ham. The first time he did this, I was stunned. When a few days later I offered another sandwich, he said “Mmm. Yum!!” I think he just needs time to go through the developmental stages of eating. I haven’t taken him back to feeding therapy yet because I wanted to give him a week to get better and see what the doctors said in clinic this week. But we are moving the right direction.
He has realized that dirty diapers don’t feel good. Now, he knew this before, but his stool was very different before. It was all liquid and either had to be changed right away or absorbed completely into the diaper. This is different. So we get up and change him during the night if he goes. And he’s learned to go back to sleep after. (A HUGE step for him.) And when we someday can keep a routine long enough, I think we’ll be ready to start exploring potty training again because I think he finally has some control over that.
Meanwhile, this means I am very sleepy. It’s kind of like I have a newborn again. Formula has to be refilled every 4 hours because Patrick’s bags only hold that much. A bigger bag could be put on ice and not need this attention, but then Patrick would have to wear a bigger backpack. He has one, but he prefers the little backpack that doesn’t get in his way when he sits down. Between changing diapers and refilling formula, I am up every 3-4 hours during the night. This is why I don’t blog. I am so sleepy I crash when Patrick crashes. And since naps can mean insomnia, we don’t always make that up during the day.
Taking the snowy way because he has snow boots
He still chews on everything, but he’s given up paci’s. Ok, I’ll be honest. He tried to cave on that today. He found his pacifiers and asked for them back today. But I reminded him he had chosen to be a big boy and didn’t need them anymore. Then I grabbed the sewing kit and cut the paci’s out of his wubbanubs and sewed their mouths back closed. He was sad. He said he wasn’t a big boy. He was a girl. So he could have paci’s. So I grabbed a chewy tube and sewed it onto the hand of his monkey and told him that he was a big boy and his monkey could help him have chewies instead. This kind of worked and he is happily sleeping with his friends again tonight.
Patrick has also made tremendous leaps in language. His first/second person confusion is pretty well gone. And he talking more and about more grown up things. The other day, we had a really off day. We tried to nap and it failed and Patrick had a chip on his shoulder all day, and after fighting about nap, I did, too. Nothing clicked. He kept pushing boundaries. I kept falling for it and snapping at him. Finally, we got to the room in the evening and I sat down and just cried and told him I didn’t like fighting with him anymore. He gave me a big hug. He told me, “I’m a tech.” This is the title of the medical assistants who check vitals at the hospital. I don’t know why this exemplified the most compassionate person he could be at that moment, but I understood that was exactly what he was offering. Then, he got up and got my Kindle and brought it to me and said. “Mom. Look at your Kindle. It calm you.” And you know what, he was right? We sat on the bed and I read my kindle and he played with his tablet and we were calm.
He is still in love with reading. I wish we were making faster gains. It’s really hard when school is only 1 hour a day, 3 days a week and we rarely make it a week without missing at least one day. But I’m trying. On Monday, I pulled out Patrick’s stack of sight word readers and my laptop and I told him that for every book he’d read to me, I’d let him play one game on SesameStreet.org. This strategy actually worked really well. Not only did we practice reading, but we played some educational games. Then, when he wanted more mommy school, I pulled out a little game we have with letters on dice and we built words to and then changed their first letters to find rhyming words. It was one of my better mommy school sessions.
Patrick often pulls out this bike and rides while I do the laundry
And today, we just stayed in the room and cleaned out Patrick’s toys. It helped him remember what he had here so he wanted to play here more. It helped me organize some of what was overflowing. And it gave us a step in the right direction for daddy to come back tomorrow.
Brian has had a doozy of a trip home. He had meetings with a group from out of town last week and a couple of days in, one of them came down with a cold. Well, Brian caught it. And it took him down. He had to take a couple of sick days. When he was still running fevers after a few days, he actually ended up at the doctor where he was diagnosed with bronchitis and given antibiotics and a cough suppressant. But that didn’t mean rest for him. We decided that a last step to really cleaning up the house was replacing the carpet in our bedroom. So, still sick, he moved all of the furniture out of our room so that could be done Monday morning. Then, also Monday morning, discovered that he had a nail in his tire. Had to put on a tire and take it to be repaired.
He is a lot better, but his cough is still lingering so I get to try to reach Patrick’s team tomorrow to figure out if that means that Daddy shouldn’t be around. And then we have to figure out if that means postponing his trip or finding him somewhere else to sleep or wearing a mask all the time or what. This is another new thing for us. Navigating a contagious world with an immune suppressed family member.
It has led me to research into contagious period for certain illnesses. Someday, I’ll summarize that into a handy guide of “how long to stay away if you have been or might be getting sick.” For tonight, this was a handy little document. http://www.bccdc.ca/NR/rdonlyres/8061A728-C969-4F38-9082-B0296EF2A128/0/Epid_GF_childhood_quickguide_may_09.pdf Especially given that Utah is experiencing outbreaks of a few vaccine preventable diseases right now. I’m biting my tongue and trying not to blog about how scared I am coming back to this absolutely ridiculous problem. It’ll probably come out one of these days when I have time, though.
Anyway – I think I’m about out of stories worth telling. Well, maybe just one more. First of all, we survived a very long weekend of no dinner groups at the Ronald McDonald House. I miss the friendly group of families that was here over Christmas. The current group has a more every-family-for-himself attitude that I think has grown out of the panic of cold and flu season. Regardless, knowing that norovirus can be spread in food, I decided we’d better just cook for ourselves. I started to brainstorm dinner with Patrick the other night and he said, “I have a great idea! Let’s have chicken! Like at the hospital.” Well, I’d had KFC one night and apparently he liked it. But KFC was out of chicken and literally locked their doors that night. Odd. So we ended up getting a rotisserie chicken instead and I think we did pretty darn well with instant mashed potatoes and gravy made out of Patrick’s chicken broth. Patrick ate a ton and we were both happy.
Patrick and the Omaha Lancers Hockey Team
But tonight, dinner groups are back. And we started out with a great one. The Omaha Lancers, a junior league hockey team. Not knowing they were coming, Patrick decided to wear his Avs (hockey) sweater today. So he gave us away early as hockey fans. And I’m sure he made and impression and won them over. He traced the player numbers on every team member’s jersey.. then spelled out the letters of their names. They made him pancakes and ham and toast, all current favorites, which of course won him over, too.
Ok. I am out of stories and really should get some sleep.
Patrick Hoopes 