Emily asked me (Brian) to post a quick update tonight.
Emily and Patrick made it to the Ronald McDonald house tonight. This starts another chapter in the transplant journey. Needless to say things are a little hectic for them. Both are excited and nervous at the same time. But they are doing well.
Here are some pictures of their departure from the hospital:
Weekends in the hospital, and especially Saturdays, are pretty quiet. Today has been a quiet day. They started giving Patrick replacement fluid to keep him hydrated in his g-tube instead of by IV. So far he seems ok with it.
Patrick definitely overdid yesterday and has needed a day to rest and recover. So we took naps and he played with a volunteer while we grocery shopped and we went to the rooftop garden, then came back in because it was too windy. This evening he’s doing watercolors in bed because he is determined to play, even though he is really feeling too sore to do it.
And that’s about all that happened today. I’m skipping education tonight to go snuggle my little boy because his belly hurts.
Patrick is doing well.. And the mailroom is slow. Therefore, to make sure that one day, when Patrick is able to go outpatient, he can still receive your mail, please use the following address. It will stay the same no matter where he is.
Patrick Hoopes
c/o Ronald McDonald House
620 S 38th Ave.
Omaha, NE 68105
Thank you for the many cards and packages you have sent. They brighten his day and lift his spirits.
I will warn you that I am posting from my cell phone so if you notice strange errors you will know why.
Last night, the whole family felt kind of tired and discouraged and I decided blogging would have to wait so I could comfort Patrick. The day went a bit better yesterday. Patrick had to go without food for the morning to be ready for his scope. They gave him some IV hydration and let his belly rest. This let him also rest from his nausea and that helped a ton.
They did his scope bedside. (Something that still amazes me, but it is why he will need a stoma for a while.) Daddy laid with him this time while child life came and brought lots of distractions. That meant I watched more this time. They put the scope into the stoma, take some pics, then insert a tool that pinches off tissue for a biopsy. The intestine still looks mostly healthy but they saw a couple of small ulcers yesterday. Waiting for biopsy results tomorrow (or is it today?) to say what that means.
Just as they decided to come up for this, I got a message from a long time Facebook friend, Andy Jablonski. Andy is an SBS survivor.. In other words, a man who has lived with short gut his whole life. He runs a foundation called the SBS foundation. Here is his website. We have worked together for years because we promote the same cause. And as he is a patient here and has some testing, he came up to visit.
Patrick was thrilled to meet a grown up with scars and a line. I was happy to finally see face to face someone I have so often talked to.
Funny thing, though. I was telling Brian he was coming at they set up for this scope. And the woman radiology technician recognized his name and asked how I knew him. When I mentioned my support group, she then recognized me from my picture on the page. It is odd to be here where people know me. In Utah, I am mostly anonymous running my little website and support group.
After the scope, while Patrick napped, I snuck out to make some calls. To help with the cost of prescriptions and other copays, I am chasing an adoption subsidy and a medicaid waiver wait list. Not to mention negotiating with insurance to set up care here. And getting things set up for Patrick’s prescriptions to be shipped here. Oh, and trying to get Patrick homebound school. I could spend all day on the phone.
But I try not to. I try to give Patrick and his daddy time as much as I can so we painted and did other crafts, went for a walk, watched Blues Clues. But none of it could fix his melancholy like a call to grandma. And most of all, we needed sleep.
Thank goodness for nurses. Patrick’s nausea is better since they switched him from vivonex to elecare. His ostomy still makes him feel sick to look at our empty, though. (Gotta get some pouch covers somehow. I miss my sewing machine.) Last night, I got wondering if we could find a way to close the circuit while emptying to keep him from smelling it. So I mentioned the idea of bedside drainage (a tube from the ostomy pouch to a bag by the bed.) It is more work for them, but she readily agreed. Between that and her regularly providing warm packs and Tylenol, Patrick had had his first peaceful, uninterrupted night’s sleep in several days.
Therefore, sleep deprived mommy feels totally rested at 5 am because 7 hours if uninterrupted sleep (well, except vitals) is a luxury. And I can blog before going back to sleep. Thank goodness for nurses!
Sorry this post is a bit delayed because Comcast went down, taking our server with it last night.
Patrick and I started the morning with a happy, snuggly conversation in bed. He woke up feeling sad after a night of not sleeping well because his nose was stuffy, so I figured we both needed it. I told him it was my birthday. He told me it was his birthday. I told him he could keep having a birthday till Thanksgiving and that we’d share yesterday. I asked him how old i might be. He said 8. Almost. I’m 35: 3+5=8. Then I told him, as I always do, about how on my birthday I like to remember that he is my best present. (We were first granted custody of Patrick on my birthday 6 years ago.) I asked him if I could wrap him up and put a bow on his nose. He said no, but it helped him giggle.
My birthday celebrations were simple. Brian brought me breakfast and some presents. When the child life stopped by, Brian told them it was my birthday. They sent one of Patrick’s favorite volunteers right around lunch time, so that we could go out. We went to Cheesecake Factory and ate the biggest meal we’ve seen since we got here. I forgot to take a picture of my cake before I dove into it. (Hungry.)… But the pineapple upside down cheesecake was delicious as usual.
I spent most of the rest of the day just being with Patrick. That’s where I want to be, anyway. For some reason, he started to feel very nauseous yesterday. His nose is stuffy and he has a bit of a cough and sneeze. We don’t know if this is the reason. However, seeing his ostomy and especially emptying it became unbearable for him yesterday. He gets extremely sick just at the thought. We are trying to make our way through it for the time being by covering our heads with a blanket while we do it so he can’t see and smell as much. But I’m also going to be ordering some products online that I hope will help.
The nausea just got worse as the day went on, though. He started to feel sick if he laid down. Eventually, we were pausing feeds and giving him Zofran, a medicine to help with nausea. Patrick had a really rough night. Right before bed, he got really sick and tried to throw up. (Can’t quite figure out what the surgeon did to make it so that doesn’t happen. She didn’t mention anything to explain it.) He had some blood in his diaper. (They say this could just be surgical scabs falling off.) And he just had a hard time staying comfortable. Eventually, we ended up sleeping with the bed upright and him propped up on me and he managed to get a little bit of sleep.
Patrick has been on a continuously fast, upward path since transplant. So far, he is still miles ahead of where most patients are 3 weeks out. Transplant recovery is a rollercoaster of good and bad news. Hopefully this is just a small setback. The nurse practitioner from the transplant team just stopped by and didn’t seem to feel that any of this was exceptionally worrisome.
Today he was already scheduled for a routine scope and we hope that there will be some good news there.
Meanwhile, though, lest you worry about me not having had enough celebration for my birthday.. just remember that I got what I wished for most. Real food. Phone calls with people back home. A day with my little family. Birthdays don’t always have to be parties. Patrick got a sheet of stickers yesterday in the mail. His birthday gifts are very prized possessions. Immediately, he covered me with the stickers, then gave me a hug and told me Happy Birthday. And even as he was having a hard time sleeping last night, he snuggled up and wished me one more Happy Birthday. He gave me all of the very best he had to give yesterday. THAT is more than anyone could really hope for, no matter where the day is being commemorated.
Sometimes you reach an enormous milestone only to find it horribly anticlimactic. Today, because it’s Monday, a new attending surgeon came on duty. He came in, heard Patrick was 15 cc’s away from his feeding goal and said, “let’s get him off TPN today.”
So, after turning up feeds all morning, Patrick’s nurse came in this afternoon while he was napping, flushed his line and turned off his TPN pump. After 6 years of total TPN dependence, Patrick doesn’t need TPN. Right now he’s getting all of his nutrition in the form of enteral feeds. (Enteral means to the belly.) That moment seems like it should have been bigger.
Patrick’s food is now super elemental (simplest form of protein so easy to digest and hypoallergenic) formula called Vivonex. A pump helps run it through the g-tube into his stomach. Eventually, we hope he’ll learn to eat. But for now, feeding through his stomach instead of by IV is a huge step.
He still gets a few ounces of hydration by IV a few times a day, but otherwise that pump is turned off. He’ll keep his central line till we’re really sure he won’t need it. Just because getting a line in is so hard for him.
With the feeding goal met, we are now working with the pharmacy on getting set up for Patrick’s many, many medications. One of the most expensive ones isn’t covered by our insurance in its liquid form. We are working on a requesting patient assistance and/or appealing the coverage because, well, if you saw the price tag on this drug it would make you feel a little bit sick, I think. They want me to pick a local pharmacy. How do you do that in a city you know nothing about?
The other big accomplishment of the day is that we backed way off on Patrick’s pain medications. We dared start tylenol again, so it’s time to wean off of the narcotic. Brian ordered some Blues Clues DVD’s (because we were getting more than a little sick of watching the same episode 10 times a day.) He turned them and then set a goal… after every episode, Patrick was to go for a walk. Without his walker.
This got better as the day wore on. The only time Patrick struggled was after laughing really hard when his meds had worn all the way off.
Why was he laughing? Well, they had a troupe of clowns visit the hospital today. And, well, it turns out that clowns doing slapstick humor is right up Patrick’s alley. He belly laughed the whole time. It was awesome! Thanks to Professor Jerkelle, Basil and Wheels http://www.geocities.com/pieclown .. All that laughing left his belly a little too sore to walk. But with some pain medicine and back in bed, Patrick took an awesome afternoon nap and all was well.
So a big day, but so quiet for such a momentous occasion.
I suppose it is my (Brian) turn again to blog tonight. I left the hospital to come back to the Ronald McDonald House to get some laundry done about 8:15. When I left both Emily and Patrick were asleep. They needed it.
It snowed today. Snowed most of the day, kinda made things feel a little like home.
A patient with Ebola arrived at the medical center this afternoon. Not that I saw him, or will really see or hear anything different. But it is strange knowing that the floor above where Patricks room is is the temporary home to a man that has an illness that is so feared. I must say that it doesn’t overly concern me.
My parents were still in Omaha for the morning. They came and visited Patrick, and when it was nap time, I took them to see the Ronald McDonald House. We also went over to the Winter Quarters Temple which is here in Omaha. The visitors center was busily preparing for a gingerbread house festival that will start next week. There were a few gingerbread houses already on display. We’ll probably go back and check it out. My parents left this afternoon, they were trying to get about 4 hours towards home (North Platte, NE), they only made it about 2 hours from here (Grand Island, NE), and decided it was wise to stop. The snow was supposed to let up this afternoon, but that didn’t happen.
Patrick spent most of the day running an almost fever – 99.6ish. The docs commented that his white blood count is trending up. He was also a little moody and tired today. Seems like he might be getting sick. What does that mean? We don’t know yet, if he does get sick chances are he will get really sick as his immune system is pretty much wiped out at this point. We’ll see where that takes us, and we’ll see if it turns into a real illness. Stay tuned.
Despite being tired Patrick was still up and about today. He walked to the play room this morning, and than back to his wagon, then to bed. This afternoon he walked to his wagon, then to the play room, and then back to his wagon, and then to bed. It is good to get him up and moving.
This weekend is “National Donor Sabbath” the intent is to educate others about organ donation. I figured I would put in my two cents about the subject. Obviously we are hugely grateful for someones choice to be a donor. I’m registered for both organ donation as well as bone marrow match. I encourage you all to think about becoming a donor and let others know about your choice. Obviously that is an incredibly personal decision, please consider it if you haven’t. For more information on National Donor Sabbath checkout http://donatelife.net/nds/
Have a good Sunday tomorrow.
Sorry we didn’t take a ton of pics today.
Not a ton to report today.
The surgeon that performed the transplant is the attending this week. During rounds she was excited to see how well he is doing, and she emphasized to the team that it was their job to keep him from getting sick, in other words don’t even think about coming to work sick, and make sure not to bring him bugs from other kiddos. Life is going to be different post transplant, lots of masks, hand washing, and generally avoiding people (not that we don’t love you).
Patrick had his staples removed today. He was of the opinion that they needed to stay. I guess that illustrates that he doesn’t really understand what is going on. Because they were going to remove his staples they gave him something to calm him down. The only problem is that it made him fairly emotional, which made for an interesting afternoon. Anyway the nurse practitioner removed 30 staples.
We received a few visits starting to teach us about what it is going to be like with Patrick outside the hospital. One of the visits was from the pharmacists who went over all the meds that Patrick gets to take for the rest of his life (and some for only a year). Some of those meds are going to be pricey, I thought to myself that is why we have COTA and did the fundraising (thanks everyone for your support). We need to get a lot of things figured out so when the time comes to be discharged we will be ready. Discharged meaning to the good ol’ Ronald McDonald house.
My parents arrived tonight. It is a long drive from Utah to Omaha. They did what I did last week and stop at my brothers half way. Sounds like they are going to start the voyage back tomorrow. It is nice to have them here, tomorrow will be nice to have a few familiar faces even if it was for a short while. However with snow in the forecast here for tomorrow I hope they have a safe drive.
Here are a few pics from today:
Forgive the brevity of this post. Also forgive the lack of pictures. I am blogging from my phone while Patrick sleeps on my shoulder. We had an early morning and a late and interrupted nap. He was ready to crash early.
Not much new today. They doubled feeds and cut TPN again. They also cleared him for solid foods so we celebrated with Pringles, pretzels and a ham sandwich. (They are always so surprised to learn he likes to eat. If only he swallowed.)
They also decided to cancel tomorrow’s biopsy because he is doing so well they figure it wasn’t worth the infection risk of a trip to radiology.
Today, I had a phone IEP meeting with Patrick’s school in Utah. His IEP has lapsed and we wanted one in place for this year. I am really happy with the goals and pleased with the fact that they took seriously writing an IEP as though he were staying. I wish I could see it executed just this way. Alas, instead I submitted Omaha enrollment forms today and get to have another IEP meeting in a week. I hope some portion of what was written today can carry over.
Otherwise today was pretty quiet. Patrick is moving a little better. But he kind of was feeling of off today and chose to play alone a lot. He sat to next to me on the couch for stories this afternoon, though, and that was a treat. Hasn’t felt up to that in a while.
Anyway.. Forgive my mistakes and brevity. Blogging by Swype is kind of hard.
Today was a relatively quiet day. Patrick slept pretty well on his own. They gave him some pain meds (first post surgery) early this morning. When we go to his room, he was more alert than we have seen him post surgery. When he realized we were there, he asked Emily to get into bed with him to cuddle, when she did, he snuggled down and took a nap. When he woke up he asked that we put his new birthday shoes on, which we did. He has been wearing shoes all day.
We spent most of the day trying to get Patrick to understand that he really is hurting, and that it was ok to say that he he was in pain. We have gone up on pain meds, but we are good with that.
This morning a physical therapist visited and wondered if we would like to get him up and standing a bit, we thought would be a good idea, but he was sleeping at the time. This afternoon after we changed dressings, and got all the medical necessities done we asked that they call PT and see if they were availiable. PT arrived and decided that we needed a better recliner, and moved things around. Then she said ok, we’ll get him out of bed and have him walk to Mom, which is a bit more than we had planned. We got him out of bed, and his feet didn’t really work, but we helped him take the 5 or so steps to mom. We got him in Emily’s lap, and he said “ouch”. Tells us that we pushed him a bit. He has spent until now in Emily’s lap mostly sleeping.
This morning during rounds (when the whole team goes from room to room to discuss the plan for the day) the surgeon that performed the transplant declared that Patrick needed a room with a window. Patrick was having a hard time knowing if it was day or night because there was no window in his room. This afternoon, right before PT came I asked about it, and they said they had a room ready we just needed to make the move. After PT was finished, we made the move to a slightly smaller room, but it has large windows (with a view of another wing of the hospital). When Patrick has been awake this afternoon he just looked out the window.
Things are fairly calm here. They have been pumping Patrick full of fluids (this keeps all the blood vessels open, and blood flowing), which has him quite puffy (swollen). All in all he is doing well remembering that is 48 hours post major surgery.
I’ve had the thought that I should answer questions that some of you might be wondering. If you have more questions please feel free to ask, we are all in this together.
First what do we know about the donor? The answer is pretty much nothing. I got out of the surgeon that they weren’t in the hospital. We have been told that sometime in the future we can try to get information, but that is up to the donors family.
How long will Patrick be in Omaha? That is a hard question to answer. We have been told that the absolute best case scenario is 6 months, but plan on somewhere around a year. I’ll be back and forth a bit, but Emily and Patrick will be in Omaha. I’ll come back to Salt Lake this week to pack and finish getting the house ready, and then I’ll drive back so we can have a car in Omaha.
One last note – Patrick will be immunosuppressed to some degree for the rest of his life. This will mean that for a time (probably even after he gets back to Salt Lake) he won’t be able to be in crowds, including church or school. This will mean that our social boy will be kept away, but that is the price to pay for getting these fancy new organs.
Thanks to everyone for the love and support. We really appreciate all the offers of help.
Patrick Hoopes 