LDS church – Patrick Hoopes

Transplant Day 10 and the Sabbath Day

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

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

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

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

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

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

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

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

Breathing treatment while sitting at his craft table.

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

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

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

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

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

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

We have bacteria species, and a plan to try to stay at home

From our hospital stay 2 weeks ago: Playing with another family from our support group. Daddies are awesome!

We’ve been home for a couple of days now. By Sunday evening, Patrick was feeling 100 times better. He started talking and playing again. We went to the playroom and raced cars down their giant car ramps. His cousins came to visit and while we waited for them, he was playing around in the lobby by walking every silly way he could think of, including with his eyes covered.

But the night shift rolled around and, yet again, they didn’t send up his melatonin on time. And the pumps didn’t like running TPN, lipids, and antibiotics all at once. And he didn’t get to sleep till 11. And then he woke up vomiting (because his g-tube had to be clamped because the medications had been late).. not once, but twice. Only the melatonin had come up by then and so he couldn’t wake up all the way and it was well, just sad..

From two weeks ago: Pushing Daddy in a wheelchair as a form of occupational therapy. Heavy work=happier child

And by morning, I was fed up. It’s time to go home when hospital routine is making him feel sicker instead of better. So I asked them if we could finish up care at home. And they agreed. (With some cautions, but agreed.)

And so we came home and the antibiotic thankfully was due just once a day.. and so we all got to visit with Brian’s family who has been in town visiting, and then we got to go to bed and sleep at night. First time in 3 weeks that I didn’t have to be up at midnight for antibiotics.

And we’ve all been feeling much better.

One of the joys of our July hospital stay was the discovery that because we have a Physical Therapy goal to learn to ride a tricycle, if the doctors order physical therapy for Patrick, he's allowed to borrow a bike. He learned to ride a tricycle during that hospital stay. — One of the joys of our July hospital stay was the discovery that because we have a Physical Therapy goal to learn to ride a tricycle, if the doctors order physical therapy for Patrick, he’s allowed to borrow a bike. He learned to ride a tricycle during that hospital stay.

Well, except for Patrick this morning. Again today, naughty behavior has been emerging. And the nausea, which never completely went away, seems to be getting worse. And I was really beginning to worry.

And then the phone rang. It was Patrick’s pharmacist. AT LAST they have species on the bacteria. Our two best-friend bacterias… Klebsiella Oxytoca and Citrobacter. The drug-resistant bacteria that have set up shop in Patrick’s gut. Only this time, the Klebsiella is no longer susceptible to Rocefen, the antibiotic that I threw a fit to get them to put Patrick on. It’s mutated some and that drug won’t work anymore.

One of the best ways to pass time when you don't feel well in the hospital is doing crafts. This past week, Patrick discovered glitter glue and puff paint. Our lives will never be the same. — One of the best ways to pass time when you don’t feel well in the hospital is doing crafts. This past week, Patrick discovered glitter glue and puff paint. Our lives will never be the same.

So tonight, they’ll be sending me a new antibiotic called ertapenem. And they’ll be sending a nurse to keep and eye on Patrick during his first dose.

And hopefully by tomorrow, he’ll be feeling better.

Primary Children's Hospital has it's own LDS branch (congregation of the Mormon church) and every Sunday, volunteers will bring primary lessons and longs to any kid who wants them. Here's Patrick enjoying singing time. — Primary Children’s Hospital has it’s own LDS branch (congregation of the Mormon church) and every Sunday, volunteers will bring primary lessons and longs to any kid who wants them. Here’s Patrick enjoying singing time.

But I’m still happy that we’re home. Because at least he’s sleeping through the night. And I can keep a better routine so he doesn’t feel as sick. The good news is that this new medicine can still be given just twice a day and we can all still get some sleep. I certainly trust that things will work more smoothly with our GI writing orders instead of an intern, and our home care pharmacy and home nurse helping provide his care. No missed or forgotten doses of medications. And there is still a tiny chance that I can catch up on dishes and laundry. And feed us something other than cafeteria food. I think we are all happier at home. Even if Patrick does miss visits from Child Life with fun new toys to play with.

One of Patrick’s favorite people in the whole world: Jo from child life. She is the sunshine of every hospital stay.

Adoption Reflections: Getting to know you

I left off my story the night before Brian & I flew to Michigan.

Saturday morning, Brian and I got up before the sun. We went shopping for a few more baby things and for some presents for Patrick’s birth family. Then we went to the airport.

It was so strange waiting in line with a carseat, but no baby. In fact, the sight of us juggling so much luggage and an empty carseat drew some attention. A very kind man ended up helping me in line while Brian was off getting some money at the ATM. We were talking about our reasons for flying. He was taking equipment to Africa where he was going to teach people in 3rd world areas to build and maintain wells. When I explained why we were flying, he was in awe. It was very strange to meet this great humanitarian and have him be impressed with what I was doing.

We were flying standby, so Brian ended up about 10 rows behind me. I remember hearing him telling other passengers why we were flying and thinking “This is all so surreal.”

The amazing thing was, for all I was nervous, it was also all so peaceful. I’ll always remember how beautiful the fall leaves were on the trees as we landed.. and how right everything felt.

It was evening before we got to our hotel room, and then to the hospital.

We arrived and explained why we were there and were shown to a family waiting room. Where we waited, and waited, and waited. Finally, we met Patrick’s birth family… his mother, grandmother and aunt. Our timing couldn’t have been worse. We ended up arriving in the middle of a family crisis. But they amazed us with the grace and kindness they showed us.

We talked to the head of the NICU and to Patrick’s family for a while…learned more about his medical needs, and then finally got to meet Patrick.

I remember thinking that he was SO tiny! Just this fragile little ball of baby, with a head full of black hair. I got to hold him that night and was just amazed by him. We also got to know his birthmother and her family a little bit.

Soothed by my paci

We went back to our hotel a bit overwhelmed and not sure what to do. We were overwhelmed by how much of his medical status we hadn’t known… and by the whole situation in general.

But, we’d made a committment to give Patrick a day, and so the next day we went back to the hospital. We explained to the nurse that we’d like to learn all we could about caring for Patrick, and she was wonderful about giving us that chance. She taught us to change his diapers (around tubes). And she let us hold him.

Brian and I each got some time alone with him that day. I remember holding and rocking him and singing to him the words of a children’s song:

“I am a child of God,
and He has sent me here,
has given me an earthly home
with parents kind and dear.”

And my heart broke at the idea that Patrick didn’t yet know where his earthly home and parents were. And I didn’t know if I was able to provide that for him or not.

As the evening wore on, the head of the adoption agency finally came. She’d gotten word that no one from the agency had really acknowledged our arrival. She explained to us Michigan’s adoption laws, and what she knew of Patrick, his medical needs, and his birth family.

While she was there, two elders from our church arrived… courtesy Patrick’s grandma. (I’ll forever be indebted to her for sending them). They came to bring us the sacrament, and while they were there gave us priesthood blessings of comfort.

We visited with the adoption supervisor for hours, and then went back and spent a bit more time with Patrick. Then we went back to our hotel.

That night, as we were sorting through the dozens of pictures we’d taken that day, one jumped out at me. I looked at it and just KNEW that I loved this baby! And that I wanted him to be my son.

First days

Monday morning, we went back to the hospital. Finally people were there! We met more doctors, the hospital social worker, and the care manager who’d help us to get Patrick home. Calls were made to Primary Children’s to see if the doctors in Utah could take care of Patrick. His surgeons came and talked to us about Short Gut and transplantation. Finally we felt like we were getting a grasp on this situation, and amazingly, we felt like it might be something we could do.

Then we had the big decision to make. The night before, the woman from the adoption agency had explained that the papers we’d signed in Utah would expire if they weren’t filed on Monday. Besides, Brian had to fly back to Utah that afternoon for a conference at work. We had to make a decision before he left for the airport about whether or not we were adopting Patrick.

We held a “family conference” that morning… Just Brian, Patrick and I. We talked about the decision we were facing… and the fact that we felt ready to move forward. Then Brian turned to Patrick and asked him if he’d like to join our family.

He had been sleeping, but he opened his eyes and kind of looked at Brian, as if sizing him up. Then settled back down to sleep in his arms, as if totally content. We took that as a yes.

We asked our nurse to take our first family picture.

At 1, Patrick’s social worker from the adoption agency and the hospital social worker met with us. We didn’t have much time, so we signed papers in a hurry. Then we left to take Brian to the airport.

And that was it… Brian kissed me goodbye at the curb and said “Take care of our son.” We had a son! One with far more troubles ahead that we could imagine… but one who also just filled every room he was in with the feeling of peace and joy.

We’ve never looked back. Patrick is our little boy and we love him with all our hearts!

Sealing and blessing

As of 4:10 p.m. on February 13th, Patrick is officially a member of our eternal family!

We started out the weekend’s events with a little bit of humbling. Howie took the day off to help get the house ready and I was going nuts trying to take care of every little detail from ironing temple clothes to prepping food for the open house. But, a flat tire on the freeway ay 10:30 the night before we went to the temple was a good pull back into reality. Changing the tire was easy, but it revealed other bigger problems and we made it home on a prayer and half a rotor on the front passenger side. Boy did my priorities realign quickly, especially as I watched our car be taken away on a tow truck, just trusting that we’d get through the weekend all right anyway.

Howie’s family helped get the church set up for us to go the temple, and then his mom made it here just on time to watch Patrick while we got dressed to go. She drove us to the temple and we tried took a few pictures. Although it was sunny, the wind was bitter cold and Patrick was NOT happy so we didn’t stay too long.
My mom and dad met us at the temple. Mom was there to take care of Patrick in the nursery. (Including dressing him and reconnecting his IV’s). We left him there in capable hands and then went off to get dressed in white.

We met the sealer (this is the official title for the man who performs a sealing ceremony in the temple). Turns out he had been the community doctor in the town where my family grew up, so he knew my grandparents and dad, and some of my mom’s family, too.

They kept trying to start early… But my grandpa and some of my friends hadn’t made it there yet.. So we just made everyone wait. Our friend Tifanie was so excited that she couldn’t contain herself and ran over and gave me a hug… making everyone cry.

Finally everyone all of the guests had arrived and they went and got the man of the hour. My mom brought him in, dressed in a white tuxedo and wrapped in a white afghan she made just for the occasion. Brian and I knelt across the altar from each other, holding hands, and Brian’s mom brought Patrick and laid his little hand on ours. At first, he was a bit fussy, but we turned him around so his right hand would be on ours, and he caught my eye, and he settled down immediately. We watched each other’s eyes the whole time.

A sealing for a child is quite short… just a few lines said by the sealer that bind the child to his or her parents (in the eternal record) and then promise special blessings. Patrick seemed to soak up the entire experience, and then, completely content, went right to sleep as soon as it was over and I had him in my arms.

We celebrated and welcomed him into the family that evening with an open house at the church. I went smoothly (thanks in part to awesome family who helped with the food prep, set up, and clean up). There were enough people there that I couldn’t quite make it to talk to them all. Finally we wrapped up, cleaned up, and got home COMPLETELY exhausted! And with way, way, WAY too many leftovers. I think next open house I’m going with punch and cookies.

Saturday we got to recoup a bit as we visited with family, which was nice because we knew Sunday would be another big day. Patrick got to know his cousins and aunts and uncles a bit better.

Sunday morning Patrick could barely sleep. After his morning feeding, I sat in his room holding him and he just kept waking up and grinning at me. I swear he knew what was going on that day.

Because he had us up early, we were able to take our time getting ready. He spent a little time cuddled with his Daddy in the bed, and then we got him dressed and ready for church. Our ward has classes first, followed by sacrament meeting, so I went off to Primary with the children and Patrick went with Brian to his classes.

We snuck out a bit early to change Patrick into his white tux… and luck of all luck… found that his ostomy bag had started to leak. Luckily, by now Howie and I are a pretty smooth team and we were able to pull of a pretty amazing quick change in one of the classrooms and still make it to the chapel on time.

When the time came, Brian took Patrick to the front of the chapel. Brian is an Elder in our church, and his brothers, some of my brothers, our fathers, and my grandfather are also priesthood holders, and therefore could help with the ordinance. They surrounded Patrick, each with one hand holding him, and then Brian performed the blessing.

In a baby blessing, the child is given a name and then given personalized blessings. Among other things I remember from the blessing, Patrick was reminded of the love that brought him into our family – both our love and the love of his birthfamily. He blessed him with strength to face the difficult medical journey ahead. He reminded him that he was a child of miracles.

When they came back to sit beside me, Patrick was just glowing. His daddy held him and I could see the love that they had for each other. I also knew, as I looked at Patrick, that he understood all that had gone over the weekend and was happy about it. I really believe that, although he was adopted, the Lord promised He would waste no time in making sure that Patrick received these two very important ordinances.

Since then, well, I can’t quite get enough of my son. I don’t know what the future hold, though I’m sure there are rough times ahead. But I do know that I was blessed with a very special gift and a very important calling in this life when I was given the opportunity to be Patrick’s mom. And I will never forget the day he was sealed a part of our family forever.

3 months old

Patrick is 3 months old now and is starting to look and act much more like a little boy than just a baby. Oh sure he still wakes us up at night. And I can still tuck him under my arm and carry him around like he weighs nothing (of course, he’s still very small). But he’s growing (8 lbs 13 oz) reaching that fun stage my family calls “interactive baby”.

First of all, he’s started to give out smiles all the more willingly. I can bet on the fact that I’ll get a big grin whenever he wakes up and realizes I’m holding him. This past week, he’s also started to react more when I play with him. He’ll laugh and talk when I sing him songs or talk to him, and I can get him outright chuckling if I pretend to eat his cheek or tummy. He also is starting to take an interest in peek-a-boo. Of course, this is all the more incentive for me to sit and do nothing for hours besides just trying to get smiles from Patrick.

He’s taken a new interest in his toys. He loves to sit in the bumbo seat that Howie’s co-workers gave him. He’s actually learning to hold things so his gym, rattle, rings, etc. are suddenly much more interesting.

Course, he’s also learned to hold onto his central line… which is a bit more of a problem. Don’t need him grabbing that and giving it a yank. Thankfully, my mother in law modified a bunch of onesies to a design I came up with that send the line out the side instead of being right in Patrick’s reach and those are helping.He’s sleeping through more of the night and spending more of his days awake. Part of this may be that he’s finally feeling better. (His anemia is resolving himself and we are starting to get a hold on keeping him hydrated again). But I think part is just that he’s growing up.

Daddy went on his first business trip since Patrick came home this week. Thanks to all the friends and family who were there to watch over us, we made it through just fine. And now that Howie’s home, Patrick is just eating up the daddy time.

Perhaps the best news is that it was all pretty good news when we went to see Patrick’s gastroenterologist this week. If you don’t know, the past couple of weeks have been a bit scary as we almost had to take Patrick to the ER a couple of times. First, we suspected he might be developing a fever. Second, out of nowhere his stool output went through the roof and he walked a line with dehydration that we had to watch VERY closely. (Patrick doesn’t have the portion of intestine that reabsorbs fluids, so diarrhea will dehydrate him much faster than other children).

As so often has happened for us, though, the Lord was watching over Patrick. The right doctors were on call at the right times and they were able to teach us how to take care of things at home rather than taking Patrick into the ER. We had blood cultures drawn by his home nurse. He was put on an oral antibiotic to help fight any bacterial overgrowth that might be there. (With so little intestine, Patrick’s body can’t get rid of the “beneficial bacteria” that live there the way the rest of us can and he can get infections in his intestines that could cause diarrhea or worse.) He had his 2 month (yes, I know it was late) checkup with his pediatrician on just the right day so they could do labs to check for other stomach bugs.

And, in the end, the great news is that there is no sign of anything malicious that’s causing the change in output. We monitored him closely and gave IV replacement fluids at home so he wouldn’t get dehydrated. He got pedialyte instead of formula, and then watered down formula for about a week and a half. This week we were finally able to start giving him full strength formula in very small amounts (about a third of what he was getting, before… he’s up to a teaspoon now). And so far, so good. In fact, we’re on the other side of things right now where he’s not losing enough fluids… a sign that we need to increase his feeds. (We want him to need some replacement fluids because that’s where he gets his electrolytes).

So – if our emergency watch level were on the same scale as homeland security, we’ve backed down from red (severe) to blue (guarded). I’m getting to spend more time being mommy and less time being nurse.

I’m so grateful that Heavenly Father answers prayers. And I’m grateful for priesthood power in our home. Brian is an elder in our church and was able to give Patrick a blessing of healing this week. And really, the fact that Patrick is still home with us, and feeling happy and healthy, is nothing short of miraculous.
Speaking of miraculous, (as this blog post reaches an eternity in length), just a reminder that Patrick will be sealed to us in the Jordan River LDS Temple on February 13th and we’ll be having an open house to welcome him into the family that same day. Any of you who are in the area and would like to celebrate with us are invited. For those who are out of town, we’ll try to be quick in posting pictures, thoughts, and memories so you can share in the day with us.

Gotcha Day

In the adoption community, the day an adoption is finalized is known as your “gotcha day.” Well, miraculous as it is, Patrick’s adoption was finalized on January 7th.

It took a couple of days for the news to get to us, and a week before the papers arrived and it really seemed real. But, late as the news is in arriving on this blog, it is true.

LDS Family Services’ lawyers were amazing and petitioned the court for early finalization so that there would be no legal hurdles to our taking Patrick out of state to be evaluated for transplant. And, well, the court agreed.

In following his holiday tradition, we submitted our part of the petition on Christmas Eve. But Patrick managed to finally have his own day in his gotcha day. January 7th is the day after we celebrate the Italian tradition of Befana in our house and wrap up our Christmas season.

We’ve made arrangements to go to the LDS temple with him on February 13th so that we can be sealed for time and eternity as a family. This is a special ceremony in our faith. We believe that marriage and families are intended by God to be eternal, not till death do us part. Marriages performed in LDS temples are performed for time and for eternity and children born into an “eternal” marriage are likewise a part of that family for eternity. A sealing ceremony provides that same promise for adopted children. Patrick will be tied to our family as though he had been born to us. This is something that his birth family wanted for him and a day that we have been looking forward to for a long time.