Category: Patrick

Through Grandma’s eyes

I have so far resisted the impulse to write and to let Emily handle all the blogging. But after reading her most recent post about the beginning of this journey, I feel like adding some of my own thoughts.

It is difficult for a mother of seven to see her daughters struggle with infertility. I always have a prayer in my heart for them to be able to experience the joy that I feel as a mother and grandmother.

When Emily and Brian came to us with the story of the little baby born in Michigan that might not have a long life, I had such mixed feelings. I wanted them to have this little guy in their lives, but didn’t want them to have to suffer any more sorrow. There were so many unknowns. I can’t tell you why I fell so instantly in love with that little 2 x 2 inch digital image, but I did, and hoped that things would work out.

I don’t want to jump ahead too much from Emily’s story…but the best part of November last year for me was that I got to go to Michigan and meet Patrick myself. Brian had to come back to Utah and complete a project at work. Thankfully, we have access to Delta Buddy passes and I was able to fly out and stay with Emily for the week he was gone.

She picked me up at the airport and I don’t remember if we went to the hotel first, but we were at the hospital in no time. We had to check in at a secure desk and then off to wash. This was an event in and of itself. Roll up your sleeves, take off your jewelry, look at the clock and then begin to scrub and not just for a few seconds, it took several minutes.

Then through a maze of sorts (took me a couple of days to figure it all out) and we were in Patrick’s room. The lights were dim and there he was…big brown eyes and lots and lots of dark hair. He was so tiny. Just over 5 lbs. His tiny head fit easily into just the palm of my hand. Holding him was no effort at all, except that he had leads and tubes that connected him to life-saving and monitoring equipment.

The next few days were spent mostly at the hospital. We spent very little time in the hotel, just enough to heat up some food (can’t cook everything in the microwave believe it or not) and send home the many, many pictures that we were taking to keep Brian up-to-date. We had time to attend a Sacrament Meeting and catch some people at the Detroit Temple and ask them to place him name on the roll there. But we made sure that we were there for rounds morning and night as much as possible. Every day there were new things to learn about Patrick’s condition.

Emily was swamped with the details of the adoption, the insurance, medical decisions, travel plans and keeping family back home in the loop. Because she had phone calls to make, I got to hold Patrick for many, many hours. He isn’t able to have much by mouth and the instinct to comfort a crying baby with a bottle or breast just wasn’t an option. We quickly learned the value of a “paci”.

The nurses there are amazing. They are caring and skilled. They seemed to have an instinct for being available but not in the way. I felt comfortable enough to sing him and tell him stories and I know Emily did, too. And I know that when we weren’t there, they were holding him and loving him just like we did.

I will forever treasure that special week getting to know this grandson. I am grateful for the self-less decision that Brian and Emily made to bring him into our family. They are amazing, completely prepared by the Lord for their role as Patrick’s parents.

Adoption Reflections: The call

First pictures sent to my parents

November is national adoption awareness month. It’s also the month that we adopted Patrick. The miracles of last year are fresh in my mind right now, and so I’ve decided to write a small series of blog entries about Patrick’s adoption. Please excuse me as I reflect.

It was a miserably snowy Wednesday afternoon. I was sitting at my kitchen table finishing a shopping list and trying to gear myself to go out in the storm when the phone rang.

It was Emily, our caseworker. She started the call like this: “There was a little Korean boy born in Michigan on Halloween.” I’m pretty sure my heart skipped a beat. I’d had this crazy idea in my head all week that I should have heard something about an adoption opportunity by that very week, and now here she was calling. I didn’t quite believe it.

When we’d applied to adopt, we’d explained to Emily that we were open to adopting a child with special needs. So her next statement didn’t surprise me. “He has some health problems,” she said.  She went on to explain the information she’d been given… that he’d had gastroschisis, a birth defect where the intestines develop outside the body, that he’d need to see specialists at an out-of-state hospital, and that he may only live a couple of years.

I didn’t know what exactly to say. I asked a couple of questions, then I told Emily I needed to talk to Brian to decide if we wanted to be considered as parents. She promised she’d e-mail me the details she had. This is the message I got:

We have a baby boy born 10/31/08. He has Gastrocesis and is only expected to live 1-2 years. He is part Korean and part Caucasian.

 

The  LDS birth mother wants to place with an family that will have the baby sealed to them.

Mary the NICU social worker said last night that the baby might be ready to discharge soon.  The adoptive parents would need to be trained in paliative care.  Why the life expectancy?  She said that d/t the TPN the liver would die out soon.  She said that the doctors are communicating with hospitals in Miami, Florida; Cleveland, Ohio; and Pitt, PA to be reevaluated for a surgury.

 

There was a picture attached, too.
My eyes won mom over

I tried calling Brian, but didn’t get through. I left him a message telling him to call me right away. I’m pretty sure I was crying.

While I waited, I called our insurance company to find out if they’d even cover a 5-day-old child with this severe of a medical problem. Meanwhile, Brian called back. He heard the end of my conversation before I told him the news. He said he’d come home right away.

The rest of the day was very emotional and prayerful. We’d said we were open to whatever the Lord thought was best for our family. Now that was being put to the test. What neither one of us had expected when we said we were open to adoption a medically fragile child was the grief we would feel. From the time the call first came, we both were grieving as though we’d just found out about a serious medical problem in a child who was already ours.

We went to the temple, where we could seek an answer through prayer and mediation as to whether or not this child was meant for our family. During the ceremony, I just kept thinking about how drastically this choice would change my life. It meant changing EVERYTHING in my life. But I also kept thinking about the promise of the resurrection, and of eternal families.

I was scared, but when Brian said, “I feel good about this. Let’s find out more,” my heart said “OK.”

So, sent a list of questions off to Michigan through our adoption agency. And then we went to tell our parents.

We had this adorable picture that I couldn’t take my eyes off of. There was something angelic about that little face. So we swore we wouldn’t show it to anyone… But we failed and showed it to parents. The picture was labeled “Patrick,” and we knew that was supposed to be his name.

That night my family started praying for Patrick.

We e-mailed off a list of questions about Patrick, and after we got a few answers, we sent a copy of our profile to be considered. Brian sent this e-mail to our families:

We have a little more information on the baby.  We are not the only parents considering adopting him.  However we did give our case worker the go ahead to forward our profile to the case worker in Michigan (i.e. throw our hat in the ring).

We don’t know when we will hear back, we doubt it will be today.  So the waiting game goes on.

It sounds as if he will need a lot of care (we pretty much knew that already).  They have also said that he will need a bowel transplant at his first birthday (we don’t know more about that).

Emily and I are doing ok.  We are both attempting to work today, I think I have accomplished 2 things since I got here.  I have started about 50 other things.

We are rather afraid of what we are approaching, but can’t even think about not doing this.  We appreciate your support in this decision, please continue to remember us in your thoughts and prayers.

Friday morning, we thought we had our answer. Brian wrote this in another e-mail:

This morning we both woke up with the feeling that he isn’t going to come to our house.  Whether that is just us preparing for the worst, or just a glimpse of what is to come, we don’t really know.

We had flu shots that day at Brian’s work. I had just met him at his office, when my cell phone rang. It was our caseworker. She told us that the birth parents had just seen our profile and wanted us to adopt Patrick.

We were stunned! We locked ourselves in Brian’s bosses’ office (thank goodness he was at lunch) and we started making calls. Because we’d been chosen as parents, we were now allowed to talk to the hospital social worker and the birth parent’s social worker at their adoption agency.

We sent one more e-mail to our families with what we’d learned.

Patrick was a full term baby.  He is completely normal except his bowels don’t work (they aren’t sure if they aren’t there, or if they just don’t work). Because he can’t eat he is somewhat fussy (who wouldn’t be).  We need to explore if he is a candidate for a bowel transplant, but that can’t be performed until he is 1.  He will be on a feeding tube until he can eat on his own.

The hospital won’t discharge him until we have things in place to take care of him here.  He will need to be on a TPN machine (what that means, we aren’t sure).  But that is equipment that we will need at our house.

Chicken and I have decided that we are going to go out to Michigan and see exactly what it is going to take to care for this Patrick.  We have not committed to take the child, but this is the last step before we do it.

I will give you more details once I can think straight, course that probably won’t happen for a while.  So I will give details once we get a bit more settled in Michigan.  And I’m sure that I will be in contact with you soon.

The rest of the day was a flurry of excitement as we ran around trying to pull together the necessary details to be able to fly to Michigan in the morning. We went to the adoption agency to finish the paperwork required for us to be able to see Patrick in the NICU. Meanwhile, my mom and grandpa worked to get us airline tickets. We packed for an indefinite stay in Michigan. One small bag held all the baby things we owned, including a baby quilt I’d just finished Tuesday night. We made a shopping list for the nursery that Brian would come home and put together if we followed through on the adoption.

And then we tried to sleep. It was probably one of the longest nights of my life! We didn’t know what the future held, but we knew already our lives had changed forever.

It’s a year later and some things are the same. This Wednesday was sunny, but I still sat down and made my list of errands to run. And today, Friday, we’re headed for our flu shots. Our families are still 100% behind us. And we’re still depending every day on prayer. But, as expected, pretty much everything else is different. What I didn’t expect was that, with as challenging as it all is, it is much more wonderful and rewarding than I’d ever expected.

Happy Birthday Patrick!

A year ago, I was a basketcase. Against all reason, I’d convinced myself that I should have gotten a call from my adoption caseworker about a child.. even though we’d only been approved to adopt for a little under 2 months.

Little did I know that two time zones away, a beautiful little boy had just been born. At birth, the doctors doubted he’d survive. Labor had been induced three weeks early because when his birthmom went in for an ultrasound, the doctors discovered that Patrick was in trouble (beyond the already known problems gastroschesis and suddenly missing intestines).

After he was born, Patrick was swept immediately away to surgery where they discovered that his Short Gut was substantial. His birthparents were told maybe had 24 hours to live.

Now here we are, a year later. Patrick is thriving, in spite of all he’s been through and the many, many times that doctors have questioned how long he’d live.

Patrick’s life in every way is a miracle. What a blessing it is to have him in our lives.

Happy birthday, Patrick!

For all your party-goers, the party’s still on at our house this afternoon.

A Sick Day at Home

Patrick stayed home sick in bed on Monday. This would be pretty boring news for another kid, but for Patrick, this is only his 2nd ever sick day at home.

When I put him to bed Sunday night, his temperature was in the 99’s. If his temperature reaches 100.4 degrees farenheit, that is considered a fever and requires quick action. With a central line, a small fever could be a life-threatening blood infection that can turn deadly in the matter of just a few hours. If a fever reaches 101, we go straight to the hospital and say there at least 2 days.

Monday morning, Patrick’s temperature was still high, but sat just on the brink of a fever. So instead of running to the doctor, I put him in my bed with his IV pole connected, in addition to the TPN in his backpack, so that I could give him fluids to keep him from getting dehydrated.

He didn’t feel well, so he just layed there and napped and looked at books and watched Baby Einsteins. Meanwhile, I got on the phone with Patrick’s medical team. I talked to the nurses in the GI clinic to get blood cultures ordered, and then his home nurse to arrange for her to come to give them. I called his dietician to let her know that his stomach was upset and I was having to pour extra fluids into him. (This can make a difference in his electrolyte balance, which can be life-threatening.) And then I talked to his doctor, who was at home sick with the flu, but more than willing to work with me to make sure he stayed safe at home, or could go quickly to the hospital if needed. Then a conversation with his homecare pharmacist to arrange for a dose of antibiotics and some extra fluid to be delivered, and a call to the pharmacy at Primary Children’s Hospital to get some oral antibiotics too, for his belly.

I played nurse all day long. I spent a lot of the day in bed with Patrick to keep him comforted, and to watch for signs that he might take a turn for the worse. But he stayed grumpy, but stable. I also took his temperature at least every half hour.

Nursing duty spilled into the night. Brian and I took turns sleeping in Patrick’s room with him. He slept better that way, anyway, plus it meant that we could keep a closer eye on him.

And amazingly, by morning his fever was gone and he was starting to feel better. So far, nothing has grown from his blood cultures, so the gamble to keep him home seems to have been one work taking this time. In the peak of respiratory/flu season the last place you want to go if you don’t have to is the hospital. The chances of picking up a new bug and ending up back in the hospital are always there.

We’re still not sure why Patrick wasn’t feeling well. I wish sometimes he could talk. I know his stomach was upset, and that he seems to have increased problems with his motility. He’s also cutting teeth, which could have played a part in all of it.

Still, we’re happy to be home… To have been able to stay the day in bed at home, even if it did mean 2 days of hefty nursing duties and missed sleep for me. And we’re grateful for a motivated healthcare team who jumped right in to make sure that Patrick was able to stay safe and sound at home.

The good news that came out of this for Patrick was a decision that it might help to stimulate his motility to feed him. So he’s getting his little half teaspoon feeds again. Kind of the opposite of what you’d do for a healthy kid with an upset stomach. But that’s just Patrick’s life. He is THRILLED to be eating again and savors each bottle.

Patrick’s First Date

On Monday, Patrick had his first date… play date that is. My good friend Lindy was here visiting from Seattle with her daughter, Lauren. We decided it was a great excuse for Brian to take a day off and for us to finally go to the zoo.

It was a wonderful day! We started out at lunch where Patrick and Lauren sat in high chairs (this was Patrick’s first time) and played with spoons and straws and napkins. Then we went and picked up the zoo pass.

It was beautiful weather. It seemed like every stay at home mom in the valley had decided to get out to enjoy it. I’m sure it helped that there’s an adorable baby elephant, a baby giraffe, and a baby monkey, to name just a few of the new arrivals at the zoo this season.

Lauren was totally into the animals. Patrick was more interested in the enclosures. (The glass, hand rails, etc.) But they both enjoyed the day…

… even if Patrick was worn out by the end.

Patrick and Lauren really seemed to have hit it off. This is good news, as Lindy is the only person I know well in Seattle and Patrick and Lauren will probably get more than their fair share of each other as we go through this transplant journey.

I think this picture says it all. Yes, they held hands in the car, by the waterfall, and at dinner. This could be the beginning of a beautiful friendship.

Home Sweet Home

We were able to bring Patrick home again yesterday afternoon. My apologizies that it comes as such a surprise. Patrick’s surgeon was out until last Thursday, and we didn’t see him till Friday. The other surgeons led us to believe that we’d need to stay in the hospital until Patrick no longer needed his stomach drained to compensate for his too narrow large intestine.

When Dr. Rollins, the surgeon, came in on Friday he said he’d like to get us out of the hospital as soon as possible. However, weekend discharges are difficult and don’t often happen.

Dr. Rollins called Patrick’s GI, Dr. Jackson, in to give his recommendations and, well, Dr. Jackson always wants us home whenever possible. Despite all these recent infections, Patrick has a pretty good track record of staying healthy at home. So Dr. Jackson always prefers that he be here, especially with RSV and flu season upon us.

And so, much to everyone’s surprise, including ours, we brought Patrick home yesterday.

He is on erethromycin (don’t know that’s spelled right), which causes the stomach to contract… the idea is that it will help improve motility through the intestines. And he has a g-tube extension attached to the button in his stomach. This gives his stomach a sort of release valve for when his stomach contents build up too much. We put it to drain periodically throughout the day, though the goal is to keep that at a minimum.

So – my care of Patrick has changed, but is still very time intensive. And as he gets better and has more diapers to change and is allowed to eat, I expect to get even busier.

He’s doing great! It’s amazing to me to see him willing to play on his stomach now that the ostomy is gone. He’s also become quite good at sitting. It will be different to experience this new level of activity here at home.

A poem for Patrick

I’m working on a short gut syndrome support group website in my spare time here at the hospital. After a lot of pondering, I’ve chosen for the logo a worn out teddy bear. This morning, the words to this poem just kind of popped into my head to express why.

 

My teddy’s my best friend, without a doubt

His side is stitched up and some stuffing’s come out.

He’s missing a button and some fur on his tail

But those things don’t matter, I love him so well.

 

He’s faithful. He’s happy. He helps dry my tears.

He patiently bears being hung by his ears.

He’s rough round the edges, but deep down he’s great.

I can’t help but love him, with all of his scrapes.

 

Like I love my teddy, my mommy loves me

For all that I am, and for all I can be.

I may be beat up, even missing some parts

But I know she still loves me with all of her heart.

Lines

Patrick just got a new PICC line.

PICC stands for Peripherally Inserted Central Catheter. It’s “peripheral” because it is put in through his arm (or sometimes leg) but “central” because the line then runs up through that vein into his aorta (a.k.a. into his heart).

Central lines are very important. Because they run into the bloodstream closer to his heart, they are able to put things like TPN or medications into it that would damage a smaller vein because they are too thick.  Also, because they are in a main vein, they can draw blood from it to run tests rather than having to poke him every time he needs bloodwork. (Which for Patrick is sometimes done several times a week.)

Because Patrick needs TPN to survive, he needs to have a central line. Sometimes he has a PICC line in his arms. Other times he has a “Broviac” or “Cook” line in his chest.

Lines can be lost to infection, to damage, to clotting, or to accidents that dislodge them. But every line lost is dangerous for Patrick. One of the biggest factors if his survival is continuing to have veins to put lines into and so it’s not uncommon to find us discussing what semi-heroic measures to use to make a line last just a little bit longer.

This line placement went remarkably smoothly. The procedure took less than half an hour, following by a half hour nap. Now he’s awake and happily playing in his bed. Still a bit shaky from the anesthesia, but trying his best to sit up. He must be feeling ok.