Tag: daddy

Fathers Day Reflections

Chicken and I had the opportunity to go to church at the hospital today (for those who haven’t heard, Patrick is in the hospital, but those details will come later). While we were sitting there a lot of emotions regarding fathers day came to mind. I thought that I would try to write some of those down.

First my very own fathers day… It seems like a long time ago. A year ago, Chicken and I were just starting into the approval process for adoption. Oh how things can change in a year. It is hard to believe that we now have a little guy that is growing and progressing. So this is my first official fathers day, the gray hairs show that I’m a dad.
It is also amazing to think about all the stuff that we have learned. It is a humbling experience to arrive at the hospital and have the doctors take orders from you. We (mainly Chicken) have come up with a routine that has Patrick growing and staying relatively healthy, the doctors don’t want to mess with that situation, so they listen carefully to how we do things. I appreciate all the wonderful nurses that will sit and listen to all the little things that we do for Patrick, and attempt to follow it.
This fathers day also makes me think about my father, who is out of the country, so I won’t see him today. I sure hope he is enjoying his time in Mexico, in some ways I wish Chicken and I were there to show him some of the joys of visiting Mexico. I can see a lot of me in my dad. Thanks for helping to make me the person I am today. (I hope that doesn’t sound conceded).

I have also spent some time thinking about birth fathers. They kinda get left out of the adoption picture, or get blamed for the adoption situation. I think that it is very rare that birth fathers forget about their children. Some may make choices that don’t reflect the love that they that have for that child. But they do make the sacrifice to give their child a good home with another father who cares about their child. In our case the relationship with the birth father has slowly grown, it shows very much that he cares for Patrick. Thanks, Nick.
Well I think is enough out of me for one post. I probably won’t tell anyone else that this is here, if you stumble across it, thanks for reading.
– This post was written by Brian, a.k.a. Howie

Transplant Pre-evaluation: Night 3 & Days 4 & 5

Boy I didn’t mean to leave you all in a cliffhanger there. May turned out to be a rough month for us. Patrick was hospitalized twice with fevers and Brian & I have been sick, too… Blogging is one of the first things to go when things get hectic in our family. I’ll blog more about our first experiences inpatient at Primary Children’s… But I left you all hanging with the story of our first inpatient experience at Seattle Children’s.

So here goes…After Patrick’s GI sprung on us the idea of admitting him to the hospital for labwork and a transfusion, we made a few calls to make sure it was approved by the insurance company, and then the transplant coordinator took us to the admitting desk.

We traded in our clinic “Parent” badges for inpatient badges on lanyards that allowed us to wander around the hospital anytime day or night. Someone from admitting met us and led us over to what would be our room for the night. A nurse came in and started to take Patrick’s history. When I handed her my printed medical fact sheet, we got instant brownie points. She took the first vitals and got us settled in the room, but then her shift ended. This is the problem we’ve witnessed a few times… Things move slower if you arrive at shift change because there’s so much else going on.Around 7:30 things finally started to progress. Because we hadn’t been planning on spending the night, there were a few medical procedures that we would have done in the hotel room that we found ourselves having to ask permission for, and even supplies for… But they finally got it all done. We met the doctor and made a tentative plan for labs to be drawn once the blood for the transfusion had arrived. The IV nurse came and took some labs for blood typing and left a peripheral IV in Patrick’s foot that they’d be able to give the transfusion through.

Around 9 things finally settled down enough for us to order some Chinese takeout. (The only restaurant open that would still deliver to the hospital at that time of night)… and after it arrived, Howie went back to the hotel room and brought back the things we’d need for the night.Our room was in the surgical unit and was really quite nice. It was a shared room but Patrick was the only patient overnight. It had a nice couch that folded down into a bed, a bathroom in the room, and a window with a pretty nice view. When it wasn’t cloudy, you could see the space needle.

Things went pretty smoothly overnight. Patrick had a really great nurse who was impressively quiet. I woke up when the blood arrived for the transfusion so that I could take care of the TPN (they allowed us to run our home pumps, providing we were always available to operate them).

The next morning they wanted to do a floroscope (contrast X-ray) of his intestines. This was to be done in two parts so they could see the top and the bottom separately. They showed up early for the first one and took us to radiology where they took a chest x-ray and then strapped him to a board on the floroscope table. The board restrained his arms, legs, and head and also allowed the radiologist to tip and turn him.Patrick didn’t like this at all, but they let Brian and I be close to comfort him (Brian was actually in charge of protecting his head when they turned the board) and Patrick eventually fell asleep during the test

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They put a contrast solution in through his g-tube and took images showing it move through the stomach and out his stoma. It was interesting to watch it move through and appear on the screen.Then we were supposed to wait and see how long it took for the contrast to clear so they could see his large intestine without the small.

I was sleepy, hungry (they showed up before I could get breakfast) and frustrated at my plans for a mini-vacation being postponed. When the radiologist hinted that they might keep Patrick another night for the next floroscope to be done, that pushed me over the edge a bit… So Brian sent me to get breakfast straight from radiology and went with Patrick back to the room.

When I got back, he informed me that we’d missed rounds… fortunately we didn’t miss his GI, who came in just a few minutes after I did. He promised that they wouldn’t keep us another night, did a quick exam of Patrick, and then left.

Brian had a business lunch he’d scheduled so I stayed in the room and tried to get some sleep… Unfortunately, we got a roommate whose alarms were going off regularly and that was a mostly vain effort. The rest of the day was waiting and more waiting to see if the contrast would clear out of Patrick’s system… When it still hadn’t by 3 p.m. they finally started to work on a discharge plan. We’d come back outpatient the next day for the next test before our flight.

We finally made it out of there sometime in the late afternoon and snuck a nap in before finally getting out to play a bit.

Our friends Lindy & Kelly took us out for some authentic Italian pizza and then for Seattle’s famous Royal cupcakes. It was good to get to visit and spend some time with them. I was impressed by Lindy’s cunning as she excused herself to go to the bathroom and really went and paid both halves of the bill.

Our last morning in Seattle we got up and went to the hospital for the last time. The radiology tech from the day before was there yet again and very excited to see our names on the schedule. I asked if we could take pictures of Patrick on the table for this test and before you knew it, they’d convinced us to pose for this picture, which seems so wrong to be smiling in, but gives you an idea of what room, equipment, and our lovely lead vests were like.

Turned out to be really good we were there because I’d seen previous tests and knew that what first appeared on the screen was not the full length of large intestine and could encourage the radiologist to inject more contrast until we saw the rest. Because this organ isn’t used, it is rather narrow.
We made it away with just enough time to meet Lindy and Lauren and enjoy a nice walk in the park and a delightful lunch before rushing off to catch our plane. Obviously, it wore the kids out.
Security in Seattle didn’t go quite as smoothly as Salt Lake… I think this is because the first person who I was able to tell about Patrick’s pumps was the security agent at the metal detector who I think mistook the backpack with tubes coming out as something scary. We quickly got things sorted out, though, and they didn’t have other problems with the extra search.Patrick and his daddy slept through pretty much the entire flight and we got home without incident… But with very full mind from everything we’d learned and a much better sense of just what a big deal this all really is.

If I can manage a few more days of health in this house, I’ll post a bit more about how much this one little trip and the plan for transplant affects and will continue to affect our little family.

Transplant Pre-evaluation: Day 1


So the first big question about getting Patrick to Seattle was transportation. With current airport security, how do you get a kid who is connected to running IV fluids through security? And how do you go about transporting a week’s supply of TPN? It has to be kept at a certain temperature and, well, there is just a lot of it. Hauling a cooler and coordinating tubing through the airport just didn’t sound like much fun to us, but neither did dealing with any lost luggage.

So I did tons of research: called the TSA, read every page in the Delta website about baggage, and read websites written by other TPN patients. Finally, I asked the pharmacy if they could ship the TPN ahead of us. Turns out, that’s a free service that they provide. And our wonderful friends Lindy & Kelly helped us find a place in Seattle to ship to and then picked up the shipment and kept it in their fridge until we could get there.

So we were able to travel with just 2 day’s worth of medical supplies in our carryon… which was still enough to fill an entire carry-on sized suitcase, but probably saved us TONS of grief. Patrick’s luggage was by far the biggest and we were probably quite the sight making our way around with Howie hauling 3 rolling suitcases behind him and his carry-on and me with a stroller, a duffel bag, and a diaper bag.

We were surprised by how smoothly things went at security. In Salt Lake a TSA worker came up to us when she saw us getting our stuff ready to go through X-ray. I explained to her Patrick’s IV’s and showed her my suitcase full of medical equipment, including IV solutions and syringes full of saline and heparin. She took over right away. Patrick and I went through the metal detector and (of course) set it off because of his pumps. Then they took us to the little security station and ran their little tests on his medicines. When they were all done, they patted Patrick down and then did a wand/hand search of me. Then they thanked us for keeping things organized and making them easy and sent us on our way.

We were allowed to board the plane first because we were travelling with an infant, which was different but nice, especially since we needed to get his stuff settled so we could get to anything he needed during the flight.

We booked him a seat, not to sit in, but to give us some extra space. His backpack rode there buckled in and Patrick started the flight in his daddy’s arms. He played and he slept and he flashed his bright eyes and smile at the flight attendants and the passengers around us. He was by far the best behaved child on the flight! Whimpered only when he was hungry.

Finally we landed and took our crazy little caravan to the rental car company and checked in at our hotel. We took a much needed nap before heading over to visit Kelly and pick up the TPN shipment.

The day of travel was much smoother than I could have ever expected! Which turns out to be a good thing, as we had a very long week ahead of us

Firsts

We’ve been a very busy little family lately. Patrick is 5 months old now. And in the time since I last posted, we’ve had a lot of firsts. So, here are some highlights.

First giggles
Patrick learned to laugh a while ago, but we didn’t get out and out chuckles until we discovered that the kid who used to scream his head off whenever he got undressed is ticklish and loves to have his clothes off. Dressing and especially weighing are now favorite games… but it’s best when daddy just picks him up without clothes on and tickles his back.

Today we learned that you can also get belly laughs if you squish his cheeks.

First fever
Well, it all started with a cold, that turned into croup. After a week and a half trying to fight it off, Patrick got his first fever. Fortunately, it didn’t go much higher than 100.4 (38 degrees Celsius) and so we were able to have blood cultures drawn at home and his fever was gone in a day. No infection, thankfully. Just a day at home with Mom holding Patrick and taking his temperature every half an hour to make sure it hadn’t hit the danger mark yet.

First necktie
My brother Steven got married at the end of March. Although we were crazy busy working on his wedding cake and pictures, I just couldn’t help taking the opportunity to make Patrick and Brian matching neckties. We bought a tie with a matching handkerchief. Patrick thought his tie was a great toy to hold and chew on.

Oh, and a disclaimer on this picture. Patrick hates bright lights of any kind and we had studio lights on. Someday we’ll get a family picture with him not crying.

First rollover
I set Patrick down and turned my back on him for just a minute. When I turned back, he was on his tummy looking up at me as if to say “Whoa, Mom! What do I do now?” So far no signs of him having any idea how he did this or how to do it again. But we’re having much more play time on the floor to encourage him.

First haircut
After weeks of trying, we finally got time to take Patrick to my Grandpa’s house for his first haircut. In my defense (for those of you who thought I should never cut it), his hair was in his eyes and under his chin. Patrick was ok with the whole haircut idea till we hit the ticklish spot behind his ears. Finally, though, he fell asleep and we were able to finish. It’s a nice short cut.. but we hope that means it can grow for a while again before it needs another cut.

First ER visit
Last Saturday night, I noticed some bleeding under the dressing for Patrick’s central line. The line had shifted and, on closer inspection, we found that it had been pulled. It didn’t pull out, but was far enough to worry us. So – we got to make our first trip to the ER.

We were probably quite the sight there because, unlike the other families, we weren’t panicked. Central line issues are just part of life with Patrick. We’ve been planning and practicing for this trip for a while.

We arrived at 10:30 p.m. and had a bit of a wait in the waiting room because we were definitely not the most urgent case there. They took some x-rays to see the position of the line and about 1 a.m. the surgeon who placed Patrick’s line came into the room. He had been called in for an emergency appendectomy, and stopped in to see Patrick while he was there. He looked at it and said that the line was in a good position and he didn’t think it needed to be replaced on an emergency basis. Instead, we were to put antibacterial ointment on it twice a day to prevent infection, which meant lots of dressing changes, and then get a second opinion on Monday.

We were amazed, but happy, and after teaching an E.R. nurse proper technique for dressing change (yes, us teaching her), we were sent home. We got home at 3:30 a.m., connected Patrick’s feeding tube, and slept in till 11:30 a.m.

First outpatient surgery
So that brings us to Monday. About a month and a half ago we started the battle of the granulation tissue. Patrick had a patch of it next to his stoma that just kept growing back, no matter what we did. We learned to use silver nitrate to treat it, but it just kept coming back. So – we decided that maybe it was doing no harm and we’d leave it as it was.

No sooner had we made that decision than I discovered that his g-tube was surrounded by granulation tissue. A visit with the nurse practitioner in the GI clinic taught me better technique for nitrate treatments and after 10 miserable days of treatments, his G-tube site was clear of it. However, the spot by his stoma was starting to make it hard to keep a bag on and his skin was getting sorer by the day. I tried my newly practiced skills, but the tissue just kept coming back

So, we called and scheduled an appointment to have it electrocauterized. This is a minor procedure, but it’s painful and so they put babies to under so they don’t have to suffer through it. The surgeon we saw in the E.R. told us to as for follow-up at our appointment on Monday. It was still looking sore and red and swollen and the surgeon didn’t like the look of it, so he decided it was best to change the central line.

This means that they took it out of one vein and put it into another one, coming out in a different place on his chest. Again, this is something we’d been warned about, so it wasn’t a complete shock. However, we were a bit nervous and, after an already long weekend, quite tired.

The surgery went well. Patrick woke up and was able to come off the ventilator in no time at all. He was, as always, a favorite with the nurses in post-op. Brian got to reconnect his TPN in post-op, which was kind of funny to do. Our nurse was fascinated with the different equipment. We got some curious looks as Brian drew up vitamins with syringes and injected them into the IV bags.

It’s a curious thing to be the old pro parents in the hospital. I often refer to myself as a “hospital mom”. We know the routine. We’re patient with the nurses, doctors, and other staff and, although we are concerned for Patrick, we are not scared or intimidated by our surroundings as we once used to be. It’s kind of odd to feel perfectly at home in a hospital… But makes all of this more bearable.

Patrick was sore and tired for a day and still whimpers if we move his not-quite-healed shoulder the wrong way… But overall he’s back to himself. As for Howie and myself, well, we’re slowly but surely catching up on our sleep and getting back to a normal routine. And preparing for the adventures ahead.

First steps to transplant
And that brings us to the last of the firsts for this entry. We have made the first steps towards transplant evaluation for Patrick. We have appointments for April 27th and 28th at Seattle Children’s Hospital to meet with the surgeon, gastrointerologist and just about anyone else who might have anything at all to do with Patrick’s transplant. Theevalution process is big, long, and very detailed. They want to make sure that Patrick needs and will benefit from a transplant, that he’s healthy enough to have one, and that his home life lends itself to as successful of a recovery as possible. This trip is the first step in that process, and we are excited to go and learn and start building relationships there.

Patrick still has a long way to grow. He’s almost halfway to the 10 kilo weight goal. (He weighs 10 lbs 11 oz.), and so we know this visit won’t end with him on a list. But it’s a start and a step in the right direction.

And so, those are the firsts we have to report for the time being. We’re looking forward to continuing to see him learn and grow. He is so good at using his hands now! And has just started to discover that he has feet. His spirit grows by leaps and bounds every day. Most of all, he amazes us with his incredible patience and optimism.

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.