Author: geekino

We had an amazingly quiet hospital night last night. That is something I could get used to. After Patrick’s 12 a.m. vitals, they left us alone until morning. If the bed’s mattress hadn’t kept adjusting itself to try to balance out two people sleeping there instead of one, we wouldn’t have had anything to disturb our sleep.

Not much did, anyway. Only 6 a.m. when the nurse came and woke me so I could draw Patrick’s labs. (I’m not letting anyone else access this line while we’re here. I don’t want to risk breaking it.) And then she insisted on having a diaper change to chart nighttime urine output. Silly people. Adults don’t wake up in the middle of the night to go to the bathroom just so nurses can chart it. Why do they insist on having that for children?

Amazingly, though, when we finished, I asked Patrick if he wanted to go back to sleep, he said he did. We dozed off and on for another hour, then he decided to be awake, even though he was obviously still exhausted.

Oh well. We had tests starting at 8:30 and that barely gave us time to get ready and get down there on time.

Patrick had an Upper GI with follow-through this morning. That means that they put contrast in through Patrick’s g-tube and then watched it on x-ray until it had moved through to his colon.

This test has always gone very quickly before. Patrick had “good peristalsis,” or squeezing movement, even with his dilated intestine. Today, that wasn’t the case. His duodenum didn’t really squeeze at all. Just let gravity move the contrast through slowly. Perhaps this is why his motility is still bad after his tapering surgery?

Anyway, the slow motility meant the test was slow, too. I did my best to entertain him with signs and songs. He wasn’t very patient with it. But we got the results we needed, and better yet, he wasn’t unhappy, either, so I could watch the images as they took them this time and understand, now, what I was seeing. Makes a whole lot more sense now.

And Patrick was thrilled that they gave him the chance to be transported in a kid-sized wheelchair. He has wheelchair-bound friends at school and that made him feel like them.

After that test, we went back to the room. We’d told them we had appointments later in the morning and asked if they wanted us to go to them from inpatient, or to discharge us early. Amazingly, they called down the nurse practitioner and she whipped out a discharge in just the time we spent downstairs in radiology. I’ve NEVER been discharged that easily or quickly from the hospital.. certainly never before rounds without making plans the night before.

Better yet, they let us just take down the TPN they had running, switch it to our pumps, and take it with us. (Something almost unheard of at our home hospital.) While we did that, she explained that their standard protocol is to let patients run their home TPN or to spike the bag of TPN they brought in with them while waiting for a new bag to be made. What?! We have been fighting THAT policy at home for 4 years and still losing.

Anyway, we got out with time to come up to our room and unwind a bit before our next appointment.

That was with one of the hospital psychologists. Her job was to interview us to make sure that we were capable of caring for a transplant patient, and that we really understood what that meant. One of her questions was whether or not we’d been surprised to hear that our son’s life could be prolonged when we got to this hospital. I don’t think she’s ever heard a “no” to that question before. But I know they don’t often have patients come to them who are stable and doing well with their treatment at home. And they certainly don’t often meet parents who say, “We don’t know how long or short our child’s life will be. But that’s part of what we signed up for, and we don’t mind not knowing.”

Anyway, thankfully we got out of that meeting a little early and there was a little time to let Patrick grab a nap.

Our next appointment of the day was with an occupational therapist. Her purpose was to make recommendations on what kind of therapies Patrick might need to learn to eat after transplant. I loved meeting with her! She totally got Patrick. And she got that we have been doing a lot for him by way of therapy. We talked about what he is eating, what therapies we’ve tried, and the setbacks that his brain injury and short bowel syndrome have caused him.

While we were talking, Patrick decided to buckle and unbuckle her belt. Not the best game to play, but rather than being bothered by it, she watched how he worked with it and then said, “He doesn’t seem to know the right amount of force to use for this kind of task. His proprioceptive skills, or awareness of self, seem a bit behind.” That made me so happy because proprioception is one of Patrick’s BIG challenges and something that we regularly work with in therapies of all kinds for him. And for her to see that in something so small gave me confidence in who I was talking to.

She then went on to say that, based on the history we’d given, and that observation, she was going to express to us an out-of-the-ordinary recommendation. She was going to recommend that we consider NOT using the Intestinal Rehab Program’s world-famous feeding program to teach him how to eat. She said that the technique just wouldn’t match Patrick’s needs.

In large part, Patrick has a hard time eating not because he is inexperienced with or unwilling to eat, but because he has a difficult time coordinating his movements in order to eat without fear of gagging or choking.

She recommended that we request that an occupational therapist do feeding therapy for him instead or in addition to that program. That way, his motor planning issues could be addressed, rather than trying to force him to eat and expecting that when he became more used to it, he’d be more willing to do it.

She also talked to me about how to get Patrick therapy services through the school district here. And when I asked her if his IEP could follow him, she grinned from ear to ear and said, “I love talking to a parent who knows this language.” So often she deals with parents of babies, not parents who’ve been actively seeking therapy for years.

This may have been one of the more useful conversations we had all week.

That visit was so quick that we had a very rare hour and a half break. We came back to the room and Patrick and I made paper and sticker valentines while Brian caught up on some work and phone calls.

Then we went to our last stop of the day, the vascular lab to have an ultrasound and doppler of Patrick’s veins to look at IV access from that angle, too. Patrick was AMAZINGLY cooperative. The test was over in less than 10 minutes. I’ve never had one so fast and can’t decide exactly what that means.

Patrick was so exhausted when that was all over, though, that he couldn’t stand being in the room again.

Finally, we just went to our car and started driving. We drove to the far west side of Omaha and had dinner at Old Chicago. Patrick downed some marinara sauce there. He was so happy to be allowed to eat and drink again that he forgot the effect it could have on his poor little gut. Thank goodness for a well-stocked diaper bag.

And then, not wanting to go back and bother our neighbors too early, Brian found a replica of an early Mormon Pioneer tabernacle and a church visitor’s center across the river in Council Bluffs, Iowa. It was a half an hour drive, perfect to spend the rest of the evening. But it started to really snow as we crossed the state line and then the gates were locked, so we just drove there, looked, and then drove back. We’ll visit again someday if we can.

And now, we are headed to bed a little earlier than past nights and looking forward to not having an alarm set before 7 a.m. Hoping Patrick will stay asleep that long in the morning.

This morning, Patrick called for me at 3 a.m. I crawled into bed and snuggled him close to help him fall asleep. And then he started mumbling to me in his own little language. “Temple. Patrick little baby. Daddy. Mommy.”

Today is the 4 year anniversary of the day we took Patrick to the temple to be sealed to our family. We’ve been talking to Patrick about it this week. One of the things that has been difficult about this trip was that it meant breaking our tradition of visiting the temple grounds ON this day. And so having him start out the day remembering that I’d told him it was a special day meant a lot.

Before he’d go to sleep, he followed with. “Mommy, big loves!” Yes. He knows it’s something special.

The rest of this day was hard. Harder than it should’ve been. Patrick had some scopes and a liver biopsy today. That meant he had to have a shower this morning with antibacterial soap. Patrick is afraid of the shower and even though today he didn’t cry, he didn’t like it.

But, we got up early and managed to do that and get out the door on time for scheduled labs anyway.

Too bad when we got to the lab, the orders had been cancelled. Brian remembered that the nurse in pre-op yesterday said that the team decided they didn’t need any additional labs drawn before the venogram and had cancelled them. Oops. Cancelled the day’s transplant evaluation labs instead.

So we went to breakfast and as soon as the office opened, called to let them know about the mistake so they could get the orders back in. We went for a walk and then back to our room. Patrick was obviously overtired from not sleeping off his anesthesia much the day before and was bouncing off the walls.

Finally, they called and said that the orders were in and that, if we hurried, we could still get things done and make our 9:30 appointment. So, we rushed over to the lab. They checked us in. They took Patrick back to get his vitals. And the fire alarm went off.

So we had to evacuate the floor.

We waited a while, but they didn’t let us back in, so we decided to walk around to the other building where our 9:30 appointment was.

That was fast. Basically, established that our insurance had told us the same things they were telling them about coverage and that we had a plan to get us to Omaha in 4-6 hours when the transplant call comes. (Charter plane. Yup.)

So we hurried back to the lab. I have been drawing Patrick’s labs because his line is so fragile right now.. So we just went ahead and got started before the nurse came in. (She didn’t seem TOO upset by it.)

And we finished to arrive to check in for Patrick’s scopes just on time.

Patrick wasn’t happy to be back in pre-op again. But, the nurse cared a lot about that and did her best to keep him occupied. Better yet, I knew what to pack for, so I had a much better collection of toys in my bag.

There was some fuss of some kind about the procedure. Someone was missing or something wasn’t communicated. I don’t know. But they pulled it together and started just half an hour late. In hospital time, that’s pretty on time.

The tests took about an hour and a half. Afterwards, the GI took us to an office to explain what he’d seen. It wasn’t much unexpected. Patrick has some nodules, or little bumps of irritation, all along his duodenum. Probably irritation from chronic bacterial overgrowth. Maybe something from his food allergies. He also has some irritation in his esophogus that could be from frequent vomiting. It sounded like that might be a little worse than before.

His anastamosis (surgical connection of small and large intestine) is still narrow, but not so much that it keeps things from passing through. It is enough that the dilation is starting to return to Patrick’s small intestine again. His colon, however, seems to have finally adapted to a somewhat normal size, instead of tiny and narrow like before. That is a positive change.

They took a lot of biopsies, including a liver biopsy, and it will take some time to have those results.

When they called us back to recovery, Patrick was pretty unhappy. We opted not to give him versed, his happy drug, this time and he woke up with some pain and without mom and dad and not happy at all about it. I hate it when he’s so inconsolable. It makes me feel helpless as a mother. It took some time and some pain medication and some lullabies to get him feeling better.. But after about an hour nap, once some of the air they use to inflate the gut to look around had been vented, he started to feel better. I let him play some games on my ipod and that helped a lot.

When the pain settled down, the nurse got ready to discharge us back to our hotel room. We explained that we’d been told we were staying.

(Livers bleed easily and an active boy after a liver biopsy is safest in a hospital. Besides, we wanted to get a feel for what it was like to be inpatient here.)

They resident had forgotten to order that and it took another hour or so to get things sorted out.

By the time they got us to the pediatric floor, we were taking their last room… A tiny little closet feeling space in the corner of “the old wing.”

The accomodations are not great. They are, however, no smaller than the small rooms back at our home hospital.

The medical care has been a refreshing change, though. We arrived late in the afternoon. A nurse practitioner from the transplant team met us to write the orders. (Note: NOT a resident.) She was so familiar with Short Bowel Syndrome that I could just tell her Patrick’s treatment plan and she understood it. No trying to talk me out of the things that have worked. No “We’ve never used an ethanol lock before.” Just a quick run-down of the plan.

Even though we arrived late in the day, they were able to get TPN made and hung by evening. (Later than I’d have liked, but that was a busy nurse..not the pharmacy or doctor’s fault for once.) They were able to get Patrick’s special replacement fluid made. They knew the names of all of his diaper creams.

There were a couple of medications that they didn’t have an equivalent for. We opted, since it was only one more missed dose to skip them… But they didn’t bat an eye when we said we wanted to use our home melatonin to help him sleep through the night.

It was one of the easiest admissions in my memory. In fact, it’s been kind of nice to not feel like I need to teach the nurses how to take care of us. The nurse who admitted us said “These Short Bowel kids, they’re what we do here.”

The rest of the evening was kind of blah. Patrick, thankfully, was quite cuddly and didn’t fight being kept in the bed. Child life showed up quickly and brought us cars and blocks and Candy Land and that, plus some of the things I brought, has done quite well to help pass the time. He played with my tablet for quite some time, too. (Then threw it and cracked the screen. Thank goodness, Brian reminded me, we bought accident protection on it!)

A good friend of mine from college came to visit this evening. He lives a couple of hours away, noticed that I mentioned we were here this week, and happened to be driving through at that time. So he came up. What an unexpected treat to have a visitor!

I have kind of a melancholy feeling tonight. The hospital is quiet and they’ve left us mostly alone. I should be happy about that. But I think the long day has worn on us. And seeing Patrick not feeling well has worn on us. And the reality of the idea of needing a transplant and living in the hospital for months is starting to sink in to us.

And the room is old and small. And the pumps are different and the monitors are different.. and they sound like the ones in surgery and in the ICU back at home. The alcohol wipes don’t seem wet enough to me. The prefilled syringes all have needles on them, which seems wasteful to me. They wanted to put a giant “Ethanol. Don’t flush!” sticker on Patrick’s line. The medication syringes are orange instead of clear. There aren’t enough fun foods on the room service menu. Even the way they connect the tubes to the claves is different.  In other words, it’s not home. And we all know how well I deal with change.

So tonight, I’ve got a little bit of the transplant evaluation blues. But thankfully, I get to go cuddle with my little boy in his bed all night long! I’m not even gonna bother making up the parent bed. We both need the cuddles. And meanwhile, Brian is back in the room hopefully getting a quiet and good night’s sleep, in case we don’t. Labs at 6 a.m. tomorrow and more tests at 8:30 a.m.

Tonight I’m tired. Not that “wow, this sudden burst of so much excitement” kind of energy that we had during the first days of being here. Today is that “it seems like I’ve been marching this march a long time” kind of tired. Given that today is only Tuesday, I’m not sure that’s a good thing.

Last night was a better night. Patrick only woke once at 1 a.m. and I only had to sleep in his bed a couple of hours before returning to my own. We were all up right at 6 a.m. though and hurrying to get ready and out the door on time.

Again, we started our day in the lab as soon as they opened. Today, Patrick saw a drawer full of lab tubes and announced “Nurse ‘got (forgot) tubes.” She looked to me for explanation and I told her that his home nurse brings him a lab tube every time she draws blood. So, she gave him one. Then, while I worked to get a very finicky line to draw, she just kept giving him tubes. He walked out with 4 in the end.

Next, we went for an appointment with the Intestinal Rehabilitation clinic. This approach is the alternative to transplant.. trying to reteach remaining intestine in order to wean away from TPN and not have the complications that lead to a need for transplant. We expected a pretty full room. This time, though, we got the nurse coordinator for the clinic. That wasn’t bad. She’s been at this a long time and definitely knows her stuff.

We kind of went over Patrick’s current treatment plan. Hours of TPN, infection history and what we do to try to keep them away. What he’s eating. How his intestine has adapted and changed over time. What we are doing for his liver. And so forth.

In the end, she said that she didn’t really see anything that we were missing.  Dr. Jackson is already doing all the things that they would recommend. In fact, everyone is amazed at how strong and healthy and robust of a little boy he is.

She explained that they don’t really considering just wanting to be off of TPN an indication for transplant. However, in Patrick’s case where access for IV’s is a big concern, that might be what tips the scales.

However, because he IS currently so healthy and so active, because he has had a good team caring for him all this time.. if access really is a concern, now would be a good time for a transplant. He’s big enough that finding a match should supposedly be easier and so should the surgery. And, because he’s such an active kid, they usually see kids like him up and going again soon after the surgery.

It is very refreshing to me to hear them frequently reminding us that they aren’t going to rush into transplant sooner than medically necessary as my heart just hasn’t felt right about pushing that too early, either.

We did talk about some of the ways that short bowel syndrome is taking it’s toll on Patrick’s body. We looked at elevated platelets, a sign of an injured spleen and sick liver, despite other markers that say his liver is hurt but ok. (Did I mention that they said sometime yesterday or today that they often remove enlarged spleens at the time of transplant to make room for the transplanted organs? I guess there is just a medication you take to make up for it’s absence.)

We talked about how x-rays show that Patrick has a normal bone age, but is starting to show signs of calcium deficiency robbing calcium from his bones making them a bit thinner than normal.

We talked about bacterial overgrowth, the imbalance of gut flora that sometimes can make Patrick quite sick.

We talked about infections and lines a bit. And she played with a rowdy, sleepy Patrick a lot.

And then sent us on our way.

We headed upstairs to take advantage of the opportunity to grab some breakfast. And, just as we were finishing, Brian noticed a voicemail left on our home phone number. It was the clinic asking us to come back to meet with a GI.

So, we hurried back downstairs, just 10 minutes after they called for us. Started off by explaining that they still have my phone and cell phone numbers swapped.. and then hurried to meet Dr. Quiros, the GI.

He did a quick exam of Patrick, who strangely was afraid of him. Then, he explained that he’d be the one doing Patrick’s scopes and liver biopsies tomorrow. We talked about what to expect there for a while and I warned him about some of the quirks in Patrick’s anatomy.

Yesterday’s imaging showed a lot of change in Patrick’s anatomy. His intestines seem to be adapting in good ways, but also developing again some of the dilation that has been problematic for him. So we discussed some of the strategies that could be used to help with that problem.

Again, we were reminded that when they list patients for transplant here, they usually find a donor within about a year. My mind is having a hard time wrapping around that. But they also pointed out that they weren’t certain it was time yet for that fast of action, and that the rest of the tests would tell. It seemed like kind of a quick visit.. But it was good to talk about our hopes and questions for tomorrow’s tests.

At 10 a.m., we walked over to another section of the hospital to check in for Patrick’s venogram. This is a special test that they did to find out just how difficult Partrick’s central access problem is. (That is IV’s that go to the heart.)

We checked in, then took Patrick to wander a bit while waiting to be called back. They came to take us upstairs 15 or 20 minutes later. We settled into the pre-anesthesia unit where we went over his drug list and allergies and other key points in his history with a nurse. We got him changed into a hospital gown.. And then we got a call to tell us that the anesthesia team was running a bit behind and we might need to wait an hour.

While we waited, a few people came to talk to us about what was going to happen. A physician’s assistant came to fill in some gaps in his medical history and explain the planned test to us.

Next, anesthesia came down and we talked about our usual concerns. We also emphasized that Patrick doesn’t like to wake up without us and they promised to bring us back quickly.

While we were having that conversation, a man stopped.. put his hand on Brian’s shoulder and shook his hand like he knew him. Then he said, “You don’t know me.” (Whew!) He went on that point out that he recognized us from church on Sunday. We hadn’t met, but he wanted us to know that he’d seen us and that he worked at the hospital, also in anesthesia, and that he would be watching out for us in the future. Kind of a relief after dissappointingly not being able to meet anyone in church on Sunday. (We kind of thought that with the ward merger, we’d slipped in and out fairly quietly.)

Anyway… About noon, they finally came to take Patrick back to interventional radiology. The plan was to put contrast into Patrick’s veins and track their path back to his heart to see what veins were still open and available.

At 1:30, the nurse called us to explain that they were having difficulty getting an IV into Patrick’s left hand to put the contrast into.

At 2:30, we started to get really nervous. Brian went to grab lunch so we’d be ready for whatever was coming, and I started to get worried.

But, thankfully, just as we finished eating and were getting ready to go ask for help, they finished. The radiologist came to talk to us and explain the results.

She told us that really Patrick’s right side is quite open, all except for about a 2 inch segment by his shoulder that is completely scarred over, making it impossible to get to his heart on that side.

On the left, they never did succeed at getting a good iv in. His poor little arm is all scarred. They said that, from what they could tell, the best and maybe only access was the vein where his current line is. She said her recommendation was to just never take a line out of this vein, if possible. If it needed to be changed, change it over a wire to make sure that vein stayed open.

Yipes! In other words, we have been babying this line like it’s Patrick’s last. And it’s possible that really, this line location may be the last available. There is a slim chance that the jugular veins are still accessible. I don’t understand if this test answered that definitely and can’t wait to review this test with a surgeon later in the week.

Not long after, they proved that they listened to our requests by calling us back for Patrick long before he woke up. We had a nice visit with the post-anesthesia nurse while we waited for him to wake up.

Finally, Patrick sat up quite unsteadily and declared himself awake and asking to go to walk. He was quite tired and nauseous for the next several hours.

One of the SBS families that I know from our group came up to visit us in our room this afternoon. Patrick slowly woke up while they were here and, when he felt well, was very excited to have a little boy to play with. It was a great way to wrap up the afternoon.

Then, because Patrick was bouncing off the walls, we gave into another request for a walk and went and grabbed some dinner, unpacked the TPN that arrived by fedex today, changed a central line dressing (they soaked this one in betadyne for some reason), helped maintenance fix a clogged pipe (yup, that followed us here).. and then tucked Patrick into bed.

And now, with my laundry just about to finish drying, I’m going to wrap up this post.

Obviously, Brian found a way to get me an internet connect for an evening blog post. Don’t know if I’ll get to this tomorrow evening, though, as we’ll be spending the night inpatient.

Patrick is snuggled down safely in his bed after a busy, but good, first day of transplant evaluation.

It’s been a busy day, but better than I expected.

We had to get up early to get to the lab on time. But that wasn’t as hard as I thought it would be because, well, I was wide awake by quarter to 6. Thank goodness for going to bed early!

Labs went smoothly… only delayed by a late receptionist so we couldn’t check in. But the lab staff didn’t hesitate to get started while we waited. Better yet, they were more than willing to let me draw the labs to help protect Patrick’s line.

We headed downstairs to radiology next. They confused us by doing the tests out of the order that we’d been told, but other than that, it was smooth. Patrick wasn’t happy with the ultrasound, but did his best to hold still and cooperate. All staff were very kind and even kind of spoiled him. (10 stickers and a can of playdoh?). Then, we went for some x-rays. He saw that room and didn’t know what was happening and just started to cry. He didn’t want to let go of me, but once we explained and he saw that I wasn’t leaving, he relaxed. By the time the got to the “bone age” x-ray of his hand, he was actually kind of having fun.

The last test was a barium enema. That one is uncomfortable and very embarassing. The poor kid just sobbed through the whole thing. But then, in true Patrick fashion, was up charming the technicians minutes later. It was very interesting to see how Patrick’s intestines have adapted. I can’t wait to hear the doctor’s interpretations of what we saw on the screen.

We had a little time to grab food, but Patrick, for as tired as he was, didn’t want a nap. So, we grabbed some chinese in the cafeteria and let him play in the room. Then headed downstairs to meet the transplant coordinator. (Did I mention how nice it is that the appointments are literally an elevator ride away? One bonus to where we’re staying.)

We spent a little over an hour going over the transplant rules, risks, etc. Most of it was the same as what we’d already been told. It was encouraging to hear better survival rates. One thing that stood out to me was that we asked the team how often they wanted to see us while we waited for transplant. They were kind of confused.. Because they so rarely have a patient wait longer than a year, they don’t usually need pre-transplant checkups.

They talked about wanting copies of labwork done by our home hospital so they could watch for opportunities to improve his transplant listing status. And the talked a lot about what recovery is like. That is always difficult to imagine and think about. Recovery, immune suppression, infection, ostomies, biopsies, and on and on. That is what scares me. But they sound confident about a plan to help Patrick have as much opportunity and normality as possible.

We managed a nap before the next appointment, which was with the transplant dietitian and really uneventful. Really, the only news is that they think our home team is doing a great job with TPN, that we are doing the right things with feeding and diet for now, and that no, Patrick’s liver doesn’t seem to need omegaven.

With all of that done, we decided to sneak in a little family break. We packed up quickly and went to the zoo. We heard great things and it lived up to expectations. The aquarium had Patrick fascinated. The desert exhibit was impressive. The cat house was as boring as Patrick thought it would be. (He kept yelling “No tigers. Apes!”) And he was right, face to face time with the orangutans, and then the gorillas and monkeys, was much funner.

We couldn’t find the bears and were less than impressed by the lemurs, when we realized that Patrick’s monkey pacifier was missing. The buildings close at 5 p.m. and it was 4:55, so I ran to retrace our steps and found it in next to the orangutans. Just on time. But the run up the hill was enough to wear us all out, so we called it quits at the zoo.

We decided to go looking for dinner the old-fashioned way without GPS. We drove through downtown Omaha and found a neat little bakery/coffehouse place where we had some yummy sandwiches, hot chocolate and cider. Better yet, we found our own way back to the hospital without GPS.. and found that the coffee house is only a few minutes away.

Patrick was awake itchy most of the night last night, so when we got back we picked up some hydrocortisone to go with some baby lotion that a kind radiology tech snuck to us. So we gave Patrick a shower. (He is terrified of the shower in the hospital.) And then had a little spa time where I rubbed him all over in lotion, put cortisone on the worst rashes.. then put on his pajamas and snuggled him to sleep.

And now, I’d better hurry off to bed, too. These beds are still a little too small. The double bed is too soft, and the single bed where Patrick is sleeping is too hard. I spend the night going back and forth between the two. It makes the nights extra long.

I apologize for being so late in blog updates. It turns out that there is no wireless internet access in our room and my stubborn computer won’t connect to Brian’s phone hotspot.

Today is the first time I’ve had quiet time inside of the hospital’s wireless network. So, last night I sat down and wrote some blogs of the past couple of days and today I can finally publish them. Here goes: Omaha Days 1 & 2.

 

We arrived very late Saturday night. Because of a snowstorm and an evening departure, we spent an hour and a half in our plane on the tarmack waiting for our turn for de-icing. We finally got in the air, but because of weather, it was a very rough flight. Thank goodness Patrick did very well for the whole flight and in taking care of Mommy.

Because we were late, it took some extra time to get the rental car and then to get into our room in the hospital’s hotel-style housing called the Nebraska House. We checked in around 10 p.m. Then Brian started the journey to move our luggage from the parking lot two buildings away while I tried to corral Patrick and unpack enough to get ready for bed. The room is a decent size, though the beds are tiny and the pillows, hospital pillows. The whole room is a strange mix of hotel and hospital that is sometimes depressing and other times really helpful. (Sharps container in the room, cool. Pedal operated sinks, not cool. Handrails all over the bathroom that double as towel rods. Cool. Hospital style shower with low water pressure, not cool. Extra big fridge and 3 sinks. Cool. Hospital pillows on the bed. Not cool.)

And, in order to maximize storage for people who stay here a long time, the walls are lined with cabinets and drawers. For a tired Patrick, this is a wonderland. For our neighbors, not so much. We got a call early the next morning letting us know there were several complaints about Patrick banging the cabinet doors while I tried to unpack late at night, and we’ve been working extra hard to keep things quiet and polite since. (Thus teaching us that this is NOT the right place for Patrick to live post-transplant. A first reminder of the fact that this is an adult hospital, not a children’s hospital… and the Ronald McDonald house, which is made for children, will likely be a better fit and somewhat of a refuge when we need it.)

The night was late, and the next morning Patrick woke early. We were definitely overtired. But, we knew we needed to get out of the room until we all got caught up on some sleep and Patrick wasn’t going to have any early napping.

So, since it was Sunday, and because this week is the 4 year anniversary of the day we took Patrick to the temple to be sealed to our family, we headed over to the Winter Quarter’s Temple.

Winter Quarters is a historic site in our church. The Mormon Pioneers stopped there for the winter on their trek west from Illinois to Utah. There is a cemetary there, a new LDS temple, and a visitor’s center.

So, we went over to the visitors center and the missionaries gave us a tour. What a sweet start to the Sabbath day and a refreshing dose of the spirit after a difficult arrival in Omaha to have a sweet young Sister Missionary, a servant of God, bear her testimony about our Heavenly Father’s love and how he helps and supports us through our trials. She had gone through many medical difficulties herself as a child and shared with us how grateful she had been for parents to help her through scary medical tests. And as I stood in a replica of the log cabins pioneers often lived in with 8 or more people, often 2 families together, I decided that I could make peace with an unfamiliar, but very comfortable, hotel room and hospital far from home.

After stopping at our room for a very short, but much needed nap, we headed over to church. The ward (or congregation) assigned to the hospital is about 15 minutes away. We barely got there on time because we were trying to let Patrick sleep as long as possible. The parking lot was crazy full and so was the chapel.

It turns out that they had just changed the boundaries to combine two congregations. It was the first Sunday they’d had a chance to meet together normally. So, while it was nice to take the sacrament and hear the messages taught there, with Patrick overtired and a brand new primary presidency trying to start classes for a brand new primary, we opted to skip out early.

Besides that, our late arrival had left us without the opportunity to make good plans for food on Sunday. Normally, we’d hit the hospital cafeteria, but they all but close on Sundays. And first, we weren’t hungry. Then, we were trying to fit in sleep. By the afternoon when sacrament meeting ended, we hadn’t eaten yet. So, we skipped out and grabbed a much-needed dinner.

And then we came back, got ready for a busy morning, and got to bed early. I didn’t sleep much those first couple of nights. Too many worries about the day to come and not feeling very at home.

It’s time to put the blog catchup on hold. I was doing my best to get caught up because I want to write about this week as it happens. Alas, there is still much more to write, but I need to write today today.

Our suitcases are packed. We are leaving for Omaha this afternoon. Yes, that’s right. Omaha. It doesn’t sound nearly as exciting as Seattle, does it?

But Omaha has something not found anywhere else near us. It has one of the top Intestinal Transplant and Rehabilitation programs in the country.

Last September, the night before Patrick’s checkup at Seattle Children’s and then our flight home, we sat down to talk with our friends the Laylands. I don’t remember exactly the question they asked, but Brian answered the same thing I was thinking. It was time for a second opinion.

Seattle Children’s is a great hospital, but their intestinal transplant program is young and small. They barely do more than one transplant a year. Last year, they did none.

And while I am not eager for Patrick’s transplant to come, necessarily, because he is so healthy and happy.. I am also terrified of the prospect that it will come too late.

It is getting harder and harder to get a good central line (IV) in him to give TPN through. We’ve been limping by for 9 months with one that isn’t working well just because we are afraid the next one will be even worse. Other problems come along, too, the longer he waits for transplant. Liver problems. Worse bacteria causing his infections. Everything risky now gets scarier the longer he waits.

And so, as those possibilities become more and more probable, we think that it would be wise to have him cared for in the kind of hospital that regularly see that kind of complications. We don’t necessarily believe that a transplant will come any faster if we make a change, but we hope that we can involve doctors, nurses, pharmacists, etc. who aren’t seeing these complications for the first time.

So, last fall (I think it was October), I called the University of Nebraska Medical Center. I told them about Patrick. They sounded almost giddy about his case. (Have I ever mentioned that Patrick is an interesting case?)

We talked about what their program could offer. Nurses with more experience working with patients whose veins are bad. Testing to map Patrick’s vascular system to find less-conventional central access.

And we decided to try to go ahead.

At first, the insurance company pushed back. Transplant evaluations are expensive. They weren’t going to just pay to repeat the process to satisfy my curiosity about another hospital.

But while they were ruminating on that idea, we told Patrick’s GI, Dr. Jackson what we were considering doing. I expected his response to be uncertain. He likes the team in Seattle and recommended them to us. But he was enthusiastic about having another, more experienced team take a look.

And so, when he put that opinion in writing, the insurance company stopped fighting back. If Dr. Jackson wanted a second opinion, a second opinion we could have.

But, then they announced that they were making some major changes to how our out-of-state medical insurance would be handled.

And we were in the midst of the beginning of the holiday season. And so, we let it sick.

Finally, in January, once all the insurance had switched over, I made some calls again. We made some hurried plans to do an evaluation a month later.

And that is what brings us to where we are today.

I am a nervous wreck about this trip. They will do many more tests than our initial evaluation. X-rays, scopes, fluoroscopy, and a liver biopsy. 3 consecutive days of labwork. Two days of sedation. One night inpatient. And lots and lots of appointments. I hope my activities bag is big and interesting enough.

The week the schedule came, I had migraines for the entire week.

I’m scared of going somewhere unknown. I’m scared of trying to work with a new team. I’m scared to be leaving my awesome friends and support system in Seattle. I’m not at all happy that Omaha is not a fun winter vacation spot. Or much of a vacation spot at all. I’m worried that this isn’t a children’s hospital, even though children make up most of the intestinal rehabilitation population and they surely are used to working with them.

On the other hand, I am excited to have a more complete picture of how Patrick’s health is holding up right now. And to get a fresh set of eyes to look at the problem. It’s been nice making plans with a team used to helping families lug TPN across the country.

And I have very high hopes. This hospital has an amazing reputation. So far, the team has really impressed me. The cost of living in Omaha post-transplant should be much lower. And it’s not much farther than Seattle.

But first, we’ve got to get there and see if it’s all it’s cracked up to be. And getting there has been no small feat.

We are grateful for the COTA fundraising we’ve been able to do and the donations you all have made because, while insurance is covering these tests, they aren’t covering the trip this time, and that will add up.

On top of that, we discovered major plumbing issues in our crawl space last week and had to squeeze in some major repairs. And, I lost the diamond from my wedding ring this week, which will be no small cost to repair.

So this is one time where your donations really will save us. We couldn’t afford this second look without them.

And, despite all of that drama, and Patrick catching a bugger of a cold, to boot… The bags are packed and the plans are made and in just a few hours, we’ll be checking into our room at the Nebraska House in the Lied Transplant Center in Omaha.

I hope to post updates as they come. I learned last eval that there are days that are harder than others, though… And some news that we’ll need to ponder on. I’ll do my best to post as soon often as soon as I can.

At last… At long last! Patrick was excited for Christmas this year. The whole season was wonderful.

Brian hung the Christmas lights on time to turn them on Thanksgiving night. Patrick laid in bed and looked at them each night and smiled and got up every morning excited to see them.

I got out the Christmas tree during his nap one day. He spent the entire afternoon hanging all the ornaments on a single branch. He loved it so much, I got out three more Christmas trees so we could do it again.

Macy’s was donating $1 to Make a Wish for every Santa letter mailed from their store. So Patrick and I wrote a letter. He wanted Santa to bring him a car. I showed him how to lick the envelope to seal it. He licked it. Until it was sopping wet. And then he took a bite.

And then he stood on his tip toes and mailed it. And made me write one then and there and mail it, too. I asked Santa to bring him a car.

We made ornaments. Lots and lots of ornaments. And hung them on the tree. And mailed them to family.

We went to Festival of Trees. Patrick was old enough for Kid’s Korner. We bought tickets and made lots of silly stupid crafts, most of which were broken and discarded soon afterwards. We got his face painted. He sat on Santa’s lap. He asked for a car.

He kind of smiled for the camera but the photo looks funny because he had a Christmas tree painted on his face. He actually wanted to see the trees this year.

We made cookie mixes.
We made so many cookie mixes that the flour got on Patrick’s hands and then in his eyes, and it hurt so bad we had to go wash his face.. Then asked to go back and we did it all again.

(Yes, with more hurt eyes.) I about bubbled over with the joy of finally finding a way for Patrick and I to bake together. (Just let someone else add the eggs and butter.) I took too many pictures.

We went to zoo lights. He ran around excitedly from one display to another. He wouldn’t walk inside the “tunnel of lights” because it was too exciting.

 

We drove an hour to take a “sleigh ride to Santa.” Patrick was less than impressed by the sleigh ride. Or the car ride.

But he was excited to see Santa. But Santa had a car RIGHT THERE in the workshop and he didn’t give it Patrick. We assured him that it would be worth the wait.

We drove to Layton for the HopeKids Christmas party. Patrick got the meet the Disney princesses. Belle let him wear her gloves and Alice, her headband. There was a magic show. Daddy helped Patrick catch a t-shirt. He met Santa again. And asked him for a car… again. By now, candy canes were renamed “Santa canes.” He was given a Dream Light that he now can’t sleep without.

When I was growing up my mom had an advent calendar on the wall. It had 24 slots that we filled with 24 daily activities till Christmas. I found a pocketed calendar and decided to do the same in our house this year. Can you tell it went over very well?

It’s been a lot of years since I got to see Christmas through the eyes of a child. This was a very magical Christmas season.

At age 4, we have finally started ordering Patrick food from the children’s menu sometimes when we eat out. Not so much because we expect him to eat it, but because his tastes differ from my tastes and it’s no longer practical to share.

Here is a sample of a restaurant meal for Patrick. On the left, the food we ordered for him from the kid’s menu. Spaghetti and french fries. On the right, what he will actually eat.

The rest comes home, goes in the fridge, and is leftover for a week, at which point we throw it away.

But it’s a few dollars to let him choose what he wants to eat. Which, we you don’t eat much, kind of matters.

(P.S. At the end of this meal, he stopped at each table on the way out to personally say goodbye to all of the other diners.)

After seeing how much playing outside helped Patrick this year, I resolved to do better about letting him play in the snow this winter. We bought him some snow pants and some awesome snow boots that give his ankles enough support to not require a brace, even in the cold. And we topped it all off with an awesome own hat.

Mix it all together. Add one creative daddy willing to move all the snow from the front yard into one pile and make a snow slide. And you have some winter fun.

Or add some hungry missionaries willing to call playing in the snow with a toddler a service project while they wait for dinner. That works, too.

But I failed Patrick. I didn’t buy him waterproof gloves yet. And therefore, he’s not willing to touch the snow. Even if you put him in it like an overturned turtle.

And so Patrick prefers to play in the snow a little more like this…

Next to, but not in it.

Which seems a shame in a year with record snowfall.

One thing about having a child with special needs is that it means that birthdays come with an additional “treat.” The annual IEP meeting.

IEP stands for Individual Education Plan. It’s an outline specific goals that the school is going to help your child to accomplish in a school year and what services the school is going to offer to help make sure those goals are met.

IEP’s can be a great thing, but the creation of them is something that is often something parents dread as they so often find themselves having to fight to get their child the services they need. They require a meeting with a room full of people to complete. We literally fill a board room table with the teachers, district representatives, district nurse, speech, physical and occupational therapists.. and then little us at the end of the table. You have about an hour to go through all the formal documents required by law.. and to get goals written.

Patrick, though, was blessed with an amazing special education teacher and she did an amazing job for us this year. She started talking to me and to Patrick’s therapists about a month before the IEP meeting. She invited me into the classroom to sit down with her and go over goals. She even let me type up my thoughts. Then she took my concerns and discussed them with the corresponding therapists. She called it “the most collaborative IEP” she has ever written.

And I just thought.. well isn’t that the way it’s supposed to go?

But we were really happy with the result. First of all, over the summer and the first month of school, Patrick met or exceeded almost all of last year’s goals. The ones that weren’t met, we were able to rewrite so that they were more appropriate for him. So instead of writing that Patrick was going to use three word phrases and not caring what the words were, they wrote a goal for him to use both a subject and a verb. We made a goal for him to learn to use scissors and markers and to draw a line. We wrote goals for him to learn to jump. And a great big, very carefully-worded goal about Patrick learning to take care of a little shopping cart with his backpack in it so he can go where he wants at school.

As far as IEP’s go, it was a work of art.

But that was just the tip of the iceberg. Because of Patrick’s recent explosion of language, his teacher had started to worry about whether or not he was getting enough peer interaction in the special needs classroom. Last year, his classmates were at or just above his level mostly. But this year, he is a different kid and ready for some friends his age.

And so, we made a plan to transition Patrick into the regular preschool classroom at his school.

What a big leap of faith that was for me! Instead of one-to-one adult supervision, he’d be in a class with 20 kids and just 3 teachers/assistants most of the time. And those kids can all eat and all talk. There is more risk of allergens and more exposure to germs.. and who would change his diaper? And they’d go to recess in the winter.. but he gets cold fast in the winter and should he go?

And not to be petty, but it was this same class whose parents kept stealing the handicapped parking spots last year, leading to an argument that almost came to blows with a special needs parent. (I am pleased to report that this has NOT been a problem at all this year.)

But, over the next couple of months, he visited their class and I got a chance to visit the class and visit the teacher and especially see how happy Patrick was there.

And then, right after Christmas break, we made the switch. Patrick has LOVED his new class. I drop him off in the morning and walk him in to help him take off his coat and backpack and the fleece “scarf” I made to wrap around the keep his tubes warm. Then I help him find his backpack and sometimes help him and the other kids wash their hands.

Patrick’s spot on the rug is towards the back both for ease with his tubes and to keep him from bugging the other kids. (He likes to find their bellies and hold their hands.) He loves to talk about sitting on the rug.

His language just keeps getting better and better the more he attends. He comes home jabbering about his school day. It’s still in bits and pieces. But I’m catching on. Like the day he told me “Bear Hunt” and banged his legs, I knew they’d played “I’m going on a bear hunt.”

Best of all, I love that he is making friends. He talks a lot about the funny things Thred (Fred) did.. Or how he got in trouble for stealing Aiden’s spot on the rug and trying to tickle his back. And every morning when Patrick walks into class, I hear an excited “Hi Patrick” from one or another of the little girls.

We are seeing progress in other areas, too. Patrick loves crafts now. He sits and scribbles in a notebook and when something resembles a letter he comes excitedly shouting “Make K! K, kuh!” He’s cutting with scissors. He’s holding his pencil the right way. And.. it looks like he is left-handed after all. At least for now.

He’s hearing words and correcting his mistakes. I’ve been sad to see some things go. Yes is no longer “Ay”. Two is two, not “boo.” But it’s a marvelous tradeoff for hearing and understanding his thoughts.

Yes, big and good changes at school for Patrick.