Author: geekino

Our family had the incredible priviledge of being a part of Intermountain Donor Services’ (Yes! Utah) organ donation awareness kickoff event this year. It was an experience I’ll never forget.

We gathered in a conference room at the Salt Lake City Library. They’d pulled together a panel of transplant recipients, donors and donor families. Each took about 5 minutes and shared their experience with organ donation. Okay, okay. I spoke too. (You can a synopsis of the stories here: http://www.yesutah.org/content/story_7).

It was a pretty incredible experience and I was kind of sad that it couldn’t really be shared by more people. But Fox News ran this really nice piece  http://fox13now.com/2012/04/08/donors-recipients-celebrate-organ-donation/. And a very kind reporter/photographer from the Salt Lake Tribune followed Patrick around like papparazzi (much to Patrick’s delight) and published this short, sweet article. http://www.sltrib.com/sltrib/news/53854564-78/utah-waiting-celebration-donor.html.csp

Patrick really got the spotlight, as it was his job to “turn on” the fountain at the donor memorial wall. (He knocked on the lid of the place a man was hiding waiting to turn things on.. When the man popped his head out, Patrick’s was intrigued and delighted.)

But the point of the whole thing, and where the spotlight really should be, is the need for organ donors.

Now, most of us got the speech about organ donation in driver’s ed and really, most of us have checked that box on our driver’s license. And you may even donate an extra $2 when you file your taxes to that mysterious “organ donation” fund available there. (Which, by the way, helps families with enormous post-transplant medical costs.)

But I’d like to challenge you this month to do a little more. Take your pick of the suggestions below:

1) Talk to your family about your wishes for organ donation. Just cuz your license is checked doesn’t mean it will happen. That choice goes to the next of kin. So let them know your intentions!

2) Talk to your spouse about whether your children should be donors. We don’t like to contemplate that possibility.. but one mom at this event said her husband didn’t know her wishes, and so for the hour it took for her to arrive at the hospital, he was worrying about what choice should be made.

3) Learn about living donation. Did you know that there are 400 some odd people waiting for kidneys just in Utah? One woman at the conference shared how she’d decided to be a “good samaritan” donor and how we all have this “extra” kidney for what good reason, if not to save lives? Did you know they can also transplant partial livers from living donors?

4) Learn about bone marrow donation. Brian registered a month or so as a bone marrow donor. Requested a kit online, swabbed his mouth at home so they can make a match. Someday he may get a call saying there is a life he can help save. I can’t wait till Patrick’s older and I can register as a donor, too.

5) Donate blood. Simple as that. I am so grateful for the blood donors who made the many transfusions Patrick has needed possible. It’s a pretty easy thing. And one adult can save many children’s lives.

6) Oh, and if you haven’t, go online and register as an organ & tissue donor. http://www.yesutah.org/ Here’s the link if you live in Utah. It’s a big yellow button. And it will take you less than a minute.

Before Patrick turned 2, he went through a dozen central lines. However, we finally learned how to protect his line from infection by using ethanol locks and lines seem to finally be lasting long time. In August 2010, we replaced a line because it had become clotted. And the following March, wired over that because it was clotted, too. That was lucky line number 13.

And, 13 months after it was put in, we finally bid Patrick’s longest line a fond farewell this week.

 

It all started Thursday morning when we were getting Patrick ready for school. We were all dragging because none of us had slept well the night before. Patrick had had an especially hard night, but was excited for school.

Part of the morning routine is to sit down and withdraw Patrick’s ethanol lock from his line. (Technical reminder – Patrick has a double lumen, or two-tube, line. His TPN runs through one lumen. And we put ethanol in the other lumen overnight to essentially clean it and prevent infection from growing there.) Only on this particular morning, when I drew back, expecting to draw ethanol and a little blood to tell me that the line was clear, I got TPN. Not just a little… I filled a syringe with it.

That’s not good. Those two lumens aren’t supposed to mix.

So, I called the IV team and they said what I suspected they would – Patrick would need an x-ray where they put contrast in the line to see where it went. Then I called the GI on call, a fellow named Dr. Varier who told me the same.

I packed a bag of toys and diapering supplies, thinking that worst case scenario we’d need to spend the night and have the line replaced the next day.

We headed up to the ER because they could do the X-ray, put in a peripheral IV to replace the TPN, and admit us from there if the stay needed to be longer. It was a fairly slow morning and so they were pretty quick and efficient getting those things taken care of.

Patrick was bored and restless there, as usual, and sleepy from a restless night. So I was grateful when he agreed to let me wrap him in a blanket on my lap and read him books. I didn’t realize at first that it was a sign he wasn’t feeling well..

But half an hour later, he started to shiver, and then started to cry in that scared “I know this awful feeling” way that comes with line infections.

I checked his temperature and it was still normal, but when the nurse came in to check on us, I told her he’d have a scary high fever within the hour.

The radiology tech showed up to take us to X-ray and Patrick screamed his way all the way through the study as his fever climbed. Sadly, the test confirmed what I knew… if you put contrast into one lumen, you could easily draw it out the other. It also showed evidence of a leak in the line that the radiologist thought was under the skin.

By the time we made it back to the room, Patrick had a full-blown fever and the nurse was more than willing to give him some motrin and put him on monitors. Thankfully, soon after my sister arrived with lunch from my mom. And when they came to place an IV to give Patrick fluids, she opted to stay to comfort him, even though it meant she’d have to hang around until her ride could come again.

I was so grateful she was there because the next hour was a flurry of activity. Based on the X-ray, they decided that Patrick’s line needed to be replaced right away. And they said that the nature of the break meant that it would likely need to be disected out of his body. (Broviac lines are tunneled under the skin of the chest. Usually to remove the line, you can just pull them out of the entry point… but with a broken line, if you pulled it it could snap in two, so they were planning to cut down the entire tunnel and lift the line out. When the surgeon came to get my consent for the removal, I asked them if they’d consider placing a line at the same time, possibly even wiring it over the old line and putting an IV in the same vein. She said she didn’t know, but let me consent to both procedures.

Then we hurried off to ultrasound to let the surgeons see what available blood vessels they could place a new line into. (Thankfully, Patrick’s motrin was working by then and he was calm.) When the ultrasound was over, surgery was in the room waiting to take Patrick.

So, we piled all of my bags and Patrick onto a gurney.. packed up the fluids and antibiotics there hadn’t been time to start… and hurried upstairs to meet the anesthesiologist.

Jill left us at the OR desk. And Brian texted to say he was minutes away.

While we waited at the desk, I made a hurried attempt to drain Patrick’s belly to reduce the risk of him aspirating. The anesthesiologist arrived and we started to discuss those risks.. But before we could finish the plans, the surgery resident appeared again with news – the doctors had changed their minds. They decided that the fever made it risky to put in a new line – and in the hopes that they could only have to take Patrick to surgery once, they were cancelling the procedure and putting him on the schedule for Saturday instead.

By the time Brian made it to us, they had found a room and were ready to admit us.

At first I was really upset. We knew this line was going bad and were ready to see it go.  Still, it made sense to me to do what we could to attempt to wire over the line – and besides, Patrick felt awful.. and so we stayed. Every doctor and nurse seemed to have an updated version of the plan. I didn’t know at all what was going on.

With surgery cancelled, Brian headed back to work while I finished with the admission. And, because Patrick felt sick and hadn’t yet had a nap, we snuggled up in the hospital bed together.

Then the IV team came in and said that the break wasn’t under the skin at all, but at the repair site, and should be able to be fixed. I just shook my head – that didn’t seem right. But they said that it was at least worth a try, and so I agreed to let them repair the line. The head of the IV team did this one to make sure it was right.. still, he had the same problems as the 3 repair attempts before.. the line was leaky and didn’t flush right. Still, we hoped it would work well enough to at least draw blood cultures.

After the glue had a chance to dry, they used TPA to unclot the better performing of the two lumens and succeeded in drawing cultures. With the line working in at least one lumen, they decided to run antibiotics through it. (We didn’t even touch the other lumen that night because it has been so problematic over the past months that it seemed best not to push our luck by attempting to do anything with it until the glue had 24 hours to dry.)

And we waited. Patrick’s fevers stayed away, but then again, he was gettin tylenol, along with benadryl, to help combat his allergy to one of the antibiotics. He was more than content to just lay in bed with me watching Signing Time or reading books or sleeping, and I know all too well that a calm Patrick is a sick Patrick.

Friday that’s what we did.. just stayed in bed. Patrick seemed to be perking up some and having a couple of visitors helped. He lost one IV. (It was iffy and the sneaky nurse took it out while I ran upstairs to keep an appointment Patrick had scheduled with his rehab doctor, Dr. Gooch.) But they got another one in. Sadly, the 2nd IV require his hand be immobilized so Patrick just wouldn’t even try to use it. So I turned pages in books for him and helped to fetch the things he wanted.

Brian didn’t feel right about the radiologist saying the line was leaking, but the other doctor’s diagreeing with the results, so in morning rounds I asked them to review the x-ray again and tell me if there was or was not fluid leaking under Patrick’s skin.

Well, they came to a conclusion late in the day. I’d snuck away to a doctor because I was worried I was getting sick myself, so Brian was with Patrick when the team came by to say that the line was, in fact, leaking… and that they wanted Patrick to go to surgery that night to have it out.

So, I hurried back to the hospital as quickly as possible. Only to find that 3 trauma cases had just come into the E.R. and surgery was cancelled.

Meanwhile, they still didn’t have an explanation for Patrick’s fevers and so, with the glue dry for 24 hours, they decided to try to get Patrick’s other lumen working well enough to draw blood cultures from it. The first attempt didn’t yield many results.. and just before dinner, they put one more dose of the declotting agent in… And when they drew it out and flushed the line, Patrick started to cry.

Yup, that “I’m getting a scary fever, mom” cry again. I grabbed a thermometer and started watching. Within an hour, his fever had risen to 103.

The nurse gave him his prescribed tylenol as early as was safe. And the resident doctor happened by and saw how sick he was and prescribed ibuprofen, too. But that was all we could do. I stripped him down to a onesie and help him and sang to him until his fever finally dropped and he was able to sleep.

We knew then that the line HAD to go. Thankfully, Patrick was on the schedule for surgery the next morning. We did some fast talking to convince the surgeons that he could have a new central line, even though he was having fevers.

They took him to surgery a little after 11:00 a.m and he was back in the room recovering just after noon. The surgeon said they’d have “technical difficulties” placing the line, so he’d lost a fair amount of blood… But that otherwise things had gone smoothly.

Usually, Patrick is miserable and grumpy waking up from anesthesia, even for small procedures. I get called back to recovery to find him miserable and the nurse desperate for my help comforting him.

But this time, he was awake before I even got to him. He wasn’t exactly happy, but he wasn’t grouchy, either. He came back to the room and slept for the next couple of hours.. then woke up and asked me to sit in his bed with him. He snuggled right up and was – well, fine!

 

By morning, he was ready to be up and playing!

We have no doubt that it was the line making him sick and that as soon as the bad line was gone, that he felt better.

And so, with mixed emotion, we said goodbye to lucky line number 13 and welcome what we hope will be lucky 14 instead. They weren’t able to put it back into the same vein, for fear of infection (though nothing ever grew), and after seeing the ultrasound, I doubt we’ll get another line into that vein on the right again… But it is so good to see Patrick feeling better! Even his gut is more settled.

Praying this line lasts another year or more.

At long last, we had a look in Patrick’s brain last week. His MRI was done in January but the waiting list for his neurologist was very, very long. But I got a call midweek last week asking if we had time on Friday morning and we finally had a chance to sit down with Dr. Lloyd.

The scans actually looked better than I had imagined from reading the MRI report… nothing like the bit glowing spots you see on medical shows on TV. (Made me realize that they probably exaggerate those images to make it easier for the viewer to interpret what they’re being shows.)

The front portions of Patrick’s brain appear totally healthy. That means that his ability to learn and understand his world is completely intact. So is his ability to control his emotions.

But, as we’d suspected, those back portions do show damage. It’s called a watershed injury. What that means is that just like in a drought the crops farthest from the water source are the first to die because there isn’t enough water to reach them.. when Patrick’s heart stopped and his blood was being circulated by CPR, the areas at the ends of the blood vessels were starved for oxygen, and so they died and there is scarring in those places.

The result is what looks on the scan like a fuzzy white ring around the back third of Patrick’s brain. Instead of one big injury, it’s a mild/moderate injury spread out at the end of the blood supply.

We asked Dr. Lloyd about how this injury would affect Patrick. We weren’t much surprised by what he said. He said that injury would definitely affect Patrick’s motor planning. (By motor planning, I mean the way his brain sends signals telling his body how to move.)

He said that Patrick definitely has cerebral palsy. Because the injury is on both sides of the brain, both of his legs are affected. But, the right one (the one we brace) is definitely the one that will have the most problems because the injury is most severe on the left side of Patrick’s brain. He recommended that we continue with physical therapy and bracing to help Patrick’s ability to walk improve.

We asked if the injury would account for Patrick’s problems with speech, and Dr. Lloyd wholeheartedly agreed with our working diagnosis of apraxia. Again, although Patrick’s intellect and ability to understand are there, his brain has a hard time telling his muscles how to move, and so organizing the movements of his mouth to speak or his hands to sign is difficult for Patrick.

Dr. Lloyd did say, though, that he is very encouraged with how much Patrick’s brain has already been able to build new pathways. The fact that his right hand doesn’t show any signs of problems, despite that being where we first noticed the injury… and the fact that he crawls normally, even though at first he dragged his right leg… Those are signs that Patrick’s brain is adapting and learning to work around the injury. And he said that with continued therapy and school and help at home, that he expects Patrick’s abilities to continue to improve.

He told us that it is very important that we get Patrick working with an occupational therapist, something we’ve been leaning towards, but now know we need to make a priority.

Finally, we talked about Patrick’s vision. Apparently, the greatest area of damage is in the part of the brain that processes sight. We’ve been watching Patrick’s vision for a while now. We’ve noticed that he tends to get very close to things he wants to study, that he gets frustrated trying to work on puzzles that are too complicated and just can’t quite seem to sort out how to fit the pieces in. Well, Dr. Lloyd said that he would consider it very likely that Patrick has some degree of cortical blindness.

This doesn’t mean Patrick is blind. In fact, like the rest, it is likely that his eyes function completely normally. However, the signal in the brain might be confused or cluttered, making it hard for him to interpret what he sees. Dr. Lloyd recommended that we take Patrick to an opthamologist to have his vision evaluated, and he recommended that we talk to the school district about vision therapy.

I didn’t know they even had such a thing, but when I talked to Patrick’s teacher, she confirmed that yes, they do have a vision therapist regularly in the classroom. She also said that Patrick does act in class like sometimes he has a hard time seeing. She said he often leaves his chair to get a closer look at a picture during circle time, then once he’s seen, goes back to his seat.

So, we’ve got an appointment, though very far in the future, with a pediatric eye doctor and hope to be able to sort things out soon. In the meantime, I’m trying to be more mindful about being patient with tasks that might require sorting out a more complicated set of visual input… and I’m being more diligent in the eye exercises Patrick’s early intervention physical therapist were so certain he needed.

And that was about it. Dr. Lloyd said that the damage isn’t progressive, just scarring from an injury. There isn’t a risk of seizures that would cause further damage, either. (Whew.) But, he said that he wants to follow Patrick regularly for the next several years to make sure that he continues to improve. We’re on the waiting list again for another appointment, hopefully in 4 months.

So – not a lot of new information.. But it is comforting to know that our suspicions have been correct and that we have been doing the right thing for all this time. If anything, these diagnoses will help us to get Patrick even more of the help he so greatly needs.

My last several posts have made February sound like an awful month. Here are some of the good things that happened in February.

1) Patrick started speech therapy. His new therapist is wonderful! Our previous therapist was very negative and critical when Patrick couldn’t attend well to a task. This new therapist is SO kind to him! She is very patient. When his attention wanders, she redirects him or allows him a change. When he throws things to get out of a task, she simply stops and waits for him to pick up what he threw. We’ve been using picture exchange with him, a method where he trades pictures for toys or games or activities he wants. It’s not words, but it is language, and it’s teaching him to respect and obey her. I’ve never seen him so attentive in therapy. Not only that, but in just our second session, she noticed that he wasn’t using the front of his mouth for most words. She taught me a simple physical prompt and already he’s improving his pronunciation.

2) Patrick discovered sign. I mentioned Signing Time, but I don’t know that I can emphasize this enough. In just a couple of days, Patrick learned he could use sign language where his words were maybe not enough. He is probably using at least 20 signs now, REGULARLY, to communicate what he wants and needs.

3) We learned to make Dr. Pepper chipotle pulled pork. This was the result of a Sunday sick at home. It was easy and it was SO yummy. And, it makes me feel like a much better cook because I know how to cook a roast in the oven instead of the crock pot.

4) We got to tour Papa’s work. Brian’s dad is an engineer in a company that manufactures printed circuit boards. They had an open house last week. It was really neat to see and learn about, and Patrick got an evening with one of his favorite people on earth, eat his new favorite meat: hot dogs… AND he got to play with a magnifying glass.

5) Patrick learned to tear. This is something they’ve been working on at school.. tearing paper. I know that sounds bad, but for Patrick, it means that he can now tear tortillas and bread or bread up chips into pieces that he can manage. This gives him much more control over his eating and is a HUGE step towards independence. Also this month, he learned to put his legs in pants. Learn to pull them up, and he’ll be able to do it all on his own. He learned this at home, not at school.. But in other school fun, a police officer visited the school and gave Patrick a toy police car and that made for a very fun week.

6) After several hours on the phone hunting down as much information as possible about the speech therapy bills that are still screwed up, I called the manager of that office again and got an apology from her! And a promise to personally follow up and fix the problem. And a promise to never, ever bill two separate kids of service for Patrick together again. Meaning I might just, maybe, kind of dare to consider going back to that clinic for physical or occupational therapy again.

I dunno, though. I’m on the fence for that subject. But the ball is back in my court. And that feels good.

7) We celebrated three years as an eternal family. The next day, we celebrated valentine’s day with cookies, candy, flowers, toy cars, balloons, and a quiet dinner at home.

8) Oh, and we finally made it off the wait list for the neurologist. Sorry to leave you with a cliffhanger, but the actual visit happened in March, and besides, deserves its own post.

So yeah, February wasn’t all bad. Still, I’m glad that particular set of trials is over and excited to see what good things March will bring.

By the 3rd Sunday in February, I was dreading them. It seemed things always got a bit worse on Sunday. But I was doing my best to make the best of things. Brian was feeling less tired, but had picked up my sore throat and his tonsils had just about filled his throat, making it hard to sleep. So Patrick and I had made it through church on our own for a second week in a row, and we’d gone to Sunday dinner with my family.

On the way home, I decided we all needed some better time out of the house, so I called Brian and asked if he wanted to go for a drive. We live in the only place in the world where you can drive to 4 LDS temples in an evening, and decided that we would. It had snowed that morning and there was still a light dusting that made the temples glow. Patrick loved it, cheering “Mo’ mo’, ‘ple ‘ple” (more temple) from the back seat.

Snow is unnerving to a kid whose gait isn’t steady. Patrick was very proud to have taken these steps.

However, he also kept saying “scrub scrub”… which I thought was him just jabbering until we got home. I went to get him out of his seat and found his leg soaked in TPN. And when we got inside, I found that he’d bitten a small hole in his broviac line.

So, we hopped back in the car and to the hospital. They were able to repair the line, but with a caution that this was the last time they’d be able to fit a repair on only one lumen.

All seemed a little more back to normal. I was feeling better, except an ear ache, and Brian slowly was, too.

Monday was a peaceful day, mostly. Brian went back to work. I tried to catch up around the home. And that evening, we celebrated 3 years since having Patrick sealed to our family by visiting that temple one more time.

On Tuesday, I took Patrick for his first of what was supposed to be a series of free occupational therapy sessions at the community college. He’d been seen the week before and they were excited about all the students could learn from him.

We arrived a little late, partly because Patrick was not sleeping well anymore. (He kept waking up in the early morning thinking it was time to get up). So I’d let him nap long. And then there was an accident on the way.

But, they were ready for us.. we were only a few minutes late and I walked in to find – that the PT who wasn’t supposed to be available, was there in the session.

For the first half of the session, they watched him play. They tested his balance and his trunk strength and rotation and felt the muscles in his foot.

Then, they sent the students and Patrick off to work at a table, and they stopped to talk to me. Turns out, they’d discussed him earlier in the week and decided that his medical needs were greater than a student program could accomodate. They were especially worried about his nut allergy and about his g-tube being pulled out. They’d decided they couldn’t handle those emergencies. (And yes, I’m still baffled as to why they thought they would be the ones to handle them at all.) Anyway… in that one visit we went from a plan of free weekly OT and PT, to a promise to write a home plan for us and see him once or twice a year to update it, instead.

I was flabbergasted and didn’t know what to say. But on the heels of the rest of the month, I didn’t have enough fight in me to try to change their minds.

I had learned some things from the experience, regardless. Both of the professors/therapists agreed that what Patrick needs most right now is occupational therapy. They said they could see so many ways that a good occupational therapist could help him.. balance, attention, independence, and more could be helped.

And so, I came home and made an appointment with his rehab doctor to discuss how to start private OT, instead.

My ear got to bothering me and I finally saw a doctor, who prescribed me antibiotics and decongestants to get the fluid out of my ears. That is, after she looked in my throat and said she wouldn’t be surprised if I had a mild case of mono, too. Oh well, it was quick and easy and other than the drugs that made me jittery and stupid, made me feel better, too.

In the meantime, Patrick’s belly started to get very upset. The worst it’s been since his last surgery. He went from eating very well, to barely eating, and started to never make it through the night sleeping. His output went through the roof and he just wasn’t himself.

Finally, Saturday I called his GI on his cell phone and requested blood cultures and a couple of other tests. With those started, we gave Patrick some ibuprofen, which seemed to help, and tried to get him to rest.

He ran low-grade fevers on the next Sunday. I did, too, but I think for other reasons. And then, he started to get better. He’s been up and down since then. Obviously, the bacterial flora in his gut is out of balance, but we don’t know if there’s something more.

Sadly, Patrick’s tests were still negative for mono after 3 days. However, after 6 days, his doctor called to tell me that they’d been positive for a bacteria called bacillus. We fought bacillus for several months a couple years ago.. finally shook it and learned later that there had been some contaminated alcohol wipes. But it also grows in old restaurant rice. So there is a chance that Patrick picked up the bacteria from rice.. after all, it’s one of our favorite foods.

So we drew labs again. So far as I know, though, those were negative. It’s highly possible that the first positive was a false positive, an accidental contamination that happened in the lab. We just don’t know. I kept the suitcases packed for 2 weeks to go to the hospital. Finally unpacked them today.

In the meantime, I let myself get distracted one morning while Patrick was playing and didn’t notice he’d gotten his tubes caught around a kitchen chair. He wanted a toy and pulled, HARD. He broke the Y in his tubing, his safety pin, and…. his repaired line.

So, we spent the rest of that Monday at the hospital. They tried to repair the line, but it didn’t go smoothly. First, as we’d been warned, they couldn’t repair just one lumen. We had to shut off the TPN so they could cut both lumens. Then, once the repair was made, the line didn’t flush well.. the repair segment seemed off. And so, instead of going home as we usually would have done, we waited for the glue to dry.

Patrick now asks to wear a hairnet and masks like everyone else.

Patrick didn’t seem to mind this much. Tube free in the hospital and free to play? We shared a hot dog in the cafeteria. Then went up to the playroom to play. We stopped in the gift shop for a box of sticker books. Then he practiced climbing up and down the stairs for a while. And finally, we came back to the room for a nap.

But the line still didn’t work once the glue dried. So we waited through thre 30 minute rounds of TPA (declotting agent) with a nurse who was obviously not comfortable with central lines. (My favorite quote was, when she asked me if cleaning the line with alcohol wipes was ok while just brushing over the line with one. I said yes, but we scrub for 15 seconds. Hospital protocol. And she said, “Oh, you count?” At least she did it again the right way.)

Anyway – around 7, IV team came back and was brave enough to actually work the line until it flowed. And at 7:45 I threw a fit about it taking too long to discharge us. We got home to TPN by 8:30 (thanks to a motivated daddy).

The line still doesn’t work quite right. It doesn’t draw well. In fact, one side doesn’t draw at all, unless Patrick’s got one hand above his head. The home nurse said it’s “positional”, or in other words, that maybe he’s outgrowing it, pulling it farther back into the vein so it sticks to the vein wall when we draw, unless he changes it’s position by lifting his arm.

I’m still torn as to whether or not to keep trying to work with it or talk to the surgeon about replacing it while we still have the option of wiring over it.

So we ended the month much healthier and with working cars. We don’t have occupational therapy yet, but know a direction to go in at least. We have a line that we can give TPN though, even if only one side draws. Patrick’s belly is still not quite right, but I’ve switched draining methods at night again and belly aches aren’t waking him any more. His output isn’t perfect, but it’s trending downward. Things are returning to normal again.

It snowed in the valley Saturday night. The snow cleared all of the smog out of the air leaving this fresh and beautiful and new looking. To me, Murphy was also washed away with that storm. February is over and we are starting fresh with new direction and new opportunities this month. Already to me, after the lions of February, March feels like a lamb.

Once we were settled at home after Patrick’s infection, Brian finally dared go to a doctor. And, after some searching, came back with a diagnosis of mono. It hit him really hard! Fevers that were only controlled by taking maximum doses. Exhaustion. Aches. Pains. He was miserable. For the next week, he worked when he could, and then he’d come home and sleep all he could.

I don’t know if it helped or hurt that the car was in the shop. On school days, it meant that Patrick and I got up early and drove him into work and then sometime in the afternoon, went back and got him and brought him home. That meant sometimes that he got home earlier, but sometimes it meant that he was stuck at work while we finished up with a therapy appointment, too.

I also wasn’t much help myself, having picked up a virus of my own. Thank goodness for little whispers of inspiration. I was watching Patrick’s birthday video with him for the 300th time and realized how similar it was to the Signing Time series, and that if he was immitating words and actions he saw in his home movie, he might just be ready to learn to immitate signs and words. So I brought home all the DVD’s I could find at the library and Patrick..LOVED..THEM! Patrick has never been much of one for TV, but these videos reach him! And so, since I wasn’t feeling great and Brian needed sleep, we spent a lot of time curled up in the basement watching Signing Time.

Within a week, he was already using many new signs and demanding songs from these videos as lullabies at night.

And so, we survived that week. At first when I found Brian had mono, I freaked out, worrying about what would happen to Patrick if he caught it. I mean, a basic cold can set him back for a month. But, when I called the transplant team to report our bad news, they were kind of excited. They said it would really be better for Patrick to catch mono before transplant so he wouldn’t be at risk for it’s complications if he was exposed after. Therefore, as a family we did a lot of kissing and food sharing all week.

It was a tough week. I often take Brian for granted. And I missed his help a lot while he was sick. Thankfully, after just a month he’s seeming to feel much better now. Tired from time to time, but feeling like himself.

And by the beginning of week 3, we had our car back at last complete with a shiny, new engine. We also managed to squeeze in an OT and PT evaluation and the first therapy session with Patrick’s new speech therapist. Not too shabby for a very sick family.

Brian says that our family has adopted a new law: Murphy’s Law.

If you’re not familiar with this law, it’s simple. Simply, “Anything that can go wrong will go wrong.”

Rewind to the end of January. January 29th, to be exact. A Sunday. When we got up for church on Sunday morning, Brian wasn’t feeling well. He was tired and a little warm. He’d worked really long hours all the week before, though, and it’s not uncommon for that to make him sick, so we just forged ahead anyway.

We went to church, took naps, and then decided to drop his car at the shop on the way to family dinner. We’d had it in the shop the week before and they’d implied that it had a broken head gasket, maybe worse, and may need a new engine… but repairing a car we own was still cheaper than replacing it, and so, to the shop it went.

I knew by then that Brian was really, truly getting sick and so we made a quick escape from dinner. About 8, we put Patrick down to bed. But he didn’t sleep. He just kept calling for me. So I went in and did my best to comfort him, but he still wouldn’t sleep. At 9:30, his temperature was 99.4 and he was not sleeping in my arms, so I decided to try putting him back to bed.

At 10, Brian went to check on him. He felt warm, so he checked his temperature again… 102.5. I had a good cry, then packed our bags, and we headed to the hospital.

Patrick was really doing well, considering.. His fever didn’t go much higher and he wasn’t having chills.. Still, he’d had an upset tummy all the week before and we knew odds were pretty good that he had an infection.

I tried calling the GI on call to let them know we were coming, but they didn’t respond to pages, and we knew Patrick needed the E.R. regardless, so we just went in.

Amazingly, the ER was fairly quiet, and it didn’t take long for them to show us to a room. Things started out as usual. They gave Patrick some Motrin, drew labs, took his history. However, the nurse practioner (NP) who was assigned to Patrick got all caught up in me saying that he had a tender tummy. They sent Patrick back for an X-ray, which was normal…

And then we waited. Especially with Motrin on board, Patrick wasn’t terrifyingly ill this time, and so they seemed to not know what to do with him. They paged the GI on call, too, and didn’t get an answer. And so we sat, and sat, and sat. They didn’t start fluids or antibiotics or even put on monitors. I was pretty upset at the lack of action, but turned my attention things in my control, and I did my best to get Patrick to sleep, which is a feat. Finally, around 3, I’d finally succeeded and even fit in a little nap myself…

Then Patrick’s Motrin wore off and his fever came back… full force this time… Quick rising temperature, chills, rigors (uncontrollable shaking). He was miserable, we were helpless… And the GI on call still wasn’t answering.

Finally, they called the on call liver doctor (who is also a GI) and he told them in no uncertain terms that Patrick always gets antibiotics and an admission with every fever. The fact that Patrick hit septic shock protocol almost simultaneously kind of sealed the deal.

So – they started antibiotics, gave some fever reducers, and finally got us to a room around 5 a.m.

The next day was rough. I told several of the doctors that Patrick’s last infection had been resistant to the usual drug cocktail and gave them the name of the antibiotic that had treated it… however, it wasn’t until the attending (who happened to be Dr. Jackson this time, hooray!) did patient rounds that they caught on and started an antibiotic that actually worked to treat the infection.

Until that point, Patrick was so miserable that he wouldn’t even sit up in bed. I could barely moving without him being in agony. And so, since we also had gotten no sleep, I just stayed in Patrick’s bed. All day. Thank goodness for a good friend who brought me a muffin and yogurt and some amazing chocolate drizzled popcorn… because that and some crackers, string cheese, and water provided by the nurses were all the nourishment I got all day. I couldn’t get out of bed for longer than a trip to the bathroom, and that only with support from the nurses.

Finally, though, that afternoon, after the right antibiotic had been given, Patrick made a quick turn-around. By evening, he was willing to sit up and play in bed. By the next morning, we were begging child life for more toys.

However, we didn’t do too badly on our own for entertainment, either. First of all, once rested, Patrick started out the morning hiding in his blankets with me… which reminded me of someone telling me about how great blanket forts are in hospital rooms. So, by our 3rd morning, I took the bedding from my bed and a few safety pins and made us a fort.

We also managed to steal a wagon that we filled with toys, got some markers and stickers from child life, and Patrick decorated pictures for the walls. (As well as some fine artwork on his hands and arms.)

We made regular visits to visit Spiderman and the playroom, and on one outing, found a couple of volunteers with a guitar and some drums singing in the waiting area of the 3rd floor. We stopped to listen and before I knew it, they’d recruited Patrick and another boy into the band.

We helped provide some hands on learning opportunities from some student nurses, created an upset with the nursing staff by telling the charge nurses that they were overtasking Patrick’s nurses, let and entire class of med students practice finding Patrick’s spleen (at least his splenomegaly is good for something), practiced walking up and down the hospital stairs, replaced Patrick’s worn out button, caught up with some of our favorite residents (who were first years when we met them and now are finishing their residencies and LEAVING US! With new first years to train, no less!), and last, but certainly not least…

…taught Patrick to ride his IV pole.

With some prodding, we convinced them to send Patrick home on Thursday afternoon with IV antibiotics to give for the next 2 weeks and a new oral antibiotic regiment to try to wipe this particularly nasty, resistant bug out of his system once and for all.

While Patrick and I were at the hospital that week, Brian did his usual tricks of balancing home, work, and hospital visits (to feed me and keep me sane). But his fever didn’t go away. In fact… He ran a consistent fever all week.

And he did it all in my car, because his was in the shop. Turns out we needed a new engine, after all. But at least when you’re in the hospital, you don’t care much that you’re a one-car family.

Patrick weighs 14.8 kilograms, 15 with clothes on, and is exactly 3 feet tall. I know that because he was weighed and measured no fewer than 6 times in the last month and a half. We were in doctor’s offices that often.

Patrick prefers to spend that in-office waiting time inside the cabinets under the sink.

And I have sat on this post until I had all the doctor’s input to make sure that what I was posting was accurate.

So let’s rewind in time a bit. Let’s go back to November when the clinic that does Patrick’s speech therapy finally got around to billing the services that he received at the end of summer, supposedly with new billing codes that would clear the insurance company because they met the criteria AND were supposed to have gone through the preauthorization process.

Well, they didn’t. They came back denied. My case manager couldn’t get them to go through and so in the middle of December I found myself suddenly trying to understand the nuances of speech diagnoses. Finally, I got to the point where I realized that we were going to need to change providers to free ourselves of the baggage of two years of partial diagnoses and billing errors. And, as my research had turned up that it is not only possible, but quite probable, that Patrick’s speech problems are neurological in nature, and that that is the only diagnosis that will persuade our insurance to pay for speech therapy, I decided that 2 and a half years after his probable injury, it was time for Patrick to see a neurologist. If we could get a neurological diagnosis, it would be so much easier for a new provider to bill the way the insurance wants.

And so, I called and left a message for Patrick’s pediatrician requesting a referral. And then I called neurology, where I found out that Patrick was considered an existing patient (and probably didn’t need a referral.) And, because it was quiet between Christmas and New Years, they were able to squeeze us in to see a Physician’s Assistant that same week.

What a strange conversation that was. The PA had reviewed Patrick’s notes from several years before where Neuro had come to consult after his cardiac arrest and given Patrick an all-clear, but call us if things change, diagnosis.

And then here we were. She said, “Well his movements are symmetrical” and we said “But his development has not been, oh and by the way, take a look at his right foot.” She watched him write. She listened to him talk. She measured his head, which she said was quite small (which we knew but had attributed to Short Gut and not the brain injury). As she realized the extent of Patrick’s developmental delays and other problems, she seems truly surprised that we had made it two and a half years without coming back to neurology sooner.

But, when we explained that he’d had a team of early intervention therapists and private therapies and an amazing rehabilitation specialist, she agreed that we’d been doing everything right.

In fact, the only that that surprised and scared me was when she asked if Patrick had been having seizures and explained that he was likely at risk for them.

She didn’t question at all that Patrick was showing all the signs of a brain injury. In fact, she explored the option of making the diagnosis then and there without any further testing. But, in the end, the attending doctor wanted an MRI and we agreed it was probably time. Especially when she explained that now that Patrick was 3, he would qualify for “conscious sedation” instead of general anesthesia. Although still risky, it meant no intubation and a much easier recovery.

And so, we went ahead. That test was done just last Monday and went about as smoothly as could be hoped. The only catch was that, even though I know I said it more than once, it didn’t sink in when I said that Patrick needed TPN or something like it during the test, that they’d need to order a replacement for the TPN. But they got it done and he got a lovely nap and a braver-than-usual-though-clumsy-and-stupid afternoon.

And last Friday I finally got the results, which were just what we expected. Patrick does indeed have an anoxic brain injury. It was caused by a lack of oxygen to his brain during the 15 minutes that he needed CPR. It has a “watershed distribution” which Wikipedia has taught me means that the injuries are on the far ends of the blood supply. It’s the type of injury often caused by a stroke and that would explain easily why the muscles tone and his speech and fine motor skills have all been affected.

And…. That is all I will know until we can meet with the attending in person, who unfortunately didn’t have an appointment available in Salt Lake until May. So, we’re on the waiting list, but we aren’t anxious enough to travel to his other office because, well, it doesn’t change much.

We are just getting a name for what we already knew.

Which leads me to our next Dr.’s appointment. Remember the developmental pediatrician I mentioned in Seattle? Well, after hearing the resident’s report, he came in and talked to us. We told him all the same things about Patrick’s motor skills and speech skills being delayed, about his sometimes spotty judgment, and the other problems that we attribute to a suspected brain injury. While he listened, he felt the muscle tone in Patrick’s legs, tested his reflexes, and then asked if Patrick would walk for him.

So we took our bare-legged little boy out into the hall and let him walk and run.

After just a few minutes, the doctor brought us back to the room and told us not to listen to our emotional response to the words he was about to use. He told us he wasn’t telling us anything we didn’t already know about, but he was going to give it a name that we could use to make it easier for Patrick to get services to help his development.

The diagnosis: Cerebral Palsy. His form is called “diplegia” meaning that it affects his legs. And it is “of the mild to moderate variety.”

Now, before you start googling and find all kinds of pictures of children with severe, crippling muscle spasticity, let me give you a definition from the National Institute of Neurological Disorders and Stroke:

“The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time.”

Did you catch that? Cerebral Palsy means simply that before the age of 3, a child had neurological damage that permanently affects the muscles and coordination of the body. It is, by definition, NON-PROGRESSIVE. That means that it is what it is. It won’t get worse.

When I ran this diagnosis past Patrick’s rehabilitation specialist, she defined it as an injury to the developing brain that affects the muscles and does not get worse over time.

In other words, we have been given a name for what we already knew. And because we have a name – a name that is well-known and carries a pretty powerful emotional response – it will be easier to get therapy to help Patrick learn to walk and to talk to the best of his ability.

See that turn inward turn in his feet? The way his right toe drops and points? That’s what the doctor called diplegia and is the reason he wears a brace.

I wanted to get some other opinions before we published this too broadly. Patrick had an appointment with his GI and with his Rehabilitationist right after we got home. And I wanted their opinions, too, before we subjected you to whatever just happened in your mind when you read those words.

Dr. Jackson, the GI, sent a resident in to do a workup first. And so he was forewarned and I didn’t get to see his initial response. He was hesitant at first to consider the diagnosis because the case is so mild. However, he watched Patrick walk and felt the muscles in his legs and agreed that, although it doesn’t tell us much, that the diagnosis fit and, as it might help get Patrick needed help, he agreed with it.

The rehabilitationist was even more hesitant because, she said, it was such a broad, general diagnosis. And, on the spectrum of possible symptoms, Patrick’s are SO mild that it almost doesn’t merit giving it a name. She said that her hope would be to give more specific diagnoses like she has been doing like, for example, dystonia to describe the muscles in his legs and apraxia to describe his speech. But, after some thought, she too agreed that it could be a helpful diagnosis to have.

And so, until we can meet with neurology and get a name for the actual injury and get their opinion, this is the name we’ll be using.

So that’s not what you expected I’d be writing about the doctors saying, is it? In fact, on the gastrointestinal/transplant front, we don’t really have new news. Patrick is probably the healthiest he’s ever been. He’s not gaining weight quickly, but he’s getting taller.  His liver isn’t better, but it’s not worse and according to labs, he’s borderline healthy. Despite an obscene number of drug shortages of crucial TPN nutrients, Patrick seems to be able to absorb what he needs from the half-dozen nutritional supplements I’m giving him. (Which is only bad news in that I HATE having to give him a half dozen nurtritional supplements every day: some crushed, some as drops, some in suspensions that stain your fingers.)

I asked the transplant dietician if I should be trying harder to feed Patrick, either orally or with his g-tube. She said that she didn’t see any point in pushing things now that might make things worse. He is happy and healthy and likes trying new foods. And that is what will benefit him most after transplant.

The transplant team was pleased with where Patrick was and said to stay the course.

Patrick’s GI back home was happy, too, and gave Patrick a nifty pair of winter gloves that he faithfully wears for hours at a time because they came from “Ko-ko Ja-ja” (Doctor Jackson).

Napping, gloves on, on the way home from Dr. Jackson’s office.

And we are armed with some better neurological information that is helping us to get Patrick the therapy he needs.

I won’t go into much public detail about the issues I’ve had with billing on Patrick’s therapies. Suffice it to say that Primary Children’s Outpatient Rehab in Taylorsville has lost a speech patient due to their billing practices. I think, after months of battle, I’ve got this sorted out so our insurance can pay those bills, instead of us getting stuck with them. We’re hoping that we don’t also have to change physical therapists, but time will tell.

Meanwhile, I think I’ve found a wonderful new speech therapist for Patrick. Her office is a little farther away, but it’s a small, family-run office. The therapist has in-hospital experience with medically-complicated children AND is very focused on the role that overall development plays in developing speech. Patrick enjoyed his evaluation and so we hope that all goes smoothly with the pre-authorization process and we can start therapy soon.

After a much needed nap, we felt good enough to dare go out. I know a couple of other families with kids in the Intestinal Rehab program at Seattle Children’s through my online support group. So, we headed over to University Village to meet one of them. It was raining, but Seattle’s made for rain and there’s a decent little indoor playground there. It was fun to visit with the other mom over a light dinner from a coffee house and swap stories about Short Gut and adoption. (Her son was adopted, too.) And Patrick thought having daddy help him on the playground was great fun, too.

Playing in a display curtain at the EMP

We grabbed some cupcakes at Trophy Cupcakes, then headed up to a park on Queen Anne’s Hill to give Bailee a good view of the city and space needle.

We were going to eat our cupcakes there, but the rain had turned bitter and cold, so we just went back to our room and got Patrick ready for bed and ate them after he slept instead.

And speaking of sleep, after some very harrowing vacations in the past year, we finally learned how to help Patrick sleep in a hotel! So well, in fact, that he was fine with the fact that he was able to ignore the fact that he was sleeping on the floor of the same room as Bailee.

So here’s the discovery. First, I mentioned the air mattress. Having Patrick comfortable with his bed was a big plus. As was the fact that it was just right for me to lay down with him while he fell asleep, and then slowly roll out onto the floor next to him and sneek away. Second, we drugged him. Not with cold medicines. With melatonin. A GI fellow prescribed it for him last time he wasn’t sleeping in the hospital. And when I asked if I could use it for travel, he not only backed the idea but was downright excited about it. The smallest possible dose is enough to help Patrick fall asleep within half an hour and keep him sleeping for 8 hours straight. At which point he is decidedly awake. So, yes, he was up at 5 a.m. But he slept all night!

Wednesday morning we had a developmental study at the University of Washington. One of the surgeons here is researching how intestinal failure affects development. So we met with a developmental pediatrician and a developmental psychiatrist. They did a test to determine his current developmental levels. We’d heard reports of how boring and useless this study was, but for us, well, it was just like all the other developmental studies Patrick has ever had done. Except he was sleepy and extra uncooperative and probably got a lower score than expected. He also surprised us by doing some things we didn’t know he could.

In the end, we actually got some good information from the visit, which I’ll cover in my next post “What the Doctors Said.” Suffice it to say that this once, we felt that it was worth the cost of the extra day of travel and the three and a half hour appointment.

We left our appointment just after noon and went to pick up Bailee at Pike’s Market, where she’s spent the morning. The combination of bad GPS directions and my confusion got us a little bit lost along the way, but we eventually found her, then found lunch, then found our room for a TPN delivery and a good nap.

We went fancy for dinner that night. We took Patrick on the monorail, and then walked to a Tom Douglas restaurant called Cuoco. Brian was very excited to find arancini on the menu and Patrick loved the beets and allergy-safe spaghetti.

On the walk back to the car, though, a light drizzle turned into a bitter cold rainstorm. We were two blocks from the garage when the street we were on crossed a major road and we couldn’t cross. We ended up detouring a few block more out of our way and we were all bitter cold by the end.

The next morning, we got up early and packed our room. Two nights in a suite on Lake Union was about all we could afford for that trip. Besides, we had an invitation to visit the Laylands in their new home.

With a morning to kill, we decided to visit the Experience Music Project. They had some really fun exhibits. In the Avatar exhibit, they have a magic touch screen table that, well, I don’t think I can give justice in describing here, but if you have the chance, check it out.

Patrick tried on these really big shoes.

And Brian stepped into a scene from the movie and got to be animated.

Then we went up to the sound lab on the first floor. Patrick played a bit with the keyboards and guitars, but took best to the drums. Is that a surprise? He and daddy had a jam session on a real drum set.

After the museum, we grabbed some lunch, dropped Bailee at University Village, hurried up t the hospital to meet up with another Short Gut Family we know there. Then, after our clinic visit, we headed up to the Mukilteo/Everett border where Lindy & Kelly are finally feeling settled into their new house.

It was so good to see these friends again! And an added treat to meet their new baby boy. This little boy has had his own set of health problems and challenges and Lindy and I have found another dimension to our friendship as we’ve shared our sons’ trials. It was good to get to experience him in person.

Our visit to the Laylands included some homemade stir fry noodles, a trip to the Woodland Park Zoo where Patrick and Lauren fed real dead fish to real live penguins, a burrito the size of a baby, a lot of Wonderpets, a visit from Befana, a toy-binge for Patrick in Lauren’s toys, and a kids-free date night facilitated by Bailee.

And it seemed to all end too quickly.

We flew home Saturday afternoon. Due to some plane shuffling and our tickets being purchased on different days, only Patrick and I were seated together. Can I say, though, that it was nice to have some one on one time with Patrick. The flight attendants made Patrick stay buckled in his seat, but were also very good with him and he enjoyed his big boy flight. We watched his birthday movie at least 4 times. (My new phone has a screen lock function that makes it perfect for Patrick to watch movies on.) And we played with stickers and cuddled.

And at the end of it all, we celebrated Patrick’s gotcha day by snuggling down as a family all safe and snug in our own beds in our own house.

I was more than a little nervous about getting Patrick and myself to Seattle on my own. Especially on the heels of several days of being the only grown-up and therefore not having any time away from Patrick to pack. So, when an opportunity for help for me came, we took it.

Help came in the form of a college student named Bailee. Bailee loved children with special needs. Was born for them. And so, she is studying special education and, at every opportunity, she provides respite care for families of special children. Bailee offered to buy a ticket to Seattle so she could have a little vacation, and we helped with her other expenses as repayment for some help with Patrick.

Still, as Bailee didn’t arrive till Monday night, I relied on my awesome little sister Marcy to come and help me get the house in order that day.

Then, after Marcy was on her way and dinner was over, I packed some, then stopped to change Patrick’s dressing and put him to bed.

That’s when we found that the repair done on Patrick’s line just before Brian left town was leaking. So we made a run up to the hospital instead of going to bed. It was past midnight by the time we made it back home. And it was well past 2 by the time I finished packing.

I slept with my clothes on and 3 alarm clocks set because we had to be up at 6 a.m. to be ready to go. I got Patrick dressed, meds given and packed on ice. We loaded up the car, and then Brian’s dad came to drive our car to the airport.

I always feel like such a spectacle in the airport with our 3 suitcases, diaper bag, carseat, stroller, TPN, and laptop bag. And that’s packing as lightly as possible. Thankfully, Bailee took care of Patrick as I took care of the rest of getting us there. And the airport was uncrowded. Security went fairly smoothly, though Patrick did get a false positive for explosives when they swiped his backpack and had to be rechecked.

Still, we made it to the gate with just enough time and enjoyed a pretty uneventful flight. Patrick was even tired enough that once the novelty of having Bailee there to play with had worn off, he curled up in my lap and went to sleep. I was so tired that I remember looking at the clock when we hit turbulence and thinking that at that rate, I wouldn’t sleep at all… and the next thing I knew 45 minutes had passed and we were landing.

Brian was waiting for us at the gate in Seattle. He’d left North Carolina at 4 a.m. in order to land in Seattle before us and therefore be allowed in the terminal.

So we gathered up our mountain of luggage, picked up our rental car (Thank goodness for minivans!), and drove to the hotel where, after a yummy lunch at the chowderhouse down the street, Patrick and I curled right up and went to sleep.