Worth the wait

Last week was one of the harder hospital stays we’ve had, and I think it’s because there was so much waiting for answers to scary questions… and while we waiting Patrick didn’t feel all that sick and couldn’t figure out why his boundaries were suddenly so much smaller. Had he not discovered opening and closing cabinet doors as a way to spend his time, I think I’d have been a goner.

After 3 days, the lab tests showed that the infection was, in fact, the same infection Patrick had back in January. This type of bacteria can sometimes live in the plastic of a central line. The doctors theorize that the reason Patrick only sometimes had low fevers and only sometimes acted sick was that the infection was living in the line and only sometimes making its way into his bloodstream.

The best way to make sure Patrick got better was to take out his central line. So – Thursday afternoon they took Patrick to do an ultrasound of his veins to see where a new line could be placed. Friday morning they explained a plan to me that involved removing his broviac line and putting in a temporary PICC line instead. (Please see previous blogs for descriptions of the differences between these lines). After 3 days, they’d take out the PICC line and put in a new broviac line instead.

I explained again that we’d been told that Patrick couldn’t have PICC lines because of the collateral vessels in his shoulders. But – it was better to try than to plan for peripheral IV’s in his hands and feet for 3 days.. So we went ahead.

Both the broviac removal and the PICC placement are sedated procedures and it took some talking to convince them that they could be done at the same time – but, despite a full-to-overflowing hospital, they made it happen.

We got ready by putting an IV in his hand where contrast could be injected and an NG tube down his nose to drain his stomach and make sure he didn’t vomit and aspirate again. This took over an hour to do. Patrick has learned to block tubes with his tongue as they try to pass them down his throat. It took several tries and a very crafty charge nurse to finally get it all done. With music therapy there to try to help calm him down, the room seemed a bit like chaos. In the end, Patrick was exhausted and furious. I took this picture as I tried to calm him down right before he fell asleep from total exhaustion.

Late afternoon on Friday, they took Patrick to Special Procedures where they use a technique called fluoroscope to view the blood vessels to view the blood vessels as they work.

The anesthesiologist gave Patrick a dose of Versed and let me hold him as it put him to sleep. This was a first for me, and interesting to see his reaction. First he got all giggly. They he took my face in both hands and gave me a big sloppy kiss on the mouth. They he went kind of limp and I put him on the procedure table and left as he was drifting off to sleep.

Less than an hour later, they called. They explained that he did indeed have collateral vessels that made a PICC line impossible. However, they’d put in a deep peripheral IV that would better survive the 3 day wait.

Picking Patrick up, I learned that Versed does two things to Patrick. It makes him loud, and it makes him fearless. He spent the entire ride to his room and then at least an hour afterwards yelling “Hi!” at the top of his lungs to every person who passed by.. including the ones all the way out in the hall where they couldn’t see him. He also took to jumping and climbing and bonking his head into things. (He still has a bruise between his eyes from this game).

Soon he got tired and went to sleep. And we went back to waiting. Surgery requires a 3 day wait before they can put in a new broviac line whenever one is pulled for infection. In the meantime, the sugar in Patrick’s TPN had to be reduced to prevent damage to the peripheral vein. This meant he didn’t feel quite as well. He also kept the IV in his hand because we don’t dare take out any working IV, for fear we won’t get one later when he needs it.

Patrick didn’t want to slow down, though. Within a day he’d figured out how to still crawl with a splint on his hand.. he was determined to stand at the side of his crib.. and he taught himself to sit up to make sure that no one else would be able to get away with trapping him by laying him down. It was an exhausting 3 days because he was extra motivated to stay active, despite his new restraints.

Finally, Monday rolled around and Patrick was eligible for surgery again. We waited all day, and finally Patrick’s doctor told the nurse to call and see what was taking so long. We found that his name had been accidentally left off the schedule. They added him at 4 and around 6:30 took him down to surgery.

While we waited for the anesthesiologist to come, Patrick was his usual bundle of energy. He discovered a pretty big blue button on the wall that he pushed. He was thrilled by the alarm that sounded and how quickly people made it to the room. Yes, he found and pushed the “Code Blue” button that is used to call emergency help when a patient stops breathing or worse. I caught on and cancelled the alarm as the anesthesiologist got to the room. He only got to the button once more as we talked, which just got a big grin from the doctor.

The pre-surgery talk with this doctor scared me. He explained that there were big risks in intubating when Patrick had RSV. He also explained that the surgery might take a long time, as they didn’t know for sure how hard it would be to get a line.

Again, they gave Patrick a dose of Versed and I kissed him as he drifted off then went to the waiting room – a nervous wreck. Howie joined me about 15 minutes later, and after another 15 minutes the surgeon appeared and explained that they’d easily gotten a line in.

When I got to the recovery room, Patrick was trying his best to sit up while everyone else tried to keep him laying down. An hour later, though, in the room, he was up and full of energy. Again, he was fearless. His nurse kept calling him “wild” as he would quickly try to escape guarding hands to stand and jump, etc. Fortunately, by 10 he wore himself out completely and other than being woken by vitals, slept through the night.

Tuesday morning, we were finally able to go home. We arrived home almost exactly 7 days after we were admitted to the hospital.

When you’re confined in a little hospital room, you don’t necessarily notice all the learning your child has done. Patrick is now able to sit himself up and just needs a little more practice to master crawling on hands and knees. He’s playing peek-a-boo and other interactive games. He is a HANDFUL and it seems as though it came overnight.

He was so happy to be home with space, though, and so was I! It’s so much easier to contain a tornado if it has a little bit of space to bounce around in. We’ve had to adapt some, though, to adjust to his new skills. It’s no longer safe to use the changing table.

Patrick did manage to break his line his first morning home, so we spent yesterday morning up at the hospital getting it repaired. (Big thanks are owed to the GI staff who managed this in their clinic and saved us a trip to a very overworked ER). Between that adventure and his daily appointments this week, I was quickly reminded that, even at home, keeping up with Patrick and his needs is plenty of work.

We did see his pediatrician yesterday and she was all grins as she handed me a growth chart that showed Patrick’s weight in the 5th percentile! He’s always been well under the lines on the growth chart. We’ve never even talked percentiles.

I don’t know how we’ve been so blessed that, even with infections, he’s been really very healthy for so long. But we are grateful as we take each day at a time. Some days are harder than others, but at least this week, the outcome is worth the wait.

The waiting game

It’s 10 minutes past midnight and I’m sitting up waiting for Patrick to fall asleep again after being woken for vitals just moments after finally drifting off to sleep. This was the 4th nurse we’ve had in 12 hours.. That’s right, a new nurse for every set of vitals. And it’s making me homesick.

Patrick hasn’t been himself all weekend. He had low-grade fevers and was more irritable than normal. Finally, yesterday morning I gave in and called to request blood cultures. I was guessing that he had an ear infection or some other ordinary childhood illness.. But as it turns out, he’s got another infection.  Yesterday’s cultures grew a bacteria that so far is relatively similar to the one that caused his infection a month ago.

And so now we’re playing the waiting game. We won’t know until sometime tomorrow (or is it today?) whether or not the bacteria is the same. If it is, the question becomes why didn’t it go away before and what can be done now to get rid of it. In the meantime, they’re giving IV antibiotics that I’m hoping will help him feel better soon.

He’s really not acting all that sick. This is good news as it means that we can probably treat the infection more easily. It does mean he’s a little more stir crazy because he wants to be crawling and exploring like he can at home. A crib and a playmat are just don’t seem like enough surface area to him.

That it’s RSV season makes this a unique hospital stay. Because the Infant Unit is full with babies sick with RSV. We’re tucked away in a corner of the Children’s Surgical Unit. It’s quiet here… much more peaceful than the Infant Unit in respiratory season. We’re getting to know a whole new set of nurses which can be disorienting.. especially since they rarely get babies here. But Patrick easily wraps any nurse around his little finger, so we’ll have friends here soon, I’m sure.

I’m hoping that the day will bring enough information that we’ll be able to end the waiting period and move on to a treatment plan. When I know more, I’ll try to put it here on the blog.

On a different note – any of you out there reading this post who haven’t done so already – please visit the “Activities and Events” page. Click on “Five for February” and send the message on that page to 5 people who you think would donate or forward the message or both. We have been stuck just under the $5000 mark for some time now. We only need 8 people to give $5 and we’ll cross that threshhold.

A trip to the zoo

We took Patrick and his cousins (and their parents, and grandpa) to the zoo yesterday. The last time we were at the zoo, Patrick was far more interested in the enclosures than in the animals themselves.

This time, however, he started to take notice that there was something different there to see. In fact, in the giraffe house, he tried all he could to get me to hold him close enough to touch the giraffes. (This could be especially dangerous because one of Patrick’s favorite games is to bonk his head into things he likes).

As is often the case with Patrick, this zoo trip was a little more complicated than your average outing. Patrick’s temperature was a bit high yesterday, so I carried a thermometer around in my pocket to check it regularly.. With the children’s hospital less than 10 minutes from the zoo, we figured we’d see all we could, and then run quickly if he got into the danger zone.

On top of that, while putting Patrick into his stroller, I managed to snap the tubing for his lipids in half. Thankfully, the lipids are just his “cheeseburger”.. needed fats and calories, but optional enough that we could wait till we got home to fix it.

Thankfully, the fever hasn’t evolved into worse and the lipids were restored without incident. I’m sure Brian’s brother thinks that we always have this kind of complications whenever we go anywhere. And, I’ll admit, it happens more often to us that I’d like. But as frustrating as it may sometimes be, it really is worth all the extra work it takes to do these family things when we can.

I am thrilled that Patrick was able to enjoy the zoo. And that he picked my favorite zoo animal to try to pet.

Hospital stays are different now

Patrick’s definitely growing up. He’s not the tiny little baby I got used to having in the hospital with me. The more he learns to crawl and play, the smaller his hospital room seems.

http://www.facebook.com/v/1275411359392

This video was taken about a month ago while Patrick was admitted for a line infection. Between the infection and a cold, he was running a fever, so we left him dressed in a hospital gown to keep him cool. Nothing quite like a little diapered bottom dancing around to make you smile.

A belated Christmas entry – including video

http://www.facebook.com/v/1248583248706

Well, it’s rather late, but I had to post a bit about Patrick’s Christmas.

This is the first Christmas season we’ve had to spend at home. Patrick came home last year on December 9th, so he was home for Christmas – but he was too young and we were too overwhelmed to count it as much.

This year, Patrick totally got that something was going on with Christmas! The tree intrigued him, though he didn’t start to undecorate it until after the holiday. He did love everything to do with presents and wrapping paper, though. In fact, the rolls of wrapping paper were motivation for him to finally really learn to roll over. He mastered tearing paper just on time to open a few presents with coaxing, as the video shows.

Christmas Eve we had a late breakfast with my brothers and sisters. Patrick wanted to explore, but his tubes kept getting in the way, so he stayed sitting with grandma, aunts and uncles most of the time.

We spent Christmas morning at home. Patrick was a bit overwhelmed by all the new toys, but happy nonetheless. Then we went and visited with each of our families. He was a bit tired by the end of the day, but did just eat up the time with people he loves.

RSV and other adventures

This post is a follow-up on last week’s rant. It turns out that Patrick’s low-grade fevers were caused by RSV, a highly dangerous respiratory bug. He probably picked it up while he was trying to taste every piece of furniture in his hospital room the week before.

He was discharged to home before noon.. less than 24 hours after he was admitted. They sent us home with orders to visit the outpatient respiratory clinic as often as needed and boy have we been glad to have that resource! I think we caught this bug the first day… The symptoms didn’t really hit till Friday. Friday morning when he woke up he was working hard to breathe and my best efforts with steam and a bulb syringe wouldn’t budge things so I took him in. The respiratory therapist described the secretions as “glue”. He said that is was possible that Patrick was needing extra fluids, since I couldn’t give him drinks to keep him hydrated. So I stopped and asked for a prescription for some extra fluids.

The next night, he hardly slept! Finally at 3 a.m. I put the fluids on and he finally started to be able to clear his airway and went to sleep. When we took him in again his oxygen saturations weren’t in the dangerous zone, but they had dropped significantly.

That was the worst of it, though.. Patrick is actually doing much better these last couple of days. I think we finally have him rehydrated and he’s breathing much more easily now. We haven’t had to take him in for help in a couple of days now. I think that other than the long contagoius period and resulting quarantine, he’s on his way back to normal.

As for our car – well, it turned out to need $4000 in repairs. This is NOT what we wanted to hear in January, the month where we pay all of our out-of-pocket medical for the year.. We ended up approving the repairs, but have also decided that it’s time to sell that car and drive something more affordable to repair. And maybe once that car’s sold and our tax return comes back and things are a bit more stable, we can revisit the idea of having a practical car for me to drive in Seattle while leaving Brian with a practical car to drive here.

None of this excitement has done much to hinder Patrick, though. Despite being sick and grumpy and working to breathe, he is still growing up more and more every day. A week ago, I took a load of laundry downstairs. When I came upstairs I discovered Patrick halfway across the kitchen floor. He had dragged his IV pumps in their backpack by the tubing a good 4 feet trying to follow me downstairs. The next day we invented a safer way for him to get around.

Now when Patrick’s playing on the floor he wears a safety harness connected to a little cart that his backpack sits in. This way, he can get around the house without as high of a risk of ripping his central line out. He’s enjoying exploring how far he can go, and getting faster all the time! The funniest thing is how much he loves being under furniture. I’m amazed at all the places I find him. (And have to subsequently save him from.. because he gets his tubes and harness tied all around the furniture legs).

He also spent most of his last hospitalization improving his standing skills and he now dares stand himself up to some furniture and can walk around a big holding on… especially in his crib.

When it rains, it pours

Someday I’ll figure out why Patrick’s hospitalizations tend to concide with 1)holidays and vacations or 2)periods of stress for me.

If you don’t know, Patrick was hospitalized last week because of another bacterial infection in his bloodstream. The good news is that it quickly responded to antibiotics, quickly grew so it could be identified and more accurately treated, and therefore he quickly was back to himself. This infection was a reminder of how Patrick gradually is becoming more fragile the longer he waits for transplant, though. His spleen wasn’t very happy with this particular infection – just one side effect of residual liver damage.. and it started to cause his blood counts to fall. So even though the infection was caught and treated very early, we still had to keep a very close eye on him for a couple of days.

We took him home on Wednesday and he’s been doing pretty well since. That gave me a few days to really work hard on catching up on some impending deadlines and to deal with some unexpected problems.

Brian was complaining about the car not accelerating the way it normally does the day we brought Patrick home. He made an appointment to take it to the mechanic this week. That appointment is for tomorrow morning. Sunday morning, instead of making it’s usual complaining noises, though, it started to spew clouds of white smoke so think that I can’t see the car behind me.

Brian had business meetings in L.A. today, though, and I didn’t dare be without a car that Patrick’s carseat fit into. So we agreed to take his truck for a tune-up yesterday so that it would be in good condition should the car be gone for a while.

Well, an hour before I left to pick up the truck today, Patrick woke up from a nap fussy and feeling warm. The thermometer read 100.2, which is not technically a fever.. but added to the fact that today was the last day of his antibiotics and the fact that he’s been fussy since 4 a.m. I made a call to his GI to see if they wanted to test to make sure the infection wasnt recurring.

In the end, his doctor recommended that he come back to the hospital for observation. So – here we are. They’ve drawn blood cultures and done a test for respiratory bugs as well. And we’re hanging out here waiting to see what they find. Meanwhile, my car is sitting outside the mechanic so they can start work on it first thing in the morning. I’ll be surprised if the repairs for this come in under $1000. And my deadlines will just have to wait for a little while.

One thing about it, though.. if we were at home, I’d be up all night monitoring Patrick’s temperature and the other vital signs I know how to check. Here, the nurses will do that and Patrick and I can hopefully get some rest.  And hopefully by morning Patrick will be well and ready to go home, my car will be diagnosed and on it’s road to recovery, and I can get back to simpler things like following Patrick around moving his backpack so he can work on his crawling skills and teaching him to eat vegetables.

Bath Time

There are some little things that I took for granted before Patrick. One of them is baths.

With a Broviac line, there is a 2 x 3 sterile dressing on Patrick’s chest that must be kept dry in order to keep it clean. Until Patrick started to have PICC lines I just plain didn’t put him in water. When he needed a bath, I’d give him a sponge bath. When Patrick got his PICC it was easy to keep his dressing dry because I could wrap his arm in waterproof things and make him hold it out of the water. But now that he has his Broviac line, giving baths is taking some more heroic measures.

There are two products that make this possible. One is a medical invention called “Aquaguard”. It’s a piece of plastic with waterproof but easy to remove adhesive around the edges. You cover the dressing with this and it keeps it dry. The second I buy at the grocery store: Glad Press & Seal wrap. This wrap can go around the connections in Patrick’s line and also can be stuck over his dressing directly to his chest. It crinkles a bit when he moves, but it keeps him dry.

Waterproofing Patrick’s chest sometimes is a bit of a battle. He’s not a fan of having crinkly plastic stuck to him and often takes it off right after I put it on. But once he’s in the water, it’s well worth the work. He loves to splash and play.

I’m not brave enough yet to use the big bathtub for Patrick’s baths. It seems like a rather big thing to keep sterile and keeping the tubes above the waterline is hard enough in a baby bath. Besides, Patrick loves the baby bathtub I put him in. He uses his feet to push back and make waves that splash over the sides of the tub. (Therefore, I put the baby bath inside the big bathtub to contain the mess).

The only part of the bath Patrick isn’t a fan of is washing his hair. This isn’t any kid’s favorite part, but for Patrick it’s especially tricky. He has a lot of hair so it MUST be washed, but I have to do it while keeping water off of his chest. Even with the waterproofing, too much water can still soak through to the dressing. So we have to take extra time and do this with as little water as possible.

As the picture below demonstrates, sometimes a bath is needed when I just can’t pull off all of the logistics.

Patrick gets diaper rash very quickly because his stool is so acidic. The other night, he was crying miserably because his bottom hurt so badly! It hurt too much for me to clean it with wipes, and leaving it uncleaned was only going to burn more. So, I grabbed the nearest hospital bucket I could find, put two inches of water in it, and set Patrick inside.

 

I consider this one of my most ingenious feats of mothering yet. It got the right part of Patrick bathed and happy while keeping his line well away from the water.. And he thought it was hilarious to get to sit in the little bucket on the changing table.

Sometimes raising a child with short gut syndrome requires some real creativity.

Home again

I just wanted to take a minute to let you all know that Patrick and I made it home safely Saturday evening. The flight was a bit late and very full, but overall the trip went very smoothly. Patrick and I even got the opportunity to ride home next to a very kind woman. She and her husband are considering adopting and I got to spend the whole flight talking up adoption, especially special needs adoption. Patrick liked her, too, and even spent some time playing and cuddling with her during the flight.

We’re all pretty tired. Patrick and I both still have pretty bad coughs. Fortunately, Brian’s healthy.. but has been struggling to make up for the time he took off at work. On top of that, they scheduled a power outage last night. He ended up spending the whole night working to get servers back online.

On a different, and happy note, Brian and I celebrated our 6th wedding anniversary yesterday. With all that we’ve been through this week, it was a pretty simple celebration. My parents took Patrick for a couple of hours and we went to dinner and our first movie in well over a year.

It’s funny how life changes change perspective. Our anniversary was very low-key, yet I found myself overflowingly grateful to have the kind of marriage that doesn’t need a lot of frills to be happy. I love my husband more today than the day I married him.