Day 2 - Getting the PICC line

Yesterday was a big day. I needed to get my picc line. That means I get special stuff to get medicine in my veins.

This first picture is me walking into the IR (interventional radiology) room. I'm carrying my bear Boris with me, and I'm walking there with Cassy, one of my nurses on 7 east.

This is a picture of me getting comfortable before I get my picc line. The blanket was very warm. I liked it. 

Dr. Boris! (His real name is Boris.)

After I woke up, I was reallllly dizzy.... (and I barfed... ugh....)

I fell back to sleep again. When I woke up, I wanted FOOD!! Nana was here too.

[Sam woke up with a 102 fever. He contracted a virus since he arrived here, and we think it was RSV. His fever broke later that day, but his mucus was back and his cough had worsened. We are working on clearing him back to where he was before getting the picc placed and going under anesthesia. -dad]

I slept so much, we stayed up pretty late. We had a dance party! We listened to "tempodot" - a song we made using Garageband.

The next morning, daddy found this guy on the coffee pot in the kitchenette. Very funny! Coffee guy...

This is me doing "MOOSE FACE!" (I like that too!)

Later today we played Hospital Bingo. You get a bingo card, and the people in the playroom on the 8th floor call out bingo cards. (Since we couldn't leave our room, we watched the pick cards on our TV.) You can win by getting 5 in a row across, down or diagonally. You can get two wins total. This week was "board game week!" We didn't win. But it was fun!(We were soooo close!)

Later I painted a reindeer! His name is "racer". I painted him red, green, black, magenta, yellow, and blue. (His antlers are green!)

Thanks for everyone's messages on my last blog entry! I'm feeling better, and I hope I'm home soon. Dad says hopefully by Monday. 

- SAM.

[We were shooting for Friday but because he got a fever and contracted RSV yesterday, we are probably looking at a Monday discharge. We know there's a very real possibility that could even get delayed a few days... fingers crossed! -dad]

CF bubble 4                                 by Samson

This is my 4th time in "the bubble".

The food is really good. I like their ice cream the best.

The bad part is when I get a pic line. It really hurts when I get it, but it's good for me. It can help me get the medicine I need to feel better.

I'm here because I have a bad cough. I've had the bad cough since before Thanksgiving. To get rid of my cough they're going to give me vest treatments, nebulizers, and medicine through the pic line. (the pic line is like a more long-term I.V.)

This is my I.V. or "wing" for short. I call it a wing because it has a little paddle taped to my left hand to protect my I.V.

Daddy is staying with me. We have lots of games and toys in here too. I'm also writing this blog.

Today I'll get my pic line put in. Until then I am NPO. That means no food until my pic line is in. I'm hungry!

And here's a joke: 
Q: Why did the chicken cross the playground?
A: To get to the other SLIDE!

The hospital is cool! That's all for now.

-SAM

Red Eye

Good news - we are out! We have escaped the bubble. Now, the real work begins - home health care! His health care has been outsourced - to us!

Samson is not completely 100%, but he is off oxygen. That's the big goal of our time in the bubble. Sam is breathing on his own. But he still has a helluva cough. He gets winded easily. So to treat this, we are giving him some hardcore antibiotics via his picc line. These are done by syringe, using a syringe pump, lines, saline, and heparin flushes. These doses are due around the clock, and are to be done in a very certain way. We are now nurses, even more so than we were before. We thought doing vests and nebulizers were bad - now we're administering hospital-grade medications at our home for the next two weeks.

The plan today: 1) picc line install 2) Big "moose feast" from the Moose Patrol. 3) get schooled about home health 4) go home!

1) picc line.

the picc line people said we'd go down to get this done at 8am. It was 11am instead. No problem. We were starving, but that's cool.

Sam got to ride down to the procedure room in a wheelchair. Pretty. Cool.

They made us wear funny hats. 

Sam wanted a funny hat too. 

The procedure should take only 15 minutes or so. A half hour later, we asked about him. Nurse said they were having trouble finding a vein (remember - they have to fish a tiny tube into his vein, then through his body like a subway system, so that it stops in a large vein near his heart.). They said he had some funky veins, and they were having trouble finding a good route. 

An hour and a half later, he was ready. They said they tried four different sites in his arms. The last one - the last chance they had before going to full-on surgery - worked. That's great. However, the problem was that they gave him 6 times the amount of Ketamine they were planning on. 

He came out VERY groggy. He puked. His eyes were shot, and weepy. He couldn't see, and was scared. Eventually he got his wits back, and we headed back to his room. He fell asleep almost immediately. 

The nurses hooked him back up to the monitors naturally. They noticed his oxygen levels were dropping -- back into the 80% range. This is where we started all of this. We woke him up, made him cough, and did everything we could to get his oxygen saturation levels up into the 90s. Nothing really worked. 

After some discussion, we all decided we should put him back on oxygen. This is literally a half hour before we (read: they - the nurses and doctors. Kathy and I know better) had planned on discharging us. Now Sam was back on oxygen.

2) Moose Feast: I ordered Moose Feast 2012 - THREE trays of food from the Moose Patrol. It was awesome. (I was excited - I was super hungy). Sam barely touched it. He wasn't quite himself. Still doped up on Special K. And on oxygen.

His main doctor assured us he was not going to be on oxygen for long - this is a side effect of the Ketamine. (6x the actual dose he was supposed to get). So we just needed some time to re-wean him off the O2 and get him out the door.

3) Nurse School: We got taught how to administer drugs by a nurse who came to our room. She brought everything we needed. It was like a pharmacy on wheels.

Three times a day, our setup looks like this. Schedules, saline, and syringes.

We administered our first syringe in the hospital. We passed!

4) Get. Out.: Once Sam's oxygen levels were up to 94% on room air, we got our walking papers. Woot!

So... we drove the 2.5 hours home. I'm enjoying a rye whiskey in a real chair. Sam is doing his meds and treatments on the floor of the living room. Comfort. 

A shout out to Grandmas, Nanas, and Auties: Nana is watching Ozzie in Freeburg tonight so that we could make a quick and clean getaway. She is going to drive him up with her to our place tomorrow. Thanks Nana! Grandma and Aunt Debbie came down to our place in Champaign so they could prepare some food for Thanksgiving. Thanks Grandma and Debbie!

It takes a village. 

We will apparently sit down and eat a big ol feast tomorrow. Kathy and I could care less about the large amounts of food. In fact, we weren't planning on even being home by tomorrow. It's nice, but not what it's all about. It's just a day. Thursday. Being with my kids, and the ones who love them the most, is the thing. That can happen on any day, any month, and would be meaningful.

Today I ran into an acquaintance I had met at CF Parent meetings in the St. Louis area. We go to these annual meetings to get information about the disease. We met this couple who, a year ago, were expecting their second child with CF. We shared notes. Today he was on our floor of the hospital getting admitted with his newborn daughter just coming out of surgery. She is 11 months old. She has had six surgeries since she was born. (An artery grew against her esophagus, limiting her ability to breathe - or something like that). He looked frazzled, crazed, jovial. He said he was thankful for every day he has with her. Each day is an adventure. He is still on that journey. As we were being discharged, after only three days in the bubble, I kept thinking about this man and his young family, and how his daughter is so so sick. They will definitely not be home for thanksgiving, whatever that is. 

That man is probably more thankful for each moment than anyone I've ever met.

    

Day 2 - Switcheroo.

Day 2 began much like Day 1. It was a crappy night of shadowy, masked figures coming into the room and starting meds, vest treatments, nebulizers, and using the computer kiosk. Beeps. Doors. It's like Skylab. Or something like that.

The plan today was to get a picc line put in so we can work on going home. The picc line is a very small tube that goes into the patient's vein. It's like an I.V., but it's more permanent. The tube is thinner, and much longer. It snakes through your vein and ends up in one of your larger veins near your heart (not too close, but close enough). Putting one in requires twilight anesthesia. Twilight anesthesia requires going without food for 8 hours or so. That means no breakfast from Moose Patrol until we are doing getting this procedure done.

So we waited for them to call our number, as it were. Before we go down to get the procedure, a team of what I call "vein hunters" comes by, looks at his arms, and marks a place on his arm they will use to put in the picc. I was told they'd be by around 7:30. The vein hunters never showed. By rounds at 9, they were "looking into the delay". By 10:30 we were starving. The nurse poked her head into the room (afraid to enter completely - we were drooling) and said we had been delayed. Tomorrow morning instead.

We ordered breakfast immediately. Then we asked why.

They wanted Sam off oxygen for a full day before they did the procedure. Fair enough. Why didn't they tell us? Or our doctors and nurses? Its only polite. Whatever. It's the Bubble.

After the feast, we got a nice surprise. Balloons from Aunt Amy and Uncle Michael. Awesome.


So we ate and ate. Then we played some of our hospital room games. Wii. Etc. We are still planning on trying to bust out of here once our picc line is eventually installed. We are hoping for tomorrow. Until then, we play in the bubble, and do our treatments. And nap. (Sam woke up after an hour nap - "is it still Tuesday?")
Mommy arrived!


She is done with her week of work, and came down with Ozzie. Ozzie also had some business to take care of here at the Hospital. His CF was acting up a bit, and he needed to come get a throat swab in the clinic. No hospitalization required. So he came with Kathy. After his swab in the clinic, they came upstairs. Ozzie isn't allowed in the room with Sam (CF kids aren't allowed to be in the same hospital room - as a side note, CF kids never have to share a room in the hospital with anyone else. Always get singles. A perk? I suppose.).

So, we got to switch! Kathy hung out with Sam in the room for a few hours. I got to hang out with my man Ozzie in the rooftop garden! What a nice change of pace. We ran around the paths, looked at stuff, jumped, ran some more. We saw the sunset. We also saw two (2!) helicopters take off and land on top of the hospital. I thought that was awesome. He kinda did too. He's Sonic.



I took a lot of photos of him. I missed the Oz-man.


The rooftop garden has an awesome view of Forest Park. There is already an open-air ice rink installed for the winter months. We could see skaters on the rink as the sun set in the south-west.



We found these hats. They were donated for patients and families - someone must have crocheted them (sp?). They're nice. We picked out one for mommy too. (no pictures tho...)

Back at the room, we switched back. Kathy had brough a bunch of goodies from home. The best of all were a huge envelope of cards from his Kindergarten class at Robeson Elementary. Not just from his class of 23, but from ALL THREE classes of 23 at Robeson! Wow!

It was touching. Sam read EVERY ONE of them, and got particularly excited when he found one from someone he really knew, or from his teachers. We also got more cookies, and some other things to pass the time. People. Are. Awesome. It's true.

Pretty soon, it was time again for the Moose Patrol. This time: Pizza. Fries AND Tots. Ice cream. All for Sam. A perfect place for a CFer - lots of fatty, crappy, foods to eat. He is making the most of it.

BONUS: After being promised trips to the outside to no avail, he finally broke out - Jeff, a very nice tech, took Sam on a 15 minute whirlwind tour of the hospital while I made some phone calls. How nice of him - it was like ditching school. they had to wait until Dr. Patel left for the day. ..."breakin' the law, breakin' the law..."

Anyway, it's actually a really good sign that he wants to eat a lot. When CF kids get sick and have exacerbations, they loose their appetite. Drs look for these kinds of signs.

He still has one helluva cough. (nurses, techs, and doctors alike cringe at his coughs. they're loud and mighty) But we are reassured by his mood, his appetite, his energy, and his ability to breathe on room air. His doctors are trying their best to get us out by Thanksgiving. We know better than to put all our faith in that. It's the Bubble, after all. Anything could happen.

Right now, it all depends on the picc line getting in, and seeing how he recovers from the procedure. If he avoids more oxygen, then we may be looking pretty good. Then again, he's still quite sick, and that procedure may take enough out of him to keep him here a while longer.

We are still assured that this is a different problem than May of 2011. His lungs sound clear - they're moving lots of air. Last year, he had a "plug" of mucus that had to be extracted manually. This time, noone has seen this issue in x-rays, or heard by stethoscope. He also has no fevers, etc. But that cough remains. Speak of the devil, he just fired a few bad-boys off just now in his bed. 

I raise a virutal beer to Sam during all this. He only lost his marbles once so far. We haven't been here very long, it's true, but he's doing the best he can.

Mmmm... beer. Moose Patrol, I'd like a Southern Tier draft please. Better send up two. I have a voucher.

Day 1 - Make your own fun.

So, we are now really into this hospital thing. Sam we are now getting into hospital mode. That means at night you sleep in two-hour increments. Blegh.

He gets vest and albuterol nebs every 6 hours. IV gets updated and flushed (for his antibiotics) every 4 hours. That means the IV pumps for an hour or so, beeps for a while until a nurse happens to hear it, then gets flushed, then beeps again, every 4 hours.

Sam is also on a fluid drip, so that means he's peeing constantly. This is good, but only to a point. He was up three times last night to pee. Picture the two of us fumbling around the room, he is hooked up to a pole and a web of plastic lines, and I'm winking and waving a plastic urinal around, trying not to spill it or let Sam fall off the hospital bed.

It was so nice for the attending physician to wake us up at 7am. They don't do rounds until 9. But he needed to ask us some mundane questions and poke sam's belly. We got up and assessed our situation.

Moose Patrol.

The room service here is called "moose partrol". Sam loves it. His nurses have told him to "eat, drink, and sleep" while he's here. He is definitely eating. Tots and peas are his go-to sides. Blizzards. Cheese sandwiches. Crazy peanut butter, apple, and granola roll ups. Anything. He wolfs it down. It's like the biggest loser, only backwards. It's really great.

After breakfast, we figured our day's schedule is pretty open. Sit in our room and make our own fun.

We found a small 1kg scale, and started weighing things. My phone. His phone. The hospital phone. His bear Boris. The phones at once. Boris and Sam's phone. We made a list.

The doctors told me that he is growing Rhinovirus. It is a common cold virus that we all get  (Rhino becuase it's usually a nose-related bug. get it?). Normal people get colds. CFers can potentially get out of control and land in the hospital. It can potentially let larger, more dangerous bacterial infections to grow in his bogged down lungs. Also, in CF kids, pulmonary exacerbations occur when a virus, combined with the CF part of him, create a perfect storm of mucus that causes them to lose oxygen levels, increase cough, and slow down in terms of appetite and general energy levels. That's why we're here. It looks like an exacerbation has started, and they want to squash the bacteria rebellion.

The doctor's response (their Iron Dome -- too soon?) is to give Sam two strong antibiotics via I.V. This is usually a two-week strain of drugs. Luckily, this can be started here in the bubble, and completed at home. First, however, he needs to get off oxygen. If he's oxygen dependent, he needs to be in the hospital.

Nana arrived with some great games (and some real coffee and soups from Panera bread - delish. I'm not as big a fan of the Moose Patrol as Sam is...). We feasted again on lunch and hung out in the room. Sam needed to pee again, and so I took off his oxygen tube to hit the bathroom. A half hour later, I remembered that I forgot to put it back on. Woops, but: He's doing just fine, on room air. A half hour later, I told his nurse. And just like that -- we are weaned off the oxygen. No problemo. Step one complete!

That would usually mean we can leave the room, and get a half hour of freedom to roam the hospital (Sam loved this part of his stay last year, but due to a new policy for CF kids in the hospital, they are only allowed out of the hospital rooms for a total of an hour a day. They must be off oxygen, and germ-free.). Our nurse, who is awesome, was telling us we can go out and play when we were done with our medicine drip. The drip ended, and we got all ready to pounce on the "front porch" of our room (that's what we call the little foyer for the nurses. It's almost complete with a screen door, American flag, rocking chair, and sparklers.) But, the doctor told us - wait a minute - he tested positive for Rhinovirus. Sorry! No trips to the garden for us.

Sad Sam.

But our nurse was awesome, and cheered him up (this is not easy to do. Ask his Kindergarten teacher.). We got out the dry erase markers and drew all over his room window. That was a blast.

So, we ate another huge dinner tonight. Complete with a DQ blizzard! Oh yeah.



We are still on room air, and taking our meds and doing our airway treatments. It'll be another night of interruptions, but hopefully we can get a picc line in soon, and be on our way with intravenious antibiotics for a few weeks.

Thanksgiving holiday is now a footnote to the week. It'll be interesting to see how we spend it. Our original plan last week was to go to the Chicago area and see Grandma, Aunt Debbie, and even travel by trian to downtown Chicago and visit Aunt Amy and Uncle Michael, see Michigan avenue, etc etc. Plans change, so we are flexible. Looks like it's either that turkey travels to my Mom's place in Freeburg and - IF - we are out of the bubble in time, we eat there. Or, we eat in the bubble with Sam and Boris (he weighs 400 grams). Either way I'm thankful.

My phone weighs 125 grams. Sam's is a bit lighter (it's a flip phone - and of course not in service. Not that that would affect its weight.) The hospital phone is the heaviest of all three.

Now I totally know that. Time well spent.

Vamanos! (or, "Get Him To The Geeks")

I knew we'd be back in the bubble. For CFers it's inevitable. But knowing that doesn't make it any easier.

Samson caught a cold. That's what started this one. And it got out of control. It sounded like croup. Dry cough. At home we tried everything - albuterol, vest, steroids, and antibiotics. But by the fifth day I had a hunch we'd end up in the bubble.

He was up most of each night coughing. We couldn't stop it. And finally he was breathing very shallow, and quickly. And his blood/oxygen levels were in the 86-88% range. Yikes.

Our pulmonologist on call in St. Louis told me to get him into the ER today - at Carle in Urbana - and get him on oxygen ASAP. I was reluctant - Carle is not particularly awesome for us CFers. They don't speak our language. They don't know the code. They ask inappropriate questions. I can't trust them.

Sure enough, our Carle ER doctor asks me: "so. Who's got the CF gene?" Referring to my wife and I. What an ass. Obviously he doesn't know that this genetic disorder is recessive and homozygous. He immediately lost all credibility. (He also asked Sam more than once if he had any girlfriends. Sam is 6.)

We got our walking papers, and got an ambulance ride to s Louis children's hospital (our people!). They certainly speak the language.

We are here for a pulmonary exacerbation. Sam cannot leave his hospital room until he is off oxygen. He's on two iv antibiotics. He is getting vest treatment every 6 hours (yes even at 3:30 am).

He is tough kid. I am so damn proud of him. We will try not to go crazy in the bubble.

(PS - I am also trying not to go crazy without a laptop - I'm blogging from my iPhone. I'm going to attach pictures if I can figure ur out on this little screen!)

Day 18+ - life on the outside

We are happily on the other side of the hospital walls. Things are going great. Homemade meals, walks in the sun with the kids, we happy. Sam is not out of the woods however, and we still do Vest therapy four times a day. He should be taking meds, but unfortunately in America we deal with a for-profit health-care system. Caught in between, we do not have our meds. Granted, they are expensive, but they are to come from a "specialty" pharmacy, and must be sent via mail. I'm not sure why, two days later, we don't have them. But that's the facts. They don't lie, ya'll, they don't lie.

Our day on Monday began just like any other. Vest. Toys. Nebs. We didn't know we'd be discharged that day. But, I could smell it. I knew it was coming.

Rounds were at around 9 am, and it still wasn't finalized. The Doctors had to come to a consesus. He could take Tobramycin (Clint Eastwood) and inhaled Pulmozyme (Axel Foley) to thin the mucus. That was the plan (we still have neither. Awesome!). Just needed confirmation.

We went to the garden, hoping for the best.

Here are some photos... i forget the details.

A few more steps in the fountain by Sam.

While up in the garden, a nurses aid came and got us. Doctor Rivera wanted to "listen to Sam". I had a feeling that was code for "you outta here."

Sure enough. She gave us the OK to leave. WOOT! But that is just the beginning. Lots of hoops to jump through before we could leave.

Because Tobramycin is such a badass, it doesn't play well with others. In fact, it's so toxic that it causes hearing loss. Most CF-ers lose their higher frequencies because they take so much Tobramycin (or it's inhaled cousin, "Tobi" -- cute, no?). They gave Samson his first hearing exam before we left.

A safer alternative (I don't recall its name) was considered, but my health insurance coverage denied it. Apparently it's more expensive. (It's all about the Benjamins, don't ya know.) It took a few hours for the nurses to find out this information about the alternative meds (that it was rejected). This led to the delay in our release.

So that was frustrating. Not only were we getting the more toxic med, we also had to wait around until they decided that hearing loss was better than saving some money. We finally got our hearing exam scheduled. What a country.

Sam did great! 

One last item: getting his PICC line taken out. Another OUCH moment. He cried a bunch, but it was worth it. They pulled it at around 4pm. 

My dad's old truck had been left in the parking garage for us to take back home. My dad is not with us any longer, but I think Sam and I both felt his presence, aiding us home. Dad always wanted to feel like he was helping somehow, and he really came through for us today. Thanks pop. 

It was also fun for Sam, because he was going home in "Papaw's Truck." In the front seat! (It's an S-10, and its either the front seat or he rides home in the bed.  I know that's not ideal, but whatever. You'd do the same.

After two trips to the truck with wagon-fuls of our belongings (they accumulate over almost 2.5 weeks!) we finally got the heck outta there!

I snapped a quick picture of Sam and his friend Scout riding shotgun. on Kingshighway Blvd. (again, safety first, right?)

First stop: McDonald's!! ALL of this food got eaten. We ate for what seemed like an hour. We were both starving (Sam slept through lunch, and I didn't eat either) and happy to be stuffing our faces on the streets of St. Louis. The best Big Mac I've ever had. No doubt.

Sam and I trucked it home. 

We watched the sunset out the driver-side window.

Mommy and Ozzie made this sign on our garage door. It was the cutest thing in the world. Sam freaked out on his mommy. The neighbors came out to hug him, and wish us well. It was awesome to be home. 

 THE NEXT DAY:

I had the kids the next day, gladly, since Kat returned to work. I soaked every bit of it up. Eating lunch on the back porch:

We still have Papaw's Truck (it's official name) at our house, and the kids immediately wanted to play in and on it.

We hope to stay out of there as long as possible. But we will be back. They both get checkups down there next week.

We are all readjusting to life on the outside. I have a bigger appreciation for the little things, and I think Sam does too. I suppose that's the silver lining here. Those who have less, have more.