Phenon Updates

I know that’s probably unfair to say.  I’ll allow that it’s even possible that it might not be true of all surgeons.  Heck, I’ll even accept that there might be dozens of surgeons out there who don’t suck.  It’s possible that some of you reading this may even know or be related to a surgeon, and to you I apologize.  It’s just that I keep waiting for a surgeon to not live up to the negative stereotype that I always see them portrayed as and I keep being disappointed.  You know the one: incredibly skilled but completely unable to talk to people who are not surgeons, and flexing through life with a disregard for human emotion that one can almost taste seeping from their every pore.

I’m incredibly thankful for the work that our surgeon has done for Phenon and I can’t begin to imagine what it takes to be able to cut into another human being and do exactly what you intend and fix shit.  I mean seriously, I can barely figure out how to fix a JavaScript error on a webpage I’m working on and these people can do things that I can’t even imagine.

But there’s this: when you have a 12-year-old girl with a hose coming out of her chest that has been in there for four days longer than it should have been and your team is not completely blameless for that being the case, then you damn well owe it to that girl to let her know what’s going on when you say you will.  When you come in to her room an hour after the 4:00pm x-ray that you ordered has been done and don’t even know it’s been done, and then you tell her and her parents that your team is going to review it and let them know what the result is, then you should call them and tell them.  DO NOT make them wait nearly six hours until they finally break down and ask a nurse to call and find out what’s going on.   AND THEN DO NOT have the only information the nurse is able to get be “the tube stays in tonight…we do another x-ray in the morning.”

Better yet, DON’T DO THIS EVERY SINGLE DAY OVER, AND OVER, AND OVER.  That makes you the kind of person who sucks.  And that is why the character that you are portrayed as on television is a complete dick who nobody likes and who is always lonely.

I really mean it when I say that I hope the surgeons don’t come by Phenon’s room before I get back to the hospital in the morning.  Though they usually are the first team to come around, typically around 6am.  I suspect that they do their rounds so early because they are hoping that the insects that they are visiting are still asleep so they won’t have to answer questions about things that nobody but them could possible be capable of understanding.

So yeah, surgeons suck.

RNs now, on the other hand…don’t get me started on how awesome Nurses are.  We’ll save that post for another day.

I know this is overly harsh, but Julie is already asleep and not available to read this before I post it, so here I go…

We’re still waiting to hear what surgery thinks of the x-rays taken this morning and whether there will be progress toward getting Phenon’s chest tube out soon.  I’m starting to feel like we’ll never get out of here and I know she has got to be feeling the same.

Some morning tears about missing trick-or-treating this year for the first time have settled into what looks like a pretty blue mood. Halloween is a big holiday in our family and spending it in the hospital has really got her feeling down.   Cheering welcome.

I’m sure texts from friends would be especially welcome right now and Phenon is really just focusing on the visits that are set up for today.  I’ll update again when surgery tells us what they see in the x-ray.

Wow!  That was a busy day.  I think Phenon had visitors straight from 11:00am-5:00pm and was completely energized the entire time.  I think she was just showing off when she ate an entire Boca Burger with mustard and kept it down.  Then she ate some Jelly Beans and it was obvious that she was feeling spivy.  Let’s see if we can remember everyone who came through today: there was Griffin, Kelly, Yasna, Manpreet, Aliza, Kyra, MacKenzie, Priscilla (and all of their parents!  Parents were not a minor part of the visit for us, just for Phenon ).  Phenon will correct me if I missed anyone.  It was a madhouse of kids and parents and the Telestrations game brought by Jean yesterday was a huge hit with all the kids.  And me.  I didn’t do well.

The Girls...The Game

After all those visitors the poor dear totally crashed and has been asleep ever since.  A really good day all-in-all.

Only two left

The sad news of the day (what would a day be without a little heartbreak) is that the chest tube will not be coming out today.  In fact she went back on suction instead.  Here’s the process: The chest tube stays on suction until the surgery docs like what they see in the morning x-ray, which basically is that there are no air pockets around Phenon’s lung.  If they like what they see the suction is turned off and the system sealed for about six hours.  If all is still good at that time the tube comes out.  Supposedly 24 hours after that she will be discharged and the next phase of our adventure begins.

This is the third time that she’s had to go from “water seal” back to suction and it feels pretty frustrating to her.  And worst of all, this means Phenon definitely will not be home for Halloween/Julie’s Birthday.  It’s still looking good for being home for her own birthday though, which is nice.

Oh, and I forgot to include this picture yesterday from Bobby, Tania, Fiona, and Kayla’s visit for Julie’s birthday pie.  So here it is now:

Murphys!! In Glasses!!!

It was a reasonable night.  No more vomiting, decent rest.  Nurses who left the lights out when checking her vitals.  I went home this morning, showered, fed the dogs, put in a load of laundry, got clean clothes for the girl., brought back Starbucks for all, and croissant went over well for breakfast. I’ve straightened up the room, and Phenon has opened gifts and cards that were sent/brought to the house (thanks Caitlin and Marty and Beaconfire folks).  Phenon opened the game that Jean and Sarah brought for her yesterday (Telestrations – yay yay!).  We are now officially open for visitors.  Mind you, visiting hours don’t begin until 10, but she’s ready NOW.

It doesn’t seem like it should be possible to update a blog so many times in one day, when all you are doing in living in a single room.  We don’t leave this room, usually not even to find food.  We’re entirely contained in room 703, 7^th floor East.  And yet, there is constant eventfulness.  I wish so much didn’t happen in one day.  All of the thoughtful “how to kill time” gifts – I wish Phenon had used all of them and was bored to tears.  But we’ve barely touched any of them.

So, after all of the IV portal adventures, Phenon napped.  A well-earned, “loopy” nap.  Then my parents arrived (Grammy and Papito).  They visited with us very quietly while Phenon continued to sleep.  Then came my brother (Bobby), my sister-in-law (Tania), and my nieces (Fiona & Kayla).  Phenon woke up to party.  Turned out my family was showing up to celebrate my birthday a few days early because nobody would be able to make it to the hospital on Halloween (in case we’re still here) or because we’d all be home exhausted and not in the mood for a party (in case we get to go home by then).  So, they were all apparently here to celebrate my birthday.  I didn’t know that ahead of time, but Phenon had talked to them in the morning.  They had been planning on bringing me birthday cake, but she reminded them that pumpkin pie is the dessert of choice for my birthday.  So, in tromped the gang.  Phenon was alright for several minutes after their arrival.  Then she got hiccups.  With each hiccup, her chest tube hurt more.  And then the nausea hit, and didn’t pull its punches.  I went to the nurses, and they thought perhaps she hadn’t eaten enough today (true) and that the pain meds were therefore making her feel sick.  So we tried some applesauce while everyone was visiting.  Then she had to get some additional medicine by mouth, which tasted bad.  She said she didn’t feel well and needed a bucket.  I barked at everyone to leave the room, and Phenon vomited, painfully.  But she didn’t want everyone to leave.  She recovered, slowly and painfully, and the “party” resumed.  We narrowly missed an actual lighting of candles in the room (good catch, Tim, what with all the canisters of oxygen and the oxygen feed running by Phenon’s side when it isn’t in her nose).  Phenon ate a piece of pumpkin pie.

Then nurse Chris (of earlier posting fame) stopped by.  What an awesome guy.  He isn’t working in our section tonight, but knew it was the last night he might be able to see Phenon.  He decided to stop by to say he knew she’d be alright, and knew that the whole thing stunk, because he had felt that way when he’d had cancer.  Chris had a sports injury where he broke an appendage, and when he went to the hospital to get fixed up, they said the broken bone was due to his cancer.  Wait, what?   The cancer had hollowed out his bone.  He was 17.  He required 3 months of chemo and then some radiation.  Six months later he was back on his feet.  Said the best day of all of it was when he got his port back out.  That’s when he knew he was done.  Chris said he wouldn’t lie, chemo was gonna be awful.  But she’d get through, just like he did.  It was really, really kind of him to come say those things to Phenon.  He went from all-around nice guy in my eyes to a total daggone hero for coming in and giving her a boost.  Especially today. When there’s no way to sugar coat it.  My family was pretty impressed.  We finished celebrating, and then everyone left.  Then she vomited again.

Afterwards, she seemed relieved and almost cheerful.  She brushed her teeth, twice, and laughed and joked and harassed me the whole time.  Then she decided that with the new port and the angle of the chest tube, she could get out of her hospital gown and put on some real clothes.  Phenon made it through getting a shirt on – hooray!  But the effort of that made her totally sick to her stomach again.  So now she is sleeping.  I just want to pick her up, wrap her in a blanket, and take her home.  Enough of this shit.  She has been brave, she has been terrified, she has been happy, she has been sick, she has been sweet, she has been unintelligible, she has been stoned, she has been silly, she has been needy, she has been tired.  Tim and I have also been all of those things today too (although Tim had the additional bonus of being the one with the strong stomach and the greater resistance to fainting today).   All of those things have happened today, all in one little room.

P.S.  In the time it took me to login to the wifi network here, she has gotten sick again.  That magic wand to make all of this better now?  That’s overdue.  Get on it, people.

The conclusion was reached over the last few hours that the IV in Phenon’s arm was pretty much shot and not delivering her the full dose of Dilaudid which was resulting in her being in considerably more pain than necessary.  This is what started happening when the IV was in her arm right before it blew up like a Popeye arm.  The obvious thing to do was to take it out and put an IV in the new port they installed two days ago.  Everyone was kind of unclear why she had come back from surgery without an IV in the thing that was installed specifically for that purpose that could have been done when she was unconscious.  Why indeed?

So after Jeanne grilled the RN who came in to access the new port about how experienced she was in doing this we went ahead with execution of the plan which was to apply numbing cream and do the stick.  To say that it did not go well would be far from conveying the misery, pain, and fear that would rain on Phenon over the next half hour or so.  The nurse very confidently stuck the needle in the port and it went in wrong, crooked or something.  With Phenon already in tears the Nurse pulled it back out and we went out to the hallway to talk over what to do next.  She said she’d have to try again and I asked her to call someone up from Oncology who does these things all day, every day, to come up and do the second try.  Phenon was a wreck and we were not about to allow the same person to come back in and give it another shot.

Phenon’s idea was that they could just put the IV in when they took out the chest tube because it was already agreed that she would get something when they did that to, in Phenon’s own words “make me loopy.”  Made perfect sense and we proposed this to our Nurse who looked at me a bit funny and asked me to come back out to the hallway.  So began round two…or was it three?

In the hallway, the weekend attending Physician was looking at the latest x-rays and pointed at some stuff that I pretended to see and informed me that the chest tube would not come out today and that Phenon would be going back on suction as well.  So we were going to simply have to do the IV again to be sure that the next 12 hours with the chest tube in would not be as bad as the last four days were.  I passed on Phenon’s idea that we give her something that would make this next try to get an IV in to the port less terrifying and she agreed to order something that would do that.

Round the next.

I went in and told Julie and Phenon all of this and Phenon cried for a bit because she was really, really, really scared about someone trying to put in another IV.  We were sort of in the middle of calming her when the door opened and four people came in, including a nurse from Oncology with a new IV kit.  It broke my heart how big Phenon’s eyes got when she realized that it was going to be so soon.  And again when she agreed, through tears, that they could do it.  The amount of courage she is showing through all this is astonishing.

I turned out that the second stick was pretty quick and not too painful, though the loopy drugs only kicked in about five minutes after it was all over.  But BOY did they kick in.  For the next hour or so Phenon alternated between funny stoner and dozing off.  After all this, and a visit from Lisa, David, and Jake, Phenon said the pain was really not very bad at all and dozed of.  And that’s where she is now.

One bright spot was that her Choir sent a video of them singing “Fireworks” to her that they recorded during a karaoke night-out last night.  It was VERY thoughtful of them and definitely helped to pick up her spirits.  Check it out:

Phenon had a perfectly mediocre night.  Pain management was better, but still plenty of sleep disrupters.  But she did get periods of decent sleep.  This morning, the sad news that the chest tube will not be coming out today.  We were really hoping the chest tube was coming out today.  Visitors will help lessen the blow!

In the meantime, I’m getting harassed (ahem, I mean lovingly prodded) to put up more of a wishlist.  We truly don’t need anything else because y’all have so generously and lovingly taken care of all of our needs (other than, of course, making the f’ing lymphoma retreat PRIOR to chemo – get that done, people!!).  However, overnight I realized one more thing we could use some help with.  During my tour of the oncology treatment floor yesterday, I talked with the social worker about the loss of hair.  She said that is always the biggest blow, especially for a teen girl.  I would think most especially for Phenon, who has had so much joy expressing herself with her hair (special thanks to Cheryl who brought hair color spray to the hospital!  Thinking that might be another boost today…).  The social worker said that most girls get a wig, and wear it twice.  It’s just too itchy and uncomfortable, and it doesn’t look real to anyone anyway.  After that, most girls go with hats.  So, our community, I thought maybe you could pour on the hats?  Or the bandanas?  Or anything else you think might help her rock the bald for a little while?

For my part, I’ve started the knitting plan.  She has already picked a hat and yarn in the hospital, so that one has begun.  But in my early morning obsessing at home with Rowan, I’ve come up with my own wish list.  Here are some of the hats I’ll be making her (plus the one at the top of this post).

I’ve made a wish list of yarns, all from KnitPicks.  So, my friends, if you’d help me get the yarn, I’ll get the knitting needles a-flyin’.  Does that work for you as a wish list?

• 2 skeins Felici self-striping sock yarn in color: Goth
• 2 skeins Comfy fingering yarn in color: jalapeno
• 2 skeins Simply Cotton sport yarn in color: limeade heather
• 2 skeins Chroma fingering yarn in color: lollipop
• 2 skeins Simply Cotton sport yarn in color: mandarin heather
• 2 skeins Comfy fingering yarn in color: white

Thanks, everyone.

Surgery today was fairly uneventful and lasted a couple of hours.  Phenon says that “it hurt like hell, and she remembers a lot more” about the waking up after.  Not, I hope the actual surgery itself.  Unfortunately the chest tube had to stay in; we were really hoping that it would be able to come out while she was on general anesthesia, but the surgeon decided that she wanted to wait another day.  Hopefully it will come out tomorrow.  That’s the part that continues to cause Phenon the most pain and once it comes out I hope things will feel more manageable to her.

After surgery the day has really been pretty uneventful.  Not the parade of doctors that the previous days have seemed like at times.  The amoebae that is the surgery team on rounds was pretty much the extent of it and they were out of here by 9am or so.  Payal from oncology came by right before surgery and again for a visit a bit over an hour ago  before Julie and Rowan headed home for the night.

Now, if that Percocet could just get here now, that would be lovely.  The Morphine on demand has switched to Dilaudid which seems to work ok, but not as well without the underlying bed of other painkiller for it to sail above.  We were told we’d have to wait until midnight for the Percocet because her last dose of Tranadol was at 6…WAIT THERE WAS NO TRAMADOL GIVEN TO HER AT 6:00 WTF ARE YOU TALKING ABOUT GET RIGHT BACK TO THE PHARMACIST AND GET PHENON HER PERCOCET RIGHT NOW BEFORE I EAT THE EYES RIGHT OUT OF YOUR HEAD!!! Apparently that tack works, as Phenon has now had her Percocet, some water, a new icepack for her shoulder (where the IV port went in) and is lying back with eyes closed.  Hopefully that turns to a nice night of sleep for her.

Phenon was able to come up with a quick wish list. This one isn’t things to do, it’s stuff that would actually have to be bought. Don’t in any way feel any need to do this. These things are to set up a lounge area in her bedroom for when she has visitors. If you are going to get one of these things, or are going to go together on one of these things, could you please post in the comments section so others can know you’re getting something off the brief list?  There were four chairs listed, but her Grand Courtney and G. David put dibs on two of them already.

http://www.target.com/p/Dish-Chair-Small-Wale-Corduroy-Green/-/A-12220127

http://www.target.com/p/Rose-Scenario-Butterfly-Chair/-/A-13352561?reco=Rec_pdp_13352561_ClickCP_Adjacency

I got back to the hospital an hour ago and was very surprised to see Phenon looking like she was feeling pretty good (relatively speaking).  The night sucked, of that there is no doubt, but she’s sitting up, watching Finding Nemo and feeling ready for surgery that should be in an hour or two.  Payal from Oncology came by and I think Phenon was relived to hear that she would be in the operating room while the procedures are being done.

She has also requested that I film her when again when they give her the first goofy shot in prep and again when waking up since she doesn’t remember those things happening last time.  Man, that girl really likes to know what’s going on.  I couldn’t be more proud of how she is handling this very shitty hand that she’s been dealt.

Rowan is catching up on reading the blog today, so maybe I should watch my goddamn language.  Oh shit!  Oops.  I’m such a shitty parent. Now that was just completely uncalled for.  Sorry Rowan.  At least I didn’t type fu…  I almost had you.

Speaking of Rowan, he is a total trooper as well.  He has been rolling with being passed around houses the first few days and the scary things he’s been hearing from us.  It was great to spend a night at home with him last night even if he was just slightly more interested in World of Warcraft than spending time with me.  I understand, I’d rather be playing WoW than this shit too.