It's Been a Crazy Week

Just woke up to another gray, foggy and overcast day in Pittsburgh.  I really had no idea the weather was like this so much of the time here.  I am happy to say the first three days of the week were beautiful and sunny-which was a welcoming sight.  I guess the blue skies and sunny days were deceiving in that it was pretty cold outside, but being nestled in this nice climate controlled hospital we didn't experience the sting of Jack Frost.  We are finally getting some snow too.  I always thought it was fairly snowy here but so far we haven't seen too much.  I wonder where they would actually put any large amt. of snowfall-the streets are pretty narrow and steep I don't really notice much empty space for random piles of snow.---I'll let ya know if we get a super blizzard or if I look out the window and observe anything of significance.

Ok so I did it, even though I thought it might be a horrible idea and leave mine and Mikaela's relationship in question...I broke down and CUT BANGS!  (She had to pinky promise she would NOT get mad at me...no matter what.)
She LOVES them and I actually agree that they look great on her. 
Well, here's a picture or two so you can see for yourself.

And-we're both still smiling!  :)



I know in my last post I mentioned the doctors were going to think about a plan to get us back to the RMH, well that was when her ammonia level was stable for a couple of days in a row.  Here is what the ammonia level is doing.
Jan 1:  Ammonia 146 (4am), 144 (4pm)
Jan 2:  Ammonia 147 (4am), 103 (4pm)
Jan 3:  Ammonia 279 (4am), 126 (4pm)
Jan 4:  Ammonia 273 (4am), 168 (noon), 14? (4pm)
Jan 5:  Ammonia 156 (4am), 262 (11:15pm)
Jan 6:  Ammonia 252 (4am), 125 (noon), 151 (10:30pm)
Jan 7:  Ammonia 268 (4am)
As you can see it is kind of allover with the 4am consistently being the highest.  One good thing is that whether the level is 273 or 103 Mikaela is usually able to answer questions and knows what is going on. (When she first had hepatic encephalopathy in Burlington on Oct. 5th, her ammonia was around 120 and she was very disoriented, confused and unable to do basic things) Of course even now at a higher level she feels dizzier, feels nauseated, has some blurry vision and just feels pretty crumby all around.  It is such a gray area, this ammonia thing.  Maybe she has built up a tolerance-anyway that is why the medical folks like to watch her clinical status and not just the numbers. However, it is important to get the numbers stable at a lower level. So, what to do?  The GI team has spoken with the renal team about dialysis-which we really DON'T want to do, but will if really needed.  In order to do dialysis, Mikaela would need to have another central line placed (probably near her collar bone) because her PICC line is not quite large enough. She does totally NOT want to go through that.  But, for the next couple of days, we are going to try to control ammonia levels by the amt. of protein intake.  She has been restricted to a 40g daily allowance.  Here's how I understand it (remember, I'm just a mom here)--Protein breaks down into a couple of things, one being ammonia.  By only getting 4-6g of protein at a time, we are hoping the liver will be able to keep up processing the ammonia and get the kidneys to excrete it.  When loaded with 20+grams at a time (like with the cheese pizza Mikaela loves) or even with 10-12 grams (like with the bowl of milk and cereal Mikaela loves) it is just too much.  Time to eat lots of small meals containing lots of fruits and veggies (low protein, but tummy filling fiber) we are keeping our fingers crossed that after a few days of watching the diet, the ammonia level will stay down consistently.  We will reevaluate then and the doctors will form a plan for moving forward.  Besides the up and down ammonia levels, Mikaela's labs have been pretty stable and stayed at her baseline.  So, that is good news.

As far as daily happenings, we've settled into life on 9a pretty well.  At 6:50am housekeeping comes in to empty the trash, at 7:15 the resident comes in for an exam, to check how things are going & to see if we have any questions (she will see us later on rounds), about 8:00 the PCT (patient care technician) comes in for vitals, around 8:30 the day nurse comes in to introduce herself , at this point, I give up any hope of getting more rest, hop in the shower, then head down to the cafeteria to grab M some breakfast-fruit, toast, bagel, or english muffin with butter and grape jelly, SMALL amt of cottage cheese (high in protein, ya know) with honey and a drink.  I grab myself  a glass of iced tea (not really a coffee drinker), a piece of fruit, hash browns to share and some scrambled eggs (hey, I need to start off with lots of protein so I have the energy to monitor her protein and other things the rest of the day).  Of course after all this time, I have the routine down pat-while the bread is toasting I can run to the other side of the cafeteria to get my tea, look longingly at the bakery goods that I don't need, get my eggs and the butter and jelly for the toast and usually get the fruit too-I don't think I am very speedy but the toaster is just nice and slow.  :0)  Now I have a tray full of slippery plastic (ugh!)containers that I need to try and carefully balance back across the cafeteria to the checkout line.  Since we aren't supposed to remove the trays from the cafeteria, I carefully stack all items into a plastic (ugh again) bag so I can carry them up the room.  But first a quick stop for silverware (more plastic), pepper, napkins and last but not least ketchup (yep, it's true-I LOVE ketchup on my scrambled eggs and being in Pittsburgh, the Heinz capital, they offer the best!)  Finally, I'm on my way dodging doctors in the hallways, through the double doors to the orange elevators that will lift me back up the 9th floor.  One morning, at about the orange elevators, I realized I had set my tea down to get the ketchup for my eggs and had to hurry back hoping it hadn't been tossed by a cafeteria worker.  It was safe and sound.  Thank goodness, because it's not like being at home where I can just hop into the kitchen and get a new one-it is a bit of a process and it would mean yet another Styrofoam glass for the garbage! (After re-reading this, I really need to try and get a canvas bag and set of reusable plastic dishes-I am feeling guilty about my part in not taking care of the earth!)  Once back in the room, it is time to wake Mikaela and start getting her to take her morning meds (now this is either a simple, no problem task or a tortuous, drawn out task-depends on how she is feeling at the moment and how strict our nurse for the day is).  During breakfast, we are usually visited by our GI attending and the team and then awhile later the nephrologist stops by.  Usually about noon, we are ready for the day's activities.

Activities for the day depend on how Mikaela is feeling and what has been planned.  One day this week the Women's Basketball Team from Pitt came for a BINGO party on the 6th floor.  The athletes and coaches were awesome with the patients, playing BINGO, making jokes and helping everyone to have a good time. Mikaela won a few games and crafts & we received a pass to go to one of their games-which would be a fun event when Mikaela gets out of the hospital.  They are supposed to have a pretty sweet venue at the Peterson Events Center.  On another day this week, an artist came to the Teen Lounge to do 2 hours of silk painting.  Mikaela made 2 cards, one with a beautiful sunset scene and one in the spirit of Pittsburgh (STEELERS).  She also made a few pieces to hang in the window!  Along with these special events, the Teen lounge is open quite a bit of the day and offers crafts, computers, pool, books, games, video games, music and peer interaction & conversation.   We have also had many therapy dogs come to visit, the latest being Charlie, a very cool (he walked in with a little attitude wearing small round sunglasses) 7 yr. old poodle.  He was super well behaved, totally soft and waved goodbye as he was leaving!  Of course it's not all fun and games as the tutor always seems to find us every day for a little school work.  :)  And if Mikaela isn't feeling well, there are movies, the iPad and quiet activities for the in the room. 

On day while we were taking it easy, there was a knock on the door and the nurse practitioner from pain management came in with a couple of anesthesiologist from the pain center-I couldn't believe who it was when I looked up---the one and only person here who has totally rubbed me (and Mikey) the way wrong way!!!  Yep the anesthesiologist who was on for Mikaela's first scope here at CHP!  Literally my stomach jumped into my throat.  LIKE NO WAY!  I wanted to hop up and ask him to head right back OUT the door (but of course, you all know that is just not in my nature).  So, I took a deep breath, smiled, gave him a little look and thought ok, Dr. Igor (don't know his last name), I will give you a second chance BUT...if you make me feel super stupid again I am going to request someone else.  And then he recognized us too-
Dr., "Hey, I've met you before."
Me, "Yep, down in the procedure room for an endoscopy."
Dr., "Oh Yeah, you (looking at Mikaela) were totally screaming."
Mikaela and I shot a quick glance at each other.  Clearly he was not remembering Mikaela because she is not a screamer, not even close.  Maybe he was trying to be funny.  Maybe we just didn't "get him" the first time we met him either.  Anyway, the next 10 minute conversation actually went pretty well-he listened, advised, agreed and wanted us to call if we had questions.  I suppose it's good I gave him a second chance because this experience was a 360 degree turn around and perhaps he will be able to help us with something someday.-It's a small world, ya never know.

Mom and Gram did finally make it down on Wednesday.  We had fun playing some Wii games.  Gram doesn't like Wii pictionary but is pretty good at  Wii bowling.  Later in the evening she and I switched to a good old fashioned card game, where when we play together, we kind of get to make up our own version ;0).  It was fun.  At about 8:30 she said it must be about 11 and she was ready for bed-she didn't really believe me when I told her what the real time was.  Welcome to a nice LONG day in the hospital.  Thankfully, some days go faster then others.

Later tonight, the GI attending and one of the transplant surgeons stopped by.  The GI doc was explaining the plan to the surgeon and then she got on the phone to the dietition (food services had sent up cereal with rice milk for Mikaela but the milk was in an unlabled container-I had NO idea the total quantity or how many grams of protein it contained-within a few mins I had the answers I needed-thanks Dr. G.)  While Dr. G was talking with the dietition, I asked the surgeon the BIG question of any idea how much longer???  He said she was on the top of the list (next matching liver/kidney is hers).  Unfortunately, donations are down 20-30% nationwide.  He said it goes like that sometimes but, it will pick up again soon-hang in there.  Bummer that there is a shortage of organs, does there need to be more public education on the importance of organ donation?  Maybe awareness is the key. I can only image how hard of a decision it must. Hopefully, loved ones can see that good  can come out of their tragedy.  Here's the fact-only humans can save other humans whether by giving blood or by donating organs.  No amout of technology or human progression has been able to duplicate that.  We all need each other.

On that note, I am going to sign off.  It has literally taken me all day to type up this post.  I guess between people coming in and out, phone calls, doing crafts with Mikaela, helping with homework, visiting the tutor, talking with Mikey, making trips to and from the cafeteria, going to the RMH to help mom carry in groceries (she was on a mission to find a variety of no or low protein snacks/foods for Mikaela-SUCCESS), helping Mikaela wrap her arm for her shower, changing her sheets (wish all of the beds at home had a button so I could raise the bed to change the sheets) and about a dozen other tasks it makes sense that it is now 10:30 and I am just finishing up. 

Mikaela has been asleep for the past couple of hours as she was feeling yucky and feeling like her ammonia was going up.  Now I will end the day as it started, by waking her up to take her medicine.  And of course, since she will have just had a nice nap, she will be ready to watch some tv or a movie while I am counting the minutes until the meds are down, the sofa has been transformed into my "bed", jammies are on, teeth are brushed, Mikaela is tucked in all cozy and I can stretch out and think about going to sleep.  When you all go to bed tonight, please notice every cozy inch of your perfectly formed, just right, broken in mattress.  Notice your comfy, soft, fluffy pillow.  Notice every familiar sound and smell.  And get a warm feeling all over as you close your tired eyes, relax your exhausted body and drift off to happy dreams. -Can you all tell how much I miss my own sweet bed!-so please appreciate and enjoy yours! :)  

PS-We have been in Pittsburgh 2 months today, I guess that means we are getting closer to getting to go home.  :)  Miss you all.  XOXO