HOME!

Tonight, we are home!

Everett has been patiently supporting his brother over the past 12 days, and really did incredible job of understanding and processing the ordeal to the best of his 4 year-old ability.  Since we moved out of the ICU, he's been able to spend more time with his brother, as the hospital floor is a little more flexible with visitors and noise.  

He's generally kept himself quietly occupied with some great new activity books, and loves his recently gifted "Q" shirt.  

Quinn gave me a great scare around midnight last night when he woke up in a cold sweat with a low temperature.  The nurses assured me that he appeared normal otherwise, but naturally I worried for hours until his morning blood tests were run.  He continues to hold normal ammonia and glucose levels, and all other liver values are either normal or continuing to trend towards normal.  He'll have many follow-ups in the weeks ahead to make sure he continues to improve, but all signs continue to point towards complete healing.

As a good-bye present from the child life specialist, Quinn was given his own medical kit today, including a real stethoscope.  She encourages medical play so that he won't be fearful during future visits.  At one point earlier in the week Quinn had to have an hourly glucose test.  The evening nurse said that, by the end of her shift, when she waked into the room Quinn would raise his finger and hand it to her to be pricked.  It was so sweet and sad at the same time.

Quinn felt up to a little dancing today, and starting boogying once we put on the CD of music from his classroom.  It contains one favorite song selected by each family.

On the way home Quinn seemed absolutely overjoyed.  He snuggled in for the short ride ride with my cozy sweater.  At home, Quinn was quite amenable to being changed into his comfy footed pjs that he hasn't seen in two weeks, and eagerly headed to play.

Tonight, we duplicated the celebratory thai dinner we had the night Quinn came home from the hospital in 2011.  It was July 21st, which also happens to be my birthday.  At the time I couldn't have wished for a better birthday present, and now of course we couldn't have a better holiday present than a healthy baby boy home with us once again.

You have all been a tremendous part of Quinn's healing, through your words and thoughts of hope, help, and support; your kind gifts and nourishment; your visits and offers of time with Everett; and your love.  Thank you so very, very much for surrounding us with such a large global hug - it certainly gave us incredible strength to get through a horrific time.  Wishing you and your family the very best during the holidays and year ahead.  Much love and thanks to you all.

Bath time

Today Quinn's feeding tube was removed, as he continues to eat incredibly well on his own.  The nurses suggested that he might be eating more because of his ordeal, and seemed surprised to learn that Quinn usually asks for seconds of almost any dish.  He is a born foodie for sure, willing to try most anything.  It's also so lovely to be able to nurse my baby again.

With all tubes and such detached, Quinn was cleared to have his first bath in more than two weeks.  The hospital has incredibly cute, child size bath tubs in the rooms.  They are the perfect size for Quinn to splash around in, and get into his usual mischievous game of throwing everything from the tub.  It seemed to feel good to him to scrub off the various adhesives that once held critical lines in place.

We also had the usual visits from GI, PT, OT, and other doctors, all in eager anticipation of heading home as early as tomorrow.  We're keeping our fingers and toes crossed that tomorrow's blood tests show normal results and continued improvement!

Meatballs

This afternoon we were instructed to feed Quinn everything and anything his heart desired.  Given that the hospital's kid's menu is a bit limited, "everything" entailed a list similar to the one we read regularly in the book "The Very Hungry Caterpillar."  Quinn's all time favorite food for the day was the meat balls.  He ate one for lunch, and two for dinner.  In addition he consumed two bananas, several portions of yogurt, millet/squash/mango, steamed carrot, mashed potatoes and gravy, macaroni and cheese, peach juice, coconut water, and mama's milk.  We can only imagine the stomach ache he might have right now as he sleeps peacefully.

We also were graced once again with a bit of sunshine, and took Quinn on another brief wagon ride, this time bringing him outside for the first time since Monday the 3rd.  He laughed when he felt the cold air on his face and seemed to love the sunshine.  Les Schwab tire company was at the hospital handing out toys, along with a local news station.  Quinn was handed a "popcorn walker" which he quickly became enthralled with.

  

Quinn had his PICC line removed today, which should make future tests interesting as blood will need to be drawn directly; however, we're glad to have this last intravenous infection risk removed.  If all goes well his feeding tube will be removed soon as well, and we'll be heading home sometime over the weekend!

12.12.12

Today is the last day in one hundred years that the month, day and year will all be the same (until 01.01.2101), and one that will be particularly memorable for us.  Today Quinn "graduated" from the ICU to the regular hospital floor.  One step closer to home!  

We were told that he is expected to make a complete recovery.  There is still little clarity about the cause for his fulminant hepatic failure, if any, beyond the fact that he tested positive for the influenza A virus.  This lack of explanation is challenging to those of us that like to understand, plan, and exert some type of control over cause and effect in their environment; however, we are so overwhelmingly glad to have our little boy practically back to normal that we quickly forget the need to understand.

Quinn also had the pleasure of eating food by mouth for the first time in a week and a half.  He certainly was eager and ready and reports that this was perhaps the best banana he's ever tasted.

Quinn also felt up to playing his favorite game.  It's called "where's Quinn?" He closes his eyes and disappears and magically reappears moments later when he opens his eyes.  It's an all time favorite.  He also was entranced with the nurse call button on the remote control.

We're thrilled to be leaving behind the large vital signs monitor that we've stared at seemingly continuously.  Although Quinn should no longer be contagious, he still needed to be masked during transport to our new hospital room.

We're feeling we're likely very close to reaching the goal of having a great holiday at home...

 

Leaving ICU?

I don't know that I really dare say it out loud, but all signs are pointing to being able to leave the ICU, possibly as early as tomorrow.  In preparation for this big event, Quinn had a sponge bath tonight, an activity he was not pleased by, but one that was much needed after a week in bed.  Keep your fingers crossed for good news tomorrow...

Post-bath, Quinn looks suspiciously towards his nurse wondering what will happen next.

The difference a week makes

Think back to the last experience you had which caused your whole body to tense up for a period of time.  The kind of tension that you grow to live with, and then one day releases, and you feel able to take a deep breath once again.  That was how today was.

For those of you that know Quinn well, you know that he is a careful observer who takes his time to try new things.  You also know that when he finally gets around to new things, he does them with all his heart and soul.  This is the way he's been since birth.  He was born almost two weeks late, on a Monday night just 36 hours shy of being born by induced labor.  I had had acupunture that day to help induce labor, followed by lots of walking on Mt. Tabor (also apparently know as Mt. Labor to some, including me now).  At 6:00, I felt contractions.  At 7:00, we headed to the hospital.  At 8:30, he was born, face up with a full knot tied in his umbilical cord from all his in-utero activity.  Two rather unusual things according to our midwife.

When we visiting my parents in Massachusetts, Quinn learned to climb stairs - the entire flight of them the first time he tried.  When he learned to walk he took three tentative steps one day and a few days later bussed his own plate from the table at school like all of his classmates.  He doesn't seem to have a middle ground.  It's all or nothing. 

Thus, we should not have been suprised by today's events, although we were.  He received his daily visits from multiple doctors: GI, Neuro, ICU, Infectious Disease, and also saw both physical and occupational therapists as well.  They helped explain exercises that we should do with him to help him relearn how to sit and crawl as he regains strength.  While doing these exercises, Quinn seemed to have a hard time holding himself up without constant support, and was eager to lay back down again.  Of course, a short while later Quinn decided to not only get himself to standing, but also dance in his crib and clap along to a few songs.

Quinn is now able to drink clear liquids, and his glucose and ammonia levels have remained relatively stable.  I ran out to the store tonight to pick up some better alternatives to hospital juice.  Coconut water, peach nectar baby cocktail tomorrow for sure.  And, just because I'm feeling ambitious, I brought back a few of Q's favorite fruits and baby oatmeal mush.  We're hoping we're within reach of leaving ICU for the main floor of the hospital, and one step closer to going home, and solid foods are a huge part of that.

It's interesting to think about the horrific place we were one week ago, and how much has happened and changed in a short period of time.  Every Monday brings a new rotation of doctors and support staff, and those we've newly met today have all commented on Quinn's amazing story.  Just a few minutes ago the overnight doc said that they preferred to see brain failure rather than liver failure, because liver failure can be very difficult to treat. 

Tonight, Quinn is sleeping in the deepest sleep since he came to the hospital.  His heart rate alarm keeps going off as his body fully relaxes, his heart rate slows, and his little eyelids flutter in his REM sleep world.  It's so nice to see.

More Progress

Last night I was reminded how important it is to ask questions.  I suggested to our nurse how much I wanted to cuddle with Quinn.  Immediately she wheeled in an adult size bed and let us sleep together last night.  It felt so good to be so close to him; however, he did just about everything but sleep! 

He is rapidly regaining his strength - last night he had trouble turning his head from side to side, but has remastered that skill today.  He unfortunately has had reactions to two antibiotics, one of which resulted in meds not staying down on a few occasions last night.  Despite this, he was in good spirits, and received both intravenous glucose and insulin to help maintain ammonia levels by removing any proteins from his digestive pathways.  Under this sugar influence, Quinn decided to alternate snuggling with play, and managed to pull his stomach feeding tube from his nose (which had to be replaced today).  He was also fascinated with his blood oxygen meter, which is essentially a red light attached to his big toe.  He thrust his leg into the air every 1/2 an hour or so to examine it after wrestling his sock off.

As a part of rebuilding muscle strength, Quinn went for a walk today with his nurse in his special physical therapy seat and a small wagon.  It was good for him to be out of the room for a short while, although he was very nervous at first as he's become quite suspicious of the intentions of the nurses as of late.  Here's what we saw on our brief walk in the hospital.  His floor is the sea turtle/ creature floor, and there are many beautiful artistic and functional works on the first floor.

Quinn started again on breast milk tonight, in the hopes that we'll soon find the right dietary combination to unlock his metabolism and work on getting that back to normal again.  We're so thrilled with his progress thus far and look forward to finding out when we might think about leaving the PICU.  Again, thanks for all your love and support.