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.

Amusement Parks

I have never been one to enjoy the thrill rides at amusement parks.  The log ride is about as far as I go in terms of hills and valleys and tummy-turning excitement.  Although I'd been preparing for less positive news of some kind, it's been a bumpy sort of day.

This morning Quinn awoke and focused on our faces for the first time in 6 days.  He is weak, but the physical therapist wanted to get him into an upright position in a special seat so he can start regaining muscle tone.  Although less than thrilled with the idea at first, he became interested in coloring, and playing with a new set of cars and watching daddy do fun tricks.  Quinn's first word was "uh-oh" and anything that involves us saying those words brings a smile to his face.

After some play time, I was able to hold him for the first time since Monday!  So wonderful.  Unfortunately, this afternoon we learned that his ammonia levels had risen back to 120 (normal levels are under 50).  He returned to the ER for a CT scan, and more blood work was ordered.  He was taken off the a high-protein feeding protocol, because protein digestion can be related to high ammonia levels.  He's now receiving glucose and breast milk.  Happily, as of this evening, his ammonia labs have come back at normal levels again, and he's doing well.

 

Quotes for the day from the various staff in the PICU: "I didn't think he was going to survive,""you can't get sicker than he was on Monday," "he's a rock star," and "miraculous."

Sleepless night

Quinn has had a very eventful day today.  Both of his leg catheters were removed and replaced by a PICC (peripherally inserted central catheter) located in his upper arm.  This is much safer as it is less prone to infection and, when he is mobile again (!), he will be unable to pull it out easily.

Liver values have remained at normal levels.  This morning he was quite feisty, squirming regularly and acting very uncomfortable.  With a breathing tube he is unable to cry and any coughs register only as a "beep, beep, beep" on the ventilator.  These differ slightly from the "beep" and "beep, beep" alarms on the machines administering nutrition and medicine, and the machine that monitors vital signs.  After a few days you are able to stop jumping at every sound as you've learned what they mean, and which ones matter most.  

The discomfort was another strong sign that Quinn was ready to take a big step - removal of his breathing tube.  That happened just a short while ago and he's doing fine breathing on his own.  He's quite raspy, and somewhat agitated as he becomes more aware of his surroundings.  He settles when Nick or I are holding his hand and stroking his head.  I have a feeling I'll be doing a lot of that tonight and a little less sleeping.  And that most certainly is fine and welcomed.

Today was slightly less eventful, a somewhat welcome change from earlier in the week.  Quinn continues to hold strong as his liver metrics are still working towards normal values.  Most importantly, his ammonia levels have remained normal (normal is 10-50, his afternoon labs showed him at 45, far down from the 500 level he was admitted at). 

Unfortunately Quinn did not process the breast milk and had to have this aspirated from his stomach.  He's been started on intravenous feed instead and we'll likely try the milk again tomorrow.  There was not great concern as the digestive system can take a while to restore after or during critical illness.  Quinn did finally have a BM.  I've only seen my 4 year old that excited about poop before; this was apparently a good milestone and contents and weight were examined and recorded.  It's really too bad Everett wasn't present.

Quinn is processing the sedative better and is occasionally stirring, a very normal and welcome advancement.  He has slightly opened his eyes when he hears our voices, and best of all, squeezed our fingers when we hold his hand.  He even furrows his brown deeply when someone is clearing his breathing tube, or doing something else that he's not thrilled with.  We're quite used to that face and so glad to see it return.

Today was definitely a day of grateful thoughts as well.  We are surrounded by love in so many forms.  Visits from friends and family, amazing snacks and food, and sweet well wishes.  Quinn's room has grown to be such a cozy and warm space.  We're grateful to be in Portland where we have access to tremendous medical facilities and staff.  The PICU doctors, myriad of specialists, and nurses have all been fabulous - open, honest, patient, knowledgeable, and empowering.  This morning during rounds I joined 17 people in discussing Quinn's care plan for the day.  Incredible that they encourage parents to be involved at this level.  We're grateful to be able to take this time to be with Quinn as he goes through treatments and to be able to be his advocate and point of consistency.  Thanks to you all. 

The dialysis machine was removed from Quinn's room a few minutes ago.  I'm beginning to tire of the phrase "cautiously optimistic," although I understand the need to not over commit to a positive perspective.  Regardless, this is a positive sign as Quinn's liver is working again and he is now receiving pumped breast milk through his feeding tube.

Surprisingly, Quinn has tested positive for Influenza A.  In two other documented cases in 2006 this infection has been documented as a possible cause of liver failure in children.  While we're not excited to potentially be a medical case study, it is somewhat of a relief to have one potential or partial contributing factor. 

It sounds as though we'll likely learn more tomorrow about when the breathing tube might be able to be removed, and what a recovery path could look like.  Quinn's already received a visit today from the occupational therapists.  This too surprised me, but they made it quite clear that growing and thriving toddler is an important job, and one that they'll help him get back to with time.

Twice a day, between 7 and 8 am and pm the staff gives report about each patient.  This is a time when you can either stay in the room, or stay out of the room, but cannot come and go.  With a four year old you can imagine it's important not to commit to a solid hour in a quiet hospital room, so we opted to join the Pediatric ICU scrap booking workshop.  I kid you not; they've thought of everything here.  

Now, I am certainly no Martha Stewart, but it was nice for all of us to use a different part of the brain for a moment and Everett loved creating collages to further decorate his brother's room.  Here's the finished product.  Thanks again to Amy Close for sharing these photos so quickly with us.

 Everett did a great job cutting out the whale for his picture for Quinn.
 

The window in Quinn's room with the lights of downtown in the distance.

Almost noon

It's almost noon on Wednesday and Quinn continues to do well off of dialysis.  More lab tests will be sent off shortly to hopefully confirm what we are seeing visually and through his vitals.  He continues to be sedated, but has raised his hand and legs slightly and moved his fingers.  I think he's dancing in his sleep.  One of his favorite songs at school is R-E-S-P-E-C-T - he loves grooving to this whenever it comes on.  Maybe we'll play it a little later if the good reports continue.  :)

I love this sweet photo of Quinn caught in a moment of deep leaf contemplation. 

And these two shots from a summer concert on Sauvie's Island in August.  Quinn loves food and prefers to eat "double fisted."  Even now he likes to have a spoon in each hand as he feeds himself.

The window in Quinn's hospital adorned with love.  Our smiley babe from last year.  Henry "the biggest and strongest train" according to brother Everett.  Teddy, on loan from sweet Aunt Sarah.  As an infant Teddy saw Sarah through her own bought of illness and hospitalization and is keeping watch over Quinn now. 

The doctors and nurses kept asking to see photos of Quinn when he wasn't ill.  Most are parents themselves as well, many with kids around the same age.

Out of sight are the yummy goodies and supportive notes from my amazing coworkers, Quinn's childcare, and friends.

Big brother

Everett was able to see Quinn last night.  They have a wonderful Child Life Specialist here and she offered him the opportunity to do some medical play.  He was given his own "patient" (doll), and after Everett drew a face on the baby, they attached a catheter, a breathing tube, and a blood pressure cuff.  He "listened" to the heartbeat with a stethoscope and gave the doll an "injection" of saline water through the catheter.  This made it all seem far less scary when Everett did see Quinn.

 

When we got to Quinn's room he washed his hands and made "very good bubble gloves" - getting the soap in between his fingers, and on the backs of his hands, and under his nails, prior to rinsing.  Thanks Growing Seeds for the good hand washing lessons at school!  Everett was quite calm around Quinn, and asked to be picked up to see his brother better and be able get close so he could whisper "I love you Quinn."  Such a sweetie.

It's nice to see the sunrise this morning.  Quinn is continuing to do better and better, though everyone is still very cautiously optimistic.  They've decided to stop the dialysis today as it appears his liver has regained function.  The machine has been off for about an hour now and we'll know more once lab test come back to show how his body is responding.  He's also holding his own body temperature.  He's been under temp since our arrival at the hospital.

We have been in the Pediatric Intensive Care Unit for a day and a half now. We still await many test results. Quinn was started on dialysis last night (Monday) to reduce the ammonia level in his blood. This has been successful and he went on to this treatment well. Yesterday the doctors spoke of liver transplant as a seemingly likely possibility. Today they are cautiously optimistic that his condition may be improving and that this may not be necessary.

We brought in some of his favorite things today. "Little Blue Truck" - a great book by Alice Schertle is a favorite (Quinn loves to make the "vroom" noise). We're playing his favorite rest time music - "Canyon Trilogy" by R. Carlos Nakai (Native American flute) and George Winston's piano music.

 

Quinn's favorite bedtime book.