Wednesday

On Wednesday morning, the Infectious Disease doctor told us that we could go home in the afternoon - yeah!  We were very grateful that the Lord brought us to Children's St. Paul because Walter received excellent care...and thankful he was ready to go home.  We were really missing Henry and anxious to see him.  During one phone conversation with Henry he said, "Boy, Walter must be having the time of his life there."  I think he pictured us on a big vacation without him!  At any rate, we were so relieved that Walter had improved and we would make it home in time for Henry's "Spring Fling" program at school on Thursday. 

The view from our hospital room.  It was beautiful weather each day we were there - until the day we left.  Jackets would have been great - but that was one thing I hadn't packed!

 Our sweet friends, sent some special gifts for Henry and Walter.  They have spent hours and hours looking through and reading these books (and making lots of paper airplanes). 

 

 Passing the time playing games and listening to music with Dad.

 

 Walter was pretty worn out and tired (Nate looks a little tired, too) and feel asleep while we waited for the doctor to visit.  He also missed a few MN Gophers athletes who stopped by to say hello. 

 The view from Walter's bed.  It's funny how you settle into a place and it starts to feel homey - it doesn't even feel strange when you wake up multiple times during the night and there are people hoovering over the bed.

We liked to walk across the hall to look out this window.  The James J. Hill house is in the upper right side of the picture. 

After lunch he was back in his street clothes.  It felt a little sad saying goodbye to Nurse Linda and room 4116...but also wonderful.  We couldn't get over the fact that the grass was green - how long were we gone?  God gave us incredible peace during this week.  We can both remember a few moments when we felt fearful/uncertain about the situation we were in but each of those moments were almost immediately replaced by His comfort and peace, trusting that God knew all of Walter's needs and had a plan for him.  We have quite a Provider!



Tuesday

On Tuesday Walter continued to improve, but all the activity from Monday seemed to have worn him out.  He got a chance to sleep in and was a little annoyed to be woken up by the doctors doing rounds.

 

 Nate and Walter sleeping in.  I really wanted to sleep late, but I woke up at 5:30 a.m. and finally gave in and started my day...At least I didn't have to wait in line for the shower. 

 

Waiting for Dad (he was getting some coffee)

 The nurses tried to get Walter out and walking - he preferred to be carried.

We finally convinced him to visit the playroom.  He loved painting and using glitter on three wooden cutouts, which he plans on making into Christmas ornaments.

Mixing colors with Dad.

 

 One of the playroom coordinators brought out a little bag of things used at the hospital.  She helped Walter tape an IV onto Dad's hand...

 

...give Dad some medicine through the IV and then wrap his arm up.  He played this for a long time and Nate was a great patient.

 

Then it was back to our room for a little snack and rest.

We had Nurse Linda for 3 days and she was wonderful.  Walter hardly said, "Boo" to her, but he thought she was great.  Each day she had a new Knock, Knock Joke for him.

 

Walter showing Nurse Linda a few games on Dad's phone. 

 

 Steamed white rice and chicken for lunch - he literally ate one grain of rice at a time.

After lunch, Mimi Megan and Grandma came to visit.  They brought a delicious meal from Cathay's (yum!!) and Mimi played a few rounds of Spot It! with Walter.  We gave Grandma and Mimi a quick tour of our hall and stopped in the playroom for the afternoon art activity...but it became obvious that Walter wasn't in the mood for art, so back to the room for a needed nap.



 

Walter ordered rice and chicken again for dinner.  We sat together and listened to the BSF lecture from the week before while he ate.

A view of the nurses station from our doorway.

 

Playing games with Dad.  Walter was so excited to be free from his IV for a few hours.

One of the goals for the day was taking the oral antibiotic instead of using the IV.  Unfortunately, this antibiotic has a terrible taste.  Nurse Linda told us that most older patients describe it's taste as "dirty socks."  In order to leave the hospital, Walter had to be able to take and keep down his medication so he was definitely motivated (he asked many times, "When can I leave here?"). 

 

Our first attempt involved mixing a pill with ice cream and chocolate syrup.  He swallowed it and then seconds later threw it up, along with dinner and everything else.  The scene was slightly comical and one Nurse Linda says she will remember for a long time.  When we asked Walter what it tasted like, he responded, "Garbage!" 

 

We took a little break before trying the liquid, grape-flavored version.  While we waited, he took his aspirin and decided he was hungry for some soup - never mind that it was 9 p.m. and the kitchen was closed.  Nurse Kristin was so king and went searching for a can of chicken noodle soup to heat up for him. 

Mimi Erin came to say, "Hello" for a little while.  She brought some Caribou Coffee treats for Nate and myself and played Spot It! with Walter while he sipped on his medicine mixed with apple juice.  Thankfully, he kept the antibiotic down!  After saying goodnight to Mimi Erin, he took a late night bath - his first bath in five days (yikes!)  - and then off to bed.

Monday

Sunday consisted of meeting with lots of different doctors, starting his IVIG and antibiotic treatments and trying to catch up on sleep.  They started Walter off with some Ibuprofen and Benadryl to help prevent a reaction to the IVIG treatment.   They must have had some funky Benadryl because he took it and then immediately threw it and everything else he'd eaten up...so he had to start over.  Nurse Lisa knew exactly what to do and brought in a rocket popsicle to help get and keep the Benadryl down.  We were transferred to the fourth floor in the late afternoon after his IV had been started.  My sisters came to visit later that night and brought dinner and some treats for us. 

 

When Walter woke up Monday morning, he looked like a new person.  It was amazing how much better he looked compared to the night before - his rash was much almost gone and his eyes were much less red.

 

Nate catching up on the latest "news" in People.  

I'm sure he thought it was almost as interesting as American Rifleman.

Watching a little TV.  When I look at these pictures now, I can see that he still looks sick but at the time this was a huge improvement.

 Walter and Dad resting.

 



He perked up a little after breakfast and remembered the Mimis delivered a Lego Star Wars set the night before.  When they were constantly drawing blood and doing IV stuff on Saturday night/Sunday morning, we told him he could get a new Lego set when all this was over (he quickly requested Jabba the Hut's Palace!).  He enjoyed playing with Legos until the doctors came through to check on him. 

 

He had an ultrasound downstairs around 11:00 and then an echo at 1:00.

 



He ate a little chicken noodle soup before his echo...

 

...and after his echo, decided he wasn't quite done with the lunch.

Nate and I were well taken care of by family and friends who offered to bring us meals at the hospital. Our dear friend Mary (and daughter, Clara) swung by the ER entrance to drop off lunch for us on this day.

 

Children's Hospital has wonderful volunteers.  The chaplain visited and then "My Little Green Friends" stopped by to ask if Walter would like to plant something - he chose broccoli.  These two men were so kind.

 Hearing the options ("my brother doesn't really like salad," "we don't eat radishes at our house...")

 

Adding soil to the bowl.

Planting the tiny seeds.

Using a syringe to water the seeds.

Holding on to his broccoli.  This may have been the highlight of the hospital visit for him.  Even at home, he's very attentive to his 4 broccoli sprouts. 

Next up, Zuri and her owner visited. 

 

All tired out.

 We spent a little time in the playroom that afternoon.  Walter got to feed the fish and ride in a toy police car (and write a few tickets for Dad).  The director showed us where we could wash our clothes, check out games, and borrow movies.  After Walter's nap and dinner, we popped in a movie (Homeward Bound) and played Uno, the Cars' version.  He liked the Cars' version so much that he didn't want to discard any cards - he just kept drawing new ones to add to his hand!  Grandma L even snuck in a quick visit right before visiting hours were over while she picked up our clean laundry that needed to be dried - so many people taking care of us!

All Over Again...

Last week was an interesting and exhausting one for our family.  I noticed Walter had a fever after BSF, which stayed high through the night even with Tylenol and Motrin.  He was having abdominal pain in the morning and still had the fever so we headed to urgent care.  They put him on an antibiotic after a throat culture was positive for strep.  When Nate heard about the diagnosis and prescription he said, "Why did they have to put him on amoxicillin?  That's what they put him on last time he had strep, it didn't seem to work, and then he ended up with Kawasaki.  This makes me nervous."

 

Forty-eight hours later, we were back at Urgent Care switching antibiotics and doing lab work.  And a few hours after that, we were at the ER, pretty sure that Walter was dealing with Kawasaki Disease - again.

 

The ER wasn't so sure and wanted to send us home, but when the lab results were much worse than they were that morning, they told us they were sending us by ambulance to one of the children's hospitals in Minneapolis/St. Paul.

 

Waiting in the ER - definitely not feeling well, but managed a smile for Dad.

At this point his eyes were red, he had a "strawberry tongue," his lips were swollen and cracking, he had a lump on his neck, and a rash that started as one spot on his finger now covered his upper body, hands and feet.

Getting ready for the ambulance ride - so sweet and so sick.  Poor little guy.

We weren't sure what was ahead so before we started the trip, Nate and I prayed together, asking the Lord to continue to protect Walter, provide safe travel, put wise and loving doctors, nurses and paramedics in out path, and that He would supply us with His peace.



 

I wasn't sure that he would remember the ambulance ride, so I took a few pictures for him.  Nate followed in our car and met up with Grandma L and Mimi Erin to finish the drive to Children's in St. Paul.  Walter and I arrived at the hospital around 1:30 a.m..

 

It's all a blur, but we ended up in a short stay room at some point in the early morning hours.  It was nice to have Grandma and Mimi with us.  We really liked the Infectious Disease doctor who saw Walter.  He was pretty sure it was Kawasaki again and it was eventually decided that W should start the IVIG treatment on Sunday sometime and wait to start the high aspirin doses until his liver enzyme levels came down.

 

Waiting for the IVIG treatment.

 

Two of his symptoms:

The rash on his back.

Strawberry Tongue

 

In all of these things, we were so thankful to see how God was caring and providing for us:

The Urgent Care doctor was a friend of Nate's dad and very thorough.

Our ER nurse was the mother of one of my former students and went to bat for us.

The ambulance paramedic is married to the son of long time family friends.

The ER doctor knew the infectious disease doctor on call at Children's St. Paul personally, and thought he would provide the best care for Walter.

We had amazing nurses caring for Walter  - every single one of them! 

That's just the beginning of His provision.