Day Four at UM

Last night we ended our day with a "car ride" to the 12th floor to look at the lights of the city.  We had passed these cars during our walks in the halls and talked to Eila about how much she liked them when she stayed at the hospital when she was younger.

From July/Aug2015

This trip was also a very important milestone because Eila tooted!  She was excited to tell the nurse when we returned to her room, and it meant that the doctors gave her the green light to start eating clear liquids today.  So she started her day with jello and had soup broth for lunch.

From July/Aug2015

It's always funny going through this phase of recovery -- Eila thinks of clear liquids as snack food, and is already talking about having mac'n'cheese and pizza.  Fingers crossed that tomorrow will bring real food.

She has also finally ventured into the activity room today.  She has really enjoyed painting and it's been really nice to have some thing other than walks to break up the day (and it also includes a walk).

From July/Aug2015

From July/Aug2015

So she's made progress in one area but they are still watching her drainage tube.  Today it has changed from an orangish-pinkish fluid to a deeper redish fluid.  The doctors are concerned about this change and are continuing to measure the output.  It has decreased since her surgery but stayed about constant for the last day.

Day Three at UM

This morning started with more good news for Eila ... she can have gum and lollipops!!  So I went out first thing this morning for tea (for me) and treats for Eila.

From July/Aug2015

Any one who knows Eila, knows that she likes gum :)  And apparently there's some reports that chewing gum may help get your stomach working again, so fingers crossed that tomorrow could bring more good news.

From July/Aug2015

But in case the gum isn't the magic ticket to eating again, we are continuing to encourage (i.e. force) Eila to walk more.  She's already gone on 2 longer walks around the floor and 1 short walk to the bathroom.  I think our goal is to double this by the end of the day.  Getting in and out of bed is still hard, but she's really working at it.  And we are doing our best to manage her pain.



Now, as best as we understand as Eila's incision continues to heal, we are waiting for Eila to toot so they know her intestines have settled back into place -- then she can eat.  We are also waiting for the drainage tube they placed in her side to slow down (but we finally have a bag on it that isn't leaking so that's been helpful).  The doctors tested a sample of that fluid yesterday and it showed there's a little urine in it, probably leaking because of going deeper into her kidney to remove all the tumor tissue.  They will continue to watch this leak for the next few days; if it still has urine in it, she will need an additional procedure to help redirect the urine through her bladder and give her kidney a chance to heal that spot.

In the mean time, we are thankful for small improvements.  And we'll continue to watch movies, go for walks, and play games.

From July/Aug2015

From July/Aug2015

Day Two at UM

When the surgery team did their morning rounds, we found out that Eila would get her catheter out.  This was both good and bad news to Eila.  Who would want a catheter, right, so that was the good news.  But that would mean that she'll need to start getting out of bed to use the bathroom, she wasn't excited about this.  She's made a lot of progress with her walking today, getting out of bed is the hardest part, and we are so very proud of her.

Papa and Alecia were back this morning for more grandparent time with Eila.

From July/Aug2015

She got the biggest "little pony" imaginable from friends back in Oregon.

From July/Aug2015

She did a few fun craft projects and walked around the oncology floor on a beenie baby hunt.

From July/Aug2015

From July/Aug2015

Although there have still been tears, we've also seen smiles today so things are getting better.  We'll keep working on moving and walking -- we've already planned our evening walk to a giant window that overlooks the city -- so hopefully she'll make it to the next phase soon.  She's really hoping to get the surgeons to agree to let her chew gum tomorrow!

Day One at UM

Today has been a day of making some progress, although not really by her choice.  This morning Eila got out of bed to sit with me and watch Big Hero 6.

From July/Aug2015

Then she was moved from the PICU to a new room on the oncology floor.  Papa and Alecia came to visit and cheer her on as she is trying to do more today (and by trying I mean she is being forced to move).

From July/Aug2015

She was able to sit on the edge of the bed and a huge, sweet Great Dane therapy dog came by for her to pet.

From July/Aug2015

And now she has also stood and taken a few steps!  All of this has happened through lots of tears and some yelling, but she did it ...  We all know that Eila isn't ever eager to try things that aren't her idea, so it hasn't been easy.  But we are all hoping that she'll begin to realize that she can do these things and that the pain won't last forever.

Out of surgery

Eila's out of surgery and we are with her again. The surgery lasted a little more than 4 hours, but everything went well. We met with Dr. Ehrlich and found out that she will be moved to PICU for a while. When he removed the main tumor and checked the margins, he had to go back and take a little more from one side and go a little deeper. This meant that he got into a urine collection vessel and it had to be sown-over. This decreased her urine output because a leak was created at that point. There is a drain in the area (a similar thing happened in her previous partial right nephrectomy) and they will be watching her output closely for the next few days. Unfortunately her blood counts were also a little low so she got a transfusion during surgery too. Even with all this, he felt the surgery went well had she still has about 80-85% of the remaining kidney (that started around 70% of a whole kidney).

From July/Aug2015

She is sleeping again now, luckily. When we first saw her, she scrunched up her face and said "it hurts where my cut is" - broke our hearts! The nurse immediately gave her more pain meds. She told us that "this is why she wasn't ready for surgery" and we told her it would slowly get better and that we would do all we could to help it feel better (like help her tell the nurses when it hurts). Hopefully we'll be able to keep a close eye on her pain in the PICU.

Surgery's started

Eila checked in this morning at 6:30 for her second right partial nephrectomy. After we talked to several doctors and nurses, she was wheeled off to the operating room in a wagon (her request) an hour later.

From July/Aug2015

By 8:36 her procedure was underway and she is doing well. Joel & I are hanging out in the main lobby, where food and drinks are allowed, with our hospital pager awaiting further updates. We were told to expect about a 3 hour procedure but that it could change depending on how her scar tissue is from her previous surgery on her right kidney.

From July/Aug2015

Thank you all for your prayers and messages of support. We are so very blessed to have such a wonderful community surrounding and helping us through this. It's always nice to know how much Eila is loved.

Pre-surgery fun

Today was our one day to have fun in Ann Arbor before Eila's tumor removal surgery tomorrow.  The day started with a visit to the hospital to meet her new team of doctors.  What I thought would be a quick visit turned into 3 hours, but we got her all set for tomorrow.

From July/Aug2015

Then we set off to do whatever Eila wanted to do ... and the first thing she picked was a petting farm.  She got to hold bunnies and ducks.

From July/Aug2015

From July/Aug2015

She feed carrots to sheep, llamas, goats, alpaca, and pigs.

From July/Aug2015

From July/Aug2015

From July/Aug2015

Next she had hoped to find a bounce place but instead we found a climbing gym, and our brave little 5-year-old climbed all the way to the ceiling (after only a few practice climbs).

 

From July/Aug2015

 

From July/Aug2015

She wanted spaghetti for dinner (her last meal for some unknown amount of time), and we completed the day with a bubble bath.  Next stop, surgery ...