T+24: Discharged!

Brushing teeth at home.
(And that's a Nerf gun in Caleb's hand.)
Wow!  Ethan was discharged from the hospital Thursday evening and my head is still spinning.  Yeah, I know, it's been a couple of days.  Sorry for the late update, the boys are keeping us hopping.

I am completely surprised and amazed that we got discharged at T+22. I never expected it. He was discharged at T+28 the first time and I expected this to be much worse. I thought he would end up in ICU at some point and was very worried about GVHD.  In fact this transplant was easier than the first, so far..

A few things that have made the difference.  Even though Ethan was on a reduced toxicity regime for both transplants, I think that this regime was easier on him then the last.  We didn't see nearly as much tissue breakdown or GI tract breakdown as we did with the first.

In addition, this donor unit was larger than the first one. There were more donor cells to get in there and start multiplying. I think that he engrafted faster and started healing sooner as a result.  They drew blood for engraftment levels on Thursday.  Hopefully we'll have some early numbers by Wednesday.

Finally, I can't tell you how relieved I was to hear that GVHD wasn't a real concern with this protocol.  This cord was a 5/6 HLA match.Ethan's first was a 6/6.  I definitely wondered if we'd already wasted our best shot with the first transplant.  And I was afraid that we were due for some significant complications.  Ethan developed acute GVHD during his first, but it hasn't been a problem at all this time.

Ethan is really, really happy to be home.  He's so happy to be home that he will tolerate putting his mask on to go out of the room because he wants to go play around the house.   His energy and mood are really good.  Friday afternoon, he and Caleb went down to the gym and ran around for 20 minutes.  I couldn't believe it.

Medically, Ethan will have clinic check-ins every day or every other day for a while yet.  Some of these will be quick visits where they do a blood draw and to check his blood chemistry and then we go home.  Some will be all day affairs where they'll need to give him blood or platelets or immune globulin. Ethan's immune system is also still very, very weak.  At some point in the next 2 and a half months, it's likely that he'll develop an infection and have to go back inpatient for treatment.  For his first transplant, Ethan did not have to go back in during his first 100 days.  But as they say, past performance is no guarantee of future returns. 

Grandma giving some oral meds.
This is a frequent scene. 
For Sarah, Grandma and I, this is one of our busiest periods.  We've all become home care nurses.  Each day, Ethan receives a total of 23 doses of 8 oral meds. Simply drawing and administering his morning and evening oral meds can take an hour and a half, because if we give him the meds too quickly it will inevitably upset his stomach and he'll trow up--in which case we need to redo any meds he's taken in the last 15 minutes. 

In addition to his oral meds, he receives two night time IVs, a one hour caspofungen (an anti-fungal) and a 12 hour TPN nutrition IV.  Each evening, in addition to drawing his meds, we need to prep his TPN.  Getting the TPN ready consists of injecting 3 different vitamins into the nutrition bag and adding insulin because of his hyperglycemia.  Then we need to do a finger stick and check his blood glucose level both before we start the TPN and four hours into it.  Tomorrow and Sunday we'll add IV doses of GCSF a stimulating factor for white blood cells.

This is the busiest health care period for us.  As his condition stabilizes further, he'll come off of various IV and oral meds.and things will settle into a more manageable routine. 

Friday evening, Caleb and Sarah went to the Mall of
America with Caleb's friend,  Wes, and some
other kids from the house.  This is Caleb driving a semi, one
of the rides, there.
Caleb is certainly happy that we're all back together, too. Caleb's been a champ throughout this.  He asks a few questions about why Ethan does this or that, but I've never heard him complain about Ethan or about how much of our time Ethan takes.  Nonetheless, I think he needs some focused one-on-one parent and kid time. I just think he needs to know that he can be the center of attention, too. Hopefully, in 3-4 weeks, our routine will have settled down some so we can really start to give Caleb more quality time. 

Reflecting on the inpatient period, I will say that I'm very impressed by the BMT program here.  I know I spend a lot of time griping about doctors and nurses. I certainly stand by most of those gripes.  But, looking at the big picture, the team here does a very good job.

Most notably, perhaps, the nurses are very well trained.  It strikes me as a young nursing staff for a BMT ward.  I suspect that's due to the very high number of transplants that they do, it's a very busy place and I suspect there is a higher than average burn out rate.  But even outside of whatever classroom training about transplant care and protocols, nurses here do at least 3-4 months of shadowing experienced nurses.  So they get quite a lot of exposure to different clinical situations.  All of the training shows up in the consistency of care.  Sure, there are some nurses that we like more than others, and there are some who are less competent than average. Overall, though, UMinn's done a great job bringing their nursing staff up to a fairly consistently high level. 

In addition, the child life specialists here are also very good.  In fact, it's difficult to walk into any of the clinic or wards without having that department's child life specialist come and introduce themselves.  We haven't really needed to take advantage of their expertise because Ethan is still too young to grasp explanations of hickman lines and chemotherapy.  (The staff have offered to work with Caleb, but he has said that he doesn't have an interest in hearing more details about Ethan's treatment.). Nonetheless, they check in very frequently and were able to provide some additional toys and ideas for stimulation while Ethan was inpatient. And they've been good sources of ideas for things to do with Caleb.

The social worker we've got is nothing but impressive.  During Ethan's first transplant and follow up, we only saw Ethan's social worker about 3 times, and our conversations with her were brief and generally uninformative.  The social worker that we work with here we see about every other day.  She's been great in helping us navigate things here and in pointing us towards resources   And she's been a very concerned and effective resource in helping us establish better communication with that first doc when we went in and in ensuring that we're comfortable in our interactions with the medical staff.

The doctors and overall BMT expertise here is quite impressive as well. They do so many bone marrow transplants here that they are able to model and study outcomes for any number of different transplant protocols.They've even done studies on the number of days between line dressing changes and the materials to use.  Their expertise in BMT just reinforces my opinion that regional children's hospitals shouldn't try to do so many of bone marrow transplants outside of the established and more common hematology/oncology disorders. It's my impression that the regional centers just don't see enough patients in less common disorders to develop or validate effective protocols and that as a result their success rates will always be lower and their mortality rates are likely to always be higher.  That's nothing against the doctors and staff at regional hospitals at all.  It's just a question of having the numbers and resources to meaningfully study and improve outcomes and success rates.

Well, I'm going to wrap this up, here.  If you've made it this far through my ramblings, you get to enjoy the video below of Ethan and his physical therapists working (playing) while he was inpatient.   The therapists brought Nerf guns for Ethan to play with.  I don't think they knew that Caleb and Ethan have Nerf battles all of the time and that we have quite an impressive armory at the House.  As you can see, we all had a blast.


Erica J. Thiel said…
To cute- as always!

what a great chuckle. Looking good Ethan, big hugs xxx
Wendy B. said…
How wonderful!!! I am at a loss for adequate words....I am so so glad the staff is one of the best....and your video is heartwarming to say the least. Thank you Todd and Ethan for sharing a fun moment with us.
Gordon said…
This is such great news! He sure seems to be having fun in the video and I am impressed with his sign language. God Bless yu all.
One Funny Quote said…
HEHEHE...Best laugh ever:)So intelligent! Ethan obviously got his brains from his mom:)
Anonymous said…
What fun! Hooray for Ethan and family. So thrilled to hear all is going SO well for you all. Keeping good thoughts always. Hoping the daily routine goes as smoothly as possible. Margie
WOW! +24, and discharged - Amazing! Way to go Ethan!
We love the video! Thanks for sharing it with all of us Todd - its wonderful to see and hear Ethan.
Keep up the good work everyone! Looking forward to your next update,
Love The Wighton Family
Rike Family said…
I just got a chance to read your post. So happy to hear that Ethan was able to come home. And I love seeing the videos so we can really see how well he's doing. Violet watched the video with me and asked "Is Ethan coming to my house soon?". :)