T-5: Routine

The picture at the left pretty much sums it up. Ethan is handling chemotherapy really well. He's got enough energy to want to leave the room to go play and he can't understand why he's not allowed to leave the room.


Ethan's energy continues to surprise me. The fevers he experienced with Campath have passed now that he's moved on to the next chemo drug, Clofarabine.

Surprisingly, the nausea and vomiting we expected are largely absent, though it certainly doesn't hurt that he's on an IV anti-nausea med 24 hours a day and gets a second anti-nausea med twice a day by mouth. The upshot is that he's still eating and his appetite is pretty good. This is a good thing.

He did have some high blood pressures a couple of days ago. But they treated him with a fast acting med and it came down okay. I don't think it's recurred.

We've settled into a decent routine here. Ethan has blood drawn at 4a for the days labs. (Fortunately, the set up they've got here allows them to draw blood without unhooking his IV, so they don't have to fiddle with his lines and wake him up.) I'm usually up by 7 or so, then I wake Ethan up by 8 or 830 depending on how he slept overnight. The nursing assistants come in and we get his morning vitals and the nurse comes in and gives us his four morning oral meds.

Between 8 and 9 we'll have breakfast and some playtime, usually with matchbox cars, maybe with Mr. Potato Head or some blocks. His red blood cells are down, so while he does have enough energy to play, he doesn't have much of a reserve. That means that we try to break up playtime into two to three or four 15-20 minute chunks each day. They hook up his current chemo med at 9a and that runs for about two hours. We usually sit together on the bed and watch a movie on the iPad. After chemo, we may color or play for a bit before napping from 12-2 or 1-3 or so. Usually the doctors will come by around 12:30 or we talk for a bit about Ethan's condition.

After his sponge bath
I usually try to catch a quick shower while Ethan is sleeping. Sometimes that works and I get to feel nice and clean. Other times it doesn't and I just end up being funky. For better or worse, it looks like I'll have to stop shaving while Ethan is in. The only sink in the room is right next to his bed. I don't think I can get in there and shave without waking him up. There are a million things in here that will wake him up, from beeping machines to room cleaners, to loud talkers. I'm not going to be one million and one.

(While we're on the subject, if you wake up a sleeping kid, why do you talk to him and tell him to go back to sleep? Why would you want the kid to try to focus on your voice enough to understand you? Quiet singing I can understand, it's melodic. But if my kid wakes up, don't talk to him. What do you want him to do, answer you? Really, does that work for anyone? Does it occur to you that you're making it worse? If you need to do something, then how about, quiet indeterminate noises and/or a comforting hand on the back. (Sorry. Had to get that off my chest.))

Playing hide and seek with the playmat.
After nap time, we have lunch and then Ethan has a sponge bath. Then we play some more. Yesterday, we negotiated with the nurses to unhook his IV lines for a while. I asked one of the Care Partner volunteers to come in for a short time so that Ethan would have two people to play with him. Unfortunately, while Ethan will play with his nurses, he had absolutely no interest in playing with a complete stranger.

All of this will change, of course, but I'll take this for as long as I can get it.

Yesterday, Ethan got really bummed out that he couldn't leave the room. So Sarah and Caleb came over yesterday evening and we had some family playtime. It was a huge boost both for Ethan and for me.

In the evening we have dinner. Then Ethan has his 8p oral meds and vitals and we start to settle down. With any luck he's asleep by 9 at which point I can go lay down and listen to some music or read before going to sleep at 10 or 11.

And if we're really lucky, then Ethan won't wake up for his 12a or 4a vitals or for any of the overnight diaper changes.

If you've got ideas and suggestions about games that a 2 1/2 year old and I can play in a little, teeny hospital room, while hooked up to an IV pole, then please let me know. I'm all ears. Please don't send us anything more than ideas. If folks send a bunch of toys, by the time they got here, he won't have the energy he has now.

Going on in the background...
If you've ever worked with us on or talked to us about Ethan's care, or if you've followed his blog for any length of time, you know that effective communication with Ethan's doctors is very important to us. This is always one of the first things I bring up when meeting new providers. And it was something I stressed with the staff here when we went through the workup process.

So, perhaps you can imagine my surprise when the attending physician on the ward came in once a day for the first three days and said, "He's doing fine." and walked out.

On Monday, I had the first of a number of conversations with her about communication and about the fact that Sarah and I want more information. She seemed honestly surprised. She said, he's doing well, everything is in line with the protocol, what more do you want me to tell you? Well gee, my kid is hooked up to 8 IV meds and gets another 4 orally. Do you think there's something specific that you might be able to tell me that would inform my understanding of his condition today and his progress overall.


To say that the attending wasn't empathetic, doesn't begin to cut it. Not only was she largely dismissive or having any information that we may want or need she indirectly criticized me for having to ask the questions in the first place, implying that I hadn't done my homework during the workup phase about his protocol and what to expect.

I outlined some of the things that I'd like to check in on daily and she said I should come to "Family Centered Rounds" in the morning.

(Here's the thing about Family Centered Rounds, it sounds great. It sounds like the family is being included in all aspects of the medical discussion. But really rounds are rounds, they are for the doctors, fellows, residents, med students. It's a medical discussion among medical professionals. Occasionally, the family is able to add some information to the discussion so that the doctors have the most up to date information about the kid. Family Centered Rounds are worthwhile, but they don't replace a doctor-parent conversation about the child. It's a completely different kind of conversation. Both are worthwhile, but neither can be omitted.)

She seemed really at a loss to understand what more she could tell me on a day to day basis about Ethan's condition aside from something like "He's in the parameters defined by the protocol."

What I want is to know what they're tracking and what the threshold for intervention is? When additional meds are introduced, as with his new blood pressure medication, I want to know how effective are they?

I was talking with one of the other parents on the ward. We know her from RMH and she's got a lot of experience with the BMT staff here. She agreed that getting information from the doctors is extremely difficult. She said, it's almost as if they think this is all too complicated for us to understand in any detail, as if all of the parents here haven't been fighting their child's condition for some period of time. . Quite frankly, that's the impression that I've gotten as well.

I even asked our BMT social worker to come by so that we could discuss this. I wanted to make sure that my expectations weren't out in left field and wanted to get any suggestions that she might have about how I could approach this.

In my conversation with her, I expressed my concern that if we didn't establish better communication now that it would be much more difficult to do so when Ethan's condition is more critical. I also explained that it is also a trust issue. These folks might be the best in the world, but that doesn't mean I'm just going to "turn over the keys" and step back. Ethan is my kid, and I don't trust anyone enough to do that. And finally, if Sarah and I should ever find ourselves in a situation where we need to consider ending life support, ever piece of information we know about Ethan will factor into that decision, that includes baseline information that we gather now and a daily understanding of how we got from here to there.

Fortunately, that attending ended her two week rotation on the Ward on Wednesday. Yesterday, Dr. Orchard started his rotation. Dr. Orchard is the head of the metabolic disorder transplant program. While there are a number of other disorders transplanted on the ward, Dr. Orchard is the head of the program for the class of diseases that Ethan has. Dr. Orchard is also very empathetic, very giving of his time and almost always willing to take the time to talk things through with families. Dr. Orchard's very well known among Hurler's families and many families will contact him with questions which he will graciously answer even if that kid is being treated elsewhere.

We had a good discussion about Ethan's course of treatment and his progress so far. I outlined the areas that Sarah and I wanted to make sure we went over every day and he seemed to get it. It was a big change from the first doctor and a big relief.

Sarah's taking over this evening and will be on duty through Sunday morning. We've worked it out so that I take Sunday morning through Tuesday evening. Sarah takes Tuesday evening/night so I can get some uninterrupted sleep at the house and then I'm back again Wednesday morning through Friday evening. It works out really well for me because it means I'm back at the house every third night for a good night's sleep. And it's frequent enough that Sarah can spend some time with Ethan and keep up with his progress first hand.

Gotta run, time for lunch. As always, thanks for being here for us. It means a lot.

Comments

Anonymous said…
Does Ethan like stickers? Viv (who is 3) can spend a good 45 minutes sticking and unsticking stickers to paper and old envelopes. (Envelopes seem to work best if you don't have much of a flat surface.)

Thanks for the update - we're thinking a lot about Ethan these days. Oh, and playdoh. Playdoh suddenly rocks.

-Sarah Stevenson
Anonymous said…
Don't forget music, music, music! Can you play some Wee Sing CDs or other preschool-friendly songs with high voices that little ones like and adults find totally irritating? They will not get tired of hearing the same CD four times a day...nursery rhymes and Hokey Pokey and stuff like that. Then lullabies at night. :)

Keep up the good fight and the dialogue with your docs! If the information is what you need and helps you get through, they should understand and honor that.

Best, Margie
Erica J. Thiel said…
latch puzzle (has doors, sliding locks, and pieces that are all stuck to the board but come apart (ie cannot be lost but VERY cool) - if you want a picture will get one of my nephews it's hard to explain but a very interesting, easy and captivating toy.. I know I did a terrible job trying to describethis..

magnifying glass - what kid doesnt like to see things magnified? target or walmart $1-2.

candyland, cherry game, elephun (catch butterflies out of elephatn trunk w/butterfly nets - actually quite fun)

Water coloring book - the ones where doesnt require paint just water and a paintbrush to turn the pages colors... couple dollars..little mess..

kids computer - target around $10 plays music, makes sounds w/various buttons, and lightweight my nephew has had one of this since age 1 1/2 and at 4 1/2 still carts it everywhere.. hat kid doesnt love computers. :)

marble tower (again if you want a pic let me know) - you can construct it to various sizes and shapes w/many different obstacles, slides, etc that you place at whatever points you want and then you roll marbles down starting at the top.. very light weight and easy to put together. Toys r us or target.

zhu-zhu pet I know odd perhaps but my nephew loves this and thinks it is awesome.

Any kind of castle type thing w/doors/windows/moveable parts... bat cage for instance at Target..

Just some ideas my own nephew loves, will keep brainstorming.

Erica
www.rarelydefined.blogspot.com
After reading todays blog, first I have to tell you that You and Sarah are amazing and Ethan is so very lucky to have you both in his corner fighting for him. You would be surprised at how many parents aren't as active in knowing what is going on as you guys are. Your truly amazing.

It sounds like things are going pretty smoothly for the most part with Ethan and I am sure that all the prayers being sent up daily for him are being heard and applied. :)

Andrew used to love the big mega blocks when he was 2. And believe it or not he also liked to play with the colored dominoes matching colors or dots.

What about a memory game where he turns over the cards and tries to make a match?

Coloring book and crayons are good, or a glue stick and things cut from a magazine to glue onto paper.

Not sure what supplies you are able to get to make stuff, but homemade flubber like they have at OMSI is really fun. Here is the recipe:

1 1/4 cup warm water
1 cup white glue (like Elmer's)
2 Tablespoons of Borax (by the laundry soap at store)
Food coloring (optional)

1) Make a mixture of 3/4 Cup of the water and the glue (as well as a few drops of food coloring if you like)(any color).

2) Make a second mixture of Borax in the rest of the water (1/2 cup).

3) Put the two mixtures together, preferably in a sealable plastic bag. Knead for a few minutes and presto.

I made some with the kids and it stayed good for 4-5 months in a sealed Glad container. My kids love to play with it.

Hugs to you all,
Cheryl
Todd Waddell said…
Thanks to you all for your great ideas. I think I'm going to print them out and hang them up in the room for when we "blank". I may also post the ideas we've received on the MPS forum for the benefit of other parents who find themselves in this situation.

Sarah, thanks for reminding us about the play doh. Ethan loves play doh, My Sarah brought some over this evening.

Margie, thanks for music suggestion. I've been looking for an excuse to take my speakers over. If Ethan doesn't want to listen to music, I sure will!!

Erica, all great ideas. Fortunately, UMinn has a good Child Life dept and they can hook us up with some of that stuff!
amy holland said…
Todd,
For desperate moments, here are some super simple things to do.
1)Play catch with a wash cloth-they are easier to catch than a ball. Practice juggling by tossing two wash cloths in the air.
2)Use a fitted crib sheet for parachute play. You hold 2 corners and let E hold the other two. Count to three as you raise it up and down. let go on the count of three and try to clap 3 times before it lands on you!
3)hide the ------ Use something small, but brightly colored.(fun with a post it note, too) One person leaves the room or hides his eyes while the other hides the object. It must be in plain sight, not under a blanket or in a drawer or the game gets annoying.
4)trash can wad ball-use wadded up pieces of paper or paper towels. stand behind a certain point and take turns throwing into the can.

Our family still plays these today in exam rooms and waiting rooms! You and Sarah are doing a great job. You are all in my prayers,
Amy
Anonymous said…
Hi Todd
I'm still getting over the fact that Ethan is only 2.5 years old. What a trooper. And I wish I had some of these ideas when I had Joseph in hospital last year. You've already mentioned all of the things I did with him. Maybe some bubble blowing? Always good for a laugh...
Take care, Barb
PeakDogs said…
I have a great set of cards, "Bright Ideas for Mommy & Me." There are different sets for different ages, 52 cards in each deck. I've got the 2 yo deck in front of me. You could look for them locally or if you'd like, I could scan them for you to a pdf; I've got one of those fast document scanners. They're really creative ideas using found objects like shoe boxes or dresser drawers. I love them. I think the card format is really handy when you're stuck.

Also check out art ideas from any of Mary Ann Kohl's many books. And a blog called the Artful Parent. Fun stuff. A lot of it is for older but she does toddlers too, e.g. http://bit.ly/iiKmCK.

-Jennifer
Kelly Waddell said…
I don't blame you for wanting to be as informed as you possibly can be. We were the same way, even if we did't understand absolutely everything. We tried, and most of Caleb's doctors were gracious enough to try to put it in a language that we could understand.
I'm trying to think up things that we did with Caleb, way back when, but I think you've pretty much done them all. Until he went in for transplant, he really did not watch a lot of tv, but that and music became our best friends. Along with blocks and toys that were easily sterilized. Thankfully there is more technology out today!
Anonymous said…
Wow, even more ideas...thanks everyone!

Kelly--thanks for reminding us about sterilizing the toys--we often forget since it seems it's just Ethan and us playing with them.
~Sarah
Lillian said…
I'm glad to hear that your play time continues! What a strong family you have! As for play time suggestions, puppets have always been a big hit with my the kids in my family. My young nieces really like to play with the camera on the laptop and record themselves making faces and singing songs too.