We're Home!!

Oh, is that a camera?!? in that case, "ChEEEEzE!

(Boston home, not Albuquerque home, just in case there was any confusion)
This was our longest stay yet. We went into the ER Thursday March 29th and left yesterday evening, April 9th. Starting Friday morning, he was sedated 3 times within 24 hrs. Monday night, without even waiting to recover from a serious surgery, he started his very first round of Chemo. We've written a lot about his surgery & the start of chemo, but we wanted to let you know how the rest of the week went.
Monday night's chemo was 1 drug/toxin that is only a 2 minute infusion and then another one that infuses over 6 hours, so by morning he was done. Tuesday night, at 1 am, he started the next 2 drugs that infuse over 48 and 72 hours. Saturday morning, he was finished with his first round of Chemo! He had done ok through the chemo itself. He had started to get mouth sores (which run through your ENTIRE GI tract; imagine having canker sores the entire way down. Terrible, I know). It seems as if those have kind of gone away? But maybe as his counts get lower, they'll come back. We hope not, though!

Here's an excerpt from Micah's journaling:

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"On Thursday we had Emmett's CSF flow study. This is a nuclear medicine test that verifies whether the spinal fluid flow is good enough to allow intrathecal chemotherapy (if there's a blockage in the spinal column or brain that prevents flow, they won't do intrathecal because all the chemo will stay in one place). The study involves a lumbar puncture to inject a radioactive isotope into his spine which they then take a series of images of over the next day and a half. This procedure begins much like many others - we take Emmett to a new room in the hospital with a suite of equipment and surgical instruments. Then different teams all come in and consult with us and get us to sign a consent form. We always meet with a team of anesthesiologists, nurses/lab techs, and a team of doctors conducting the procedure. Emmett is with us during the whole thing and sees the different teams one by one. Then, after all consults have been given and the forms have been signed (over the course of 30 minutes or so), all the teams come back into the room at once prior to applying the anesthesia.

During this procedure I began to feel especially bad for Emmett. He's gotten to the point where he sees all the teams coming back into the room and starts getting nervous. He knows that the teams aren't there to do something to me....or to do something to Katy. All these scary people wearing masks and smelling like hospital have gathered here for him. To do something to him. And he knows that it might be painful and that he may or may not remember. And it's so sad to stand there as a parent helpless. Watching your crying, terrified child go limp in your arms, realizing that every procedure has its risks, and knowing every time that we may not return to find the same Emmett we left. I expected this would get easier as time went on, but it has only gotten harder...and harder.


When Emmett came to we joined him in the recovery room. It took him longer to recover from this anesthetic than it has from any other sedation that wasn't general. We were probably down there for more than an hour before they cleared us to go back upstairs, but by that time it was only 30 minutes from when they wanted to take his next image, so we just stayed downstairs. His next images we didn't have to sedate him for, we just had to hold his head and body still under the imaging equipment (about an inch above his face with him lying on his back). He cried so much as we held him fast for 10 minutes or so for both images (one with him looking straight up and one with his head turned to the side). He cried and cried and cried. At least this time he wasn't in pain.

The next morning we had to do one more image. Again we had to hold him fast while he cried, but this time Cris' ipad and Winnie the Pooh helped! The good news is that the flow study results showed that he has good flow and is a good candidate for intrathecal chemotherapy, which will more closely target the cells that made their way into his spine."
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It is awful. You really do think it would get easier, but it doesn't. Emmett is recognizing more and more when we get to a procedure room and is fussy & trying to leave before anything even starts. Imagine having to fast all the time, then be knocked out & he's too young to understand, so he never knows if he's going to wake up with staples or stitches somewhere in his body, or what will hurt when he wakes up and where he'll be. It must be so scary for anyone, let alone such a little guy.

Saturday morning when they unhooked him from his last drop of Chemo we cheered! He'd done ok, but a lot of the side effects will still come the week or 2 after. But we were excited to be able to leave the floor. The nurse even unhooked him from regular fluids so we got to carry him around without any attachments. Oh happy day! We took him down to the gardens, and there is a little doorway through the hospital that we discovered that takes you out to another little area with a playground and Emmett's new love-a basketball court! (I think that comes from watching the Young Men play on Saturday mornings this past winter) We brought a little ball & shot some hoops. He enjoyed it.

Easter Sunday was nice. I don't know if it's because it was Sunday or because it was Easter Sunday, but hardly anyone was around besides nurses & CAs. We had some nice family time and a visit from my family & a tasty dinner some friends sent down. But the evening we had all to ourselves, which never happens in a hospital. Everyone imagines so much down time that you're bored to tears, but truthfully, during the week, you're lucky if you go 20 minutes at all without an interruption from a therapist, doctors, checking for vitals, housekeeping, foodservice, more doctors, Child Life to tell you about an activity, more nurses, volunteers asking what they can do for you, etc.... It's all very nice, but it all adds up and at the end of the day, you really have had no down time at all. So Sunday evening was especially nice, as I said. We were happy to have some quiet time to ourselves. A 12 year old on the floor is also a night owl & he had gotten TONS of candy plus a nerf gun for Easter, or maybe just for being in the hospital. He was really out going and happy to share & that made Emmett's night when he let him shoot the nerf gun.

(We did have some fun time over the weekend. Lots of people say Emmett looks just like Micah, but if that wasn't the case, his love for popcorn would also give it away!)

Who can resist popcorn and a movie?!

Sunday afternoon, Emmett did throw up...a lot... (the only time so far) which was really sad, but we think it was more because we tried to feed him too much & then ran him around too much for his first time with an appetite again. We've learned quickly. No problems again, but his appetite is still not great. He was also off the antinausea meds, so we started those again the rest of the day.

Monday he had a lumbar puncture and his first intrathecal chemo. I took him into the procedure room that time and they asked me to undress him (mostly so his clothes wouldn't get stained from the washdown. He cried as I took clothes off of him. The nurse put them up on a shelf and he just cried & reached for them. Poor Emmett just wanted his comfort, his privacy, a little normalcy. This anesthetic was weird-just like they'd told us-he'd "fall asleep" with his eyes open. Even harder to put him down on the bed & leave him there. Later that afternoon, they gave him his week 2 dose of chemo, which was again just a 2 minute infusion. Monday night they sent us home with TWELVE prescriptions. Emmett slept 12 hours last night, which I have never seen him do. He's been a lot more sleepy and clingy today, but he's had some happy spurts and doesn't seem to be in pain, which is good. Hopefully we can keep him clean and healthy enough that we'll be able to be home a few days before having to head back from a fever!

Despite all the emotions and pain for Emmett from surgery & side effects of chemo, you naturalists can all condemn us but antinausea meds & a little morphine go a LONG way! It was great to see some of his real personality come out & to see him happy and playing! Here are a few videos for all of you from this week.

Emmett's love for Purell will definitely help with staying home as long as possible!

We'll title this one "Bribery for a Bath" - my brother Cris has one of these fancy gadgets & Emmett took about 2 seconds to figure out how to work it & become quite in love with it. He dropped it off over the weekend so Emmett could play with it in the hospital. I stuck it in Emmett's PJ drawer & when I was giving Emmett a bath, he suddenly got all excited & crazy as I was getting out his PJs & I realized he discovered the ipad's hiding place ;) Then he made up his own sign for it & started saying it! He can talk when he is motivated!!!
And another funny ipad story is yesterday (Monday the 9th), the Speech Pathologist came in. She had told us about some good apps for speech therapy and was showing them to Emmett. She'd let him play for a minute, then take it away & try to have him ask/communicate for it back or to ask for which game he wanted to play. After about 5 minutes, all of a sudden Emmett turns and points like crazy at his drawer. I started laughing (and opened to drawer which currently didn't have the ipad in it anyway) because to me he was saying "Wait a minute....why on earth am I working so hard for your ipad when I've got my own right over here and can do whatever I want on it!!!"



When he was on this week's chemo, he could leave his room, but not the floor (without a nurse, and nurses don't really have time to roam the hospital, so basically you are stuck on the floor). He has quickly come to LOVE the elevators!! Forget the play room (which sadly is only open 9-5 M-W so pretty much there's nothing to do on nights and weekends, plus the playroom is small. UNMH definitely has probably the best Child Life room around. We miss you dearly and am sorry we took you for granted!!!!); this kid will go in there for about 2 minutes, and then he's done and he just wants to press buttons on the elevators & then ride them. When he couldn't leave the floor, he just presses the button. There are 2 halls with elevators near us & they each have 5 elevators. He loves to call the elevator, then guess which door will open up. He looks all around and when he hears it ding, he gets all excited and points to the opening door!

Emmett started warming up to nurses after a week. He'd play catch/throw lion at his nurses & play with them. He'd just said Hi to his nurse, Erin, then she went back behind the nurses station, and we laughed as we watched Emmett follow, ready to throw lion & fully expecting it to be retrieved.

Walking! His walking is on and off, but he walked a bit over the weekend! YAY!!!

THANKS TO ALL OF YOU FOR YOUR CONTINUED INTEREST,
GENEROSITY, LOVE, FAITH IN A MIRACLE, PRAYERS & PATIENCE WITH
LAG TIME BETWEEN REALITY & BLOG UPDATES!
WE LOVE YOU ALL, TOO!