Sunday, August 22, 2010

Day 60!

I can't even believe it's been 60 days since Daylon's transplant! Things have really been picking up lately. I've been such a horrible blogger the past couple days for good reason! It has been out of control crazy!! I don't have a huge ton of time and unfortunately I wasted most of it trying to figure out the new upgraded system blogger has. Alright, enough complaining! Let's get down to the nitty gritty!
Thursday was a HUGE DAY! In the wee early morning, dialysis started and because he didn't have dialysis on Wednesday (this is my belief) he actually did okay. They got off what they needed without leaving me with a sick, dried out baby. My mom and Brian switched out at lunch time, right as dialysis was ending. Brian and Jess (my sister-in-law) took the other kids to Lake Calhoun for swimming and fun in the sun, while my mom and I (and Rachel, our nurse) helped Daylon relearn a few things. :)
First Time sitting in a big boy chair...again!

First Wagon Ride out of his room!!
he almost didn't fit!
Grandma, Daylon and Rachel

Dropping by to see his girlfriend...her Daddy is her go to guy. He'll pass on Daylon's salutations :)
LOOK!!! He's grasping and playing with a toy!!
the doctors idea of his neurological well being is becoming less and less of a reality!!

Daylon gets physical therapy or occupational therapy everyday for 20 minutes. In the meantime, Brian and I have been working with him constantly trying to reintroduce him to life, his surroundings and rebuilding muscle and motor skills. Because of the stroke, Daylon is only able to look off to his you may have noticed. :)
Daddy and Daylon working on some homemade therapy:
Brian took my mom to the airport at 9am. My mom got here July 27th and has worked so hard to make sure the other four kids were tended to so Brian and I could be up at the hospital together during such a hard time in Daylon's life. We're so very grateful that she was able to come...and that my dad was willing to give her up for 3 1/2 weeks!! :) While he was gone, Daylon's nurse that day called and said they were moving him back to 5D!! Like, RIGHT NOW! Holy smokes! I was so floored! A bit shocked too. The hope was to move him this weekend, but we all know how that goes! Well, they were short on beds on 5C and since he was moving over in a day or two anyway, they decided to move him out early! He still needs pretty much constant care, but I'm loving all the space in these rooms! It's a lot less confusing when there's only one doctor giving orders. While I ran to the hospital, Brian and the kids went to the Mall of America with Jess, and then dropped her off at the airport at 2pm. Thank you for coming Jess! The kids had a blast!
Daylon's soft spot is now a deep, bony crater
Friday was not the best day however, in regards to dialysis. The dialysis nurse got there right as he was moving over and between the chaos of the two, there was an accident. A blanket was rolled up under his mattress, getting him off his back a touch, and was left on for the weight. The nephrologist (sp.?)took a look at his weight and upped his fluid loss goal. The goal is to keep him around 13.5 and he went down to 13.1. It probably doesn't seem like much, but it is. Not to mention he peed like 400cc also on Friday. They actually had to give him straight fluid to try to correct the situation. His heart rate got to 200, his blood pressure was going crazy, he got a high fever, started shaking, gasping, and throwing up.  Some of the symptoms were because he was too dry and others were because it had pulled so much of his medicine off his was going through serious withdrawls. I personally, hated it, so I can only imagine what Daylon thought of it.

For about 9 hours we got to be next door neighbors with the Pops! Elle's and Daylon's JEB cove of the BMT unit! Daylon's door is on the left and Elle's on the right.

We ended up moving one more time late that night because Daylon's supply cart couldn't fit in the room. I love, love, love all this space!!
Every EB parent's dream! 10 days worth of supplies at my finger tips!
Today was pretty much the same thing, another day. He is sleeping so ridiculously little, I'm going nuts! He threw up for the last time at around 8am this morning, but has been gaggy the rest of the day. Brian came at noon so I could spend a little time with the rest of the kids and shower. They drugged Daylon during dialysis, so it was fairly uneventful for Brian. Shockingly, they used NO dopimine during they entire thing! His heart rate never fully recovered from Friday's run, so his pulse to start was in the 140s at the start.
I took the kids to Target while I had them. We needed shampoo and I needed to get out and be among humans. :) The trip it was a fiasco and definitely fixed my urge to take on the day. I know this is a longer post, but you need to hear about this! :) I bribed the kids to stay calm and not kill each other while I showered. An icee was on the line, so they were home. To catch you up: I refuse to be the parent who stands in Target with the screaming wild child, pretending that they are childless. On the other hand, I won't be the mom patiently calling after and chasing her toddler whose running through the clothing racks either. I hate having attention drawn to myself, so if my kids misbehave, I empty my cart (sorry shelf stockers! Job stability, right? :) ) and go home. I have a bunch of small kids, so you have to be strict to stay in control (I'm learning). Alright, so, my kids get their drinks and we're strolling along. I decided I also wanted to try to find some things to use for stimulating Daylon and bringing him back to reality. I had no idea what I was looking for, just looking. Of course, the kids start reaching for items as we pass them; the icees ran low and the slurping began; the twins started a competition of who was a better singer and when I asked that they quit arguing they decided that they could get their point across to each other by demonstrating their the same time...singing different songs; I'm almost certain I had an actual anxiety attack when I saw that the Summer clothes were replaced with Winter clothes and the jackets they had for sale were the type of jackets that you buy back home in a sporting goods store when you want to climb Mt. Everest; As we were passing the electronics section, Keira paused for a good 30 seconds in front of a tv showing a Justin Bieber (or whatever his name know, that 14 year old with a comb-over) music video; Our cashier had a hair color somewhere in between hot orange and red and Sadie needed to know, "why's that girl's hair that weird red?" repeatedly and after I convinced her in a very stern whisper that if she heard her she might make her cry (I know, I'm pathetic), Caleb stared at her for probably a full minute before asking her, "Why do you have to look like that?"; there was also an escapade in the family restroom where in the middle of a crying (Caleb wanted to be the first to pee) and peeing simultaneously, Caleb peed straight up, wetting the ceiling...and then there was cleaning up the girls after they were caught in the freak potty storm. On the way out to the car, this time crying about it being a sunny day (no joke. He's normally not such a baby) Caleb told me he was ready for Daddy to watch him now (me too!) and he would never, ever sleep again (he was out before we left the parking lot). Should I have walked out of the store? Absolutely, but I needed to go out to save my sanity. The irony is, going out almost made me lose it! :) You gotta laugh about life,right!
When I returned Daylon was back on the nasal canula (he had be off since 1am), and as sick as ever. Dialysis had just finished. Since then, his fever has been up to 103.7F and his pulse is 200. It's 1:30am and he is starting to get better.
One last bit of good news!
Daylon started looking straight ahead and to his right!

We moved his mobile to the right of his bed and started standing more on his right to help him have the desire to work on looking straight. He's such a hard worker! And they doubted it could be done! Another miracle! Hard work and prayers. It'll do it every time!
Sweet dreams!

the kids came to visit Daylon and bring him the panda they made him as a 'Welcome back to 5D' gift. They were all so excited to see him awake!! Daylon definitely recognized them too! He went crazy and was sooo verbal!


Linda said...

Love, love, love this update. Daylon looks so good. Glad that he is out of ICU and back in a roomy room.
Sorry that the trip to Target was such a laugh riot, but you survived. You are so strong. I really don't know how you do it.
Will continue to pray for your precious son. The doctors don't really have a clue, do they?? Take care and keep the Faith. God Bless. Love Leah's Nana

jeffrey said...

oh my goodness your trip to Target! WOW! I don't even know what to say, but it seems you handled it fantastically! Another example of how amazing you are. One day you will look back on it and laugh and laugh. It will be a great story for Caleb's wife that is for sure. :)
YAY! Daylon is back in 5D! I actually read that on Elle's blog. :)

Anonymous said...

It is so exciting to hear about Daylon looking in another direction! Go Baby D!!!

sharon kaye said...

I not only pray for Daylon but also for his doctors that they will know what is the best treatment for him.

I was laughing out loud as I read about your trip to Target. All I can say is that someday your children will be grown and have their own children. They will tell you about the horrible things their children are doing. And, you get to sit back and smile and say, "Now you know what I went through." It is major payback time then.


Happy you scored the room with all that SPACE!! And Daylon is so good at surprising everyone(even doctors) ! That is such wonderful news, he is moving his eyes! It can be DONE! I am so sorry to here about the accident with the blanket and dialysis. Hate these accidents...they set him back and I hate to see him go through more than he already has. Hope he recovers from that soon soon!! I loved the pictures of his wagon ride:) I am sure he really ENJOYS that.
Oh got to love the crazy trips outside the house. Peeing on the ceiling is funny....all though I am sure it wasnt funny at the time. Kids are just so honest ha ha ... if they think your hair color is weird they will tell you. My daughter did the same thing, but it was to a guy who had purple hair at church !!
I know how it feels loosing it when going out...we all have those days. At least you got to be around other humans :)
You guys were so lucky to have your mom and Jess come to help I am sure you will miss them! Have a great Sunday, thinking of you guys :)

Jess Edling said...

Oh Jenn. That Target story cracks me up! Caleb is a weird pee-er this week, Remember what he did to me at Wal-Mart? Heheheee. So glad to hear that Daylon has improved even more since I left on Friday!

Thank you, thank you, thank you for letting me come out for a week. I don't know how much good I was able to do while I was there, but I feel blessed to have been part of the experience and to provide what help I could. I love you guys so much.

Pati @ A Crafty Escape said...

Love this update, so happy for you guys that your little man is doing so well. I cried when I read the part about him getting excited to see his sibblings... that is beyond cute. Bless him!

Mom to Many said...

Wow, your Target tale so reminds me of my family when my earlier kids were little. (Holy cow, I'm almost 40!)
Walking out was my way of handling it too, but sometimes you really need to shop. My sympathies.
I am so glad to see Daylon looking another direction. Good job baby! Keep trying.

There has been a lot going on!
I am glad that you are working to keep your sanity.

Hang in there!

Bella's Blessings said...

LOL - I've had "events" with Ali where I wonder if I'm getting relief or more stress! Totally understood. Sooo glad you guys are over on 5D again. We look forward to getting over there by my birthday (the 31st)... that's our new goal. Hope dialysis starts to become less invasive to Daylon's equilibrium.

The McLaughlins said...

I love reading good news about Daylon. I'm sorry to hear about the mishap with Dialysis. That just makes me so mad. But I'm glad to hear he is making progress with his therapy. That is GREAT! He's gonna show those doctors. Daylon is so strong. He's an inspiration to me and my family. Lots of prayers for his continued improvement. We are gonna make a miracle happen!

Haha...and your story about Target is priceless. You had me cracking up. I only have 2 little ones (a 2 year old and 7 month old) and going anywhere is an adventure. It takes all my energy just to go grocery shopping.

Take Care,
Amber McLaughlin,CA

Skye is the Limit! said...

That is a beautiful hospital room. I am just jealous.
He looks so much better/happier!!

jardinera linda said...

SO SO SO happy after reading this post!

Anonymous said...

So happy to read this post! Neurologial outcomes, especially in kids, are so hard to predict and the doctors always seem to have a doom and gloom scenerio, sadly.

My friend was in an accident and suffered major head injuries. His mom was first told he would likely progress to brain death. When that didn't happen, the prognosis was he would either be a vegetable or severely disabled. Today he has graduated from university, has a good job, and is able to walk, talk, and do all the things the doctors said he wouldn't be able to do. He did have effects from his accident, such as short-term memory problems, but he's still a walking miracle!

Heidi said...

LOL.. I'm sorry for laughing, but you will look back and love it! Makes me remember the stunts my kids would pull while shopping. Actually getting Targets doors closed, while they hunted down my toddler, who promptly went to the jewelry counter and declared her mommy lost!
On another note, Daylon's eye tracking is the same as my son's. He had a left sided gaze, also. I would notice when I was holding him he would watch the colors of the tv, so as an experiment, I started rolling his head the other direction, and unknowingly was providing him the 'therapy' he needed to start tracking to the right. It was very gradual, but it worked! We also had a black/white/red Sassy brand baby toy, that for some reason was like a magnet for his eyes. (found at Target) The closest thing I could find was this
Every part of my being, tells me Daylon will be ok!

Anonymous said...

YAY for good days! So much improvement!
Continuing to pray for Daylon and Bella daily.

A momma in TX

Gilda said...

Wow!!!!your a brave woman, glad you were able to get out and about. Keeping you and Daylon in our prayers.

Lisa said...

Bless your heart - that trip to Target must have been exhausting on top of everything else going on in your life! Having 4 kids myself, I can relate - sometimes you just have to get what you need, no matter how the kids are acting.

Please don't let everyone's descriptions of MN winters scare you. We normally have a long fall and you ease into winter temperatures. Yes, sometimes we have a cold snap where temps can get pretty cold (not usually -40 unless you're pretty far up north!), but it doesn't last long. You would be protected by the cities "heat island" effect and wouldn't get as cold as outer-lying areas do. Jan/Feb are the coldest months and everyone just goes about their lives and gets through it. Your kids will love the snow! Anyway, MN natives seem to love to scare non-MN about the winter weather, but we don't live encrusted in ice for 6 months straight, I promise.

I'm so glad to see Daylon's improvements. I've been following your story for awhile and you all have my thoughts and prayers. Take care!