Monday, August 30, 2010

Day +67

Erin, Daylon's primary nurse, and Daylon playing

Today and yesterday haven't been too bad! Boring actually. Daylon is continuing to make baby steps forward. Yesterday they were able to get really close to weaning him off the Versed and Dilaudid!! He's now back on Ativan [it sounds like a step back but it's not. It like a long acting Versed (they're both from the Valium family) that needs to be given orally ever 6 hours instead of a drip (continuous by IV)] and Methadone ( a light sedative/narcotic that is used to help with withdrawl that's also given orally). They are being introduced to his body with the hope that in a couple days, the Versed and Dilaudid can be given the boot.  Let me introduce you to the rules of leaving this joint...or at least 5D:
  • You can not be on an IV drip. You can be on IV meds though, if they are only given periodically throughout the day...couple more day. Seriously, like two days.
  • No fever for 48 hours (they prefer you to be off antibiotics too)...he's workin' on it
  • There's no magic white cell count number, but they need to be strong enough to handle the outside world. Let's put it this way. You can't go in the hall until you're .5 for three consecutive days. ...check!
  • Dialysis only needed 5 days a week or less...gettin' closer! He's at 6 days a week!
  • The doctor and nurses feel like the parents are ready to take on the CRAZY daily medicine and dr. visits schedule...They seem to act like they think we're competent! :) I guess we'll find out!
  • No life support assistance...goin' on three weeks!
So, as you can see he's makin' progress! That reminds me... His BUN is at 14!!! It needs to be under 19 and his fell into the 60's a few weeks ago, and then just stayed there! This just basically means that is pee is starting to become productive pee, and get rid of the toxins in his body!
  Yesterday, during physical therapy Daylon impressed us all! Ta-dum!

Highlight of the Day: Look who's sitting all by himself!!
OK...he's done :)

 Apparently, that pooped him out because with the exception of a few moments when people were bothering him, he slept all day while I held him. I mean he really slept! He was dead to the world. He woke up at 7pm and was up until 3am. Yeah, um, his nights and days are a little off. :) If that's his biggest problem though, I'll take it!
Highlight of the Day: He started waving...again!

Today was sort of a busy day. First thing this morning (like I was still rubbing the sleep out of my eyes, first thing) Dr. Tolar stopped by in a surprise visit. He evaluated Daylon and told me that we were going to have to push back our 1 pm biopsy appointment until 3pm because of dialysis. While dialysis got set up, Brian and I traded out so I could get a shower. Remember my shopping trip to Target from a week ago? Well, the following day Keira threw up at Sam's club (what is with my kids and that place!) while they were shopping. Brian had to top me! :) Totally kidding! Anyway, I've been trapped here and Brian has been at home trapped with the kids. Three of the four ended up getting it, so it's been over a week. I've just made quick stops home to shower and leave (while the dialysis nurse watches Daylon) so we don't spread the bug to the baby. Well, today we made a nice couple hour trade off.  I feel like I've missed so much, being away from them! I loved being able to hang out with the kids for a few hours, while Brian tended to Daylon. Unfortunately, when we switched back, I learned that Daylon had been going crazy thrashing and moaning for the last hour. Several doctors came in to see him, but no one could figure out what was wrong. I, personally think he was tired of sitting in bed for 5 hours, plus he's not a fan of the masks that everyone wears. Either way, he stopped eventually. Dr. Tolar and I got to work removing the dressings shortly thereafter, and Daylon was just too wild and unreceptive to the sedation (shocker) to continue. We'll give the biopsies another go on Wed.
 After Dr. Tolar and his crew left, I spent the next 2 hours finishing his dressing change and then Daylon conked out. See. Pretty boring stuff.

Daylon and another member of our team: Nurse Sara!
I do want to thank everyone who has taken time out of their days to help us. One of my biggest faults, is that I'm a horrible at writing letters...which is why I post every other day when I mean to do it everyday. I've been meaning to write "thank you" notes to several people who've sent us mail lately. You know who you are, and we are so thankful and touched by your kindness. I will get around to those "thank you" notes, I promise, but in the mean time I want you to know we appreciate you.
  I'm going to leave you all with a poem Keira wrote for Daylon:
"  ' Remember when we got Daylon and they said he would die,
well they were WRONG ,
They didn't know that Daylon loves us and is strong'...and a dinosaur"
-Keira N. Edling

Sweet dreams.

Sunday, August 29, 2010

Day +65: Freedom!

You will never guess! Four great things happened today. I can't decide which order to tell you them in, so I'll do it chronologically.
 1. So, you remember how I said it's been absolutely nuts with Daylon being in pain and writhing all day the past several days? Well, he slept for 2 consecutive hours last night without waking once! Then this morning he was right back at it again but was able to be content for several minutes at a time. By this afternoon, he was hardly complaining at all. I have no clue what was wrong with him, but I'm glad it's over!! I even got him to laugh today! Well, it's more a chuckle, but you know what I mean. He hasn't laughed in a week. All he's managed is a quick smirk, lately. Other than that he's been super serious. So glad to see a peak of my happy Daylon!

Daylon watching his new duck, from the Pop's (Elle's family), dance on his diaper.
 2. Today when the BMT attending came through we talked about maybe giving Daylon a pass to the RMH as soon as next week. I told her how Daylon has always been a kid who knew what he wants and I think he'd do better if he was able to be with his siblings a little bit each day and play. She agreed and said that the new goal for Daylon was to get him a few hour pass back to the house (after dialysis and therapy) so he could start to perk up!! Woo-hoo! Have I ever told you what a huge fan of progress I am? :)
 3. This one wins for highlight of the day!! I will let the pictures speak for themselves.
Man, I love this kid!

the mask is a BIT too big
So long 5D!
That's right folks! He's outside! First time in 67 days!

the hospital he left behind! :)

Daddy and the kids came right from the swimming to visit with Daylon. I love how concerned the twins look in this picture.

This one of Caleb, just because he looks so happy! :)
4. Our hour of free time was up, at perfect timing; Daylon was just starting to become uncomfortable and be in obvious pain (or so I think). Well, I got him onto bed and got his lines situated while we waited for Kim (his nurse) to hook him back up to his IVs. I was thirsty so I went over to the bedside table and took a sip of my drink. Daylon went from moaning to full on crying and totally eyed my drink as I put it back on the table. I stood there totally shocked that he was obviously thirsty and the thought had never occurred to me! I went over to the drawer and pulled out some sterile water and a syringe and let him drink 10cc (Shhhh! Don't tell! He's not having dialysis tomorrow and the doctor would flip if he knew!). He reminded me of a little bird, eagerly eating his food. He was jerking all around trying to reach his mouth up to the syringe (it would hurt his mouth if I actually went in it) and then gobbled it up. I don't know if you can "gobble" water, but it fits the action, so I'm using it! :) When I put the water back on the counter he cried until it was hidden. Once tonight, I went in search of a Kelly clamp and when I was moving stuff around, I accidentally put it back into his line of sight and he spotted it within a few moments and started crying. Realizing that I'm a dingbat for not thinking that my son was interested in drinking, is not one of the great moments of the day. :) Do you realize what this means? He recognized water and remembered he's a fan of drinking (he didn't eat a whole lot of solids. This kids mouth blistered on an over-ripe banana), he was mentally 'there' enough to let me know he still wanted to drink and yell about it until it was hidden, and he was smart enough to remember where it was hidden and then recognized it hours later!! I'm not saying that I know he is going to be the exact same kid mentally as he was pre-transplant, I'm just saying, something is there. He's thinking. I changed my mind...this is the highlight of the day. I'm so happy.
  Modern technology is wonderful and it's amazing what man can do, but I love that in the end of the day, it still is, and forever will be, up to God. Thank you for your prayers, thoughts, and kindness. We love you. Sweet dreams.

Saturday, August 28, 2010

Day +64

Who's that handsome devil!
The last two days have been pretty nuts. Daylon has slept no more than 20 minutes at a time, and has moaned and thrashed almost every waking moment. I am only able to calm him for a minute or two, until he grows tired of my efforts and starts complaining. The doctors have no clue what is going on. There was fresh blood draining from his tube Thurs. night for a few minutes, but then it stopped. This morning there was this dusty sludge around his g-tube site and clogging up the actual g-tube. A GI doc. came up and said that it's nothing too concerning, but an x-ray would be done to check the j portion of the tube. The results show that it's in the same location it was placed in, so that's not his problem. He hasn't had a fever since they started Ethanol locking his lines at night. Boy am I glad we have a problem solver like Dr. Tolar on our side! He thinks part of the issue post dialysis is also allergy, so he's looking into it. Hallelujah! :) Daylon's potassium has been dangerously high, so there's no backing off on dialysis.

   It's been 48 hrs and his skin looks great! I can't even believe this is the same kid! I'm so stoked! The bottoms of his feet are still missing several layers of skin and his toes and the surrounding area have a yellow/green look to them from infection (staph on the left and pseudomonas on the right). The infections are starting to clear up though. His feet are sore from the dialysis blood pressure cuff, so until dialysis stops, they'll probably still be there.

HIGHLIGHT of TODAY:  Daylon held up his head!!

Daylon and his nurse, Kim. He hardly even looks like the same kid! His face is so full now from the steroids, not to mention the CSA facial hair! A mustache at 13 months! He's lucky he's so dang cute!
 It's 2:30 am and I'm exhausted. I'm sorry this is rushed but I need sleep. Thank you all for being so wonderful. You give us just the boosts we need! More tomorrow! Sweet dreams!
PS- Daylon's primary nurse, Erin is back on tonight! Yay! It's the first time we've had her since he's been intubated!

Thursday, August 26, 2010

Day +62

    Today is actually Day +63, but it's just begun, so I'll catch you up on yesterday. Yesterday was a pretty good day for Daylon. First off, Dr. Tolar came in and told us that he's been working on Daylon's Day +60 labs and he had the results! Daylon is 100% engrafted within his blood, as opposed to Day +28 results of 100% and 91% (two different types) which was still considered a success, but obviously, 100% is better. He also said that his T cells (immune fighting cells) level was at 397. A healthy, person without transplant has a level of about 400. He said that quote, "across the board, I don't see this type of level until one year post transplant." What great news! We're all feel so encouraged by such a high count. It was kind of funny, actually, because Dr. Tolar said that Caleb must be a pretty incredible little boy and that it's almost like he has cells with super powers. I laughed and said, "Yeah, like a X-man." His face lit up and he shot back, "Exactly!" :)
   Yesterday morning Daylon had both physical and occupational therapy and things went well. He was more alert yesterday (spoiler alert: and today) than he has been. He's turning his neck now to tract objects and is consistently responding to his name. Perfect timing because I was beginning to wonder if how he's been is a permanent state. It's so funny, how you're not given more in your trials than you can handle. Every time I start to feel I'm getting to my breaking point, I see a glimmer of something new, an improvement. Once that happens, it's like the world opens up and I can breathe easy again. How can I not smile when I'm reminded that God is ever present in our lives.  I know He's watching over us, and is aware of our needs.
   As for dialysis today, well, things are still a bit confusing. Daylon's blood pressures have gone from low to high. He's actually hypertensive now for even an adult.  The good news is that he didn't need any dopamine to keep his blood pressures up! :) Daylon had his lines ethanol locked for several hours in the middle of the night, to help clear the line of any bacteria. I am happy to report that his fever went only to 101F! Yay! He still was splotchy and acted a sick, but he slept a lot and fussed very little. :) Last night when they tried to lock his lines, I don't know if the nurse pushed it through to fast or what but his face turned all red and he started choking. Anyway, she freaked out and pulled it out. The nurses decided that they would wait until tomorrow to lock his lines when more doctors are around. I don't think it's a big deal, to be honest. I hope he doesn't run a fever today.

Daylon after dialysis
Woo! Look at all that skin! :)
     Yesterday was also the big bandage change!! I was so nervous not to put on as many bandages. Thankfully, Dr. Tolar came in in the middle of it and gave me the pep talk I needed to get it done. His feet are a complete disaster, but the rest of him looks amazing! It was actually the first bandage change I've done by myself in months. Well, I take that back. The nurse did take a picture of his back while I held him up and I paged her twice to hold his bandages in place on his legs while I put the tubifast over it. Anyway, it's a huge milestone for him! He is normal a CRAZY man during bath time. He fights us so much  that he ends up tearing up his skin and bleeding, and we're worse off from when we started.  High five, Little Man!

                               normally we go up to the top of his thigh 

normally all the way up
We have a new attending on today and just got our new fellow a couple days before, so I feel like we're back to square one in a way. At least I've got Dr. Wagner's and Dr. Tolar's email addresses. Oh well, overall, things are moving forward.
  While I've got you here, a bit of time has passed since I started so I'll fill you in on today real quick:
  Daylon had a good early morning. Alert again! Yay!
  Continued with high blood pressure and the Nephrologist is taking off more weight (WHAT?!) because he believes it's fluid related. He said the fontanel is not a good indicator of his fluid needs. He also says that it's really rare that people are allergic to dialysis, so he doesn't think that's what his problem is.  Also, he said that if he had an infection in his dialysis line, the cultures would show it. He said that his problems have nothing to do with dialysis. It's all just a coincidence... This guy is seriously erking me. It's like he thinks that if these problems are dialysis related than it's his fault. My gut tells me he's wrong. How can Daylon not get sick on the days he doesn't have dialysis and say that the two aren't related? I've felt it was the problem from the beginning. Dr. Tolar thought one cause was an infection, and treated it like one and it got better.
  Today he's also ghost white and throwing up. He's not strong enough to get it all out, so I have to stick the Red Robinson in to suction up the rest, which causes gaging, which causes, yep. And the cycle continues.
  Well, dialysis is ending. I need to go help get a bed weight. Hope all is going well in your corners of the world! Have a happy day!
PS- no new blisters so far! It's been almost 12 hours with fewer dressings!
pooped out from his dressing change!

Wednesday, August 25, 2010

Day +61

Today's post is short and sweet. It's 1 am and he's finally relaxed enough (thank you Homedics lullaby projector) that I can step away for a second...if that gives you any idea of the type of day we've had.
  Dialysis ran today, and the nephrologist actually wanted to lower his dry weight because he felt he was still fluid up. He thought his stomach looked distended. He's a baby; that's normal. He says the high pulse and sunken soft spot aren't dialysis related. Agh. This is so frustrating. I feel like everyone is taking this personally. I want everyone to work together and figure this mess out. After about 20 minutes of pleading my case, the doctor finally agreed to just clean his blood today and not take any extra fluid off.
  Dr. Tolar thinks there is a possibility of a line infection that is being pushed into his blood during dialysis. There are seriously about 6 or so possible oddball things the doctors are all looking at. The hope is that the infection/allergy/condition will suddenly clear up on it's own (what? It happens :) Seriously though, it does happen around here). I keep hearing things like, "I haven't seen anything like this in 30 years"...boy that's a popular phrase to use when taking care of Daylon :) Ok, so the possibilities range from things that can be taken care of quickly like a change in meds, to something a bit more difficult like an infection (it would have to be a serious one to not have died with all the antibiotics he's on), to something possibly life threatening like his immune system is over zealously trying to kill off some foreign body (not GVHD). Either way, they need to figure it out asap or it needs to up and go away.
 Daylon still got a fever tonight, but only 102.7F. He's moaned (this is new) and shivered all evening and well, since about 3 pm (dialysis ended at 1:30).
 Before he got too sick I did get to play with him a little. He really liked all the lights and sounds on his dinosaur shape stacker that we bought him for his birthday. He didn't really make any expressions, but he was grunting and started to move around when I told him, "lets dance to the pretty music!" Everyday I see a little bit more of my Daylon starting to return.
  As always, we are very grateful that you take time out of your busy lives to check on Daylon and to pray for him. Thanks for all the dialysis comments! I love having ideas when I confront the docs in the morning!  Sleep well.
PS- no dressing change tonight, since he was inconsolable pain. Hopefully, I'll have pictures tomorrow.

Monday, August 23, 2010

Day +60...for real!

A Melt my heart moment: look who smiling just because Mommy is talking!
Remember how in my last post I said I couldn't believe sixty days had passed? Well, that's because they hadn't! It was only day 58! LOL! All the weeks in the hospital blur together and I have a hard time remembering where one ends and the other begins! Oh, well. :)
   Things around here have continued to be dicey, but, in a much nicer room. :) On Sunday morning Brian got the kids dressed for church, hair and all, by himself (this is huge for him!...and me! I'm such a control freak about their hair), so I could have a relaxed room when the doctors came through. Thankfully, Dr. Tolar came in alone to evaluate Daylon. I showed Dr. Tolar the picture of Daylon looking straight ahead and he was thrilled. Really, he seemed genuinely excited. Actually, when he was walking out the door he asked me to email it to him because, "Daylon gives (him) so much pride." I thought that was sweet. Anyway, back to the story, I told Dr. Tolar that I know it sounds crazy, and I have no medical background to back it up (unless you can't the 5 years I was dedicated to watching "ER" in the 90's) but I think dialysis is making him sick. The only thing I could find online, was from a nurses handbook that said that if there's a fever of 101.5 or higher a couple of hours after dialysis it could be an allergic reaction to the dialyzer. I had the nurse look back on the type of dialyzer used and there hasn't been any real change. Now, I know Dr. Tolar doesn't know what's wrong, the Nephrologist is clueless, and when he was back on 5C, the PICU team had no idea. Dr. Tolar said that I have proven to him several times that no one knows Daylon better than me, so he was willing to take a shot.
He's grasping!
Daylon didn't receive dialysis on Sunday and didn't get a fever. He's heart rate didn't drop below 150 and his soft spot was still sunken, so I think he was still recovering from Saturday. When I walked over to his crib in the morning he smiled and was overall, more alert than he has been. I was able to work with him on grasping and tracking and by the end of the day he could swat at a toy while sitting up (in the therapy chair) if I helped him support above his elbow.  He did have some withdrawl issues, but nothing too, too bad. Well, except for insomnia. He was up until 4:30am this morning again and these nights of 3 hours of sleep is beginning to catch up with me.

Getting cocky!...Two hand grasp!!
  Today, dialysis started bright and early. He's so close to his ideal weight, if not under, that dialysis wasn't needed for weight control. Although, he's making urine, it's not considered "good urine" because it doesn't contain creatinine, potassium, etc. It's pretty much just fluid. Dialysis not only removes the extra fluid but also, the chemicals in his body that can become toxic if at too high a level. A few of his levels were at a scary high level, so they were quick to get things moving. While dialysis was setting up, Daylon got an echocardiagram done again to make sure his heart is functioning properly and that his hickman (which is also his dialysis line) hasn't pushed an infection into his heart causing the high fevers post dialysis. They were also going to check on his new heart murmur. We haven't heard anything back yet, so I'm thinkin' no news is good news. They only had a goal of 200cc today for dialysis and Dr. Tolar ordered a series of blood tests to be done during dialysis when the chance of finding a potential infection is higher. So far, once again, everything has come back negative. Agh. Please pray that if it is an infection, they will find it soon.
  After dialysis, his fever was back. It was up to 104.5F, his face beet red, he was gasping for breath, pulse 200, the whole bit. Today, Rachel (the nurse) asked if she could give him two doses of Benadryl just in case it is an allergic reaction to something from dialysis. He conked out from it, well, probably that, dialysis, and the fever. It's nice to see him comfortable though. Respiratory Therapy came in and gave him a breathing treatment, and upped his oxygen levels so he's no longer gasping. I'm sure sometime tonight they'll put them back again.  With the help of some Tylenol, a cooling blanket, ice packs, and luke warm water being poured on his head, his fever is at 101. Whew! Another potential seizure avoided! 

A bit of a smirk
  In happier news, since today is Daylon's "Day+60" they pulled out a ton of pulled to check for his current engraftment state. Dr. Tolar asked me this morning to "remove a significant amount of dressings at his next bandage change."
  I replied, "Oh! I already did!" I was so excited to be on the same page as him! "I have the dressing on both arms down an inch from before." I'm beaming by this point.
 "Yes, I noticed" he responded, smiling "Can you take them off?"
 Uppp. There goes my smile, and instead I just stand there with my mouth open. We had a nice little chat/debate :) We agreed that this week, it was okay to remove from his thighs to his knees and from above his elbows. I'm a nervous wreck and I haven't even done it! He told me every mom has battled with him, but what's the point of doing the BMT if you're not going to remove them? Well, he's got me. That's a good point. He said that one of his patients is 3 yrs post transplant and there isn't a sore on him, but his mom won't remove the dressings. Hmmmm. It's just that 60 days seems early and we haven't even gotten the results back yet to see if his body is producing the laminin. He said that Daylon looks good though, and I agree. I guess we're testing the waters! I'll post pictures tomorrow night after his bath.
  Please pray for Daylon's skin, that it won't blister and tear too badly, if at all. Please also pray that they'll be able to figure out what is going wrong after dialysis and that his kidneys will soon start functioning properly so that they can minimize how often he gets dialyzed. Thank you all for you're love and support. We're in awe everyday when we read your comments, when the mail is delivered or are stopped in the streets. Thank you for helping us to be lifted up in our trials. We love you! Sweet dreams.
the two towers I have to lug around when Daylon and I are on the go in his room...or anywhere really 

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!