Day + 185 MERRY CHRISTMAS!

  I hope everyone has had a Merry Christmas and is enjoying this holiday season. Life for us has been crazier than we can keep up with. First off,
 
  WE'RE BACK IN CALIFORNIA!!

California Christmas! Palm trees get in the Christmas spirit too!

 
  Dr. Tolar, Dr. Stephanski and Teresa worked their butt off to make sure that we were home in time for Christmas and that is something that I think I will always be grateful for. I told Brian and the our families that Daylon and I would be in on the 23rd, but Teresa had worked out our appointments at CHOC to be that day so we flew in on the night of the 22nd. I found a $15 rental car (thank you Priceline.com) and Daylon and I drove home from LAX to surprise everyone! It was so great! We flew in at 11:05pm, so by the time we did the whole baggage claim and shuttle to the rental car place and then drive home, it was 2 am. I know. LONG day. Anyway, everyone was sleeping and we just stood in the hall calling out until people woke up! So fun! You should have seen their faces! Brian actually ran across the bed! Ha! Kodak moment and me with no camera! Figures!
   The transition from Minnesota to CHOC was completely taken care of the staff up at the U of M which was nice. We knew when our appointments were and where to go. Since we've been here, it's been a hard adjustment but I think that has a lot to do with my lack of ability to handle change. We just left the top hospital in the US for bone marrow transplant and the doctors here is very open about how things are going to be different. Daylon's newest doctor to the team is Dr. Buckbinder. He's a very friendly man and seems to take a great interest in Daylon which I appreciate. Dr. Vega is the Nephrologist here in CA and will be taking care of Daylon's kidneys. She seems pretty nice but not as interested as I had hoped in talking with the docs from MN about Daylon's past. In MN, Daylon was listed as an Acute Renal Failure patient (meaning that his kidneys are temporarily failing) and a full lab panel done with each dialysis. We always knew everything from his BUN to hemoglobin. The doctors saw the patients several times during a run and were the ones to make the call on how much weight to take off and how long to do it. Here they don't have acute patients in clinic, so Daylon is listed as a "Chronic" patient. They do ten consecutive potassium checks and the the potassium will join all other labs and be done once monthly. So, ya ready for some good news that makes this once a month bit rough to hear? Daylon's kidneys have opened up! He's now peeing like a normal little boy and we need those labs to understand when the pee has become "good pee" and is excreting the toxins in his body. Dr. Kaston (the Nephrologist in MN) said he would be lowering Daylon's dialysis visits to three times a week if he were staying and that it may be just a few more weeks until he could be off! YAY! Woo-hoo!! Daylon is peeing enough to come in to every appointment lower than when he left, so I think things are moving along, but I don't know for sure. It's hard too because the Nephrologist only comes into clinic on Thursdays so there's not much time to talk about things. Last week he went to dialysis everyday and this week it's been almost as much. Ugh. So frustrating.
  I do have more good news...Daylon is no longer vomiting and is slowly working his way up to his caloric goal. He's able to take about 3 ounces by mouth now (through syringe or top cut nipple) and eats anywhere from one to four baby food servings a day! I can't even believe the change! He's still on TPN for 12 hours a day and we are meeting with his GI doctor regularly now to see if he can tolerate a slow wean of the TPN. Daylon also has a head CT scheduled for Monday. Dr. Haines (MN neurosurgeon) wanted the CT done to check on the fluid and membrane of dried blood. The goal is to have it absorb and the sooner the better. The stitches on the three Burr holes are also supposed to be removed today and I'm praying that his skin and hold up for the process.
   We are SO THANKFUL! that Daylon has stayed healthy through all the traveling and bad weather! :)
  Just as a little heads up, Daylon is still very fragile and the slightest illness, like a cold can be fatal for him. He still has to use his mask and stroller covers whenever he's around people outside our family. The doctor has us slowly reintroducing outside germs to his body again (IE: 15 min max in Target mid-morning when costumers are few or a walk outside when there's no wind to blow plant spores) but we won't be bringing Daylon around to any large group gatherings (IE: parties, school, church, movies, etc) until his one year mark in late June...assuming Dr. Tolar gives us the okay. It's really important that any close friends and family that do visit with Daylon have not been sick in the last week or be living with someone who has been sick. I can't even begin to explain how uncomfortable writing this paragraph makes me, but Daylon has come so far and been through so much that we just can't be careless now. I'm sorry to be the barer of bad news, but thank you for understanding. :) You all are great!
  This Christmas was especially special for us because not only was Brian's entire family together for the holidays (he's the fourth of six children) but so was mine (I'm the second of five and the only one who lives in CA still)! My family hasn't been together for Christmas since 2003, and back then, Brian was the only addition to our original family. Daylon has never met my youngest brother, Jonathan who came home from his two year mission in Argentina back in July while we were in MN. I loved introducing them to each other. :) Our niece (my sister's) and our nephew (Brian's sister's) were also born since we've been gone. It was so fun to meet these little cuties! Tell me they're not a couple of dolls!

Elizabeth!

Landon! (and Uncle Gene)

We didn't do any sort of party or real celebration for the twins (Daylon was sick) when they had their third birthday on the third of the month and since we had to skip out on their second birthday party as well (we typically celebrate their half birthdays since they were born so close to Christmas and this June we were in Minnesota getting ready for the transplant) we just decided to celebrate once we got home. It was just immediate family since Daylon can't be around any kids who aren't his siblings or cousins. Anyway, their party was on the 23rd and was such a great time. I felt guilty for how low key it all was, but the girls really had a good time and that's what counts. The party was at Pump it Up and because it was Christmas week, they offered a HUGE discount! I love a great deal (like half of what we normally spend on their parties)! We had the whole place to ourselves! This is definitely a family place worth checking out!

The girls and Uncle Jonathan

Aunt Lindsay

Uncle Joseph

Cousin Ashton

CousinAleyna 

Cousin Gavin and Aleyna with Keira

Aunt Jess

Baby Zeke (cousin) living on the edge

Aunt Michelle, Uncle Deven and Elizabeth

Sadie and Violet ssssssliiiiidddddiiinnnggg down!

Boo-boos happened...oddly enough, only among the grown-ups! LOL!

Aunt Emily

my side and his (minus the Jacobson's and the Talbots)

my four siblings and I

On Christmas Eve...

SANTA CAME!



While all eyes were on Santa walking in the door, my eyes (aka camera) was on my biggest Santa fan! If you couldn't tell, Caleb was THRILLED to see Santa!



 

Christmas was great and the kids have more than enough toys to last them their whole lives! Having all those aunts and uncles comes in handy! :)

On the 27th, Brian and I celebrated our seven year wedding anniversary. I can't believe it's been seven years. Brian and I have seen each other through so much in such a short time. The first six years were filled with what felt like 10 years worth of life experiences, but I know that we were just being prepped for this last year. I can't imagine going through all this with anyone but Brian. We're a team, all the way. Daylon's nurse (and friend of ours) commented that we talk about everything and it made her laugh to hear us cracking each other up. Brian is my best friend and my favorite person to spend time with in the world. Where ever I'm at, if he's with me, I'm home. I just want to publicly thank my Heavenly Father for such a wonderful man in my life and tell my hubby, " Happy Anniversary! I'm so glad we have eternity together!"

  Well, enough of the mushy stuff. :) Thank you all for your concern, prayers and love! You guys are amazing. Happy New Year!

Violet built the Ronald McDonald House

Quick update

 I traded out with Brian on Friday night and got back Saturday, so I wasn't able to post (laptop is at the hospital). Just a quick note to catch you all up...
 Dr. Tolar and Dr. Stephanski (the attending on at the hospital right now) both thought that Monday is too soon for Daylon to go home. Brian and the kids are heading home as scheduled on the 20th, with the hopes that Daylon and I will be shortly behind them on the 23rd.
 Daylon is off all of his drips but the blood pressure med. He had a sudden jump in vomiting again and blood pressure issues Friday night and Saturday day. He has to also be 48 hours without a fever and right now, he's almost at 24 hours. He's still vomiting old blood, but they feel it's appropriate given the JEB and intubation 6 days ago. Since his hemoglobin is stable (meaning there probably isn't internal bleeding), I'm not worrying too much.
  I really want Daylon to be healthy for Christmas, but there's no rushing this sort of thing. The most important thing is that he gets better. The thought of not being with my other kids on Christmas is heart wrenching, especially because I've had to bail on them so many times the last 17 months, but hopefully I can make it up to them once we get back to CA. The best part is that we have another year with Daylon. This time last year I was praying he would last until Christmas so we could have at least one Christmas as a complete family here on Earth and look! we're getting a chance to have two! We've been so blessed.
  I'll post more later (with pictures) either today or tomorrow, once things calm down. I hope you all are enjoying this Christmas season!

Day +178 - update from the PICU

 Good Evening All,
 It's night four on the PICU (this time) and it looks to be our last night here! Let me explain the my spunky son's last 36 hours to you.

  Okay, so yesterday morning was my last post. Life was dramatic and crazy and then at 1:30pm Daylon threw up older blood tinged with fresh blood (gross, I know. Sorry). That was quite the hefty vomit, but something pretty great happened. He stopped throwing up! His blood pressure still soared through the roof and since he wasn't getting sick, they started Daylon on a really  hardy dose of Amlodipine (the blood pressure med that he was on at home which is stronger than the IV meds) . Towards the end of dialysis Daylon became a wild man. He was thrashing, jerking, rubbing, moaning, and basically beating himself to shreds. This continued ALL NIGHT LONG. He seriously did not sleep. He would rub and writhe and then start to look like he calming down to go to sleep when, presto! he's awake and jerking spastically (is that a word?) all over again. The PICU doctors were in and out all night. At around 1 am his oxygen saturation was at 80% so he started up on a blow-by of oxygen to keep his numbers happy. At 2am? Fever of 102.8F.  By 7am he had had a chest x-ray, the neurosurgeons visited and a request for a neurology consult had been made, oh, and one other thing...his blood pressure was normal! He was still maxed out on his pressure meds, but hey! it's being controlled! The PICU docs were afraid that all of the crazy movement was seizure related. I wasn't convinced. I just didn't have that feeling in my gut that we were moving in the right direction.  He was uncomfortable (miserable may be a better word), but he looked more itchy than seizing to me. Sometimes I get the feeling that part of his problems are medicine related. It's hard to keep track of all of their side effects. He goes on a med to fix one problem and it creates another. Am I making sense? Anyway, I asked the BMT doctors to take him off the dilaudid drip and put him on another pain med. It didn't make any sense why that should be a problem because he was on it for 4 months early after transplant, but I just had a gnawing feeling that it needed to go. Well, they switched it and his itching went away! Come to find out that although Dilaudid is the med they give you when Morphine makes you itch, they're from the same family of drugs. Very few people feel the itchy side effect, but apparently Daylon is one of them! I assume that we didn't notice in the past since he was intubated initially, and then so weak from being intubated that he couldn't scratch! This experience was such a testimony to me that our prayers are heard and answered. Daylon is definitely being looked out for from above.
   He has continued to calm down throughout the day which has helped his blood pressure numbers. He is currently being weaned down on the drip (from a 7 to 3.5) and is at 105/65 (goal is under 110).  He has thrown up twice this evening at the end of a coughing fit. Soooo much better than the 48 times recorded two days ago!
  At 5:20 the BMT doctors came in again to check on Daylon and they were SHOCKED by his improvement! We chatted for a while and then came the news. 
  Dr. Stephanski (looking at the clock)- "Daylon has 24 hours to turn this all completely around or else you two can not fly home on Monday with your family. We'll be back tomorrow at 5:30pm"
  I'm not stupid. I knew this was coming. My first and most important desire is to have Daylon be healthy. The second, is to go home.
 I really want to be on that plane.
 Alright. So, here are the things he needs to accomplish:
 -be off oxygen
 -have drain removed
 -be off nausea drip
 -be off pain killer drip
 -be off blood pressure drip
 -no fever
 -all meds switched from IV over to oral (would like to see)
 -acting "normal" (neurological function returned)
 -no positive cultures

 If I know one thing about my son, it's that he never gives up. He's the type of person that if you tell him he can't, he'll tell you, "watch me". I'm sure I'll be irked by this attribute 13 years from now, but right now, I love it...and I'm countin' on it!
  Since 5:30 tonight, so much has happened! About five minutes after they left, his oxygen saturation went to 100% and so he was lowered from the oxygen every so while or so until he was off it!

He has also proven to be well enough to have his drain pulled and the hole stitched up. They said that it would be painful but not so painful that they have to take him down to the OR. Guess what?  Daylon didn't make a peep. The most he did was scrunch up his eyes. Such a toughie. I know I'm bragging, but come on...I'm a mom. We're supposed to do that, right?! :)

  I'm so, so, so thankful his fever is gone and nothing has come back positive for infection or bacteria. Three of his meds have been switched to oral form and he hasn't thrown up! Woo-hoo! Like I said, he's down on his blood pressure med and will hopefully be off by morning.

  Neurologically speaking, he's completely back to "normal" (I kinda hate that word).   He sat in bed for about 30 minutes playing, he's been rolling all around his crib and talking away to anyone who would listen. I actually don't remember him babbling post transplant . Don't get me wrong, he's plenty noisy, but it's mostly just yelling. He was actually trying to copy the nurse and I tonight. I have to admit, it's a pretty great feeling! The nurse said once tonight, "Yeah, yeah, yeah" and Daylon repeated the whole thing back! We just stood there with our mouths open and a "Did you hear that!?" look on our faces. I hope that tomorrow morning we can start going down on the pain med, and then the nausea. It's all up to how he feels though, so we'll see. I know there's only a slight chance that Daylon and I will make it home as scheduled, but it's great to see him try. I haven't given up on him yet, so now won't be any different.

  I believe in Christmas miracles.

  Do you?

All that rubbing and scratching left with two corneal abrasions...again