Day +96: next chapter...and the game slows



Daylon made the head story for the Upper Midwest Ronald McDonald House Fall 2010 edition. The newsletter comes out only twice a year, so we're so honored!

 When I was a kid my parents did as all good parents do. They pounded into us manners and the rules
of life. You know: be fair; don't cross the intersection until the little neon man lights up...that kind of stuff. To this day I can hear my mother's sing-songy voice in my head, "If you don't have something nice to say, don't say______?" And then all of us kids, "...nothing at all."

Keeping that in mind, I'm not going to say a word about dialysis the last couple of days.  They say a picture says a thousand words. I'll let the pictures do the talking then....

Daylon before dialysis:

Daylon after dialysis:

  There you have it. The battle continues...

  Daylon's mouth has slowly become more and more of an issue. He has several open sores on his tongue,gums, inside of his cheeks and the underside of his lips. The skin in his mouth has been peeling off in sheets. That's something new...like has NEVER happened before, new. It doesn't help too that dialysis pulls him so dry that his lips are cracked and shriveled. Unfortunately, no matter how often I apply aquaphor to his lips, it hasn't made a dent. Anyway, his mouth is also producing REALLY thick and stick-ick-eee mucus. When he keeps his mouth closed for a longer period (ie: sleeping), the mucus creates a web from the roof of his mouth to under and around his tongue. We have to quickly help him clear it out before he gets too upset and starts gagging. It's so weird. They're checking him for different fungus and viruses, so I'll keep you updated.

  As far as his GVHD, well, I have a theory. The biopsy came back negative for GVHD, but apparently it doesn't always show on a biopsy. Since it's clinically looking like GVHD, they're treating him for it. I told Dr. Wagner that oral steroids were out of the question until they are sure that he has GVHD. EB and large amounts of steroids (the amount used to fight GVHD) are a horrible combo. We've kept up on applying several steroid creams to his entire body 4 times daily. When we got our med list to go home, I noticed that one of the drugs he's on (Bactrim) has Sulfa in it. Brian is allergic to Sulfa and since allergies can be passed genetically, it made me wonder about Daylon's rash. The medicine is given twice a day on Monday and Tuesday to prevent pneumonia from coming back. The weird thing about his rash is that it comes and goes in strength. It'll be gradually getting better, and then it flares up again. Anyway, the two of these things together, kind of makes me think it's the medicine. Dr. Tolar is going to have Daylon switched tomorrow when he goes to his clinic appointment. I pray that this will cure his nasty rash, and we can rest at ease!

what an angel!

  Alright, so I wrote the above Thursday. I talked to the Nephrologist, using pictures and Dr. Tolar as back up, and he moved the goal weight!!! Daylon is smiling and babbling as I write (note the above pictures)!! The doctor did have one bit of upsetting news though. He said that tomorrow all the Nephrologists will talk about all of their patients and one thing that will come up is Daylon need for a kidney transplant. Since the frequency of dialysis has gone down and Daylon is peeing, they would expect that by now, his pee should be more productive. His creatinine is still 3.7 (should be under .58) and his BUN is 78 (less than 19). Waiting to see what happens after his CSA (immune suppressant drug that hurts the kidneys A LOT) is lowered at Day +100 (2 more days!! Woo-hoo!), is crucial to the decision.
 On a high note, Daylon did AMAZING at physical therapy today. He was evaluated to be in the bottom one percentile for development for his age, but he's making a lot of improvements everyday. He's able to move his right arm on occasion now, on demand. His hand is a work in progress. Today he was cracking us up! The therapist put a ring in his hand and you can tell he wanted to close his hand so bad! He was so angry, yelling at his hand! Such a cutie. Anyway, the goal is to have him sitting independently by Christmas for 6 minutes before he gets too tired. The long term goals seem so, well, long. They think he should be walking in 18 months to 2 years from now. Hhhhha. Oh well. Between BMT (which will cause problems for him over the next year at least), EB, being intubated, dialysis, his nutrition being in the pot and the stroke, he's got a TON of obstacles to over come. The good thing about it is that maybe by the time he walks, the extra fluid in his skull will have absorbed and it won't kill him (bad choice of words) to bonk his head! :) Plus, we all know that Daylon has a habit of beating people's expectations of him!
 The hectic pace of life right now is taking a toll on our sleep schedule and sanity, but we still prefer this to life in the hospital!
Other tid bits of excitement in our life:

  -On Tuesday, the van wouldn't start and I had to call AAA to get it started. On Wednesday the power steering went out and on Thursday Brian took it to the mechanic in St. Louis Park. He actually there right now, picking it up. Turns out it was the power steering pump that was causing us drama.

 - Brian made a DELICIOUS meal for me and the kids. You know, sometimes it's when the little things that make the best presents.

 - So you completely understand this story, let me tell you a little about Caleb. We often joke that Brian "picked" Caleb. He was born 10lbs 3 oz and 23 inches long. He was a big baby, he is a big kid. Although he's a pretty slender kid, he's as strong as an ox, wiry and fast. He LOVES sports and it's particularly because he's not half bad at them. The baseball fan in me can't help but gush about his love for baseball. The kid was born an athlete just like Brian always dreamed his son would be. Alright, you get the picture...on with the story...On Tuesday I took the kids out to the front play ground. A little boy and his dad asked if they could come outside and play with us, and of course, we said "yes". Well, the little boy wanted to play pirates and dragon and his dad offered to be the dragon. The little boy picked up a HUGE stick and yelled I'm gonna get you!" and chased his dad. My kids just kind of stood around, not really sure what to do, since we don't allow them to play with giant sticks (you'll see why shortly). The dad notices our kids lack of involvement, picks up four HUGE sticks, hands them to my kids and tells them, "This is your pirate sword! I'm the dragon and your job as pirates is to try and chase me and kill me by getting me with your sword!". The man then takes off running. With stick sword in hand, Caleb darts after him. The poor man had no idea what was coming. Caleb caught up to him half way around the play ground (I'm getting a bad feeling, at this point), positioned his "sword" like a baseball bat (now I'm standing ) and swung (as I screamed). Let's just say it would have been a home run. The stick hit the man right behind the knees, bring him face down on the ground. I ran, apologizing and lecturing the whole time, over to Caleb and the man. The man was great about it saying, "That's what I asked for, I guess".  I was so embarrassed at the time, but I have to admit (of course, never to Caleb), that I've pictured Caleb choking up on the stick and that man collapsing like a cartoon several times over the past couple days and I can't help to laugh out loud.

-We also went to the Como Zoo for an hour per the doctor's request. It's a free zoo here in Minneapolis and the doctor thought that Daylon should be able to enjoy some outside family fun. We just had to go at the end of the day, when it was less busy, and Daylon stayed covered in his stroller.

Keira's a bit excited...in case you couldn't tell :)

Daylon's behind there somewhere!

 I have to throw this last part in...afterwards we had a picnic at Como Park, that lasted for 15 minutes since the mosquitos attacked. Check out Keira's leg. She beat us all, bringing in a mosquito bite total of 36!!!

Thank you for your love, prayers, fasting, comments, cards, emails, texts, phone calls, packages....WE ARE SO GRATEFUL!!! Wishing you a wonderful night! Sweet dreams.
PS- A super big thanks to the wonderful people at COREL for their generous software gifts! We LOVE it!!!! THANK YOU!!! :)

Day + 93--OH! THE MADNESS!!!!

Please excuse my dramatic title for the post...just a little humor to lighten up the total STRESS of the past couple days! Buckle your seat belts! Boy, is this gonna be a POST!

Let me catch you up! Remember how I said the bandages might be covered? On Day +89 we found out that our insurance company will cover Daylon's bandages!!! It's such a relief to know that we don't have to worry about coming up with thousands of dollars every month to cover them! This has been such a HUGE stressor since Daylon was born! It was hard enough to figure out how to care and manage the life of an EB kid, and when you throw bandages in the mix....well, it's enough to throw someone off the deep end.

Since the bandages were covered, Maggie (inpatient nurse coordinator) and Janet (our social worker) were big advocates to push the docs towards discharge. Day +90 was the biggest day of all!!! They decided early morning that Daylon would be discharged from the hospital! What a relief that we could finally take the next big step in moving on. The nephrologist decided that even though it was supposed to be Daylon's day off from dialysis, he should go down to the Mayo Bldg before we left and be dialized. Grrr. These nephrologist are not my friend. Naturally, there were issues getting started, so dialysis didn't end until 4:30 pm. By the time we headed out the door, it was 6pm and the kids were over it. They had been at the hospital since 11:30 a.m. "helping" (or so they say :) ) us pack and clean up Daylon's room. It kind of felt like the last day of school. Everyone, coming in signing Daylon's sign (a nurse made), taking pictures, hugging, giving well wishes...so much excitement. On the way to the Mayo bldg, you have to take a skyway that connects the hospital and the Mayo bldg. The third floor is the surgery floor. As Daylon was wheeled down the hall, a nurse that passed (who didn't look the tiniest bit familiar) looked into his crib and said, "Oh! Hi, Daylon! I heard you're going home today!" I just looked at her, and I couldn't even smile because I was so bewildered that this stranger could know so much. Looking over her shoulder, she smiled and said, "He's famous!" Later, Ann, the nurse manager came in to say "good bye" and she thanked us for allowing them to care for Daylon. I chuckled and said, "No, we're the thankful ones!". She then told me that Daylon has become loved among the staff and has boost their work morale. She said that they not only love his little personality, but stories like his make it easier to face so much sadness as a nurse. She said, "This is why we do, the job that we do".
  I love that. I really enjoy hearing about how Daylon is touching lives, just by living his. You can look at everything he's been through and say that he's been dealt a bad hand or you can look at all the ripples in the pond in his life and see how many people he has been able to touch since he was given the trials he has. We choose the latter.

leaving the hospital

 Anyway, we walked home quickly before the sprinkles turned into rain; Brian pulling a wagon with the last of Daylon's stuff and carrying the heavy bag of meds, Keira holding onto the stroller, Daylon in the stroller, Caleb on a leash (he's become a wanderer), Violet on a leash, Sadie on a leash and me pushing the stroller and holding onto the leashes. I felt like a New York city woman multi-tasking...I'm managing my successful dog walking business, while still tending to my infant in the stroller...all while on a busy street. :) ha! ha!
  We came home to our apartment, crammed full Daylon's unpacked stuff, carrying 5 kids and 27 medicines fresh from the pharmacy and let the door close behind us. Now what?

  Life outside of the hospital is streah-hes-ful (that's drama queen for "Stressful"). Daylon's med schedule is crazy and the pathetic thing about it is that it's way worse for people who leave the hospital at Day +30 or so. Some meds have to be given at exact times, some meds can't be given within so many hours of another med, and some have a regular dose and a completely different dosage if it's needed in between regular doses. I think part of the stress for the med schedule is that some of them aren't like antibiotics or Tylenol (although they are both on the list) where if you forget, or give .1ml too much it's no biggie. Some of these drugs are serious, life altering kind of drugs. Plus, it's doesn't help that the most time that passes in between any two meds in 2 hours, making sleep impossible. His creams are only 4 times a day and we're used to that, so it's not too bad there. His formula has meds in it to help pull minerals out of the milk (for his renal failure) and takes 4 hours to make. Trying to remember to make the milk and the hassle of having him infused constantly with feeds makes life a little rough too. Between trying to unpack, giving meds, fixing machine beeps, tending to the older four who are a little irritated with how there life has changed the past couple days, and caring for Daylon while he is dried out from dialysis (moaning and so weak he can't lift his head) and doing the whole EB thing (ie: bandage changes, monitoring how close the kids play with toys near him, etc.) and the post BMT thing (ie: 7:30am dialysis, followed by BMT clinic appointment) Brian and I have been going non-stop. I really have to say that Brian has been absolutely AMAZING the last couple days. We've been getting to bed by 2 am and Daylon has dialysis 5 1/2 hours later. Brian gets up, and gives him his 6am meds and hops in the shower while I get Daylon ready and packed and then he takes him to dialysis. I get to lounge around the house for a few hours while I wait to get Keira off to school, and Brian is still with the nephrologists. He's been so great about everything that I don't even think it's really 50/50. I can't imagine doing this with anyone else.  I couldn't have married a better guy. :)

Every night Brian and I spend an hour drawing up his meds for the next day. We triple check each med, dose and hour. Each hour has it's own ziplock bag for room temp meds and another bag for fridge meds (if needed). This helps us to make sure there are no slip ups at 4am when we're half awake and it makes leaving in the morning easier.

This is our med chart (with med list and 24 hours) so we can see clearly which meds are needed at which time (red) and when they were given (blue). The papers are his feed recipe, wean calander, med. side effect list

 Well, enough of the mushy stuff. Today is Saturday and we are finally getting things under control. Today Brian took Daylon to dialysis and I stayed home with the other four and went straight to work, getting everything organized and put away. Four hours later,  it was done and Daylon was ready to come home. We've come up with a routine/program for Daylon's meds and things seem to be going well. We've not come across one blooper, thankfully! It probably seems like, "how hard could it be? (that's what we thought) but it takes some time to get used to, that's for sure.

BIG BOY CLOTHES!!!!

   Daylon's counts and skin are doing well. There's only one problem right now for Daylon. When we were using the scale on his crib his weight goal was to be around 13.3 to 13.5 kg. When he was doing the practice runs down in dialysis while he was still admitted they made us start using the standing scale because there is no crib scale after discharge. Well, once we started using the standing scale his weight was up in the high 14 kg area. I made them get his weight on the bed scale too and it was mid 13kg. The difference in the two scales is over a kg. Since his weight was showing 14kg + they wanted to pull off weight to get him back to 13.5kg. I keep explaining that his weight is the same as it's always been, since 14kg =the old 13kg. It my mind, it makes sense to up his goal weight by a kg and not try to bring him back down. They can not seem to understand what I'm saying or something because everyday, the goal is a kg off. He of course, gets sick and they have to back off, which is why it took 2 days. He has been so sick, it's ridiculous. BMT says there's nothing they can do and the kidney doc says that if it bothered him he would get low blood pressure and a high heart rate. Well, the only time he gets both sedatives simultaneously is at 8am (when dialysis is starting) which I believe is keeping his heart rate lower (165 to 170's which is higher than the 120's it starts out as) and his blood pressure goes from 115-ish/ 50's to 75/30's. Those are big differences in my opinion, but I'm not a doctor. All I know is he's sick afterwards and has to be propped up to keep from falling over. The BMT doc had to give him meds in his office after dialysis yesterday because the doctor thought he was acting like he was too sick. Hmm. Tomorrow he has off, so the battle will continue Monday. I writing Dr. Tolar tonight to see if I can get him to help us persuade them.
 on a brighter note: The blessing of being home is that we are able to be together as a family!

There's nothing like watching your children enjoy childhood and Saturday mornings:

Thank you for your prayers, for checking in on Daylon and all your beautiful comments. You all are great! Sweet dreams!