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!