Ahhhhhhhh!

Is the title a bit dramatic? Yes. But that's how I feel. Daylon's week was going pretty good. He started to pull up on his hands and knees, with assistance he started standing for about a second and a half, he continued to eat well (although he's still not gaining weight) and by some miracle, he was actually retaining his vocabulary! Since all his head issues, he's not been able to say more than 3 words at any one time. Overall, he's learned (and relearned) about 20 different words (to the point that he says them often throughout at least one day) but short term memory isn't his strong point and they slip away. Right now he says: Mama, Mom, Dada, bye, ball, dog, up above (for twinkle, twinkle little star), out, go and more. It's obviously not a great list for a 20 month old but he's not just any 20 month old. This is GREAT for him.

 The only bummer about the week, was that last Sunday he started up with a clear runny nose and a cough. On Wednesday we went to his Kidney appt. where we continued to get the "green light" for no more dialysis and then to OPI (Outpatient Infusion Center) for his weekly BMT visit. The BMT appt was supposed to be a quick 15 minute appt. Just some labs drawn, Epigen injection into his Hickman and a visit with one of the BMT docs. OPI isn't used to seeing such large Hickman and after a ton (when I say ton, I mean a super ton) of drama we left 4 hours later. Daylon spent about 2 hours of that time with blood stagnant in his lines while we waited for pharmacy to bring up the right dose of Heparin and someone from Dialysis to come over to put the Heparin in his line since the regular nurses aren't allowed. On Thursday Daylon started running a low grade fever and vomiting which I didn't think was a huge deal since Keira and Caleb had already had a 48 hour bug which involved the same symptoms. We needed the flu to leave Daylon and not run it's course on anyone else by Friday because my Dad had planned a weekend trip to San Diego for all us and some of us could really use a vacation. By Friday night, he was acting better so we figured he was on the down side of the flu. I called the BMT doc that was on and asked if she thought we should come in and she said no. Every person at home with the exception of my dad had the runny nose and cough that Daylon first got on Sun. It's one of those lingering germs. Ugh. Although no one felt 100%, we weren't horrible (plus we were planning on hanging out in the room for a good portion of the time) so we went to San Diego.

Here's a picture of my mom in San Deigo. I wasn't able to grab a whole lot of pictures in the 12 hours we were there since we were sleeping 8 of those hours. :) The suite was a beauty though. Brian and I shared the loft with Daylon.

 Late Friday night, Daylon's fever was back and he was vomiting. Saturday morning the fever was gone and by late morning it was back (103 F) and so was the vomiting and diarrhea. Brian and I had to drop out of the vacation and drive back to take Daylon to CHOC.

Playing peek-a-boo with a wet rag to drop his fever before we left for CHOC

  This is where the "Ahhhhh!" comes into play.
  When we got to the ER Daylon's was fever-free and sitting up playing with toys. Isn't that always the way? The took several blood samples for cultures and labs and a urine sample then admitted him to be observed. We went upstairs to the cancer floor and we're met by the admitting crew. There was the pharmacist, 2 residents (kids fresh from medical school. CHOC is a learning hospital), the nurse and the nurses assistant. They asked for Daylon to lay on the bed to be measured. I'm turned, answering the pharmacists questions when out of the corner of my eye, I see the nurse tug Daylon's sock off and Brian and I both yelled "no!". We gently took his sock off and peeled back his bandages so they could see his feet. While we're doing that, that resident decided to look into Daylon's eyes. I turn to see her holding up his eyelid and pulling on the bottom of his eye. It was too late. The damage was done. Daylon got a corneal abrasion, a FAT blister under his eyelid and one on the bottom rim of his eye. His eye is so swollen his eye sticks out further than his brow bone. The underside of his eyelid is actually puffed up to the point that his eyelashes run across the middle of his eyelid. I'm sorry, to say it, but that really ticks me off.  He was screaming and I'm trying to explain to a flippant doctor that we really have to be careful with him when the nurse turns him onto his side by grabbing his back and side with rubber gloves. I try to take him from her but she shoos my hands away because they need to check for a rash or abuse. Thankfully it was over in a matter of seconds but he now has two fingerprint sized blisters on his back.

  One of the hardest things post-transplant is getting people to believe he's got a serious disease. Before, they would see him in his bandages, always bleeding from some place and people knew he was sick and fragile. Now, he's scabbing up which is great, but makes him look like he's getting over the chicken pox instead of EB. His skin looks pretty good (except his right foot) for the most part but we work hard to keep it that way. He still gets lathered up in Aquaphor and plays on memory foam and sheepskin rugs. His eyes, mouth and insides are almost what they were from before transplant, but no one gets that.
 Saturday night, Daylon cried and fussed most of the night from the pain (although I think part of it may have been his dislike for hospitals). I had fallen asleep in the chair and the nurse thought she should let me sleep and give Daylon his medicine herself (even though I asked her not to). I woke up to him screaming and her telling me that he's fine, she just scared him. When I turned on the light his lip was bloody from where she took off skin from being to rough with the syringe. We also found out the blood sample and urine sample from the ER came back contaminated so the night nurse had to do it again. Her sample came back contaminated as well. Her second sample actually made the cut. They had taken so much blood from him that he went from a 8.7 hemoglobin on Wed. to 6.2 on Sat. so he needed a blood transfusion.  
   Anyways, the first 24 hours, I felt like the nurses thought we were making up the disease but now that his skin and tissues are starting to brake down, they're slowing getting it. He has a bacteria infection in the red port of his Hickman. His cough is getting worse and worse and the more he coughs, the more his airways are blistering. They've started him up with breathing treatments again. I'm REALLY hoping to convince the doctor that Daylon is better off at home so we can leave today. I'll keep you posted.

  Thanks for the vent session! I'll try to have my next post be a happier!
  PS- Dr. just came in and said that an infection is growing in both ports of his Hickman--Staph Aureus. It's in his blood and now they need to run some tests to see if it's attaching his organs. Echocardiogram scheduled for later today and the rest tomorrow. I'll let you know what we find out. Oh! And, we have to stay several more days at the very least they said because it's a hard bacteria to kill. :(