Monday, March 28, 2011

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. :(

25 comments:

Jen said...

Oh my. I don't blame you at all for needing to vent. I would have been livid....especially when they didn't follow your very well explained instructions. I hope that after the hurt that they caused that they learned how they need to treat EVERY patient gently and need to ASK QUESTIONS before assuming that doing certain things is okay for all patients. Poor Daylon and poor Mommy and Daddy. I will keep you guys in my prayers and ask for guidance for the doctors involved. Don't forget to take a moment to breathe.

Janel said...

I am so angry and frustrated for you guys and especially for Daylon! Doctors and Nurses piss me off sometimes! (sorry!)

I had to go to the ER b/c of an allergic reaction - the ER doctor was such a jerk when I said that I needed the meds to be liquid. He actually said "don't you think you are being a little dramatic" - I almost showed him dramatic!

Praying that Daylon gets better quick! And, hopefully the staff will come to thier senses!

Janel

Kristy said...

Wow. Prayers for you Mama,for your little fella and your whole family. I can only imagine the frustration! The 2 of you, no doubt, have more medical experience than all the "pros" there combined when it comes to EB...why oh why is it so hard for many in the med. field to LISTEN?
Praying Daylon beats this infection quickly and that you all get some time to enjoy a break like the one you were attempting. Blessings and prayers.

Nicole said...

Oh me heavens I am so sorry. I hope those nurses feel like idiots for not listening to the parents. It seems like sometimes they get so confident they think they know everything. I'm so sad for you sweet Daylon, it sounds so painful. I'm praying for you guys and a quick recovery.

Mom to Many said...
This comment has been removed by the author.
Mom to Many said...

Oh, my goodness! Do you need to carry pictures in your purse of injuries caused by carelessness to show disbelieving medical staff? (Not that you have the energy to put that together.) Or how about a small club? Whack! Maybe a large poster of his eye might convince them.

Dad's expression in the picture above tells all. "Do we really have to do this today? Does our boy really have to be sick?"

I am so sorry that things are tough right now.
You and your sweet hubby are amazing. You two are an amazing team.

((hugs))

Cheryl

Anonymous said...

Your post started so good and I liked the pic of Daylon's skin, but it is terrible what medical staff did to him out of ignorance. Poor baby, to hurt his eye...

Wish you a quick recovery from the staph! Hope you are back home soon!

Elena

Susan said...

Holy cannoli. That is so sad! Just curious...do they ever apologize? I'm so sorry he's in the hospital again and that the hospital apparently can't get their act together. That's just so irritating. You have every right to want to vent and be angry!

I hope he is feeling better very soon and you are out of that place before anything else happens!

Angelique Ringgold said...

Man that is so frustrating when the "professionals" are not only ignorant but unwilling to listen to you, the parent. Even on the PICU we had a hard time convincing the nurses not to use gloves when they change Bella's diapers. After the 3rd glove injury to her bum, we starting asking the charge nurse to file a hospital injury report (I forget what the official term is). That seemed to take care of the problem. i don't know if it's too late but you should ask if you can file an incident report. Because they DID injure him. Sometimes just the threat is helpful. Glad to hear about the progress Daylon is making. I hope you all can get another break soon.

Anonymous said...

With a staff like this, I'd be out of this place in a heart beat. Makes you wonder if the infection was from one of those who thinks they are helping. Praying you can go home soon and very soon. You have a better setup at home and it is safer than where you are at right now.

Jan's Blog said...

Oh I'm so so sorry for Daylon and the ignorance of the medical staff. I don't know how you hold it together so well. I would be drawing blood from those that drew blood from him. I do believe that they mean well, letting you sleep and all, but it's sad that to realize what they are dealing with they have to hurt Daylon.

There have been many prayers for Daylon this week. He's just been on my mind more than usual. I'm so grateful to Heavenly Father for all the progress Daylon has made, and though there is a long way to go...you're all making it through the craziness and coming out on top...for the most part.

Hang in there. You're winning!!!
Love and hugs for all,
Jan

jeanine said...

Oh my goodness! I would be SO mad! I hope Daylon gets over this infection soon so you guys can head home!

Anonymous said...

I am a retired RN and got so furious reading your post. You should not let that incident go unreported. Esp. since things happened time and again on poor little Daylon. He cannot speak for himself. You must make it clear with staff how to treat him, esp. the "learning staff". Don't let them get away with harming him even though by accident. I pray for you.

Anonymous said...

We have been thinking steongly about Baby Daylon and all of your family and hoping things were going well. Sorry to hear Baby Daylon is in the hospital and all of the horrible things that have been happening to him. We hope and pray that his staph infection will get better real soon and you guys will be able to return home soon. When we read this the tears just started coming and we are so sad to hear this. You guys re so awesome and so courageous, caring and loving and have so much love for Daylon and your other children. You are truly an eternal family and Heavenly Father loves all of you so much and so do we. Our thoughts and prayers are with Daylon and all of you at this time and we are praying, praying and more praying that things will go well and Daylon will get better real soon. You guys really do need a vacation, but you really know where your priorities are and take care of them so well. You have made so many sacrifices and Heavenly Father knows the things you have been going through and he will give you strength, comfort and faith to continue on. You guys are so great and never give up the fight. You are true warriors. Take Care, Hang in there Superman Daylon, Jen and Brian. We Love You. Give all the kids a hug and kiss for us, we miss and love them alot. Miss seeing you, hope to see you all real soon. We are here if you need us.

All Our Love;

Myrna & Dwight CA

Gilda said...

Oh my goodness, I can't believe that this is a hospital your talking about. I am just so heartbroken with all that Daylon in having to deal with not to mention what he is there for. I will keep you all in my prayers. I do hope you will be able to go home soon also.

lisaray said...

If only nurses (and doctors) would listen to mothers! We know our kids! Frantic moms are not just overreacting. (I know, some are, but not all!)

I with the best to Daylon. Hang in there!

Anonymous said...

Wow reading what the doctor and nurse did makes me so angry. This is the thing I hate about a lot of doctors and nurses they don’t want to listen to what the patient tells them. They just think oh I do this day in and day out I know what I am doing. I would almost not even want him in any hospital since I have known a lot of people getting MRSA infections while being in the hospital for something else it scary. Hopefully they Dr have learned from this and it won’t happen again. I pray they can stop the infection quickly so you can get him home where you don’t have to worry about someone hurting him.

Anonymous said...

We need to print you signs to hang in the hospital room 'CHILD WITH GENETIC SKIN DISORDER DO NOT TOUCH without PROPER INSTRUCTION' This angers us for you and especially for poor little Daylon. You are in our thoughts.

Amy F. P. said...

Oh Jennifer! I'm feeling really mad at those doctors. That must be so frustrating when you have to be on constant watch like that and can't trust anyone to know what they're doing. We hope Daylon gets better soon and you all can go home.

Anonymous said...

Daylon, little Superman, please beat this infection. You look so very good in the pictures with your gorgeous brother and sisters.
Jennifer, I don't know how you didn't slap the stuff out of those nurses and Doctors.....so what if they think they know it all. I like the idea of making signs for when ever you have to go to the hospital or...bring some informational handouts to give to the staff before they even begin to treat him. There are no words to describe how frustrated I feel for you guys (without using bad words)
The prayers are going up every single day for Superman and his family. He will beat this and be back home before you know it.
God bless always, Bernie Gallagher, Fontana.

sharon kaye said...

I just wanted to cry when I read this post. I can't believe what you have been through. I can't understand why the doctors and nurses won't believe you when you tell them how fragile Daylon's skin is. That is so frustrating.I just want to go and tell them off. Hang in there. Our prayers are with you.

The Hardy's said...

I am soo sorry. Broke my heart reading this latest post. You are such an amazing Mother... our prayers are with you all.

Tracie said...

Oh that would be so frustrating! Is there any way that you can make a big stop sign for his door and crib that you could have any time he's admitted? Take a picture of the injury that gloves caused on him and the eye injury and post that on your stop sign. Give the professionals something to pause and think about. I'm so sorry that you're having to see your son injured. I agree completely with Bella's mom (above) who said to file an injury report. It sounds necessary at this point. I'm praying for your little man.

Robyn Mast said...

Hi there, my name is Robyn and I just came across Daylon's story from reading La Fuji Mama's blog...I can't imagine how difficult, painful and frustrating this whole situation must be, I want you to know that my husband and I will be praying for you, your family and especially for Daylon!!!

Kiza said...

thinking if Daylon in MN...