Wednesday, June 1, 2011

We're baaa-ack!

I hope everyone had a happy and safe Memorial Day. We had a crazy weekend of rushing, running errands and having fun. On Sunday though, it was all cut short for Daylon and I as we flew from LAX to Minneapolis/St. Paul Airport. We got in Sunday day night and settled into our hotel (the RMH is SUPER booked :(  ). We're staying in north Minneapolis about 10 miles from the hospital and downtown. The hotel is pretty nice. It's small, but that's okay since it's just the two of us. Way to go! I've really missed Minnesota and it's so nice to be back. It is L-U-S-H up here! It's so beautiful and green. I just love the atmosphere. The only thing that would make it better is if Brian and the kids were here. I'm the kind of girl who has not one but two gift certificates to her favorite salon and has yet to go because that would mean leaving her husband and kids for a couple hours. I know it's pathetic but I miss them.
  Moving on... =D
 Daylon's schedule was packed today. We had lab draws at the new hospital (which is sooooo stinkin' nice, by-the-way!!) and his veins refused to co-operate. After several pricks which resulted in a few drops of blood each (not to mention an hour of everyones time), we ended up in Peds vascular where a screaming Daylon was held down and a ultrasound and little shunt were used to fill up the 15 viles they needed. Poor baby. By the end he had had it and I don't blame him a bit. There aren't many one year olds who will let you poke 'em and keep on playing with Cookie Monster, but he did...initially.
  Afterwards, we went to see Dr. Saltzman (his surgeon) who was so happy to see how well Daylon was doing. He kept going on about how great his skin looked and how he was so much more coherent today than the last time he saw him. That really made me happy to hear. Too many cruddy days lately. Anyway, he informed me that he's doing the surgery laparoscopically through his belly button. While he's in there, he's going to fix Daylon's hernia as well, so that's good.
 Next was Pulmonary, Dr. Regelmann. He said that Daylon's breathing is definitely labored and that his lungs are unclear with diminished breathing. Daylon chokes when he drinks his bottle, wheezes, can't sleep more than a few hours without coughing fits and coughs so hard several times a week that he vomits. It's pretty rough. Something is obviously wrong, but they're not sure if it's JEB related or if it's a nasty bug that's refusing to leave with antibiotics or if it's damage from the BMT. The only was to know for sure is to do a bronchial scope but the risk of that is that he could likely bleed in his lungs. If they leave it as is and it is a bug, he could possibly become fatally ill. Rock, meet Hard Place. I signed the consent and Dr. Tolar is going to talk it over with him and they'll decide what to do. Brian and I aren't as educated in these areas as they are and we have faith in them and know that they have Daylon best interest in mind.
  Last, he met with Dr. Erickson who is the GI doc. She showed me Daylon's growth chart. It was embarrassing. Part of me knows that I've tried my hardest to help him and I shouldn't feel guilty, but I can't help it. I do. His weight is not only not on the growth chart for his age, it's like an inch below it. He hasn't grown length wise since November and he's now in the 75%, whereas he wasn't on the chart (really tall) before. We talked about oral feeding and talking and how once he starts eating orally, she thinks he'll start talking. She said that once he gets nutrition in him, his cells will "wake up" and his brain will tell him to start putting things in his mouth to feed the "machine". Nutrition also means more energy with (hopefully) more of a desire to play and walk, a chance for his brain/intelligence to develop and his kidneys to improve. Her goal is to have him at the 50% in weight within 3 months, fully healthy (where his body has replaced what's been taken from other places IE: his bones) by one year. Ultimately, she would like to see his height back above the curve for his age and his weight around the 75%. Hopefully, it's nothing more than an oral aversion which she said, she thinks he'll outgrow around three yrs old.
 His time in the OR will be about four hours. That's a long time to be out without needing to be intubated. I would be lying if I said I wasn't nervous. He's going to have the g-tube placed, the GI scope, an eye exam to see how bad the permanent damage is from his corneal abrasions, his one year biopsies and possibly the lungs and airways scoped.
  Well, that's all I've got for now. I need to start getting things ready for tomorrow. We have to be at the hospital at 5:30am and it's across town. Booo! :) I love sleep. Oh, how I miss it.
  He'll be admitted after surgery so I can try to blog more tomorrow. Please pray for our little man. Thank you all for your support!!

The Internet was SUPER slow at the hotel and I wanted to post pictures along with the text, so I waited to  post this. Big mistake because I fell asleep! Anyway, I'm at the hospital now. Daylon went back at 8am and everything was set up. So far, only the eye dr. has come out to say that there is permanent scaring on his eyes, but they are still working. That was such a relief! Let you all know more later...


Anonymous said...

Our Thoughts and prayers are with Daylon and you thru all of this. Hoping things will go well for the little Superman. I put his name on the prayer roll lastnight at the LA Temple. We have been praying faithfully for this little guy. He is such a sweet baby and we love him and all of you so much. Jen, you must be exhausted, hopefully things will go well and you will be able to get some rest. We visited with your Mom, Dad, Emily, Brian and the kids on Sun evening. What a wonderful family all of you are. What an inspiration to all. Hang in there Baby Daylon, Heavenly Father is watching over you and loves you very much. We will be anxiously waiting to hear more later and hoping things went well. Hang in there Jen, Take Care, God Bless. We are here if you we can do anything.

All Our Love;
Myrna & Dwight CA

Jan's Blog said...

Wow, I'm exhausted just reading about your schedule. There's lots of good news but a long way to go...but all who love you and Daylon and all your family are in it with you for the long haul. Sending prayers and hugs and love, Jan