Monday, February 21, 2011

Day +200 and something...

  You know how they say that you can't miss something you've never known?

  They're wrong.

  Tell that to Daylon. Let me explain:

  These days, I'm no longer worried about Daylon dying any time soon of EB. Instead, I'm worried about him dying of malnutrition. We are seriously at a cross in the road when it comes to his eating, only to find that there is no more road.

  Really quickly, we're back from Minnesota. The recovery has gone great and his mouth never did get any blister in the hours following the surgery.

  Okay, so back to the eating situation...Daylon is gradually dropping a tenth of a kg every four days which probably doesn't seem like a lot but it is. His dry weight (what he should weigh) is 31.24 pounds. He now weighs 23lbs. Did I mention he's over 3 feet long? Just looking at him, he looks okay because he has a bigger head but once you lift his shirt! Wow-wee. He is literally transparent skin and bones. Dr. Tolar was all smiles and playtime with Daylon until he lifted the blanket and then he just looked at me and said, "Oh, no. We've got to fix this."
  I spoke with the nutritionist and got a recipe for pretty potent formula but the only problem is, Daylon is refusing to eat. Like clamped down, shaking his head from side to side, kind of refusing to eat. The last two days I've actually had to resort to pinning him down and syringing formula into his mouth when he screams. It's awful. Not to mention his poor skin isn't handling it either. He's been this way for the last 2 weeks or so and it's getting worse everyday. It's like he's just lost the desire to eat. I'm having flashbacks to the first several months of his life. Ugh.
  The funny part about it is he does seem to show some interest in "real" food and drink though. I don't get it. He's NEVER had real food before. Pre-transplant over ripe bananas and egg noodles gave him a blistered and bloody mouth, so most foods were automatically out based on texture. Because his GI and urinary tract blistered so easily he couldn't have anything acidic (juices, tomato sauce, etc) or else he had blood in his diapers and a VERY upset tummy. Seriously, he has no clue what food taste like. Ha... and he wants it anyway. I would be willing to try it out, but ever since he woke up from the coma he has not been able to chew and has difficulty just swallowing and breathing at times. I tried giving him refried beans last night and he was willing to try it, but choked and gagged and then puked. He has the world's easiest gag reflex too, which isn't helping anything. I will say though that once the doctor added the third anti-nausea med, his everyday puking has gone way down.
  Naturally, putting in a G-tube again would be the next step but he's no longer a candidate for a g-tube. They feel that his skin can't support the constant friction and the catheter and trauma that's caused by the tube being there will make his nausea worse. I gotta say, I think so too. The next step is to put in another PICC line and start him on TPN again. The reason the doctors have been trying to avoid that route is that TPN has significant side effects when on for an extended period. It's supposed to be a resolution that can last a couple weeks until nutrition picks up. Daylon's been on it for months. We'll see what the doctors say tomorrow, but I have a feeling that he'll have to go back to a PICC. I really don't know what else to do. I'm traumatizing my poor baby and he doesn't even want to be around me the last two days because I'm constantly trying to get him to eat. By the end of today; he was crying, I was crying and he had eaten 11 oz for the day. A far cry from the 34 oz minimum that the nutritionist set.
  Please pray that Daylon will have the desire to eat and I will be able to think of a way to get him all the nutrition he needs to be healthy and quite frankly, live.
  That's all for tonight. I'm mentally drained and I want to sleep. Tomorrow I have a 10 am appt in Irvine and then dialysis at 12 with all five kids in tote. I gotta say, I'm not looking forward to it. Oh well. At least we'll all be together. That's about 20 steps of improvement from last week and 1600 mile distance between me and my kiddos. Keira doesn't have school tomorrow either and that's a huge plus. Just looking for the lining. The blessing are always there, sometimes I just have to make myself look for them.

  PS- We had some time before church. Pretend like we weren't surrounded by cars and houses. :) Here's how we entertained ourselves:















After looking at these pictures, I am reminded that I have so much to be grateful for.

Good Night.

13 comments:

Gilda said...

Keeping Daylon in my prayers.

Anonymous said...

I will continue praying for Daylon...you've all come such a long way. I have such admiration for your family...the strength you've shown thru BMT (and aftewards) is amazing, and Daylon is a little miracle. Prayers for continued healing, and successful resolution with his eating problems. God bless you all.

Donna Tadlock
Millbrook, AL

Lisa said...

It's like I can feel your worry...I'm thinking of you, Daylon, and the family often. Hoping for the eating to move in the right direction this week!

Anonymous said...

I don't know if Omegaven ( http://grey.colorado.edu/shortgut/index.php/Omegaven ) is an option for Daylon but I know it has been very successful when used as TPN in patients with 'short gut' - preventing the liver problems from regular TPN.

Amy said...

Still saying a prayer every day for Daylon.

Anonymous said...

I'm praying for your family and Daylon. I think that every time you post for a specific request we all get on with praying for that and we have been able to overcome all obstacles through the united prayer. We will over come this one. Getting everyone I can to pray along with me.

The McLaughlins said...

I am so sorry to hear about his eating issues. That's terrible. I will definitely include in my daily prayers that Daylon's appetite increases and that you can have more success with his nutrition. I know you are trying your best and that's all you can do.

I'm so glad to hear that he didn't develope any blisters after his surgery and that you guys are back here in California. That is great news.

The pictures of the family are awesome! Your children are so beautiful. You and Brian are very blessed. Daylon is looking so much more like a toddler and less like a baby now. It's amazing the transformation he has made. He's so handsome!!

Lots of Love,
Amber McLaughlin, CA

Anonymous said...

Sending more prayers for Daylon and all of you. Praying for him to have a desire to eat, safely.

Mom to Many said...

I just don't even know what to say.
All I can draw on is the worry that I felt when my preemie would not eat. It went on for 5 years. But, it was no comparison.

I remember how worried I was when he was eating fewer than a dozen foods at age 5. But,it was still nothing in comparison to what you are dealing with.

As a mother I feel great empathy for your situation. I will be praying.

Cheryl

sharon kaye said...

Jennifer, you are one tough lady. That is so hard to have to force Daylon to do something that you know is good for him, but that he hates. We are praying that he will want to eat. Your children are all beautiful. Thank you for the wonderful pictures. Let us know how things go at your appointment.

Anonymous said...

So gald you are home now...hopefully you made it before our latest MN snow storm! What wonderful pictures! I remember how Molly loved watching your girls play this summer in the play rooms and outside at RMH. I'm also envious of your beautiful weather! I'm praying that there is a solution to Daylon's eating issues, without having to tubes, etc. Take Care!

Julie Williams
Foreston, MN
www.caringbridge.org/visit/mollywilliams

Anonymous said...

Jen; Sure glad you and Baby Daylon are back in CA with the rest of your Family. Sure hope that things get better for Daylon with his eating and he doesn't have to have those tubes again. He is in our thoughts and prayers daily, as are the rest of your family and kids. What beautiful pictures of the kids and of course of Brian too. What a beautiful family and you are so blessed and your children are so blessed to have you and Brian for their parents. What a loving and caring family. We Love All Of You and are praying that things will go well. Can't wait to see all of you again. Your children are so precious and we love them as if they were our own. Jennifer you are such a tough woman for all the things you have been and are going through and you have such a strong bond with Brian and your children, You are truly an eternal family. Such an inspiration to all. Take Care. We Love You. Give the kids a big hug and kiss for us. Hope to see you soon.
Hang In There Baby Daylon, you tough little cookie & Superman, you are so amazing.

All Our Love;
Myrna & Dwight CA

Linda said...

Hi Jenn: Just checking in to see how that beautiful family of yours has been doing. Sorry that Daylon is having an issue with eating. Praying that Daylon starts eating and gaining some weight.
Hang in there, you do have many blessings. Your family is just beautiful and the pictures, as usual, are wonderful.
Keep the Faith. Love and Peace Leah's Nana