Wednesday, February 2, 2011

UPDATE


Daylon and Papa
 Hey Everyone!
Just a quick note to let you all know that Daylon is out of the hospital. The bacteria in his PICC line cleared up and we were free to go! Thank goodness that's over with! Round one million in the hospital and Daylon wins again!! Woo-hoo! All seriousness though, the Oncology ICU (aka in MN: BMT unit) staff was wonderful and super considerate of Daylon and all of the difficulties that are presented with tending to a patient you can hardly touch. His right arm pit is the only injury from the hospital stay (one nurse forgot to use aquaphor when taking a temp. and then pulled it out instead of lifting the arm first. She forgot...it happens), but all and all, it went well. :) The sent him home on a strict Vanco lock regimen and IV antibiotics twice a day. Kind of a pain, but hey! It's worth it, if we all get to be at home as a family and Daylon has a healthy PICC line, right?

This is Daylon.









Daylon hates to be bored...apparently...so he thought he would spice things up.

What? Was he not there for the last 18 months?!? They're spicy enough, Little Man.

While I packed our diaper bag for dialysis, Caleb followed me around the house saying, "Mommy, Daylon broke his milk". Yes, I stopped and looked up at him, but everything looked fine, so I kept working...besides! How can he brake his milk? Once he started to raise his voice, I decided to go back.

 This is what he meant:


He pulled his entire PICC line out. Stitches and all. Nice.

I got the bleeding to stop and spent the next hour in a frantic, wondering to do with a gaping whole in my son's arm. Good news is: no more TPN!!!
 The bad news? Daylon has a high caloric needs for his age courtesy of the BMT and EB, a low mineral requirement (renal failure), however his phosphorus and potassium are dangerously low, low protein requirement (renal failure again), is unable to swallow anything thicker than...well, let me just say he chokes and gags on pudding (mass on the tongue), can't chew (head bleed), and throws up ALL. THE. TIME.  Needless to say, this has been a trick. Every morning I blend things like avocados and whipping cream and Suplena (high cal, renal failure milk) and strawberries together. It's been...interesting. Some potions he likes, others have resulted in instant vomiting. Live and learn, right? :)

mac'n'cheese shake (made with whipping cream instead of milk)
 There's one other catch in the "weight issue". Since we've been back in CA Daylon weight has slowly and steadily dropped from 14.2 kg (his dry weight) to 12.2kg. That's 4.5 lbs. Come to find out the prescription for his TPN in CA has had 660 cal, which is less than half of the calories he needs. We just found out this week about that, but it's nice to at least know why his weight was dropping. On Monday at dialysis he weight 11.9kg, but they filled him full of fluid and we left with his weight at 12.8kg. We're hanging out right now without the PICC because despite his weight loss, his labs look better than they have since transplant. Woo-hoo!
 We went to the ENT doctor today and he said that the growth does not like it's cancerous, but they'll have to wait until the results come in to know for sure. He needs to have the entire growth removed and it will more than likely grow back, but it's growing too fast not to come out. He will need to be intubated and will probably spend a few days in the PICU afterwards. He said that Minnesota might be best for the procedure, but he could do it if we choose to say here. Brian and I are really leaning towards Minnesota, but it will all depend on what Dr. Tolar says. I'll keep you posted.
 Now I'm not one to post naked bath baby pictures, but I had to show off his amazing skin!! Oh! Did I mention he actually took a bath with out shedding a single tear? Yep. See, it's moments like that that make this all worthwhile.




 One last bit of good news. We were FINALLY able to tapper off Daylon's CSA (it lowers his immune system to decrease likeliness of CSA, but thrashes the kidneys, makes you hairy, nauseated, and your gums swell) on Sunday night!!!  We are praying so hard that in a couple of weeks Daylon's kidney function will completely return! We have been so excited for him to be off the drug since July and it's here! After his last dose Brian and I "high-fived" and tossed that bad boy in the trash!

  I need to head off to bed. Good night everyone. Thank you for your patience. I'll try to post more frequently. :) We love you!

Keira's first day of Kindergarten in CA (at my old Elementary School!)


On Friday my brother flew down and we got the okay to take Daylon to a non-crowded beach. He can't touch sand or the Ocean, or be in the sun, so needless to say this trip was a quickie at night. Come to find out, the privacy was pretty easy. There aren't a slew of people who go out for a wienie roast in January when it's in the low 50s. Shocking. We sure had fun though! It was Daylon first trip to the beach ever!


note the lighter fluid in Jonathan's hand

fluid in flames


...and this one because it's fun and crazy like Daylon
  On Saturday the Corona Fire Fighters invited our family to come down to the station for a tour and visit. Our family just loves the fire fighters in our area. They have been so wonderful and sweet to Daylon and our family this last year. Before we left for MN in May, 30 or firemen came to meet Daylon so that if we ever had to call for emergency help, they would know him and his situation. Pretty nice, huh!
 of course the kids always love testing out the fire fighter stuff too!






The only time our girls have ever been twiners

11 comments:

Anonymous said...

We are so happy to hear that baby Daylon is out of the hospital. His skin looks good. The pictures are adorable, he is such a little ham. Looks like you all had a fun time at the fire station and the beach. What a wonderful loving family, you are such an inspiration to all. Our thoughts and prayers are with Baby Daylon and all of you. Hoping things improve for Baby Daylon. Hang in there Superman and show them what you got. Keira looks so cute on her 1st day of Kindergarten. You have such beautiful children and you are such loving and caring parents. Your parents are wonderful and such a blessing to all of you. Take Care, We Love You and hope to see all of you real soon.
Give all the kids a big hug for us, they are so precious to us. God Bless.

All Our Love;

Myrna & Dwight CA

Jan's Blog said...

Daylon's skin looks so good, and his beautiful face makes me cry. Despite all the bumps in the road it seems he's doing better all the time. Heavenly Father must be so proud of how you and your family take care of His children. With all you must do with and for Daylon is amazing that you make sure all the children are so loved and cared for and made to feel special. Of course I don't know you for them, but one needs only look at their faces to know it's true. Thanks so much for your update. Sending prayers and lots of hugs for everyone!!!

Mom to Many said...

I am so glad to see Daylon not shed a tear for a bath. Baths are wonderful.
I am so glad to see he has triumphed again.

My 5 year old has been quite concerned about Daylon. He asks about him. He was glad to see pictures this morning and see him doing well.
My little guy makes me smile.

I hope and pray Daylon can adjust to his blended potions. Not being able to swallow is a really difficult problem. We have a family member that eats A LOT of high calorie ice cream because of a swallowing problem. Lol.

Glad to hear from your group.
Don't stress about posting too often. The "team" appreciates updates when they come, but no stress. :o)

Cheryl

Anonymous said...

Will keep praying. You keep posting those bath pictures - that skin looks so good. Hope you give it lots of Mommy kisses.

Greg and Melissa said...

Daylon looks amazing! He looks so much better than Luke...we are having a tough time with rapid blistering everywhere but face and arms. Glad you all are home! He is precious.

Melissa and Luke, Houston, TX

Anonymous said...

Amazing post. You take things in your stride so well and Daylon seems to as well. He looks gorgeous and more and more like his big brother (who is gorgeous too). Your amazing family is so inspirational. Daylons skin looks gorgeous and it's so wonderful he had a tear free bath (as it should be :).

Keep posting. Hoping the lack of CSA will heal his beautiful kidneys too.

XOXO

Annalien said...

Thank you so much for the update - I love hearing how Daylon and the rest of you are doing and I am so glad that it is mostly positive news today. I continue to be amazed at how you handle five children with Daylon's special needs thrown into the mix. You are such an inspiration.

I will continnue to keep Daylon in my prayers. God bless!

LONNI MOORELAND said...

It is really good to read your update. Daylon's skin looks so good! Thanks for sharing. I hope things continue to progress!

We too will keep him and you in our prayers!
Lonni

Bella's Blessings said...

LOVE all the news, the good and the challenging! Daylon looks SOOO good. We're up in MN right now... LOTS OF SNOW! It is beautiful. We would love to see you guys when we get home! We miss you and love you!
Tim and family

Anonymous said...

Just wanted to say that we have kept Daylon in our prayers. We know it's hard to post often. He will continue to be in our prayers. His skin looks great. We are praying for good kidneys at the moment. We are also praying for his tongue to get back to normal in the best and easiest possible way.

Huckleberry said...

What a Great time we had when you visited Ladder and Engine 7. All the guys loved having your family by and playing around with the kids. Tell Grandma the cake was awesome! and gone by the next morning. The Department is always thinking of Daylon and your family and asking for updates, They are all amazed at how tough he is and is continued successes..He is in everyones prayers..Take care Edling Family

John