That's right ladies and gentlemen! I held my son!! The pictures aren't the greatest, but in my defense it was 3 in the morning! :) Anyway, I absolutely love that we can hold him now, even if it is in small increments. As I mentioned in the last post, Daylon's lung collapsed a few nights ago and then perked back up. On Wed. night his chest x-ray showed that his lung had collapsed once again. The newest members to join the "Daylon Edling Care Team" is Pulmonologist crew. They have become MVP players around here lately. Not a chatty group though. Whatever, has long as they get the job done. So, they added two new meds to the nebulizer treatments to help induce a cough. That's where the holding comes into play. He gets the treatments added to the nasal canula, while we hold him. When they're finished, we do a little pounding session on his back ( I know, not good. The kid needs to breathe though and they're softer than the normal BD) and then RT does a deep suction with the Red Robinson through his nose. It's not pleasant but it helps. Last night's x-ray showed the lung was up! Hallelujah! He's still SUPER junky and needing to take body moving breaths to breathe, but he's blood/oxygen saturation in 100%. Actually, even with the collapsed lung it was 100%. This kid is amazing. He's fightin' this for all he's worth!
Dailysis hasn't been very successful. Today they got 400cc off which is not much compared to the 1400 they were once getting off. Today there was talk of moving his dry weight (natural weight) because he hasn't budged in 2 weeks. It has been a while since they got that weight, so it's time.
Today Daylon also had surgery to replace his g/j-tube. It's just a temporary fix, but the good news is they did it without needing to reintubate him!!! Woo-hoo! Unfortunately, the button is gone and this honking tube is in it's place. When he gets the real surgery they'll put the button back on him.
One last bit of Daylon news: Houston we have sound! We heard a teeny tiny little cry nose for about, well, maybe a full second when he was being deep suctioned last night! I'm am sooo happy he has his voice! I was beginning to think it was permanent!
Today is Brian's 30th Birthday!!! We opened presents and then grabbed some sandwiches for a picnic. We went on a mini hike (my mom had us in stitches the entire way with her complaints of how she's too old for these steep of hills) and had a picnic up at the top. Afterwards, Brian and I went back up to the hospital to spend some time with Daylon. Tonight we have more family plans which I will not mention since he will read this before it happens! ;) Here are some photos from today. PS- I messed around with some of the last photos with this free 30 day trial download from Corel Pro X3. Check it out! It's sooo fun!
BIRTHDAY BOY!!
Happy Birthday, Brian!!
15 comments:
Happy Birthday Brian! Hope you guys have fun celebrating tonight - you deserve it.
So glad you guys finally got to hold Daylon! I'm in awe at how much fight he has in him.
okay, how do you do it??? You take the MOST AMAZING PICTURES when you guys go out on your hikes! They are seriously timeless and jaw dropping in their beauty! Nice work with Corel, too! Okay, back to Daylon! YAY for holding him again, and yay for sound!
Happy birthday Brian. I am glad that you got to hold Daylon. The picnic pictures look like it was fun....you all need a little fun.
Our prayers are with you.
Happy Birthday Brian. It sounds like you had a wonderful birthday. I'm so glad to hear Daylon is still doing so well. He is such an amazing child of God. And Jen, I'm so happy you finally got a chance to hold your precious baby again. It's been too long. I don't know where you find the strength to endure this trial here on earth. You are an amazing family. Prayers are still being sent with faith in a full recovery. Stay strong.
Take Care,
Amber McLaughlin,CA
So happy to see you holding Daylon and to hear that he is making little sounds and that his lungs are improving! All great news. And Happy Birhtday Brian!
Happy Birthday to Brian! So glad you're all able to have some nice family time together. The pictures are beautiful. Especially glad to hear all the good news about Daylon's improvements. It's inspiring to see all the miracles and blessings that Heavenly Father is sending your way. Lots of love from the Nielsens.
What a family you have. What beautiful pictures of your wonderful family.
You and Daylon look good too. You look so happy just to hold your baby again. He is truly amazing. You are so blessed.
Will continue the prayers for Daylon and you guys. Keep the FAITH.
Happy Birthday Brian!! Take care guys. Love Leah's Nana
I am so happy for you! Go Daylon!
Now to go back and read what I missed while at girls camp.
Happy birthday Dad!
Happy birthday Brian. Yeah for being able to hold Daylon. :) LOVE the pictures you take...what kind of camera do you use? I have Corel and love it. I got it off e-bay way cheaper than in the store. :)
Denise WI
The last picture is amazing! I'm so glad your son's voice came back. I knew it would, he's such a fighter =)
You are seriously glowing with happiness that you got to hold him :) I'm so happy for you! And Happy Birthday BRian! 30 is great! Daylon has got to be one of the strongest willed children around! Heavenly Father truly saved the best for last!
Jennifer, i want you to know that i check your blog everyday and it gives me such strength. I hope you know that you are a hero in my eyes and i look to you for strength and comfort. That may sound weird, but life has been a little hard lately and i love that i can read your blog and instantly be comforted. So Thank you for being a shinning light to us all!
-Rachel Kirk
Happy birthday to Brian. I am so glad that Daylon is doing better and that you can hold him. It is wonderful that your mom can be there too. I love the countryside where you are staying. California is going to seem so brown when you go home.
Have been following your story from day 1 and am impressed by the strength you all have. A beautiful family and a great challange to overcome. Little Daylon is in our prayers and thoughts. May you always recieve all the choice blessings that are in store for you all from our loving heavenly father. Kristin
So THRILED you got to hold your son!!!! And YAY we have sound..that is awesome! Daylon is Deff a fighter!! Hope Brian had a wonderful BIRTHDAY and I love the pictures you posted:) I am so happy things are slowly getting better!!! You guys are so blessed and Heavenly Father really has a hand in this : ) HAVE A GREAT DAY!!
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