Wednesday, June 30, 2010

Day +6: Sleep baby boy

First off, I want to apologize for not writing sooner especially after such a scary post for our last entry. I have legitimate reasons, but who wants to read a bunch of excuses! So....
Overall, Daylon's life has been better since he's been on the ventilator. They can give him as much Morphine as he needs without any worries of him not breathing since a machine is doing it all for him. They can gauge it off of pulse and blood pressure. There was some concern yesterday that the mucositis had traveled into his lungs. Today, however, things are sounding better and since that kind of swelling can't go down in a day, his lungs probably aren't involved. Whew! We were pretty nervous about that! Daylon gained almost 2 lbs yesterday and his poor little body was blister central!! He's lost 1/2 lb. today thanks to a new diuretic that has been added to his towering IV stand. Hopefully over the next several days will see regular Daylon appear! He's not blistered today nearly as bad as yesterday so that's wonderful news. His heart rate is in the 120's at the moment from the high 160's yesterday. He had a Vac Holiday today (were they turn off the meds. to see how long it takes him to start to stir) and he started to move an hour in. That's just where they want him! More good news you ask? Why certainly! His fever is FINALLY being managed by the Tylenol!!! He's at a cool 99 degrees right now. I wish they could have given him Motrin, but apparently it lowers your platelet count so it's out for the next two years! Yikes. I love that stuff! It's the anti-fever's best friend. Today has been a great day for Daylon! What a blessing not to see him suffer and to feel a day were you can breathe a sigh of relief.
Brian and I are dealing with the situation fairly well. Of course, days like today make it easier. I know it might sound crazy but I do miss him. I'm sitting 18 inches away from him for hours on end and yet when I go to sleep I can't help but feel like I haven't seen him in days. This coma thing makes him physically here, but that's all. I can't wait to hold him. Today when I went home to the RMH for a quick sec. I ran into Cowboy Danny's parents (a little boy a few rooms down with cancer) and they asked after Daylon. When I returned the question they told me that their son had just passed away. There's so much hope here at such a wonderful hospital, but inevitably, there's also death. They told me to tell Daylon to "fight and never give up". The mother also advised me to take advantage and hug and kiss each of my kids goodnight. When I returned to the hospital I wanted so badly to pick up Daylon and rock him, but for now, that will have to wait. We are blessed to have enjoyed our day with our son.

I've really felt guilty the last week that I've spent so little time with our other little guys. I've felt like I couldn't leave Daylon for fear of something happening. Yesterday, Brian encouraged me to visit with the kids in the afternoon. I planned out a picnic at Lake Calhoun. The kids and I had such a blast! It's one of several lakes around here called the "Ring of Lakes". We had a picnic, they played at the playground (a cool boat shaped playground that the kids went nuts over!), and we dipped our feet and splashed a bit in the cool water. Afterwards, we went for a walk around part of the lakes. What a view!! Minnesota grows on me more and more everyday. It's such a beautiful state! There were tunnels and rolling grassy hills, flowers and sail boats everywhere you look. Very picturesque. We just wandered around enjoying nature and each other. Moments like that with my kids makes my life feel so full. Daylon and Brian being with us would have made it absolutely perfect. Things to look forward to, right? On the way home the kids and I were listening to the radio and a favorite song of theirs came on. I looked in my rear view mirror to watch their four little heads bobbing along and rocking back and forth as they belted out "Soul Sister". Those four little voices reignited a part of me that had pretty much burned out over the last month. So, I did what any parent would do: I turned it up and sang along. Life is good.



























22 comments:

Brooklynne. said...

SO HAPPY THAT DAYLON IS DOING BETTER!! I KNOW IT HARD BUT YOU EDLINGS ARE THE STRONGEST PEOPLE I KNOW. DAYLON WILL FIGHT AND HE WILL WIN!! DAYLONS KNOWS EVERYTHING THAT IS GOING ON AND HE FEELS THE LOVE FROM YOU, BRIAN AND HIS SIBLINGS AND THATS WHAT KEEPS HIM GOING. IT TOUGH RIGHT KNOW BUT THE OUTCOME LATER IN HIS LIFE WILL BE GREAT, AND THATS WHY HE'S THERE, TO HAVE A NORMAL LIFE. I HAVE TOTAL FAITH AND IM PRAYING EVERYDAY!! KIERA, CALEB, SADIE AND VIOLET ARE GETTING SO BIG!! I MISS YOU GUYS! DONT WORRY THAT DAY WILL COME WHEN ALL YOU GUYS INCLUDING DAYLON WILL HAVE THAT PINIC. SEND MY SYMPONY TO "COWBOY DANNY" FAMILY, HE FOUGHT AS HARD AS HE COULD AND HE WILL ALWAYS BE WITH THEM!!

MrsG said...

Sending all of our love and support from Sweden. We pray that Daylon is going to beat the terrifying EB and get well soon. Kind regards the Seger family

Pati @ A Crafty Escape said...

Glad that your sweet baby boy has been able to take a "break" from the pain. May this be the chance his body has needed to recover. I'm glad you were able to spend some time with the other kids. Hugs and prayers from Southeast Florida.

Linda said...

Hi Jen: Thanks for the update. I was getting a little worried. So glad that he is still getting the rest he needs to heal. I know it must break your heart to see him like this, but just think of the happier days to come for your family.
Take care and God Bless. Love Leah's Nana

jeanine said...

I'm so glad that you got to get out with your other kiddos. Sounds like it rejuvenated you... we all need days like that!
And glad to know that Daylon is doing better!

Patrice said...

Glad to hear that Daylon's fevers are better, the blistering is down, and he's getting to rest through it all and have LOTS of pain meds. I know what you mean by missing him. Even watching Jonah go under anesthesia for his g-tube surgery made my heart ache to see him "go". I can't imagine days and days of not interacting with him. My heart aches for you. I'm so glad you got to spend a great afternoon with your other four though. It sounds like it was much-needed and refreshing. Glad you're able to smile some through the CRAP. Still praying for and thinking of you guys all the time.

Amy F. P. said...

Your kids are so precious. I love those pictures. It's so good to hear that Daylon is doing better. We have been praying for your family and the doctors too. Thanks for all the updates. Remember to take care of yourself too.

sharon kaye said...

I'm glad Daylon is doing better. He deserves a rest. Modern medicine is wonderful. What a wonderful day you had with your other children. The lake reminded me of the lake by our house. Somehow it just uplifts your spirit to be in nature.

Jan's Blog said...

Thanks so much for the updates. I live for them. I'm SO glad you had an afternoon with the other kids. You are handling this all so very moterly like. You have a blessed family and Daylon my provide the greatest blessings of all. He, and you, are always in my prayers.

ANewKindOfPerfect said...

I'm relieved to read that Daylon is resting peacefully and they are able to control his pain and fever.

It looks like your other kids enjoyed the day with you at the lake. How great that you were able to get away and have that time!

BRIAN AND BROOKE said...

If we could all live each day to the fullest like you, and cherish the small moments!! Its so easy to get caught up in life! What a great example you are!! Sending prayers and the Lord is blessing you and your family everyday :)
and THANK YOU so much for taking your time and updating your blog!! I love reading about Daylon and your entire family!!

The Cohen's said...

I am praying so hard for Daylon and for you. I'll be honest and tell you that I couldn't get through the first 5 days of his treatment posts... I was to choked up. But, I'm glad I read this update. God will keep him safe and heal him, I have faith.

Anonymous said...

Hoorah! I am so happy for some good news. So sad about the parent's that lost their child. Like you said...there are tough times too. I had been so emotional your last few blogs and really feel like you are so connected to each and every one of us that reads the blogs. It's amazing. I will continue to keep you all in my prayers. God is good, all the time. Love- Sara

Anonymous said...

God is good all the time...AMEN! I am glad to hear your son is doing better. I have been following Daylon's progress through Bella's blog. Your family is so strong and couragous. We pray for you all and hope that you know there are so many people out there that do not physically know your family but spiritually we are connected. Stay strong and fight this battle!!!! We are praying for you- God bless you all.

Mom to Many said...

I ran and showered after I read your post, but had to come back and comment.

We spent long weeks with my brother in a versed coma 14 years ago after his body was burned over 75%. (These events in company with our having had a preemie 8 years ago are why I am drawn to your blog. Your heart is never the same again. You gain depth that you never knew you could have.)
I remember watching mu brother and my mind did strange things. I know what you mean about missing them. (In our case the only thing I could recognize were his feet because of the burns and the swelling. (His feet were comforting during that time.) The versed is a kindness to them. A gentle nap.

Do hug your babies, but don't be hard on yourself.
You are missing some time with them, but it's alright. Don't beat yourself up later (or now) over it. You are doing the best you can. What you did at the park was important. The pictures are important. But, I speak from experience here the guilt does not do you or them any good. You are one woman and you are doing what the Lord has asked you to do in raising these little children. The Lord knew this would be hard, but he lovesDaylon and the rest of your family so much. Daylon will thank you forever for what you have done for him. I am so thankful for my knowledge of the gospel and for my knowledge that what we are doing here on the earth is so much more than our physical eyes and flesh could possibly understand without the gospel.
D&C 121:7
My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment;
http://scriptures.lds.org/dc/121

I know that so many are praying for you and Heaven hears you. Your tears are being counted sister. Not one goes unnoticed. I promise you.

Much love,

Cheryl

Patyrish said...

We are praying for Daylon. I am glad he is sedated and resting now. He sounds like a fighter and he will pull through all of this.

Will keep your family in our thoughts and prayers....Saving your blog to my list :-)

Sasha said...

Prayers for you and your family.

Your story is special to me- my FIL is having his bone marrow transplant today, as I write, to hope to cure his leukemia (CML). He has been doing chemo and radiation in preparation, and today is his Day 0. Modern medicine is amazing and I grateful BMTs as possible. Hugs to you!

Anonymous said...

My prayers are with your family and Daylon. I am Bella's Grandma and I send you my love. I am following your journey closely and pray for you daily.

Carolyn

Bella's Blessings said...

Yay! Thank GOD for good days! What precious pictures! GREAT camera, too! So glad you got to unplug from the hospital and plug into your other kids. Good medicine. So sorry to hear about Cowboy Danny. Ugh. That must have been an intense moment. Glad to be walking this journey with you guys here. It would be so much harder alone. Blessings, Tim

Anonymous said...

Hi Guys,

I have been following the Blog for the last couple of weeks, here in Canada we have no treatment like this, our litte Girl Has the same Subtype as Daylan but the Sub Sub type is LOC, there are less then 30 Kids in the whole world with this Subtype, I read the blog and it bring tears to my eyes just think about the similer thought and actions that we both are going thro, We just started the paper work for our little one to go to U Of M for the Stem cell treatment, as you know, there are hundreds of Qu going into of heads.

i understand the stress and the worries that you guys are facing, remember GOD !! Pray and beg for health, He will give

May god bless you and your family, This is a prayer form one family with a sick child to yours, God will give

Looking forward for more update, and a speedy recovery.

Thanks

Yasser

y.ahmad@telus.net

Anonymous said...

As I pray for your family, I cannot imagine how each of you are doing. For each of you I lift up a pray for healing and safety. sg from Kansas

Debbie said...

What a beautiful day at the park with your beautiful children! Amidst pain and suffering, there is also so much joy and love. So glad baby Daylon is doing better today...keep fighting! You'll get to hold him again soon.