Wednesday, August 18, 2010

Day +55: just thinking out loud

Daylon laying on a new blanket to help with his fever and his nurse, Rich plugging in the blanket

I know this is a blog that is open to anyone in the world that wants to read it and I think about that a lot. I decided to start this blog to keep our family and friends in the loop (because to be honest, I hate repeating a horrific story a thousand times with that burning lump in my throat. Not to mention, I'm not exactly an open book.) but it's become a therapeutic journaling session for me too. The thing is, I have to force myself to be positive because I know our moms and aunts (and Daylon's aunts) are going to read the post, and I hate when they cry. If I didn't blog, I would sit here and worry about the worst possible scenario and feel trapped by this tiny dungeon that is room 403...I'm a mom. That's what we do. We all have doctorates in "Worry and self guilt". It may take me 3 hours to finish my post, but I will see the light at the end of the tunnel, and I will hit the "Publish Post" button feeling better about life. So, that being said, I have a feeling that tonight's post will be a bit of a ramble, but no worries. We're still hopeful and things are still good. My mind is so full of thoughts and I'm unable to organize them. I'm just going to let them bubble over the top and spill out onto the keyboard. Hope it's not too dramatic.
OK. Here we go....
Today was a crummy day. Wednesday was supposed to be our big moving day back to 5D, but that's not happening. The past two days after dialysis Daylon's heart rate climbs and climbs and his blood pressure just falls and falls. His heart rate will just hang out in the 180s (instead of 110s) and he's needing 2 blood pressure meds to help keep his blood pressure up. He's also been running fevers from 102F to 104F for 8 or so hours after. Question: How do you go from a 103F to 98F just because?...for several days! Not one single blood test has come up positive for a bacteria or fungal infection. What gives? No one has any clue what is going on. He's on 4 antibiotics and it's the same thing everyday. So weird. Plus, in the last 36 hours he has had huge out-of-diaper diarrhea episodes. The kind where you have to change out bandages and linens. Not fun. Anyway, he's requiring one on one attention from his nurses, so we'll have to hang out on 5C a bit longer.
This blanket has temperature regulated water being pumped through it to help lower Daylon's fever from 104.2F

Today we also found out that our stay here in Minneapolis, will be for quite some time. Our day 100 is October 2. Providing Daylon is in good health, day 100 meant "Good-bye, Minnesota!"! Well, the BMT doctor today said that she thinks that quote: "Maaaaaybe you guys can go home in time for Christmas. Dr. Tolar is very conservative though, so who knows.". Oh. My. Goodness. That one felt like someone hit me with a pillowcase full of bricks. Minnesota is great and we absolutely love the Ronald McDonald house, but I want to go home. I want to go back to real life. I miss my crazy, run around town with five kids who need a nap in tote life. You wanna hear something crazy? I miss palm trees. I love these gigantic mature trees up here, but those ugly ol' palm trees mean 'home'. I know this is becoming a rant and I'll stop soon, I promise, but! DO YOU HAVE ANY IDEA HOW COLD IT GETS UP HERE!!!!? I've had nurses tell me -40! How am I...what will we.... I just...ahhhh. Idaho was -20 and it was painful (literally) to go outside to get the mail without 5 layers of clothes. I can't even imagine. You'll hear more about this in a few months. I guarantee it. :)

Lastly, things are weird with Daylon. I know he's on a lot of drugs still for sedation and pain, and from what I hear, he's still got a ways to go before he's off. He's also going through withdrawls and recovering from a six week muscle sabbatical. Still though, I'm getting worried. Daylon is like a giant limp noodle. I knew that he wouldn't have much muscle control, but he's not even close to being the same kid. He doesn't smile or laugh, he'll stare at his mobile and these little lights we can put on our fingers, but he doesn't really have an interest in toys, and sometimes I wonder if he knows who we are. He stares so much of the day at the ceiling or sprinkler or something. Sometimes I think he responds to Brian and I, but then there are times like tonight where I lift him out of bed for a moment and his head just falls to the side and he stares blankly at nothing. I started talking to him to get him to turn his head towards me (he turns his head all day long, so I know he's capable). Nothing. I stated calling his name. Nothing. One last attempt which was kind of a sing-songie vocalized prayer, "Daylon! I need to know you're in there. Respond, Son.". I'm not sure if it was Daylon taking the 90 seconds he needed to gather his strength to respond or not, but I felt like it was a divine moment. Without moving his head, he looked at me from the corner of his eyes. It was only a few seconds but I really needed that moment of eye contact. I was having a bit of a panicky moment. I've really tried not to think about the what-ifs of Daylon's neurological well being, but tonight I had such a hard time trying to force them from my mind. I think the events of the day just weighed on me and I was starting to crumble. The day was busy and instead of praying for comfort, I let worry fester. I feel that Heavenly Father heard my little prayer, knew what my concern was and answered my prayers. It was a reminder that the road is there, it's just a long one. Once again, this blog has come to my rescue as a therapy aide! Things start to make more sense when I write them out and the blessings of the day become so much clearer.
Thank you for being our friends and readers through all this. Thank you for all of your prayers and well wishes for Daylon! Sweet dreams!


Krus Family said...

If only we could share and help each other in carring heavy burdens. I don't know you or Daylon or your family, but feel so strongly for all of you. I live in Sweden, for the past 25 years, and feel totally inable to do anything for you but, i will pray and hope that you all recieve the greatest blessings from our kind and wise Father in heaven. What is your address, maybe i could send some fun things for the kids. Praying and sending love, a sister in the gospel, Kristin Krus

Pati @ A Crafty Escape said...

I am sorry that today will not be the big day... I can only imagine how hard that must be. I just read Bella's blog and it breaks my heart to hear about two families going through so much. We are praying for your little man and for your family.

Andrea said...

I just found your blog yesterday! I want you to know that I am praying big time for your sweet Daylon and for the rest of your family!! I do not have children with the same disease, but I have had other hospital experiences with crazy diseases, so I understand the emotions you are feeling!!! It is so hard to always be mindful of the blessings, but you are doing a GREAT job!!! Your son is as beautiful as a boy can be!! :o) God Bless!!!

Robinsonfam said...

I check your blog daily and always say a prayer for your family as I'm reading. Daylon seems like such a strong little guy, and you are one strong Mama.

Robinsonfam said...

Cont. from last comment.
and Daddy.

Anonymous said...

Hang on - we are out here praying for Daylon and for you guys! I cannot imagine going through all that you have for your little guy, but I do know that what the medical staff do not understand, God knows. There can be comfort even if there is not understanding.

I was on vacation and was so excited to see that you got to hold your precious son! I've been praying for that very thing. Now, let's pray he gets stronger and that therapy will help his limp little body to get stronger.

I cannot imagine what it would be like to move your family away from the wonderful support system you've had over the last year. I do know that you have a different support system there in MN - RMH, BMT team and God. He moved there with you!!! Also, those of us out here, who have never met you or your family, but love you from afar.

Hope it helps to be reminded that we are out here praying for Daylon, his parents, his siblings, the medical team working with him and that this BMT gives him a chance for a better life.

I'm claiming Phillipians 4:13 for you today:

"I can do all things through Christ which strengthens me."

Kim M
Waterford, MI

Linda said...

Hi Jen: I just wanted to thank you for letting us go through this journey with you guys. Some days are better than others, but please try to remember that there are so many people, who never met you or Daylon, praying for your precious son.
Please hang in there and remember you are not alone in this journey. Keep the Faith. God Bless!!! Love Leah's Nana

Angelique said...

Ugh! Not exactly a banner day on 5C. These kids just can't stand to be apart. Bella has been opening her eyes a lot lately but she mostly stares at the ceiling. It reminds me of how my dad used to look when he was on heavy meds for his RA. So, maybe it's just the drugs doing their thing. Still grateful to be by your side through all of this!

Anonymous said...

A little encouragement... My son went into acute kidney failure when he was 4 years old (e-choli infection that was misdiagnosed). He was in top level ICU for 10 days. After those 10 days of sedation and no movement, he literally had to be taught to sit up and walk again. Physical therapy came every day after for the next three weeks. Air could knock him down, he was so weak. He was not interested in toys. All he wanted to do was lie in bed. Your son has been fully sedated for six weeks, and still is partially sedated. It will take time. He is in there! His muscles will have to be retrained and restrengthened, but they will come back. Thankfully, my son fully recovered and you would never know now that he was ever sick.

Jan's Blog said...

I know it seems it costs me nothing to make this comment, and it costs you everything, but I think no matter what he is your Daylon and he is eternally your son. How cruel it must sound to put things in eternal perspective. It's not a declaration of lost hope, but of the bigger picture which I call upon for myself when my terminal illness takes things from my the energy to play with my darling Great Niece, and when she is angry with me because I can't pick her up, and when she tells me she won't be able to love me if I don't get well. Sometimes the bigger picture comforts me. Perhaps at times it might comfort you. Even still, he's yours and always will be. How blessed you are!

Anonymous said...

Ramble away, my friend. Putting the feelings in writing does help put things in perspective. Reading your thoughts and feelings helps us understand too. Keep up the good work, you're doing great. I remember people telling me, "You're so strong, I could NEVER go through what you've gone through". I remember telling them, "I'm not going through this by choice. You'd be amazed at what you're able to go through when it lands in your lap!" I know how hard it is, but just know there are so many people praying for you and WITH you. God Bless you all! Tina Zalanka

Stacey at Mommiverse said...

I know we don't know each other, but I just want to reach out and hug you today! Daylon's story has touched my life and I think about him and your entire family many times a day. I will say a prayer for you all today and will send all the positive energy I can muster in your direction.

Emily Gunnell said...

I'm so sorry! Rants are good, sometimes you just have to get all of that off of your mind so you can continue.

Palm Trees do mean home! LOL! Wait until you see the mountains again! We never knew land could be so "flat" until we visited family in Minnesota. For us, home is palm trees, mountains and BROWN! haha!

We continue to keep Daylon in our daily prayers and thoughts. May you be blessed with rest, understanding, and comfort at this time.

Mom to Many said...

My heart is so full. You have opened your heart hear and I feel like you are a friend. You have been so brave. You give me a dose of perspective each time I come to read and follow your journey. I would be so sad if I came and your thoughts were not hear to read.
What an amazing medium. What an amazing thing, technology. This is a righteous use of it. I am sure that this use of it makes Heaven smile.
You have touched my life because of your openness. I am a fellow traveler on the road of life. Walking along and enjoying your sweet company as we walk along. I wish I could do something more for you. But, again. I can pray and I can write. I'll keep doing that.
Keep walking sister, so many are walking with you seen and unseen. I know that you are not alone. I know that heaven is close at hand.
Daylon knows who you are and he appreciates what you do for him each day. He is in there. I know you are so worried about how much he will be able to interact, will this pass? Only heaven knows and time will tell. But, Mom don't you forget. He is in there and he knows that his family loves him. That moment of eye contact was telling. What a tender mercy.
Thank you for sharing with those of us who are following your story.
We love you,


Anonymous said...

I just want you to know that your faith is truly inspiring! It's amazing to see the little miracles that happen in your family's lives every day. We should all be looking for those. Following your family's story is changing me for the better. Daylon is always in my thoughts and prayers. You guys are doing an amazing job, I wish I could give you a huge hug! I wonder if you can even imagine how many friends you've made because of your willingness to share your story and you don't even realize it. ;)
Much love and many prayers!!!

La Familia! said...

I the greatest admiration for you! You are an amazing daughter of Our Heavenly Father and such a courageous mother. I know that the church is true, that it was restored upon this Earth by Joseph Smith smith, a true prophet of God. We are so blessed to have this gospel, that we are able to gain blessings of the temple. We are able to be sealed to one another and have forever families. No matter what Heavenly Father is watching over you and your family, and especially little Daylon, and Daylon will be in your family forever. I admire your strength and endurance, and though I do not know you or your family, I know that I have great love for them and you. You are always in our prayers.


The Millers

Shelley said...

Thank you for sharing your experience with all of us. Your faith strengthens me.

Like so many others, we are thinking of and praying for you and your family.

Kristy said...

Wow. Thank YOU for being real! For sharing your mama's heart in a way that allows me to instantly relate, pray for you specifically and challenge me to embrace the moments I'm living even more!

Anonymous said...

I do not know you and your family personally, but feel like I do. I sit here crying for you, it is unimaginable for me to fathom what you all are going through. I do share the common bond of being a mother and having faith in our Lord. Honestly, from the bottom of my heart, I PRAY for a cure for Bella and Daylon. I wish I was that fairy godmother who could magically wave a wand and make EB disappear. Unfortunately I can't and that hurts. What I can do is with all my heart, with all my strength and love is pray for Bella, Daylon and both of your families. Please feel my sincerity because I too I’m not a writer and sometimes have a hard time composing my thoughts and feelings. I think of you all throughout my day, share your stories with family and friends and sometimes with complete strangers. You have touched my heart and my life, thank you for taking the time and allowing us to share in your journey.Your dedication is so powerful. Daylon is a fighter; look at all he is overcome in such a short time. He has the strength of a 6’5, 250 pound linebacker, the will to live and a beautiful family who is lovingly there with him. You and your husband have brought so much into perspective for me. I THANK YOU. I wish I could meet you in person and hug you, shake your hand and tell you thank you. There are so many of us who have committed to being there with you and sending you our thought s and prayers through words. Lord, I ask that today be a peaceful and restful day for Daylon and Bella, I ask that You continue to show us Your presence and will. That You will burdens the sorrows, fears and emotions of each member of these beautiful families. I praise You Father Jesus and thank you. AMEN

Anonymous said...

I am a California reader who doesn't know you but somehow came across your blog several months ago. I pray before I open it each day and I pray after I read it. I've prayed more for Daylon than I can ever remember praying before. Please know that lots of people are with you.

Bella's Blessings said...

Wow, what an outpouring of support washes upon us when we have the courage to be vulnerable. Thank you for sharing your thoughts and feelings - not just a play by play of events of the day. Bella had a "seizure-like event" her first night on earth. For the next 12 days in the NICU, I wondered whether or not she was in there. I just had so much anxiety that we lost her mind before it ever got a chance to begin. She was also hopped up on morphine the whole time, and looking back, I know it was the morphine that made her seem lost. Daylon is in there. His hearing and auditory reception and cognition are fully intact, and by nature, there is NO VOICE ON EARTH he would rather hear than yours. Sing to him, talk to him, and trust that while he may not have the physical ability to show recognition, that little light inside BEAMS when you speak. Proud to walk by your side. Tim

Anonymous said...

Praying for Daylon (as usual) and praying for you too. It is hard to not let the worry set in. Hoping and praying that things improve and you can move back to 5D and you soon find yourself back home. Denise WI

The McLaughlins said...

As I read this tonight I am in tears. I am continuing to pray not only for Daylon but for your family and the staff there at the hospital. God is Great. He works miracles every day. I have faith that Daylon will pull thru this with a full recovery. Stay strong.

Take Care,
Amber McLaughlin,CA

Anonymous said...

You dont know me but I read your blog daily..I am from CT and found u through Denise S. I am praying for your Daylon daily and just have this very strong feeling he will be fine. That laughing video made me cry and i dont even know you guys. Actually i feel like I know you all. I will continue to share this blog with others to make them aware of EB as many people do not even know about it. I would not if I didnt know Ryan. You are wonderful parents.

Janet Simon,,,CT

Anonymous said...

This is my first time reading your story and it wasn't easy reading through my tears. I don't know what to say for I'm not good with words but my thoughts are with you, Daylon and the rest of your family. I haven't said a prayer since I had my son almost 5 years ago but will try for you all. You are all so strong. I have so much love and respect for you all.
With lots of love C.A.S.


I am a little I read this post last and I am just so happy that your prayers got answered....cause after this post you got to hear a laugh from Daylon. Heavenly father is right there with you on your roller coaster of life!! He is there in the painful moments and in the happiest ones!! I cant help but just pray for you and your family to get ALL the BLESSINGS!! Is there a way to give up my possible blessings and pass them on to your family ? :) I just really have a true love for you and your family, and want the best! I have no doubt that with God all things are possible and heck Daylon is SOLID proof of that! So keep on doing what your doing Jen your doing great and when in doubt... PRAY!