Thursday, July 15, 2010

Day +20: Missing my son

No, he's not awake. I just needed to see Daylon. Daylon without a tube sticking out of his mouth, without bandages covering his face, lying there in bloody drool. The days have turned into weeks and tonight I'm tired of it. Today has been an emotionally draining day and I want to keep this short to prevent myself from saying something I don't mean.

Biggest moments of the day:

-This morning when I woke up and called in to the nurse to check on Daylon I found out that they had taken him off the paralytic. Grrr. I would have gotten up in the middle of the night for that. Long story short, they're allowing him to make some movement (he's still sedated) in hopes that his muscles will start to push some of the fluid back into his veins so it can exit his body. They have maxed him out on the current diuretics and are desperate to get the daily weight gain under control. This needs to work...dialysis is back on the table.

- The Ronald McDonald house asked our family to be in a video that the company is making to help raise money for their charity. They filmed Brian and I interacting with the kids and then interviewed us. The interview was only 15 or 20 minutes but we needed to explain how living here has benefited our lives and the toughie:why we are here. We had to answer questions in this interview that I try to avoid talking about. It was very emotional for Brian and I. After we met with them, we took the kids out to the courtyard to play and we just stood there talking and crying. I'm sure my kids think we're loosing it. Mostly, it was crying because we are happy to have hope for child that we didn't think we'd get to raise here on earth. We feel blessed and so very grateful to live in this time where medical science is so advanced. When Daylon was born (just 12 months ago) there was nothing, no one out there who could help us.

Something you should know about me is I don't like to cry. Once I loose control of my emotions, I'm gone. Spent for the day. Seriously. Just ask Brian. I'm one of those bottled up people. Just don't pop the cork, you know? That being said, the next two bits haven't gone over well with me today.

- This afternoon Daylon's shirt and blanket were soaked and we needed to change it (we still have no clue why). Two nurses, a respiratory therapist (who's ok) and I gather around Daylon each with a specific task to get it changed out asap. So my job is lifting his body (RT has his head) and we NEVER lift him from his back, let alone his bare back, so I was feeling really nervous about getting under him to pick him up. I aquaphored up and pushed against the memory foam to get under him and when my hand came up to meet his back I felt something sharp. I pulled my hand back out and it was pretty bloody. I moved back under him and had to pull out (yes, pull out!) the sharp cap to the end of a syringe! It was embedded in his back, for who knows how long. We really can't move him much because of the internal blistering so I changed out his blanket 3 days ago! The sore is so deep. I can't help but be mad. I know no one did it intentionally, it was just carelessness. He laid there for days, in pain that I could have helped him with and I had no clue. Just sitting there, 2 feet away while he needlessly suffered. Ughhhh.
- Lastly, tonight just before Brian and I traded out I got a visit from Tim and Angelique (Bella's parents) and poor Bella looks to have VOD as well now. I can't believe this. I'm so crushed. We're living this crazy life and they seem to be experiencing everything we do. It's like our team's been hit again. Daylon and Bella just seem to be holding hands through this little journey. I like that I can see some of Bella's vitals on Daylon's monitor, don't ask me why, but it's comforting. Please drop Bella's family some lines of encouragement. I know how devastated we were to learn about Daylon's VOD.
Well, I'm calling it a night. Guess this wasn't very short, huh? More tomorrow. Sleep well.


Brooklynne. said...

Im so sorry that you and brian are going through this emotional rollarcoaster! I think you needed that cork to fly open, sometimes it helps to let all the sadness, anger, and frustion out. I know it's tough but you gotta say strong for Daylon and his little friend Bella. I would of been super upset about the syringe cap aswell. Hang in there Jen you gotta, i went through this with my mom, it was really hard and frustrating especially b/c i couldnt be there with her, you guys have the oppertunity to be there with him, to comfort him, talk to him and tellign him how much you love him every 10 seconds. It's tough right now i can only imagine, don't think that your being helpless when he's in pain because your not!!! Your love for him elivates all his pain,mentally. It makes me so sad that your sad, I wish i could be there with you guys and be Daylon's nurse!! I know Daylon is a miracle and he's going to follow through, i know it! You and your family have given Daylon the will to fight and more importanly, to live, it's not the doctors nor all the medications, it's you!! Your the strongest person ive ever met and a great, awsome mother!! Keep doing what your doing and you need to lose sanity once in a while, it helps. Give Keira, Caleb, Violet, Sadie and Brian my love. Tell Daylon I love him too. Im sorry to hear about Bella, she'll get through it, Don't worry mom and dad it's gonna be okay stay super positive, it's one bump in the way towards her recovery, she'll fly right over it, my prayers are with her and you.

Carla and Matilde said...

I always start my day with Bella's and Daylon's blogs. Today, I couldn’t retain my tears… I wasn´t expecting at all to find such pain, anger, sadness,... in both. I don´t have words to alleviate your pain... I can't even say that I know what you are going through...

But I can say that you are doing all you can and more. Daylon is a very beloved baby. I am sure he feels comfort and relief just with your presence. Stay strong and confident. He is such a fighter and a winner. You (all) will win this battle.

Keeping Daylon in my most faithful prayers.

Carla and Matilde (14-mo with EB), from Portugal

Anonymous said...

I pray for you and your son constantly. Hang in there. With God ALL things are possible.

Linda said...

First thing every morning I check the blogs for Bella and Daylon. This morning I am sad and so angry. Sad because of the news about Bella and angry about what you found in your son's back. How can people be so careless with these precious children? I think I would have thrown a major fit and had a few heads rolling in that unit.
Stay strong for Daylon. Extra prayers are being said today for your precious son. Love your family and your Faith. God Bless. Love Leah's Nana

ANewKindOfPerfect said...

I am not surprised that you had an emotional day. You guys are going through so much. Like you, I keep it all bottled up but once the cap comes off, it's off!

I hope his back heals up quickly. I can't believe someone was that careless. :(

Jess Edling said...

I am going to tell you exactly what I told Tim on Bella's blog:

"Be not afraid, neither be thou dismayed. For the Lord thy God is with thee, withersoever thou goest." (Joshua 1:9) Its the mutual theme this year and for some reason I'm finding it rather fitting right now for Daylon & Bella and for you, Brian, Tim & Ang. There are other scriptures that would be more fitting or more comforting, but that is the one that keeps coming back to me when I think of you. And I think of you a lot. Brent and I pray for our Big D and now Bella every morning & evening. We are with you, every step of the way we are here. Maybe not physically, but in spirit, thought & love we are with you.

(Remember my rule, that no one cries alone in my presence and I hate to cry? Yeah, THIS COUNTS! :P)

I'll call you later. Just remember you can always call me if you need to talk and I don't care if its 3am here - just call. Love you.

Anonymous said...

I am so touched by this picture because I see my son in Daylons facial expressions sometimes. There have been so many times in that last few months (since I read about Daylon in the paper) that my son has made the same faces that Daylon makes.. and when I see it I immediately pray for him. If it were me going through what your going through I would want people praying for us.. So thats why I do it. He is such a tough little fighter! and SOOO Adorable! I can't wait to see this little smile again! I'm sure it's hard to have to see him just laying there.. but remember that it's better that he is laying there then suffering constantly.

Like Bella he will one day say "Yeah, I was born with this rare condition, but when they brought me home from the hospital, it went away." I believe that they will both come out of this STRONG!

Hang in there Jen, as a mother I know how hard it is to miss your baby... You are so strong! Keep up your patience.

Anonymous said...

Praying. sg-KS

Lauri said...

Oh Jennifer, I must stop reading these posts at work because I end up crying and people are wondering what I'm reading. My heart goes out to you and my prayers are with you constantly.

Tracey Sharp said...

We are praying for lil Daylon and your family!!!

everyday katie said...

I think you should know that I follow your blog. I never comment. I figure if I am going to spend a minute writing a comment, I should use that time to say a prayer for your family instead. (Don't worry, a comment today doesn't mean I didn't pray for you...a prayer has been said, but I happen to have a few extra minutes this afternoon.) Seriously, you and your family our constantly in our prayers. (Though my husband who can't seem to remember names always prays for the family with the son with the skin disorder.)

For what it's worth, I think you're all going to make it through this and be stronger people because of it. I'm sure that great things are in store for your family. You are all amazing.

Katie (Benson) Smith


OH my HEART goes out to you!!! I wish there was something I could do other than write on your post. What a hard day you endured! I cant imagine the rage you must of felt by the carelessness of who ever left a cap to a syringe laying around...yet even some how getting under him and cause him AGAIN....suffering that could of been avoided. They need to step up their game...they are dealing with your son's life!!! I am so angry and so sad for Daylon all at the same time.

I am praying his weight can get under control!! Also I would hope next time the nurses would call you before they even moved Daylon so you could supervise and help.

I am glad you opened up about your feelings and the subjects you like to avoid talking about. I know its painful to talk about...but I bet you felt better afterwards letting it out( popping the cork). Remember it's ok to cry. We all do it :)

Never give up!! Your a strong person and such an amazing mother! Daylon is so blessed to have you as his mother have your LOVE your strength...your support... your encouragement..your ability to do whatever it takes to better his life and to do what best for defend and protect Daylon because he cant do it himself!! Never doubt that!! We LOVE You and WE are here for you and as ALWAYS praying for Daylon!!!

Anonymous said...

I have tried to post on your blog a couple of different times, but I keep messing up something.

My daughter Elizabeth is 18 and on day +65. We too are staying at the RMH. We have been following Daylon's blog from the beginning of transplant. In fact I think we were in the room next to you when he first entered the hospital.

I had a very vague knowledge of EB before we came to MN. I started following McKenzie's story and EJ'S and now Daylon's and Bella's. All of these special children have captured my heart. I read their stories and at times it makes me question my faith. How could a God that is good let any child experience what these sweet, sweet children have. I truly think this is the worst disease possible.

We pray daily for all of your family and hope that some day soon Daylon will be free of this disease and able to enjoy all the love, hugs and kisses that are waiting for him.

I see your other kids everyday at the house. Everytime I see them, I can't help but smile. They are an amazing group of kids. You have been blessed with a wonderful family. I am super impressed at what a great job you guys are doing of giving all of them as much of a "normal" life as possible in the midst of such a battle. One look at them and you can see how well loved, cared for and cherished each of your special babies are.

Wishing the best for all of you,
Marsha (and Elizabeth)

Kristyn said...

I said I wasnt going to read these blogs at work anymore because i just sit here and cry::(((:( but i just cant help it. Jennifer ...YOU ARE AWESOME!! I would have SNAPPED by now. You and your family can only get stonger and closer . We are praying day and night for you and your family . Geeez I dont know what to say. Hang in there. God bless you guys. THE De La Cerda's of Norwalk!

Susan said...

I read your post this morning and then went out in the back yard. It wasn't more than 20 min after reading that I saw a beautiful blue butterfly. I just wanted you to know I was still thinking of Daylon at the time the butterfly floated around the back yard. And the best part was I had my camera and was able to snap a photo. Please enjoy, Daylon's butterfly in my back yard in Pittsburgh, PA.

sharon kaye said...

I wish I could give you a huge hug. I just sat and cried as I read your blog. It's OK for you to cry. (As my grandmother used to say, "That is why the Lord made tears.")I hope you feel the Lord's comfort. We join many, many people in praying daily for you.

Bella's Blessings said...

Ugh, I am RIGHT THERE WITH YOU with regard to missing Bella. This was really on my heart and mind all day today. I miss her so much. I am so glad we are by your side through all this. Thanks for saying what was on my mind today. I am so grateful for you.

Jenny said...

It makes me really mad to read about the horrible mistake they made that caused him pain, maybe for days. I don't understand how you guys manage keep it all together in the middle of this!? You're doing a great job and I really admire you. Take care, best regards Jenny in Sweden

Anonymous said...

Continued prayer for Daylon. sg-KS

Anonymous said...

I'be been following Daylons journey since before MN. I started a few months back when I read his story in the Press Enterprise. From that point on I have been determined to do what I could to help make this miracle happen. I look forward to your blogs everyday and even my husband worries about Daylon and asks how he's doing if I haven't talked about him in a while. Your family has touched our hearts.

After reading your entry today I am in tears. I read every entry and have wanted to comment before but haven't. Today I really felt I needed to let you know that you are not alone. Although I haven't met you in person I truly care about your family. You both are so strong. And not only are you great parents to Daylon, but you are great parents to your 4 other little ones. I can see how much you love them ALL.

Continue to be strong. God has promised Families are Forever!! Find comfort in that.

Much Love,

Amber McLaughlin, CA

Lynne, Bob, Jack and Ben said...

I'm a friend of Tim and Ang, and have been following Daylon's story as well. Just wanted to let you know that our family is sending prayers, love and healing energy to your beautiful family.

Mom to Many said...

Oh, my heart breaks. When my brother was in the burn unit the oxygen tube got up behind his head. It embedded into the scalp. Many years later their little girl dubbed the scar his "worm." Poor little Daylon. I am so sorry that his little life is so hard right now. Hugs to you Mom and Dad.
(I got up to check on him since I've missed reading updates while at youth conference.)