We had a pretty loooong week last week. First it started off w/Anthony coming down w/a cold on Monday morning. He woke up early w/rosey cheeks and a slight fever. He was home from school for two days. Wednesday during the day myself and the nurse orientated another new nurse to work some nights. The new nurse was then suppose to come back and work Wednesday night…that didn’t happen because of a scheduling conflict so I had to stay up Weds night and of coarse she had a terrible night. She could hardly take in any feeding. Was wretching w/all the meds and flushes. Somewhere around 3:30 I ended up in the rocking chair w/her and she was moaning. I took her vitals and she was ok, not the best but ok. My day nurse for Thursday took pitty on me and walked in the door at 4am that morning. When I came down 3 hours later Danielle was packed in ice packs and towels. The nurse said 106.1 temp at 6am. Ugh! Again! The rest of the day revolved around trying to make her comfortable and keeping that fever down. Thursday night the new night nurse came, told her of the latest fever so she knew what she was in for. By morning Danielle broke the fever and was back to her normal self. The new nurse said to me “you don’t just bounce back from a 106.1 temp”. I said “welcome to Danielle 101″. LOL! We had a good laugh which was nice. Haven’t had one of those in a long time. Friday morning came and now she has loose congestion that she can’t clear. She is sounding terrible. We try to suction her to stimulate a cough in luck of her either swallowing or coughing up the phelm. Sometimes it worked and sometimes it didn’t. Friday afternoon I start to feel as if I’m coming down w/something, by nighttime whatever it was had hit not to mention the shingles I had developed two weeks earlier. Saturday comes and she’s still sounding junky so the nurse decides to call the ped and get an order to treat for comfort so she’s now back on an antibiotic in hopes of warding off pneumonia. I forgot to mention too that while her fever was going haywire the pulse ox was too. Her heart rate was coming back at 250!!! After she took it manually a few times it started to come down into the upper 160′s but even she was shocked. We thought it was a malfunction w/the pulse ox. Ha!
Sunday was her birthday. Something we didn’t think we’d be celebrating 3 weeks ago. She’s now 7. We celebrated quitely. Just us at home. I gave her some frosting from a cupcake and well that didn’t go so well. But at least she got a taste of it. We have had great success so far w/the new wonder drug. If Dean and or Teryn are reading this I’d be interested in knowing what the medical advisory board thinks of klonopine. I’m sure Danielle isn’t the only child that suffers from posturing so it would be extremely beneficial for someone else to know. We have not had to increase the dose yet so I’m praying we keep getting this result. It’s so nice to see her so comfortable. It’s really enjoyable to sit and rock her w/o her body fighting me. Much calmer. I’m hoping for a peaceful week and time to catch up on some rest.
Thanks for checking in on Danielle!!
With love,
Megan
-
So glad to hear the new med is helping out with Danielle’s comfort – ! Hoping you can catch up on some rest and your sweet girl stays comfy.
All our love and prayers,
the Murray’s -
Megan, Tony,
I don’t know how you do it, but yet as a Mom you just do it, your not sure where you even find the strength, but you just do it….but you have to take care of yourself to. Shingles in itself is very painful, so please remember when you can get the break, when the nurses are attending to Danielle you need to find the time to take care of you.
Again as I say in every posting, I don’t know what I can do for you, but if you need anything please just call, email, white smoke, whatever you need.
Love Aunt Chriss -
We know Megan through Kay Carlile.
We are saying prayers for Megan. God be with all of you. -
Hi Megan,
Still praying here! I hope you’ll be feeling better soon, and so glad Danielle is doing better and you can rock her! Happy birthday, Danielle!
–Gena -
Hi Meg and Tony
I am so glad the Klonapin is working…Dani seems to be doing so much better now, sleeping at night and tolerating her feeds.
Im wondering how she is feeling now? How is her congestion and lung sounds?
As your Aunt was saying, you have to take care of you….go have a spa day, get a pedicure, or just go to the library sit in a bean bag and veg with a nice cup of coffee.
If I happen not to be working on the weekend, I would love to pick Anthony up and take him to a movie with Jory and I (If he will go with me
Find time for you and Tony too.. that is SOooo…important for both of you I love you all….like mine,
Roberta P.S Please, give Danielle a hug and a kiss for me.
-
Still holding you all up in prayer. Happy Birthday Daniell! Klonopin is an excellent drug and am so glad it is doing what it is intended to do. Here is praying you have that quiet moment occasionally just for yourselves…when babies are born, we all learn to sleep when they sleep. I hope that is possible for you, you MUST rest.
God Bless
Ginny E -
Hi Megan and Tony,
I just read your post. You know our heart and prayers go out to you all! Happy 7th Birthday to Danielle!! What a milestone!I will get the thoughts of the Medical Board for you on Klonopin. I do know that it is a good drug and can be helpful for some MLD affected people. (There is that “individual” thing again!) Lindy was on it in the earlier years. It is usually prescribed to control seizure and since it seems to be working so well for Danielle I’m wondering if she is having seizures and not just posturing and clonus.
Please give a hug to Danielle for us! Hope you have a nice Thanksgiving and make some memories!!
Butterfly hugs,
Teryn -
My goodness and I thought my week was shit! God love ya! I hope Danielle keeps on going for you guys! I have so much admeration for you and your family! I know that as an MLD parent we HAVE to be strong…but you are truely the STRONGEST parents I know!
Please know that i really feel as if you are doing everything possible to make Danielle comfortable and loved. Knnow matter what God has to come for her, she has had a WONDERFUL life with you!
Please call me if you ever want to talk! I am up all night LOL!
Lots of love,
Libby -
Megan and Tony, you and your kids have been on our minds down here and are happy to hear that Danielle may be a little more comfortable now. I can’t believe you can keep on going, Megan, especially since you now have shingles, for Pete’s sake. God bless and keep you all.
Love,
Susie -
HAPPY BIRTHDAY DANIELLE! I think about you guys all the time, and say lots of prayers for you. You are amazing with all that you have to do and choose to do. God sure knew who to give Danielle to. I hope she continues to find comfort and that you find time for a little family fun. I wish you some quiet, peaceful moments and LOTS of really good days for Danielle.
Love,
Peggy -
Thinking of you all today and hoping Danielle is having a good week! Hope the klonopin is still working well (I’m definitely writing that one down to keep up our sleeve for Emily – especially since Danielle and Emily seem so similar.)
Praying for you continually for joy, peace, and rest!! Happy belated birthday Danielle!
love,
Michelle Pierce and family
Comments are now closed.
View comments here - scroll to page bottom to leave a comment
11 Comments so far