in need of some big prayers!

…just read the update and I’m excited about the progress… pretty soon we’ll get the word she’s been moved out of PICU….PTL!!..

Great news sweetie [nope, still NOT you Shane. lol ].

Thanks for sharing the good news, Shane.

Prayers going out for continued healing and good news…

thanks guys,

Bill, I sure hope you are not talking to me like that. anyway, rumor mill has it that she will be off of the bent by monday if all goes well. she is resting pretty good right now while I am typing this by her bedside. she is peeing more and more with the new dialisys that she is on. so hopefully when they pull that vent tube, she will be able to go upstairs and she will start on a clear liquid diet, then to a soft bland diet, then to a bland diet then to solid food. but the big thing will be that she will be out of the PICU and up on the 3rd floor with the rest of her friends that she has been here with.

Again, thanks for the support and continued prayers. she isn’t out of the woods yet but the light at the end of the tunnel is getting brighter.

shane

our family is praying for her!

It sounds like alot better days are in your future.. Its a great thing to have the love and support from your family and friends here at IDO. My thoughts are with her and you Shane.

Good Morning! Well I had a pretty good evening until about 4 this morning. I was awake still when Mom got back here just after 7, but I have been sleeping pretty soundly since about a half hour after she got here.

The doctor who sent me over from St Paul Children’s to be put on ECMO is my doctor again over here for the weekend. He is very pleased with how things are going for me and how I look compared to the last time he saw me what 23 days ago.

My ventilator has been turned down to 10 it was at 12. Not really sure what those numbers mean, other than I am breathing at 30-31 so I am doing most of my breathing myself. The plan is to turn it down to 8 yet tonight and more tomorrow the more I am able to get off the sedatives, which are at about half for the Morphine and a little less than half on the Versed..

Oh, they started me back on feedings yesterday and increasing my doses every 6 hours again till I am back to 50 ml per hour. Nurses are loving that, NOT! I keep having blow outs and they have to change my bedding. They put me on Peptomen Jr. instead of Pediasure it will hopefully make it so I don’t have such runny diapers. Taste wise it really doesn’t matter to me, I can’t taste anything anyhow.

Everyone keeps hitting replay on the Little Mermaid II for me, it really seems to help keep me calm. Mom tried playing Tinkerbell for me last night, but that just wasn’t the same. Good thing Grandma Sharron was able to find the movie for Mom so I will have it when I get home too.

shane

ok guys, guess what is new with me, look at the pictures and you will see her personality starting to come through, they are slowly weening her off of her meds so she is doing good there. again, thanks for the continued support through prayers and stuff.

shane

Its great to see she is extubated!! That is a huge step!! Thanks for the updates.

this is the best news i have got all day buddy. even in a hospital bed with tubes and machines she is a beautifull little girl. she is still in my thoughts and prayers. keep up the good work im proud of all of you

Shes always in my thoughts and prayers. She a little miracle from above.
Thanks, Bill

here is a photo from earlier today. this makes me really happy.

shane

Looking good. Glad she is off the vent, that is a big step! Now you can see the full smile!

its amazing how far she has come since you first started posting on here about her. i am happy to see she is getting better. keep us posted…

I started that night that she went in, so this family has been in the loop ever since. the power of prayer is awsome, she still isn’t out of the woods yet, she is still listed as critical, but she is doing better.

shane

Fantastic news to see her off the vent. HUGE step forward.. …It’s been great to see God’s hand over this little angel.. We’re looking forward to continued baby steps..

well in my last photo, it was of her, after she got cleaned up, no feeding tube because she wanted a cheese burger, fried, and a shake . anyway, I got that one of her being sat up and helped out by the nurse, but she is sitting up at her waist. also here is the new update from last night, with all the stuff going on the last couple of days, we haven’t had much time to keep you all updated, so here it is.

Good evening! Well I have had a pretty good day, sleeping quite a bit, the nurses say it’s good for me to get lots of sleep to help with the withdrawls. Mom brought me up a bunch of my favorite movies from home to give me more of a variety than just Mermaid and Cars.

I am down to one brain box for my IV’s. I have Versed, my maintenance line and my med line left. Sure is a lot different than what I started out with! The ventilator has been taken out of my room, boy does that open up things! I got a 4 hour holiday from the PD today, I did very well with my outputs. They also removed my arterial line.

Dad spent the day with me today, because he wasn’t watching me, I was able to pull out my feeding tube TWICE! Hee hee!!! He took a picture and sent it to Mommy before they re-inserted it. Physical therapy went well today, they are going to bring me down some toys to play with when they are here tomorrow. They let me brush my teeth with one of those spongy green things, I do a pretty good job dipping it and brushing. They also let me drink from a sippy cup, it was only 2 ounces, but I did a pretty good job. Shortly after Dad left today, Mom got to crawl into bed with me and cuddle, that sure was great. I fell right to sleep and I was out for like 5 hours. Now I’m up again.

thanks for the support and the continued thoughts and prayers, you have touched my families heart with all of your kindness and generosity. it means alot to both me and my wife to know that we have this support. I will post more later when I get to the hospital.

shane

Keep it up!!! Nice 2 see U getting better

ok everyone

here are the photos from today, can you see anything new in the pictures?

thanks

shane

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can you see anything new in the pictures?

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Either the big smile in pict # 2, or they turned her bed into a wagon?

(I’m good at Photo Hunt).

Lookin good!

yeah, we got to go for an adventure this afternoon for about an hour. we got to go to the 3rd floor and visit and see where we might be going tommarow if there is a room that opens up. love the smile picture though, that is the biggest one yet.

shane

Quote:

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love the smile picture though, that is the biggest one yet.

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I’d say its worthy for an avatar!

good call. I will send that right now.

thanks

shane

Shane, it is good that you loaned Kristen your Boo Boo kitty till she gets feeling better

I am so happy to hear Kirsten is doing better. What a scary experience. I am sure it has been a long and emotional journey. I will keep praying for you and your family and wish you all the best.

well after 29 days, we are finally moving out of the PICU. we are moving to the 3rd floor. they also have her PD Dialisys caped off for 24 hours, she has done well in her with her other vacations, so they figured they would give her 24 hours. I just got here about 45 minuets ago, so that is all I know for know, I will post more from her new room.

shane

keep up the good work guys, this is great

here is the latest updates.

WOW has today been a VERY busy day! I got to move again today. But this was an even better move than my last one, I am now on the 3rd Floor!!!! This is a huge step in my recovery!

Physical Therapy stopped by this morning, but the nurses were busy getting me ready for my move so they didn’t get to work with me. But the Occupational Therapist stopped by this afternoon. She left a tumble mat in my room so I can sit on the floor and play whenever I want to. She also left some soft balls for me to play with. I was having fun throwing them at daddy today. The therapist was very impressed with how well I could sit up on my own already from just a couple days ago. It sure did wear me out though! It’s been a long time since I have played like that.

The best part about being up here now though is that I can actually be held now so I can cuddle with my Mom again and not just have her lay next to my on my bed! We cuddled for about an hour this afternoon before OT stopped by. Not sure who enjoyed it more me or Mom.

Oh, I almost forgot!! My numbers came back very good this morning so I am on a 24 hour holiday from my dialysis! If everything goes well, they will completely disconnect me in a couple of days.

Oh and for those who don’t know, the 3rd floor is an intermediate floor for kids who were in the PICU to help get them better. The nurses have two kids they take care of instead of just one. But the rooms are a lot bigger and Mom and Dad can sleep in my room not down the hall where ever there is room.

Oh and my xray this am was VERY GOOD, the doc was very pleased with it and so was Mom.

Just know that visiting hours are only 9 to 9 up here but please don’t everyone show up right away, they want me to start getting my days and nights figured out more and not be too overly stimulated. They are still trying to get me off the Versed and I am working on withdrawls.

thanks for all of the support.

shane

PTL