Still doing great

>> Sunday, July 19, 2009

Kamryn had another great day yesterday and they also removed her from her Versed medication. This has been used from day 1 to keep her somewhat sedated and they turned the pump off yesterday. That means she just has one more medication, Fentanyl, to get rid of. Fentanyl is a heavy duty pain medication that is more potent than morphine. Unfortunately, she has been on this everyday of her life so far and surely has developed some level of dependence on it. They are going to have to wean her slowly off of it and if my calculations are right, it could take another 2 to 3 weeks before they can turn it off.

Kamryn managed to pull her stomach tube out last night so she has to have it re-inserted which I am sure isn't pleasant. She is just totally awake and active now, which is great if we can keep her hands away from her face. We both were able to hold her yesterday and I was so happy to see the actual ventilator machine was completely gone from her bedside. I think she has proven that she is fine on her own!

Stef's step sister, Becki, was in town yesterday and they drove up to the hospital together to visit Kamryn. They had a great time, and she was just in awe of both Kamryn and Brooke. It was so nice to see her, and we look forward to her visiting again in August.

Well, Hollie and I went fishing yesterday and she has proven to be pretty good at it. Here's her biggest catch of the day:


We are continuing to do great and I will post tomorrow night with all the updates after we speak with the doctors about next steps.

Take care,
Shawn

9 comments:

Jennifer July 19, 2009 at 11:56 AM  

Awesome fish, Hollie Bear!

Way to go Kamryn! I can't wait to see you without all your wires!

Love,

Auntie J

Beck1221 July 19, 2009 at 1:54 PM  

All the girls are beautiful and happy. You all are so blessed, and we will keep you in our hearts!

Love,
B

Elizabeth July 19, 2009 at 2:08 PM  

Great Catch Hollie! I'm in awe of all your girls!

FYI - the weaning and feeding sometimes is also a long haul too. Take a deep breath - your part way through!

Sending lots of thoughts and prayers,
Elizabeth

Anonymous July 19, 2009 at 4:07 PM  

OK - I have tried to send this 3 times and am having a hard time so I'm going to try 1 more time. If you get 4 messages saying close to the same thing you will understand! Anyway = 4th try.

Wow Hollie! That is some fish you caught! Any fisherperson I know would be proud to catch that fish. I'm pretty sure you got your fishing talent from your Mimi. But I'm very sure you got your great lessons from your Dad. We are going to have to go fishing together next time I'm in Dallas.

Joe and I were so happy about Becki's visit to you all. I bet she really enjoyed meeting her new nieces. I have to admit to being a bit jealous about missing out on that visit because I know you all must have laughed a lot and shared a lot. Anyway, thank you Becki for visiting the babies. I know it meant the world to Steph and Shawn. As always, you and Robyn are so generous with your time.

So, Princess K - aren't you to bomb! You have dazzled all of us with your progress. Keep up the great work, sweet angel. You are doing a great job. We love you and your sisters so very much.

Steph and Shawn, it sounds like you all are beginning a home stretch, working now to get rid of the last of the drugs. Congratulations for keeping it together so well and for the progress you've made. It is astounding.

Love to all of you and big smooches to the girls!!!
Mimi and Papa

Anonymous July 19, 2009 at 8:27 PM  

I have been following your families story since day one and am so pleased to see Kamryn doing so well. I was sure she was going to make it through with flying colours, but with all CDH cases, you can't really say that out loud! I just wanted to say, that fentanyl is often less addictive for babies and also easier to wean. My little one was on it for 4 weeks and she came off no obvious withdrawals so I'll keep my fingers crossed for Kamryn. Will keep paraying for you all, and hope that Kamryn is home with her wonderful family soon.

Jackifer July 19, 2009 at 11:10 PM  

Yeah Hollie-wood...way to show your dad how to do it!! That looks like dinner to me - save some for me.

I'm so happy that Kamryn is doing so well. It sounds like she's anxious to come home..I'm sure mom and dad are too. Still praying for you all - Love you!

Jackie

Anonymous July 20, 2009 at 8:33 AM  

Way to go Hollie the Fisherman!! That fish looks like it weighs a bunch! We are so happy Kamryn is doing so good! Tht was the best news ever.
Love,
Aunt Judy and Uncle Bob

Anonymous July 20, 2009 at 9:57 AM  

Great catch Hollie! There are lots of big fish over there.....We are so happy to hear about Kamryn. That is just awesome news that she is off the vent. We are continuing to pray. Hang in there. She will be home before you know it. Lots of love,

Angel Avery Brady and Cole

Velouette July 20, 2009 at 4:01 PM  

Shawn & Stephanie,

What joyous news. I'm happy for you all and hope you have everyone home together soon.

Sincerely,
Velouette

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