When can I come home?

>> Monday, July 27, 2009

Stef and I are both wondering what the answer to this question is. We actually have a bet on the date. Last week, I felt like Kamryn's progress was on track to allow for her to come home on Friday July 31st. Stef thought Monday, August 3rd was more realistic and is also Stef's birthday so that would be the perfect present. We will see shortly who wins the bet.

They were able to wean the Methadone a little more over the weekend, but they didn't go down very much. If they continue with that rate, it seems like it will take more than a week which brings up another concern. There has been some talk, actually more like passing comments, that "Kamryn can go home on Methadone". I don't think I have really given it much thought until I noticed that they are weaning her more slowly than I would like. The thought of Stef and I administering her Methadone freaks me out a bit. It's bad enough that she is kicking the drug habit, but I would feel a bit weird being the one administering it to her, not to mention the incredible fear of screwing it up. I am going to try to not worry about things that I can't control for now.

The other frustration is the feeding schedule. I'm at the point to where I wish we could just take the leap and feed her with a bottle all 8 times a day. She is having absolutely no problem with her 6 feedings right now and I know she would take all 8. They want to move slow and I can appreciate that, but I think she is clearly telling us she can handle it. I guess you can tell I want the feeding tube out now!

On a brighter note, she has been upgraded to ACN status from ICN. There are good and bad points about this. First, being upgraded means she is doing fantastic and doesn't need the level of care she has received in the past. The bad part is she won't receive the level of care she has had in the past and nurse ratio will go up to 1:3 or 1:4. She is in a better room now that is quiet and much more relaxed. The next step down from here is CCN, but we hope she will simply be discharged from this room and we won't need to physically move to that unit.

And then there is Brooke...... She was such an easy baby the first few weeks and then everything turned upside down. We have struggled (Stephanie more than me - I have an amazing wife!) to get her down at night. She is extremely fussy at night and it goes on for hours. I think we are both a little nervous about the schedule and how things will go having both Kamryn and Brooke at home. We are bracing for that, but we will figure it out.

We had a wonderful weekend overall. Stef's dad was in town and he visited Kamryn and then took us out for an incredible meal. It was really good to see him and catch up. My mom treated us to dinner last last night celebrate my brother's birthday. Thanks for the awesome dinner and evening mom! You don't realize I guess how big the family has grown until you have to get a table for 9 people knowing that soon you will need to get a table for 10 when Kamryn joins us. I miss my dad the most during events like that and feel like he was taken from us far too early. He wanted grandchildren so bad and to have so many at the table would have made him the happiest man alive. We had a great time and hopefully Kamryn will be joining us for Stef's birthday dinner next week! I wish we would have taken some pictures of Hollie swimming yesterday and going down the water slide. Tammy, one of Stef's friends from bible study invited us over to swim yesterday and we had a hard time pulling Hollie away from the pool to leave. She is now our little fish and is swimming so well!

Well, that is about it for today. I will keep everyone posted on how Kamryn does and what her discharge date will be. It won't be much longer now!

Take care,
Shawn

7 comments:

Chanda D Brady July 27, 2009 at 8:41 AM  

I'm still praying for you guys!!! Sounds to me like you guys are doing awesome handling what has come your way. Take care, Chanda

The Colvin's July 27, 2009 at 11:46 AM  

Yeah Kamryn! Keep fighting little girl! I hope Steph wins :) That would be the best b-day present a mom could every want!

Hugs
Nicolle
Mommy to angel Kasey James Colvin 11.16.09-12.19.09

Terri L. Helmick July 27, 2009 at 12:20 PM  

Even though I don't post I just wanted you to know you guys are still in my heart and always in my prayers. I am so happy that things are going well. Keep the fight going and very soon I feel you will be saying Welcome....the H word. Not gonna say it for fear of jinxing! Bless you all!

~Terri and Ava
http://avaslifewithcdh.blogspot.com

Baby K Mama July 27, 2009 at 9:18 PM  

I completely understand your frustration with wanting to get that feeding tube out. Kayla never had one- but I remember her crying hysterically bc she was hungry and they wouldn't feed her bc it hadn't been three hours!!! It was awful!! And then if she finished the amnt they thought she could handle, and wanted more- they wouldn't give that to her either. I guess it's just the NICU schedule- and I understand that..just think you will be home soon and can feed her w/o any tubes and any time you want! :) It's great!! :)

Jaime's World July 28, 2009 at 7:30 AM  

Kamryn is doing AWESOME! There is really no need to "rush" things. I know you want her home, I've felt that desire before. You guys are so incredibly lucky, Jaime spent 93 days in the NICU, his little buddy, Carter (born 11 days later) is STILL in the NICU. Just know that each day in the NICU, Kamryn grows stronger and IS one day closer to coming home! As for the feeding thing...Jaime pulled his NG last week, we haven't needed it since. Kamryn will do GREAT on her 8 feeds a day. She will absolutely THRIVE at home, just as Jaime has!
Wishing you the best of luck...HOME is in your near future...just be patient a little longer! :-)
Hugs and prayers,
Sheryl

Anonymous July 28, 2009 at 9:56 AM  

This is great news! I know you all are anxious but Kamryn will come home when she is ready...and as we all know only He has control of that!

Shawn understand your feelings about your dad. But he knows how many grandchildren he has and enjoys them as much as you do. In fact I think it was his demanding that gave you all Kamryn and Brooke in the first place! :) I know it's not the same without him here but just know he is always with you.

I know the the thought of having your whole family home is overwhelming but you and Stef will find a way...you just do. If there is ANYTHING I can do for you when you are home just say the word. I'm not as close as Angel and Avery but still 10 minutes away! :)

I'm on schedule to bring you all dinner tomorrow so I hope to visit with you all then.

Love,
Paige

Tracy Meats July 28, 2009 at 1:39 PM  

It sounds like Kamryn is doing very well and home is not too far away. Don't worry about giving Kamryn pain meds at home. We had to wean Ian off of his morphine at home and it was no big deal. I agree, once you get your little girl home, she will just thrive and I am sure she will be saying get that NG tube away from me, for I don't need it!!

Keep up the good progress Kamryn!! Praying for your girls and family.

Much love, Tracy

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