Molly got some good sleep last night and we checked out of the hospital just after lunch. The epidural cane out yesterday and her pain has been well managed, which was a huge relief.
The transfer to the car was painful, but hopefully we will get a system figured out to make it better.
Thank you all so much for your messages if support, silly stories, and jokes. She loved them and told several to her surgeon this morning. :)
4 comments:
Hi,
I found your blog. How long Molly has had the port-a-cath? Has it been working ok and been the right decision??
We have a almost 4 year old girl with very difficult type3 OI. She will get the port within a month too.
Best regards to Molly and your family from Finland.
Molly got her first port-a-cath during her very first rodding surgery. I don't remember the exact age, but she was roughly 1.5 years old at the time.
It has absolutely been the right decision for us. Molly's port lasted much longer than they expected, but it would have been worth it even if it was less time.
Molly has been getting bisphosphonates (first pamidronate, now zolendronate) over IV since she was a baby. She was very, very fragile for her first year of life, and we think the pamidronate combined with the rodding surgeries were a big help in that.
We do have to get the port flushed every month, so we have a home health nurse come to the house and flush the port.
If you haven't found it, there is a great OI parents group in two places. One is an e-mail list on yahoo groups, and the other is on facebook.
https://www.facebook.com/groups/OIParents/?fref=ts
http://health.groups.yahoo.com/group/OIparents/
-Jim
Sarah said to feel free to friend her on Facebook as well:
https://www.facebook.com/sarah.k.sullivan.31?fref=ts
Thank you for answering!
Our daughter also got pamidronates first 2 years (every2month) and then zoledronate (every 6 month) over IV. Now going back to pamidronate once a month because she has still had so many fractures. That is why we now need the port.
So far she has been given "sleeping gas" every time when IV needle has been put. Not a chance while awake..
No rodding so far since the legs are so short and curved.
Has also had a lot of fractures even though does not walk.
I know it has been some time since your last post, but I just found your blog and wanted to share how inspiring Molly is to me. I'm not sure if y'all will remember me, but I was a friend of Lynn Young's and I babysat Molly some during the summer a couple of years ago. Getting to hang out with Molly was definitely some of the most fun I had that summer. I think my favorite was coloring and drawing because Molly drew some incredible and colorful pictures (that I actually still have). I was thinking about Molly because I was hanging out with my little sister, Lily, the other day, and she still thinks about the day that she got to go hang out with Molly too and she asked me how she was doing. I'm having my gallbladder removed tomorrow because I've had a lot of pain for the past month and I'm a little nervous about my first surgery. Tell Molly I was so lucky to stumble upon her blog tonight because thinking about how brave she is with all the pain that she deals with and the surgeries she's had I know that my little out-patient procedure tomorrow is going to be a snap. I hope that you are doing well, I hope Molly is as happy and bright as she was when I last saw her, and congratulations on your semi-recent baby!
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