That is what Nora told us after just one night back on TPN. Where as the few days prior she had been telling us that she felt “sick” when we asked her how she was feeling. The poor sweetie had a really rough weekend and really went down hill fast after the Birmingham trip last week. Her weight took a nose dive and her labs from Sunday showed that her body was struggling with very low blood platelets. So after 25 days without TPN and Omegaven we resumed our version of “normal”.
Even though we’ve been doing the TPN routine for over 2 years now, it’s very easy to get used to the freedoms that come along without it, for both Nora and us. In the 3 and 1/2 weeks Nora was off of TPN, she acquired some habits that have been a struggle to break. Without her line she was free to get baths anytime she wanted, sometimes she requested a bath 3-4 times a day and we’d give it to her just for the fun of it. The first morning she awoke hooked up to her line she kept saying “I’m stuck” and “I want this line off” those statements on top of requesting baths all day long that I had to deny her was heartbreaking. But she’s been back on for a few days and has settled back into the old routine. Thankfully Nora is a very smart girl and seems to truly understand that as restricting as it is, the TPN really does make her feel better. After we told her that’s what made her feel better she became more accepting of being “stuck”.
Nora resumed TPN for 4 night straight this week to give her a boost but starting next week she will only be on TPN 3 days a week, Monday, Wednesday and Friday evenings for 12hrs. So even though the unexpected Nora experiment resulted in TPN again, we are still very proud of our girl for doing as well as she did and proving that she will only need it a few days a week.
Another positive that came out of all of this is Nora’s new home health care company is wonderful. They have taken a true interest in Nora and see her for the little gem that she is. The head pharmacist came up from Gainesville to oversee Nora’s first TPN mixture and delivered it to our house himself. I don’t think we’ll have to worry about any concerns we may have with Nora’s TPN not being taken seriously. To top it off Nora’s new nurse, Joan, is amazing. She has been a pediatric nurse for many, many years and is a mom to a special needs child herself. The understanding she has about the importance of sterile technique from a medical and parents prospective brings us a huge amount of comfort.
So glad she’s feeling better! Thanks to both of Montana’s girls for doing without him for the wedding, and thanks to Montana for spending so much time on the road to be a part of Ian’s big day. Much love to all.
Aunt B
What a sweetheart!!! Nora’s smile always melts my heart. I’ve been thinking about you guys a lot lately and hate that it’s so hard for us to connect on the phone as often as we’d like. I’m very glad to hear that Nora has bounced back and is feeling better! Now that she feels “stuck” part of the time, her days that she is ‘unstuck’ and free will be that much more fun and her days spent splashing in the tub will be that much more exciting for all of you!
We love and miss you guys!!!
xoxo
Dear Sarah, Nora and Montana,
I have been checking your website on and off but unfortunately, hardly have time to post a comment or two…..but I want you to know how much we think of you all all the time!!!! I miss you very much and would love to see you sometime. We have a birthday party tomorrow morning and was planning on doing something fun with the kids….so if you have time or could do something together (walk aroud Lake Ella and feed the ducks since it’s one of Nora’s favorite place) please give us a call.
Love and Light, Anita
I’m so glad the new home health agency is a good one, and that you fianlly have a nurse who might actully compare to Virginia! So good to hear that super Nora is bouncing back.
So glad to hear she’s feeling better. I admit I was getting pretty nervous with the lack up updates on the blog. The pictures of her with Will are ADORABLE!