Saturday June 22 we started making changes to Addy's diet and medications. The dietitian wanted us to switch her from 10oz apple juice (aj) to 10 oz white grape juice (wgj) so that change started Saturday along with all her medication increases. By Tuesday we noticed her heart rate was elevated and she had thicker and heaver secretions (not good)! I called the dietician who made the changes and she said to change her juice to 50/50 (5oz aj and 5oz wgj) to see if that would help the heart rate and then gradually increase the wgj back to 10oz. By Saturday 6/29 her heart rate was still elevated (even higher) and she had a low grade temperature. Sunday we started her on azithromycin (z-pack) to see if that would take care of the temperature and heavy secretions. Friday 7/5 was her last day on the z-pack and she seemed to be feeling better but that all changed Saturday evening when she spiked a 101.5 fever! We immediately got on the phone with Dr. Schroth who put her on a strong antibiotic (cipro-the one she is on with each hospital stay), lowered one of her medication changes from the appointment and said to go back to her normal diet (all aj and no wgj) and the very LONG 2 week antibiotic treatment began! By Friday 7/12 we were noticing Addy feeling better but after 3 sleepless nights the TERRIBLE tummy troubles were back so we called her dietitian we typically dealt with who put Addy back on a very bland/basic diet of water, pedialtye and formula. We noticed a lower heart rate and she seemed to be getting better but wasn't 100% and the bigger problem was she was not able to come off bipap until we decided to lower all her medications back to what they were before her appointment. By the end of the day she was completely back to normal, coming off bipap and her heart rate was amazingly low! Tuesday 7/16 we spoke with her dietitian and she was pleased to hear how well Addy was doing and gave us the go ahead to start adding juices/baby food back to her diet slowly. She told me that for some reason these diet changes can happen even when a kid has been on a particular diet for years (like Addy who has been on the same diet for 3.5 years). Wednesday 7/17 we started juice back into Addy's diet and started with wgj and noticed zero changes...yay! However Monday 7/21 we started adding baby food back into her diet and have noticed an elevated increase in her heart rate again. I'm praying we get her diet figured out soon and are able to get her calorie count back up to what it was pre-sickness and pre-doctors appointment and especially before Bryson makes his grand entrance!!
this summer Addy's PT sessions are focused on her learning to drive her power chair. We are meeting her therapist Jayne at Greenfield Elementary and letting her drive either in the gym or through the hallways! Her teacher, Cindy is also joining in on the fun! So far she has only had two session since she had a few weeks of feeling yucky but she is enjoying it and to me that's all that matters!
Addy, Lambie and her PT Jayne
4th of July (before the yucky's really set in!
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