June 23, 2011

Surprise Surprise!!

Hey everyone!
We came in this morning to great news! The doctor decided that Jenna did sooo well last night during her trial without the trach, that there was no reason to keep her another day. Wahooo!!! Before leaving, we were given instructions-no submerging under water til stoma closed, keep supplies in home til next appt, scope in 4 weeks, etc. Her cardiologist nurse practitioner stopped to say hi and sign a few papers. Jenna was happy to see her! A new face, since she was tired of seeing everyone else, especially her nurse for today! Such a moody little diva! We were given instructions that we did not need to monitor her overnight with the pulse ox from their perscpective, we will continue for one month per the ENT team and then stop. She said that there was no reason for extensive monitoring since she has been doing so well!! Everyone is thrilled with how she looks. We were also informed the echo test that she had done on Tuesday came back normal(well Jenna's norm-no changes from before). No change is good. So we quickly packed up, said our goodbyes and ran over to the Ronald McDonald house to check out and pack up the car. We finished there and moved on down the road. We asked Jenna where she wanted to have lunch and guess what.....Nonald's(McDonald's-go figure). So we quickly had some lunch and got down the road. The ride went well and we made it home around 4. She was very excited to see daddy! We had her post visit with the nursing group and then we settled in for the evening. It was great just being able to give her a bath and trying to do just normal night time things. We are continuing her breathing and vest treatments for two weeks and then we are allowed to stop. We still do feeds at night, but hopefully soon we can get Jenna to take a supplement by mouth and then we will get to stop those. I did place a new band-aid(Snoopy as requested) over her neck site(which is closing nicely and looks great) and did her G tube care--all while Jenna sat on her daddy's lap. This was so great because there was no struggle, I could do it myself and it took less than 5 minutes!! As the routine for her diminishes and changes, I don't know what we are going to do with our time. It is just crazy and I think that I am still trying to get used to it, not sure if it has hit home. But boy is it different...but in a good way.
She is now settling in for the night and daddy is getting her to sleep. She is doing so well and it is amazing the little girl that she is turning into. So sad, but we are happy and proud of her too. When we left her practitioner today, I said we would see her in almost 12 months, since her cardiologist wanted her to wait to come back. Her response was "I'm happy, but sad too." Funny how you get used to a life and your routine and when things change, it is hard to adjust. Everyone is so thrilled with how well she is doing, but when you have gone to the hospital as often as we have for the past 4 years, when the routine stops, you don't know what to think. I know it may sound crazy, but for those of you have maybe lived this type of life, you understand. These people become your family, that is the only thing you look forward to when returning is the fact that you get to see them and catch up. Plus in a sense with Jenna's type of situation and her condition, it is great that she is finally settling and doing well; however, we are not coming back for so long also because there is not much to do to help her. Her condition only has so many options, it is trial and error and at this point, he will just watch what he has fixed and make sure it stays open. Plus, her cardiologist wants her to just live her life and be a kid. We have all got our first wish in that process-getting the trach out. We will scope in late July, making sure that she is closed at her site. Then next step is our first FAMILY VACATION!!! We are hoping if all goes well to be going to Florida to visit Justin's aunt. We are so blessed to be able to have someone when can stay with and have a beautiful, enjoyable vacation. We are soooooo excited!!!
Thanks to everyone for all the love, support, care, thoughts and prayers. It means so much to us. Jenna has hit yet another milestone!! She is getting soooo big!!!!! Plus, she is attempting the potty training process. Before leaving for the hospital she peed in the potty a couple days in a row-even pooped!!! Tonight we came back and she wanted to try again, no success but at least she got on it!! Such a big girl!! I will keep everyone posted on how she is doing. We love you all!!
Love, Jenny, Justin and Jenna

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