Well I got a little ahead of myself on days but confirmed that this is day 212...Day 212 is filled with many blessings yet again. Bella LOVES her new trach. She has been awake and active for the past 2 days. I can't express how excited we are to have her back with the ability to move around without the fear of the ET tube coming out or her gagging on it. I just know she has to feel so much better!
Recovery from this surgery has been a success to say the least. Her oxygen requirements have gone down instead of up as we had been warned they may. She is on 47% oxygen today and still weaning. The tricky part now is weaning her off all of the sedation & pain meds she is on, this is a slow process. Even after her next surgery it could take several months to get her off of all of them. Our next step will be to get the upper GI testing done to see if she will in fact need a nissen in addition to a gtube. We are told this test should take place next week and hopefully the surgery for both if needed will be the following week. Both of these procedures will be how we feed Bella to deal with her reflux issues and avoid possible aspiration. As we know from past experience our plan here is dependant on her staying well and no other setbacks. We will approach this prayerfully and accepting yet again that God's timing is always perfect.
I haven't really had the chance to talk about what the trach actually means for Bella and for us. This is something that will be a part of her life and ours indefinitely. Some kids have it for 6 months, some for 2- 3 years and some for the rest of their life. There is no way of knowing where she will end up. What it means to us today is that Bella has a quality of life while being dependant on the vent. She is more mobile, can be held more easily and we can start to work on her needs developmentally. It means she can rest more comfortably and we pray start to grow and thrive. We had to accept that we will not hear her cry nor will she be able to fully talk with the trach in, it was a big pill to swallow but given the other options seems small in comparison. We will start working on our sign language now and gladly accept that this is another way we can grow & learn from our little angel. It also means that once she comes home that she will need to have 24 hour home health nursing at first. That is if Tenncare doesn't boot us when she gets home as they have so many others....that's another blog! It means that she CAN come home while still dependant on the vent, however with MUCH lower vent settings (this could also take a while...) No idea or talk of when she may able to come home, we don't ask questions they can't answer. We have been told that it would not be surprising if we remained a year. We are prepared for the long haul but hoping/praying for the best. A year out of our life seems like nothing when we look at the big picture that includes her!
I realized that along the way we have not fully updated anyone as to what any of this means long term for us as we have and still are only able to take it one day at a time. However I feel it is important for folks to know that what we consider "good" and "great news" now for Bella carries many special needs and even when we get home there is a long road ahead. I also think that it is important to know that we are completely at peace with where we are and for what is to come. She is as God has made her and that is perfect to us....We are only now starting to fill Dylan in on the details of what to expect with Baby Sister, we want him to be comfortable with everything before he sees her again. We are making a Baby Bella doll for him complete with a trach and later a gtube so he can see for himself.
Thanks again for your continued support. I say this often but it truly means alot to us to have so many folks that care so much. I get messages daily from folks that are not obligated to do so checking in on Bella and giving us encouragement. The Lord has truly surrounded us with the most wonderful people that we did not know that well going into this. It is a blessing!
Much love to you all
Telisha
I think of and pray for you guys often. Your strength and acceptance of God's plan is so inspiring!
ReplyDeleteHappy Holidays to the entire Cobb family!
I'm glad to hear that she's doing so well! It's also nice to hear you talking about the bigger picture and more long-term thoughts. I know you are still very much one day at a time, but even being able to think long term occasionally is a good sign and a good and healthy practice for you guys! Thanks for the info on the trach needs; I had been wondering what that would involve. And, girl, I hear you on the TennCare! We are up for recertification this month, and I'm crossing my fingers big time that it will work out for us. Our costs are not as great as yours will be, but with all her therapy, her special formula, her feeding supplies, and her growth hormone, our expenses (even AFTER our private insurance) run a few thousand dollars (and that's with no nursing). Ugh! Hope that road is smooth you guys!!!
ReplyDeleteDay 212.Amazing is it not that 211 days ago at 7pm an angel opened her wings and flew to this world in all her glory. Doctors saying she would not make it for 24 hours.hmmmm Hello 24 hours ! Not only has she made it her 24 hours but within that 24 hours miracles began to open many eyes to the true surroundings of a true angel named Arabella. This little angel/ solider of God has fought the battle , lead the weak to the Fortress of God, Brought Faith, Love , Understanding, Compassion,Patience,Healing, and full subjection to the Greatest of all Beings our Lord and Saviour Jesus Christ to much needed places, . Now we enter the holiday season which commemorates the birth of another miracle. With that birth there were dangers, sacrifices to be made , worry and much more. He was the first of many miracles and today Bella is yet another miracle given to this world from above. She is perfect. She is his solider. She is his angel. We praise the father for sending her, for her telling the works of miracles through the actions that have unfolded with her and her family. No she has not spoken the words but always remember, actions speak louder than words and Bella is letting her trumpet sound! When you see her smiles, that is the sunshine. Her path is laid out , she is following it as God has planned and the most beautiful rainbow of all awaits at the end of it at home with her mommy, daddy, an big brother Dylan as well as all her family and friends.May God continue to heal and bless Bella. May he keep her family ever so strong. May he pick them up and carry them anytime they may need it. God bless Bella, Dylan, Telisha and Chris and God bless the little children
ReplyDeleteI have been following your blog since June. I came across it thru the Fundraiser that was held for Baby Bella. Today is my daughter's birthday. She was born 7 years ago at 26 weeks 3 days. She is now a happy healthy girl. I pray for Bella and think of you often. I am so glad things are progressing well. Bella sounds like a wonderful little girl who obviously has the strength and determination that her mother has! You have hit the nail on the head on so many things, the emotions, to trust your instinct, being Bella's advocate, and also prayer. I will continue to prayer for Bella, you, and your family. God Bless.
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