Greetings Team Ella, our little warrior has had a great week. Her lungs sound clearer, her x-rays have been clean, her vent settings are lessened and we have even been able to space out her respiratory treatments to every 3 hours. By all accounts Ariella is doing very well and yet this is exactly where she was Sunday before things took that awful turn. As grateful as we are to the medical staff for rescuing our baby it was very clear to us that had we not been in the ICU, Sunday could have gone very wrong. In fact we believe Sunday was God confirming for us a decision that has weighed heavy on our hearts, but one we arrived at more than a week ago. Rachel and I have wrestled and prayed and talked about what is best for our family and ultimately what is best for Ariella and we have decided to proceed with a tracheostomy. This is not something that we have decided lightly nor is it necessarily what we would prefer it is apparent though, this is what God wants and what Ariella needs. If there were ever a doubt Sunday's episode was unequivocal confirmation that we are doing the right thing.
So what happens next? The surgery is scheduled for tomorrow afternoon around 1:30 pm if it starts on time. The procedure itself should not take more than 30 minutes. Following the procedure Ella will return to the ICU where she will spend another week or two recovering. Following her recovery there's a very good chance she will be discharged to the Hospital for Special Care in New Britain, a city in the central part of the state that is closer to our home. There she will rehab and learn to live with her new trach. Simultaneously we will be trained as her family to care for the trach and confirm that we are able to keep her safe and provide all the care that she needs in the event that her nurses are unavailable. The amount of time she spends in rehab will depend on how well she does and more important how well we do in grasping the training.
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We are so grateful to everyone that has stood with us so faithfully during this difficult process. My employer Career Team, LLC has been amazingly flexible and compassionate during this time. Our church Faith Tabernacle has supported us through our move and continues to look to help us in every way that they can. And we cannot say enough about our friends and family that have come to paint our home - thank you Mom, Ike, Phil, Karen and Gretchen, stay with our baby in the hospital - thank you Grandmabuela, help with Charles and installers - thank you Miguel and Bishop and ensure that we have enough to eat - thank you Lala Ada, Dee, Barbara and Mother Stewart. If it takes a village to raise a child I'm so grateful to be a part of this village because you all make it possible for us to give Ella everything that she needs. We would ask you to keep our baby in your prayers particularly tomorrow afternoon when the tracheostomy is scheduled. Pray that the procedure goes well and that the trach holds. Pray that this surgery gives us our baby back and gives our baby her life back.
We are all more than conquerors!
My DH (Bill) and I have been following Ellas journey and praying for her (and you all). Bill has a respiratory compromise and we are very familiar with all of the events that Ella has experienced. Ten years ago Bill made the prayerful decision to go ahead with a tracheotomy and He did his recovery and our education at HFSC and continues to be seen by the Pulmonary Dept. there for his trech care and respiratory follow up care. We were very excited to hear Ella will be doing her recovery and education there as we know first hand what a wonderful place HFSC is and of course a hospital is only as special as the people who provide your care....HFSC is second to none! I'm sure you will meet Dr. Paul Scalise and Ellise Carroll (RN Pulmonary Rehab Coordinatory) which are just two of the many wonderful staff on the pulmonology team (these are two favorites of ours:). We are at HFSC often and hopefully will get to meet Team Ella very soon! You are all continually in our prayers and we rejoice with you for every victory! Love, thoughts and prayers, Sister Sue Yeske
ReplyDeletePrayers for your sweet girl. My 31 month old lives with a trach. He had the procedure at 14 months. I pray for a speedy recovery and rehab and you are all home soon.
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