Sorry for not updating before now, we have had a rough couple of days. Ellie is a little more stable now and doing better than she was. Yesterday after the doctors put her back on the paralytic, they decided to try a different ventilator called an oscillator. We didn't think it was going to work for her and expressed our concern (they have done this before and she didn't tolerate this machine). They said they just wanted to try it for six hours to see if it would help her. It didn't help. It made her carbon dioxide levels climb very high. After each gas reading, when we were told what her C02 was, we said ok, enough, let's put her back on the Bi-Vent (the other ventilator). After the sixth hour, they made the change. Her C02 went form 111, on the oscillator (new vent change) to 40 something (way too tired to remember ever detail) on the tried and true vent Bi-Vent. This was actually too good of a C02 reading. Meaning they were over ventilating her and needed to back down the vent settings. So, in the mean time they started a few new medicines to help her and discovered her blood pressure was getting too low. Probably because her pain and sedation medicine levels were terribly high.... anesthesia level high. After making yet more medicine changed, her body started to respond better to everything.
After x-rays, ECHO’s, ultrasounds, lab tests and who knows what else in the last two days, we are without solid answers. The one important thing we do know is that her Pulmonary Hypertension has not worsened and her heart is unchanged, all positive things. Now that we are back at square one with no answers, along with our exhaustion, we are worn down. Frustrated like we cannot even begin to put into words. Only someone that has been through this type of situation can even understand.
So, some doctors think the chest expander will allow her airway to be more stable and some doctors don't know/think it will. It is the only option that has been brought to the table to help Ellie's airway/respiratory situation. I spoke to Ellie's surgeon last night and told him that we want a game plan and we want something done. We want reasonable parameters set on Ellie's stability and we want some form of intervention completed. We all know now that she is not going to get better on her own. We know that some form of procedure needs to be completed to help her. We continue to see our daughter get better and then turn right around and get worse again. The whole one step forward 3 steps back scenario. We feel like we may be running out of time to get her the surgery she needs. Don't get me wrong, we are not giving up hope on our Heavenly Father. We are to the point now where we believe that God may want to heal her through surgeons. We don't know our Lords plan in all this, but we are keeping the faith. We are continuing to trust that God's Kingdom will be glorified. But, we selfishly pray that His Kingdom is glorified in the same result that we want....to see Ellie be healed and for her to be a testimony to His power and glory. And, for her to go home with us and for us to raise her the way He wants her to be raised.
Please continue to pray for our baby girl. Our Lord is still at work in her life.....and in all of our lives. Please continue to pray for Riley, Payton, Jaxson and all of the sick children and their families. Please pray especially for Olivia's family. Olivia went home to be with our Lord last week. Please pray that her wonderful parents and family will be touched by God's grace and peace in an overwhelming way.
Thank you all for your continued support and prayers, we greatly appreciate it.
Matt (Ellie's daddy)
