It has been a long afternoon. The review committee did meet at 1:30 today and although we wanted to be present, we were told it wasn’t normal protocol and we would not be allowed. A nurse came to Samuel’s room at about 1:45 to inform us that we would be able to come to the meeting at 2:15. We went, they asked questions and wanted clarification on different issues; we spent about 30 minutes voicing our opinions and then left. They continued the meeting until probably 4:00 and finally decided to leave the decision of the home vent to us and made a couple of recommendations: to have a Cardinal Glennon pediatrician assigned to Samuel who is familiar with his situation and to have clear cut directives on what happens if he needs to return. Samuel will be placed on the home vent tomorrow and we will finish the training and transition home.
Yancy
Thursday, August 27, 2009
19th Update
It has been two weeks since my last update. Sorry, I just haven’t found the time to compose and send. Samuel is still in the hospital and doing OK. Samuel was doing good breathing on his own for three weeks before we came home; however, he was slowly requiring more oxygen support. We took him home and had no problem until the following day when began to have issues breathing. We finally took him to the emergency room at Cardinal Glennon. Samuel stopped breathing and we put him on a ventilator which breathed for him thru the night and the next morning he began breathing on his own again. The reason this happened is because Samuel is not taking deep enough breathes to expel the required amount of carbon dioxide, so over time it builds up in his system and creates an imbalance which will shut down his breathing. Samuel can be off the ventilator for a period of time, but until he is able to clear his own lungs he would die without it.
We are no longer in the neo-natal ICU at Cardinal Glennon. The emergency room transferred us to the pediatric ICU for a few days and then they transferred us the TCU (transitional care unit) in preparation for going home. Our home ventilator was delivered to the hospital and we were training on how to use it and the plans were to go home the beginning of next week. Samuel’s pulmonologist (lung doctor) who was working on the requirements for us to go home, left on vacation and Samuel was assigned to a new pulmonologist. We were blind-sided a couple of days ago when he informed Evette that he had an ethical issue with sending Samuel home on a ventilator and was calling for an ethical committee review board. He made this decision by looking at Samuel’s medical record only. He never introduced himself until he spoke with Evette to tell her of his problem and he never even physically examined Samuel before his decision. He spoke to her about his concerns of the quality of life for Samuel and our family. I’m not sure who gave him the right to dictate the quality of life for our family or to determine the values we teach our children; I thought God gave us that responsibility as the father and mother.
I don’t know much about this new health care program they are trying to pass, but from what I do understand, if it does pass we wouldn’t be talking about this situation in the future because we would have once again given up our rights and the rights of our loved ones who can’t speak for themselves. We have been told that they can choose to not allow Samuel to go home on a ventilator, but that would not be a wise decision on their part because we will not accept that answer. This review could go as early as this afternoon and we would appreciate your prayers. I will send another update as soon as we have more information.
Yancy
We are no longer in the neo-natal ICU at Cardinal Glennon. The emergency room transferred us to the pediatric ICU for a few days and then they transferred us the TCU (transitional care unit) in preparation for going home. Our home ventilator was delivered to the hospital and we were training on how to use it and the plans were to go home the beginning of next week. Samuel’s pulmonologist (lung doctor) who was working on the requirements for us to go home, left on vacation and Samuel was assigned to a new pulmonologist. We were blind-sided a couple of days ago when he informed Evette that he had an ethical issue with sending Samuel home on a ventilator and was calling for an ethical committee review board. He made this decision by looking at Samuel’s medical record only. He never introduced himself until he spoke with Evette to tell her of his problem and he never even physically examined Samuel before his decision. He spoke to her about his concerns of the quality of life for Samuel and our family. I’m not sure who gave him the right to dictate the quality of life for our family or to determine the values we teach our children; I thought God gave us that responsibility as the father and mother.
I don’t know much about this new health care program they are trying to pass, but from what I do understand, if it does pass we wouldn’t be talking about this situation in the future because we would have once again given up our rights and the rights of our loved ones who can’t speak for themselves. We have been told that they can choose to not allow Samuel to go home on a ventilator, but that would not be a wise decision on their part because we will not accept that answer. This review could go as early as this afternoon and we would appreciate your prayers. I will send another update as soon as we have more information.
Yancy
Thursday, August 13, 2009
18th Update
We did go home as scheduled and everything was going well until last night when Samuel started have problems breathing and we finally went back to the hospital. I will send more info when I have it. Please pray for his breathing.
Thanks,Yancy
Thanks,Yancy
17th Update
It has been a busy two weeks since my last update and a lot has happened. We are in the final preparation for taking Samuel home on Tuesday (Aug/11). Today is Saturday and we are doing our 24 hour Parent Care. This past week, we were trained on all the home healthcare equipment and have been checked off on all requirements, except 24 hour care. We will spend today and tomorrow providing 100% of Samuel’s care in the hospital. Evette will spend Monday coordinating last minute details and Tuesday we hope to be out of here by 11:00 am.
In my last update I asked for your prayers that things would finally level out from the surgeries and that he would get back on track with his progress. Prayer for continued healing, with no infections and no catheters. That all would go well with removing the G-tube and changing to the button; that he breathes well with no pauses or oxygen. Pray that his blood pressure would correct itself and as always, healing of the brain. Well we have many answers to prayer; things have leveled out from the surgeries, there are no infections or catheters; the G-tube was changed and he has a G-button that is working good and blood pressure has stayed in an acceptable range. Samuel had another EEG (brain wave) test and there are some additional signs of healing because there is more brain wave activity. His breathing no longer has the long pauses and his excessive “posturing” episodes have stopped. It has been a stressful two weeks with many ups and downs, but when we look at all the positives it has been a good two weeks and God has brought us to the point of going home.
Samuel still needs much prayer. For continued healing to all areas of the brain and for the gag reflex that we haven’t seen in a while. They are seeing enough brain activity now that we will have to be concerned about seizures at around six months. Although Samuel is going home without being on a ventilator, his breathing is not deep so he is still being assisted with some oxygen. We hope that all goes well when he gets home and that he continues to improve.
Again we thank you for continuing with us. God has answered prayers and I know He will continue to do so. I will send my next update after we have Samuel home.
Yancy
In my last update I asked for your prayers that things would finally level out from the surgeries and that he would get back on track with his progress. Prayer for continued healing, with no infections and no catheters. That all would go well with removing the G-tube and changing to the button; that he breathes well with no pauses or oxygen. Pray that his blood pressure would correct itself and as always, healing of the brain. Well we have many answers to prayer; things have leveled out from the surgeries, there are no infections or catheters; the G-tube was changed and he has a G-button that is working good and blood pressure has stayed in an acceptable range. Samuel had another EEG (brain wave) test and there are some additional signs of healing because there is more brain wave activity. His breathing no longer has the long pauses and his excessive “posturing” episodes have stopped. It has been a stressful two weeks with many ups and downs, but when we look at all the positives it has been a good two weeks and God has brought us to the point of going home.
Samuel still needs much prayer. For continued healing to all areas of the brain and for the gag reflex that we haven’t seen in a while. They are seeing enough brain activity now that we will have to be concerned about seizures at around six months. Although Samuel is going home without being on a ventilator, his breathing is not deep so he is still being assisted with some oxygen. We hope that all goes well when he gets home and that he continues to improve.
Again we thank you for continuing with us. God has answered prayers and I know He will continue to do so. I will send my next update after we have Samuel home.
Yancy
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