Update on Alana, my mil and Joshua and Shannons mom:: Update from 12/31 yesterday. Okay so here is what we know as of yesterday. Several doctors came in and this update will go thru each ones update to us. Sorry so long but this is the only way to easily update with details everyone is wanting and needing. ******* Pulmonologist: We arrived at the hospital this morning as soon as ICU finished their shift change (they do not allow visitors in from 7-830 am and pm). The pulmonologist, Dr. Giamo, came in ready to talk to all of us. He said she has non-specific pneumonitis. This is associated with connective tissue disease, which is generally responsive to autoimmune meds. The result is fibrosis in the lung. This is where the lung hardens and becomes less sponge like and cannot exchange oxygen. Fibrosis cannot be reversed. The Cytoxan is the next drug in treatment since the steroids did not work. This is commonly used in patients with significant connective tissue disease. She had the treatment yesterday and did well. Pulmonologist says 5-7 days to see if Cytoxan will work. He will look at how she does at rest and if she is less short of breath and also O2 levels and XRays. CT scans will not be done daily as those have significant amounts of radiation and she has already had two. She has been on steroids which they expected her to get better on but didnt. They had her on antibiotics on an off chance that all this was due to infection. They want to take her off this now. No active sign of infection. If the Cytoxan does not improve the lungs then this goes to the next and last step, which is a lung transplant. This has been discussed as the last resort of treatment if it comes to this. She would be referred to a tertiary/transplant center. There is still an air leak where they did the biopsy. The chest tube is still in place to allow an exit for that air. This site hasnt healed because of the autoimmune and the steroids. They have discussed doing a procedure that puts a talc in there to seal it (like a fix a flat), but that is on hold. Doing this would make any transplant surgery that much harder because it would be like a cement around that area. It could potentially downgrade her as a transplant candidate if it comes to that. The chest tube is okay to stay for prolonged period of time as needed. It does not affect her condition. This is a connective tissue disease. Blood tests show ANA elevated (a marker used to detect autoimmune issues) and other rheumatory positives. Specific condition could be one of several things that are cousins to lupus. Its not lupus but something else autoimmune not yet pinpointed. Goal is to stop the inflammation in the lung and stop the fibrosis from increasing/spreading. ******** Dr. Lee, the thoracic surgeon, the one who did the biopsy surgery and is monitoring the biopsy site where the chest tube is in place: He said she has pneumonitis, same as what pulmonologist said and there is fibrosis. The steroids improved her upper lung zones but the lower lung zones did not improve on the steroids (this is where there is fibrosis). He also talked about the talc procedure to seal the biopsy area that is still leaking air. Doesnt want to do this until we know if a transplant is in her future or not (consistent with pulmonologist). There is another procedure that can be done to seal the area called a blood patch where they would take 60cc blood and inject it for coagulation to seal the area. Just another option that will be considered of needed. His goal is to get her off the suction and ultimately remove the chest tube but out a smaller one in its place to leave in (a heimlich valve). Best indicator of her progress is if they can lower the volume of O2 flow to her. Both doctors said that nutrition will play a role in her healing etc. We are working out how to best get her what she needs for meals. No restrictions on diet but with this Cytoxan treatment her white counts will most likely decrease at times and she cannot eat any raw fruits or vegetables due to possible germs, bacteria etc. Also with autoimmune being an issue, removing all processed foods is key (this is our note on this from experience). ********* Dr. Sayed, Internal medicine. He is the quarterback over her care and team leader over the specialists involved: This is a connective tissue disease, not an infectious disease. So infectious disease doctor will be stepping away from her case. Her condition is autoimmune. The dental work she had done in October NOT a factor at all in this. He was very clear on that and we are glad to have that definite answer. Also, some mold has been found in the house AC system, but he does not see this as a cause either. (Personally we know that any toxins can be a contributor to furthering a condition though but do not believe this to be a cause). There is still no definite answer as to the cause or why this is happening, but we know this is autoimmune related. It is not unrealistic to say she might require a transplant which is why it is being discussed as a possibility pending upon how the current treatment works. ********* The rheumatologist did not come thru yesterday (team Dr. Bausch and Dr. D). We are trying to schedule a meeting with one of them. Will most likely have to be a conference call. We want to discuss his thoughts and opinions in further detail, as well as discuss supplementing treatment with nutrition and supplements to fight the autoimmune responses. This morning 1/1, we are finishing getting our must get done game plan and items completed. We are leaving tomorrow morning. We have been working on getting the household weekly schedule down etc, getting a grasp on grandpas meds and dispensing, and other items together to help the household and make easier for Pam and Jeff. We plan to explore additional resources as well that can assist Pam with grandpas daily activities so that she can have breaks so she will not have to be here all day every day long term. We are putting a calendar together for the house so they can work from it and we can also help track from afar. We have been gathering a knowledge base from Alana on any and all items. As Alana has been the primary caregiver, the goal and need is to transition all caregiver items away from her completely during this time, so she can receive the care she needs and focus on improving. This is a challenging time with so many moving parts and we will continue to work from afar to help in any and all ways we can and keep everything running. We did have a mini New Years celebration with Alana yesterday evening and even got in a few laughs which were needed by all. Much love to each of you. Thank you for continuing to pray for her, her treatment, and everything else. (End of update)
Posted on: Thu, 01 Jan 2015 16:06:57 +0000
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