Hi Everyone,
So another week has gone by since my last update to you, I so wish I had great news. Some good news is Connie’s Bone Marrow transplant is fully grafted and Connie is building a new immune system quickly, her counts are great.
Unfortunately Connie has had a serious complication. Connie has been diagnosed with what they call ‘Diffuse Alveolar Hemorrhage’ (DAH) in her lungs. We got a call last Tuesday morning that Connie’s breathing had become extremely labored and her heart was in A-fib flutter. It was like she was running a marathon that had no finish line. On Wednesday morning the doctors decided to intubate her and put her on a ventilator to assist her breathing. Once they finished this process they did a Bronchoscopy where they took many samples from her lungs. All the cultures have come back negative for bacteria or viruses, but they found blood in her lungs with other fluid.
So what do we know today – Connie is tolerating the ventilator amazingly well. Her heart rate has slowed down and has mostly stayed in sinus rhythm since they intubated her. They have been able to decrease her heart medications and reduce the support from the ventilator so she is doing a higher amount of breathing than the ventilator. It is a ‘smart’ machine and supports her only when she needs it. To exercise her lungs and to test her breathing they take her off the machine and let her breath on her own for about 2-3 hours a day. The doctor’s assess ‘day-by-day’ when she will come off the ventilator and what her prognosis is.
For the ‘Diffuse Alveolar Hemorrhage’ (DAH) in her lungs, they have started her on massive doses of Steroids and are giving her many platelets to try and stop the bleeding. Apparently DAH is caused by the toxicity of the many rounds of Chemo she has had over the past months and possibly involving some ‘Graft VS Host’ from the donor cells & her old cells reacting to each other. The doctor said treatment is ‘one day at a time’ and they will see if they are able to wean her off the ventilator and she can breathe at a normal rate per minute and oxygenate her body on her own. Another big test will be if the bleeding stops with the steroids and what happens when they decrease the steroids in the next couple of weeks.
As we all know Connie loves to talk and is very social, being unable to talk with the tube in her throat is extremely frustrating for her. We are getting good at Charades, 20 questions (Yes & No only), and a small ‘white board’ that Connie tries to write on. She is weak and shaky from the steroids so that makes it an interesting guessing game much of the time. I can only imagine the ear full we will get when Connie is able to talk again. She will probably tell us she can not believe how stupid we all are. Much of the time when she writes it is to tell us to, “go eat”, “go home to bed”, most often not even thinking of herself but others. So I guess I don’t need to tell you that even though Connie is intubated she is awake a lot, she receives a little sedation during the day and a little more at night so she is able to rest more comfortably.
Goals for this next week are to get her off the ventilator, stop the bleeding, maintain her vitals on her own and get out of ICU. She has beaten the odds before so we are counting on her to do it again. Connie’s son & daughter-in-law from Texas are in town for a visit and Connie was elated to see them.
Thanks so much to all of you that have sent her cards, it not only helps her but her husband and family also.
Much appreciation to all of you, please continue to keep her in your prayers.
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