Wednesday, April 27, 2011

Progress Report

On Monday my mom had her follow up appointment with her team of doctors and specialists. It seems so surreal that she has a "team" of doctors dedicated to her case. I absolutely think it is a miracle that we live so close to Barrow's Neurological Center... Barrows is ranked top ten nationally by U.S. News & World Report. What are the odds that we would be so close to such an amazing Institute? It's just another confirmation that God is so deeply intertwined in our lives!

On Appointment days I always feel nervous and unsettled. It's as though everything is hanging by a thread and I'm just waiting to see if life is going to be stitched back together or cut apart. It's been 3 months since her last big appointment... a lot can change in 3 months.

As with everything lately- the results of her appointment have been hard to digest. I can sense the fear and denial in both my mom and dad. It's as though prolonging the inevitable makes it all disappear. I so wish this was true. I wish I could find a way to escape. I've always been a realist. Although, I manage to stay positive to see the blessings and be gracious for what we have right now I can't escape the reality of what is going on. Endless sleepless nights and nightmares seem to be taking over my life.

After 3 hours and several doctors later my mom was given her prognosis.... 
  • Lung capacity has stayed the same at 32%. For now, we are grateful this hasn't decreased. Diminished lung capacity zaps her energy and makes things like eating very difficult.
  • Her breathing at night has become worse. She sleeps restlessly and often wakes to catch her breath. For this- the doctors have prescribed a Bi-Pap machine. The hope is that this will provide a better nights rest and  regulated breathing. If this helps- she will have better energy during the day!
  • Her neck muscles have weakened. This is significant because if controlled now- it can prolong weakness in her arms and hands. If the weakness continues it makes eating, swallowing and breathing an even greater distress. They have suggested a neck brace to offer support. (...a neck brace?! really? ugh, seems so trivial- and my poor mom is way too beautiful to be wearing a neck brace!) This of course will only be on an as needed basis for now... and for now- my mom has decided against it. Haha!
  • In addition to her neck- her hips have weakened. She was given instructions on how to get up if she were to fall. They also have suggested she use a cane to offer extra support. No one is ready for this. A cane? She is 50 years old and active and vibrant! There is no cane fashionable enough for her! :)
  • She was told that it is important to stay active and live her life. If she wants to go for a day of shopping they highly recommended she use a wheelchair. They feel so strongly about it that they have already taken her measurements. They believe the best thing she can do for herself is conserve her energy and use it wisely. Prioritize what she uses it on and walking across the mall is not a priority. ...my dad says we are too active as a family for her to have a manual wheelchair. If she needs a wheelchair then she deserves the best and it should be motorized. :) Unfortunately a motorized wheelchair is not standard- but we are going to try to obtain one!
  • She has lost 6 lbs. The process of chewing her food is very tiring and the medication she is on has drastically changed her taste buds. Because losing weight depletes energy it is crucial that she does everything she can to maintain her weight. They have suggested a high caloric diet filled with lots of butter, cream and milkshakes! She was told that she needs to start considering a Peg tube (feeding tube). It is recommended that she gets one before eating becomes a huge issue and while she can still take care of it. They say that at first you can choose to use it or not. It would mostly be there as a precautionary measure and to help sustain her energy when eating becomes too difficult.
  • There are several clinical trials being conducted right now that she qualifies to participate in. Her doctor highly recommended that she participate in the Peg tube trial that uses a high caloric diet. She is considering it... but honestly I'm not sure that any of us- especially my dad is ready for that. Although it could prove to be helpful- in a way it seems like giving in. We desperately need more time
Overall, I think she is handling this with such grace! She is fighting and staying strong. :) She is so positive and keeping her spirits up has done wonders!

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