Joy literally took more steps in the right direction today during her three long walks and sitting in her chair several times as well. Although walking helps to re-build her strength, the principal goal is to get her trained to take deep breaths instead of the shallow breathing she has been conditioned to the last year or so.
During the night, her left lung collapsed which was restored with a "bronc" early this morning. Her blood gas levels are lower than desired and the aforementioned deep breathing is needed to rid her body of carbon dioxide. She remains on supplemental oxygen at rest and while walking and although her levels are not at 100%, they are holding in the low to mid 90's. Remember, the goal is no supplemental oxygen since it has been proven to not be good to the new lungs. She had the third of four "nebulizer" type treatments today, designed to fight of infections that may typically come from air conditioner ducts and airborne bacteria. No additional drainage or IV tubes were removed.
It is becoming more obvious with each passing hour and day, that she will experience progress as well as set backs but there are no serious or long term concerns expressed by the staff that we are aware of. Risks remain quite high however.
Tonight she will have a tube inserted through her throat down to her stomach to be used to feed barium into her prior to early morning X-rays to ensure the doctors know exactly where to place the stomach feeding tube scheduled for surgical insertion tomorrow morning. They are still allowing her to take a sip of water into her mouth, slosh it around and suction it out. Nothing to eat or drink. Firm.
As I have stated previously, in a twelve hour day, we see her for no more than 15-30 minutes max and never with her during any procedure, walking or moving her from bed to chair. The one exception benefited Kayce today. She has been such a trooper and with us every minute night and day but has not seen Joy since Sunday pre-transplant. They are firm in adherence to the rule of no one under 18 near her in Acute Care. Since children seem to carry more contagious diseases than adults, they do not want the added risk. But today, Joy's walking course allowed Kayce to see her and walk by her side for a few moments. A blessing to both.
I have the sense that I am providing more detail than necessary but my intentions are to give you a written snapshot of what Joy and family are experiencing and allow you to share in this journey. Certainly the Beatles song, "A Long and Winding Road" applies to Joy and others with this disease, but we have more hope than pre-transplant. Overall, she is doing pretty good just three days out from surgery. We are really proud of her.
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5 comments:
Dear Bulla family-
I can't tell you how much we all appreciate your daily updates. I appreciate every detail you share with us.
Please know that we all pray for all of you. As we're typing your blog address, we whisper a small prayer. We hold our collective breaths while we read Joy's progress and let out a thankful sign of relief as we finish every entry. Then, of course, another prayer has to go up.
I just wanted you to know the process.
Ya'll are ever in our thoughts... Tell Joy to breathe easy!
Judi
To ALL of Joy's Family,
We want to say THANK YOU for the timely updates as it helps us to understand what you must all be going through. Our special prayers are with Joy during this time and each time she make another step in the right direction we all breathe a little easier, but always wishing that we could do that for Joy. Always know that you are all in our pryaers each end every time. Please give her our best wishes and let her know we are praying for her.
God's Blessing to you all.
Betty & Audrey
Thank you for the updates. We check frequently each and every day to know how Joy and all of you are doing. So happy to get the good reports. Tell Joy to use her trumpet breaths. Love to you all and prayers for you all.
Sharon
Please don't think you are giving too much detail! It really helps us understand what both Joy and the family are going through. Thank you so much for the detailed updates! (I'd thank you by name, but I don't know who is doing the actual writing...) We are praying for all of you, and most especially for Joy's ongoing recovery, with more steps forward than backward. May all the backward steps be mini-steps and the forward ones giant steps! Joy, work on that breathing...think of it as breathing in the Spirit of God with every breath.
Blessings,
Ruth and Miles
Joy, Wayne and Family,
It is wonderful to hear the progress Joy is making. We will continue to keep Joy and your family in our prayers. It is wonderful that Kayce and Joy were able to walk togehter for a little while. God Bless
John and Jackie
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