4/13 Afternoon

Becca is still hooked up to the ventilator, and we are expecting to be here for another week or so; not sure if she will be hooked up that whole time or not. Becca does not really look like herself with the tubes and tape around her face and nose, and she is being kept sedated so that she doesn't wake up and cause damage in a panic.

This event appears to be primarily a respiratory failure, meaning that it is not currently being complicated or compounded with other system failures (i.e., renal or cardiac). This offers some latitude in treating her breathing. Today she had another peripheral IV put into her right arm and a "A-line" in her left. The A-line is like an IV except that it is tapped into her radial artery, which gives them real-time blood pressure and access to arterial blood. Good thing she was asleep for these!

Her chemo has been suspended for the time being, and we have not been given an idea when it will resume. We feel like Becca is in good hands with the ICU team. It is a very different culture here than on A5S... not bad, but different. The nursing and medical staff on A5S is a bit more nurturing and relationship-attuned, while the ICU team is much more task/treatment focused. This makes some sense, and actually, we appreciate their efficiency and rapid response. I do not intend to take anything away from either team, just another of my pointless cultural observations. FYI few people on the ICU begin their statements with "so...."

Ellen, thanks for the "Amen" re: eviction from A5S. I met with the Family Sevices liaison this morning; she was more in the mode of conflict resolution than anything. I am getting in touch with the Famiily Advisory Council as well to see if there is way to improve the quality of communication and to address JAHCO's regulating this joint into absurdity regarding the windows on the wards. I was encouraged to apply for a place on the Family Advisory Board - LOL. Trisha does not think it is such a good idea. She will not let me run for the school board either. My verbal filter runs a touch on the free side.

Becca is receiving a great deal of platelets, plasma, and blood. I will give another call for folks to go to Hoxworth to make a donation of blood or plasma, if able. I am not really sure how the procedure is different with regards to time and volume but know that they want and will take both. Mention Becca when you go in, even though it will not be directly for her. I have heard from a few people that when they went in and mentioned her that the Hoxworth folks said others had been in recently for her. Lots of other kiddos and adults are in need, too!

By the way, Trisha and I were "swabbed" in the clinic yesterday, and Lily was today.  This "high tech" test entailed rubbing two long Q-tips at a time on the inside of our cheeks, rolling them around to get cells on them.  We each had to do this six times on each side, to total 24 swabs per person.  They then put the swabs in a regular paper envelope, sealed them in a plastic bag, and sent them off.  This test will determine whether we are bone marrow match for Becca.  Lily will likely be the best match (she has a one in four chance); however, she is very nervous about being a match.  We should know the results in a week or two, but when the nurse from the Bone Marrow Transplant unit met with Trisha, she told her the good news that Becca's HLA type is very common.

Please continue the prayers and positive thoughts... we can use them!  We are so lucky to have such an amazing support system of people who love Becca (and all of us), and we thank you for your continued help in getting through what has been the most difficult and emotionally draining time of our life so far.


Wendy said...

I am scheduled to give platelets soon at Hoxworth and have done it many times. It is a more complicated and time-consuming process than giving regular blood, but not bad at all if you're already okay with the needles.

Anyone who has questions about it can contact me directly if they want a first-hand account.

Love and peace from Ashwood....


Timmiera said...

It was so good to hug you last night. Thoughts and prayers are flooding your way. Chin up, deep breaths and only the positive! Let me know what else you need!
Love and Light,

Unknown said...

Continue to follow your updates. You remain in our prayers. Yes, a Family Advisory Council could use your common sense and sense of humor perspective. Remember though, " When you live in an old house; get along with the plumbers in town." I would suspect that there are likely to be staff who would like some support to find a 3rd way to give good care, and meet the accreditation standards and support families. Much love to all, Laurel

alyvinnage said...

Ethan and Trisha-

You don't know me but my church congregation here in Loveland has been praying for your beautiful Becca. I have been asking my friends and family to pray for her and your family too. Tonight I was contacted by my friend who is willing to donate cord blood to Becca if this would help her. As I am unsure how that works, I don't know if it would be useful to her specific type of Luekemia. If you need more information, I can put you in touch with my friend.

I will continue to pray for strength and healing for Becca and your family.

Alysson Vinnage

becca.blog said...

Thanks so much for the kind words and offer. Currently, we are waiting on the results to see if one of our family members (Ethan, Lily, or I) is a match. We haven't met with the Bone Marrow team yet, so when we do, I'll ask and let you know.
Thanks again,