Tuesday, August 31 – No infusion today!
If we have learned a few things during our almost 13 years navigating the medical system, mostly here at Duke but I suspect it is the same everywhere, you live into “hurry up and wait” hospital time as well as just knowing that schedules and plans change for all sorts of reasons. We are grateful for the loving care and big brains who have saved countless lives, including our son’s, so we learn to have patience and know that things change from moment to moment in a hospital setting.
Heath and Chris had a HemOnc clinic visit, labs, and an echo (we do this each time to check his heart) this morning, but he is going to go back for his 3rd infusion at the Valvano Day Hospital on Thursday. It seems that this particular change is just based on staffing (more on this further down). Other than being annoyed at having to get up early multiple days, Heath was feeling good this morning.
Chris and I often “laugh” about some rolling lists that we have in our life:
- “They didn’t teach us THAT in seminary…”,
- “THAT needs to go on the premarital counseling list…”
- “NO ONE told me about THIS part of parenting…”
- and in the midst of this medical crisis, we are adding more to the “Medical information that I wish I didn’t have any reason to know.”
On that last list, this week we add to it some information that pertains to our schedule for next week. Since this week marks the end of the first three-week round, next week will be all about testing: Abdominal imaging to look at the impact of the first three infusions and the regular semi-annual heart tests that were postponed from when they were originally planned in early August (imaging, catheterization, and labs.) This week we learned that you can’t do a heart catheterization w/ coronaries (contrast/dye used) and PET scan and CT scan all on the same day. The contrast/dye that they use in all these scans has dextrose in it. PET scans need to have no contrast (dextrose) until right before you do the scan so you can “light up” the right spots. But you have to do heart cath NPO as well and also with contrast. CT scan also uses contrast. AND, contrast can also be hard for your kidneys to “get rid of.” So, alas, all of that is to say that Heath will have scans one day next week (probably Tuesday, Sept 7) and his heart catheterization early Thursday morning, Sept 9 instead of all in one visit as we hoped.
I suspect we’ll keep adding to that glorious list.
So, back to hospital staffing.
I got teary last night when I heard the news story of a US veteran who died from complications of gall bladder issues because hospitals were over-run and doctors were having to “play musical chairs” with care.
On Saturday night, right after I posted the last update, Heath got sick again. Heath said, “am I going to have to go back to the hospital?” and I said, “buddy, we’re going to do everything we can not to have to head to the crowded ED with all the COVID numbers rising.” (Obviously, we didn’t and thanks to a great medical team and a really kind pharmacist at Walgreens at 2:30 a.m., we have a nice stash of Zofran now.)
I know that people say that not getting vaccinated or even just not wearing a mask is their personal choice. But I would like to remind you that full hospitals and nursing shortages make it more difficult for OTHERS to get treatment for all sorts of other ailments–whether that be a cancer treatment or emergency gall bladder surgery.
I am not sure that that is exactly why Heath is not having an infusion this morning, but it was a good reminder to me of the way that burnout and shortages in staff affect all of us.
I am so sorry for your care struggle! These are hard times indeed! At UNC we are having to ask oncology patients if they are willing to travel for treatment so they can be seen faster when placing the order. The whole system is effected by this second wave. Hugs to you all as you navigate the waters.
Prayers. Prayers. Prayers.
Thanks for the update, Carrie. I know these are trying times for you all. Praying for tiptop outcomes in the weeks ahead. All love from the Bryan family. BTW isn’t the right word for that masked statuette “burst”, just asking… 😉
I can hear your frustration and you are entitled to it, and yet, you handled it so beautifully! It takes a lot of energy to cope with the constant changes and unknowns everyday, but I know that energy comes from all the love you have for Heath and everyone in your life. Maybe you and Chris can plan a special getaway for after Heath is better, and he WILL be better! Love you, Terry
One of the gifts to us is that we see the host of folks here who are on your team and pulling and praying for you! I am grateful to be part of that team. I’m certain yesterday was more frustrating than you reveal. May next week go more smoothly! Lots of love and prayers continue.
Sending prayers and love to all your sweet family. Keeping prayers going for all those in our medical communities.
May God give us all patience with one another.
💗
I imagine your list of what you didn’t learn in seminary will continue to grow.
Meanwhile, we’ll keep on learning and growing and changing and accepting and being mad and cry some too.
Heath was first on my mind when I woke up and you all are throughout each day.
Praying and hoping every day gets a little easier….
Love Love Love
Bless you all!! With love, we continue to pray for you❤️🙏🏻
You have made a valid important point about vaccine reluctance. And am so glad Walgreens responded. Keep the faith. We love you guys.
Thinking of you all so much these days. Thanks for your honest, at times humorous, and always helpful & thorough, updates. We’re keeping y’all in our prayers and hope the next round of treatments and scans go smoothly!
Sending prayers to your family! So many things your family is having to navigate ❤️
Well put Carrie! We are getting our booster in two weeks and can’t wait! I never knew about the contrasts in those tests. Sorry for another hurdle…. Zofran is my go to drug. I bet Ella Brooks is enjoying driving to school now. Big help🤗 When all is well we welcome you back with open arms❤️✝️ Candy McCall
Having been there when Carrie and Chris met, I’ll venture that I don’t think you needed this stuff in premarital counseling. You got what it takes!
William Anlyan, the man behind the mask. I worked in his office when the sculptor was commissioned to do the bust. Many, many hours of sitting for the finished product, all the while Dr. Anlyan had built Duke South and transformed Duke into a world known medical center. Duke Medical Center is where it is today because of him.
Prayers continue for Heath and the whole family. Yes, living in a “bubble” because we are not mostly vaccinated or wearing masks affect all the rest of us. I am still living in my bubble, along with so many, because folks have chosen not to get a life-saving and life-giving vaccine. Hoping we can all take care of each other with a little more empathy, compassion and selflessness.
Much love to the Tuttles,
Gran Sarah
We 100% Agree! We ALL must do our part to combat Covid! Continuing to send love, prayers and strength your way. 🙏💜🙏
AMEN!!!!!! I really don’t understand. This vaccine is a very small price to pay to protect my family and friends. This virus keeps going on and on. Prayers for you all!
So true, Carrie, especially the ‘choice’ to not get vaccinated and/or wear a mask. Really? Put on those big girl (or boy) panties and do your part! It takes all of us doing the right thing JUST BECAUSE IT’S THE RIGHT THING to get this virus in check. Hugs to y’all and hope all goes well for Heath next week.
100% agree on the importance of doing all we can to protect ourselves so that the hospital staff can do their job! All of this non sense regarding masking and vaccinations effects all of us. Sending you all love and strength.