Saturday, August 28, 2010

August 28: Day +57

I just had to share this... this was in the hospital pharmacy! After all, that's where I always go for a bike helmet and some antacids... not a bad price, either!

The puzzle continues...

Oy vay, folks, oy vay. I walked into the hospital this morning fairly confident that today would be a quick check in, rounds, then off to fun with the family at the falls.


I walked in and Bella's nurse, Chris, just looked at me. She did NOT have a happy look on her face. I walked in and saw the monitor, and understood why: blood pressure once again in the toilet. So, up up up we went on the norepi. No dice. We struggled with soft pulses on and off, which led to the blood pressure monitor not being able to read a bp on and off for a couple of hours at a time. Sam, her attending ICU doc, tried to place an A line today. No dice. After three tries, he just couldn't get her artery to hold still. So, no clear view of the bp.

After he left, Chris and I got to talking again. Remember, yesterday, Chris and I deduced the vasopressin's ineffectiveness. So, today, we got to it again. I realized that we were do to wean the hydrocortisone again. I told Chris that as much as I want to get the steroid out of the equation, I worried that Bella's adrenal insufficiency is real, and isn't gonna let us wean any further. Just then, Sam walked in.

He said, "We need to have a pow-wow. Do you have a minute?"

That's really never a good start to a conversation, so I prepared for what was coming. So, he spelled out Bella's problems. Then, he copped to the fact the the adrenal insufficiency might be the culprit, and that we need to go back up on the hydrocortisone. Thursday in rounds, he refuted my adrenal insufficiency theory flat out, but later that day I told him I didn't buy his argument for why not. That's what I really like about working with Sam. We agree/disagree/banter all with the same comfort level and hash out everything on the table without so much as a blip in heart rate going up for either of us. It's a good partnership. We're also pretty much the same age and have young kids, and so I think we just 'identify' with the other guy. Anyhow, I really appreciated him being willing to come around on this, because unfortunately, if you have adrenal insufficiency, no amount of vasopressor or IV fluid infusion is going to restore blood pressure. Hydrocortisone is the treatment, like it or not. Anyhow, it turns out that we are on the same page again today about the hydrocortisone as we were about the norepi yesterday.

So, new plan, yet again...

Now we are ramping up the norepi and hydrocortisone together in tandem and will use as much of the combo as we need to get her pressure back. Good news? We got her pressure back. Bad news? Her heart rate is now in the 160-180s. It's like whack-a-mole in Bella's room, folks. Anyhow, I had them go up on her precedex to help calm her down and lower her heart rate, and at least now we will be able to pull off some of that fluid...

... because on top of everything else, Prisma crashed again today. This is the second Saturday in a row this has happened. This is always a drag, because inevitably, Bella ends up with excess fluid on board by the end of the day due to the hours between when the machine goes down and when they can get a new circuit set up and running. It usually takes 4-5 hours to get back up, sometimes less if all the planets align.

All the while...

We got away for a few hours today to return to Minnehaha Falls with Ali. We KNEW she would have a blast there, so we put on our bathing suits and set off for some fun in the water!

Well, we had a blast, but the real treat was in meeting another family there who are from here. They have a boy, Collin, who is 6 months younger than Ali, and a girl, Aubry, who is 2 weeks younger than Bella! We noticed them playing in the water, and Ali wanted to meet "that little baby," so off we went. Well, we started playing together with them, and before you know it, we're all talking and playing and having a blast, moms, dads, kids, even aunt and uncle and their two dogs!

We used the "tag-team-time-to-go" technique (parents, you know this one) to get the kids out of the water and on our way, and as they were drying off next to us, Collin shared his graham crackers with Ali...

... and when it was time to leave, they instinctively took each other's hand and headed off together walking and talking away like best friends...

They wanted to go see the falls together, so over the bridge they went...

and up the path to the falls...

When the rest of us got there, Ali saw Aubry and gently walked up behind her and gave her a hug. It wasn't just any hug, though. It was the kind of hug a big sister gives to a little sister. Maybe the kind of hug this big sister has been dying to give for too long now....

Collin's mom was amazed at the spell Ali had put over him! He was acting so polite and calm... she asked if we wouldn't mind getting together again! I was hoping she was going to ask that because we felt the same way, but didn't want to impose. Anyhow, we exchanged phone numbers, and they offered to have us over and cook for us! The kicker was that as we were saying goodbye, Collin walks up to Ali and says something to the effect of, "May I see you again sometime?" to which Ali responded, "Sure."

I just watched Ali get asked out.

Oh, MAN, it was so cute!

Collin's mom, Deb, and Angelique both heard the whole thing go down as well, and we were beside ourselves trying to keep quiet! Anyhow, no sooner than we get to the car, I get a text page, "Hey, remember how we were going to invite you to BBQ? Well, how bout right now? We're in the park and have plenty of food!"

Before you know it, we are all sitting down together eating brats, burgers, and peanut butter and jelly sandwiches. After we said our goodbyes, we texted again tonight, and Deb reiterated their commitment to having us over and to do anything they could to help us while we're here.

When do complete strangers reach out like this to each other? Does it happen every day? Are we so inundated by bad news and tragic headlines, that we miss out on hearing about God's providence playing out in parks on Saturday afternoons? I tell you I am so unbelievably humbled to be in the middle of this ongoing story. I cannot help but end my days in utter gratitude for the world I live in. How could I not? I feel like a kid watching a magic trick for the first time. I am in awe and complete wonder at God's masterpiece: LIFE.

It's the best game ever invented.

Thanks for playing with us. Without you, who would we share today with? Without you, how could we glorify God's providence in all our lives? Who would we give our testimony to? The word that I often don't know how to use in the Christian sense is "witness." Growing up Catholic, it isn't used quite the same way. However, what it means to me today is that today I got to witness God's love poured out for my family by complete strangers. Mind you, they didn't know Bella's whole story till the end of the BBQ; they just knew we had a kid in the hospital. Good people are good people not for what's in it for them, but for what's in it for others. Another's joy is their joy. Another's comfort is their comfort, plain and simple.

We were blessed to meet some good people today.

You have to appreciate that between receiving your support from far and wide over the internet and through the mail, and the support we have received from so many on the ground here locally, we cannot go to sleep in any other state than one of gratitude.

Now, here's your challenge:

If we can got to bed tonight in an attitude of gratitude DESPITE Bella's situation, can YOU go to bed with an attitude of gratitude despite yours?

Good night.


  1. Why did the last question bring tears to my eyes? Because sometimes it is so hard to find gratitude in a tough situation. But I will try. And thankyou.

  2. "It was the kind of hug a big sister gives to a little sister. Maybe the kind of hug this big sister has been dying to give for too long now...."
    That line, along with the picture brought tears to my eyes. I know how close Ali and Bella are and I am really looking forward to the day when Ali really can give Bella that kind of a hug.
    Grandpa Rodger

  3. I am so happy that you found support after a rough morning and carrying lots of worry.
    You are being watched out for!

  4. Wow! This post gave me a lot of perspective! I think I will CHOOSE to go to bed with gratitude for all of the amazing gifts God has given me, instead of worrying about things that are minuscule in the big picture! You guys are amazing! Praying for your entire family tonight. Thank you for sharing you inspirational words!

  5. Meeting GOOD people is an amazing thing, what happened to you today is beautiful.
    And remember: you are in Minnesota :-) there are PLENTY of good friendly people up there! (I know, I spent a year in North Dakota - their friendliness towards others is no myth!)
    Love and hugs

  6. Since when do complete stranger write to you? It is amazing! Nice people at the park and on Intenet! You have a lot of love around you and your family.
    Hoping you will have a peaceful Sunday.

  7. What an expected drawback... Can they measure her plasmatic concentration of norep to find out how much is been clean up by dialysis? Is the blood pressure cuff giving correct measurements? Being it placed over her leg, which has several layers of bandages, could it be giving incorrect measures? An invasive measure (A-line) would give you a better picture... 'hope her arteries allow for that tomorrow.

    God's providence is amazing. He always makes sure our burden is as much as we can take.

    Keep the faith and strength.

    Carla, from Portugal

  8. My little girl died of JEB 42 days ago. It's difficult to be grateful in some situations, you know. Well, in fact I am grateful and sad at the same time.
    I am praying for Bella before you started transplant. I admire your optimism and courage and wish you the best!
    It is so nice that you have made new friends today. It doesn't seem strange to me - your family are the kind of people who attract others.

  9. So glad you have found a family you related to today!! Not sure if you have posted this before, but is there a PO Box or someplace where my family could send some giftcards/things too?

    Kara, NY

  10. Tim, you witness God's love to us each day. Each morning as I read Bella's update, I am brought to tears at the profound faith and love of God that you bring to us in your writings. My faith is growing stronger because of you! My prayers wrap you all in God's arms each day.

    Neysa - Denver
    HealthRhythms in Valencia

  11. More tears! What a day! Come on Bella!
    Taking the time for family outings takes courage and trust. The results are sustaining and bring renewed energy for the journey in themselves. Meeting that family, thanks to Ali's outgoing personality, is a lovely surprise gift. I love the pictures of her holding hands with Collin and hugging Aubra. What a mush!Praying for the day she can hug Bella. Love to all, Mom

  12. Isn't our God great? The way He orchestrates our lives and provides for us. Going to the falls and meeting your new friends was no coincidence. It was a God "thing." Oh, how He loves us! Thank you for that reminder.

    Lifting you all in prayer and looking forward to more stories of your new friendship. Those pictures just melted my heart.

    A friend in NC

  13. What you say is so true, I read with tears streaming down my face. I cried for your family, for my family, and for every family that has to deal with "stuff". I am totally amazed that your family provides me the emontial courage to deal with my minor family "stuff", when you have to deal with all that Bella and your family is going through. You are so right Tim, if you could go to be last night with gratitude after all you have been through, I can certainly try harder to look past my "stuff" and be grateful for the awesome life I have! So many days it is so hard to not say "Why me", thank you for being such a wonderful WITNESS!
    Prayers and gratitude -
    Tina & family in NJ

  14. Your comment about being in the middle of an ongoing story reminded me of the book I'm reading - A million miles in a thousand days by Donald Miller. Have you read it? I think you'd really like it. It's about living with purpose and being an active character in a story rather than a bystander. Just thought I'd give the recommendation... you know, for the leisurely reading you can do in all your free time.

  15. That's the best story ever. I always think "what if I was as friendly to every adult like my 2 year old?" It can lead to wonderful experiences connecting with people.

  16. For me it seems like I had to feel extremely low in order to feel the true bliss of life's highs. The miracles were always there but now II notice them. So glad you are feeling these highs despite circumstances. I always say that life is beautiful despite its annoying ways :) praying, praying, and praying more...

  17. I have not commented before, but read your blog every day, and think about Bella and your family often. Thank you for sharing your story. Not only do you gain strength from your readers' comments, but your readers gain a new perspective from you.

    I live in northern Minnesota, and am so glad you have experienced "Minnesota Nice". Although it gets unbelievably cold here in the winter, my mom used to always say "cold hands, warm heart".

  18. Jack and Molly's NanaAugust 29, 2010 at 8:52 AM

    Do you see it? Patience and care from Ali toward her new friends. Hmmm...wonder where she learned that? Knowing when and how to approach people isn't inborn, it's learned through observation. And she's had wonderful teachers. I'm so glad she got a little hug "practice" with Aubry for when she's finally able to lay one on Bella. And having another friend in Collin surely will be fun for her, especially when he comes with such sharing, caring parents. Serendipity! It's a good thing!

  19. I'm so glad you guys were able to have some fun! You deserve it! I hope things get straightened out with Bella's blood pressure soon! It seems like in all of your posts, they're right on the edge of something. I'm sure they'll get everything hammered out soon!

  20. What a powerful witness Tim! Its so good to see all of you smiling and enjoying the moment.

    Claire B.

  21. You are such an inspiration! Thank you for sharing your wonderful day with us. You truly are a witness of God and his love everyday as you share your experiences with us. So much love goes out to Bella and your family. Lots of prayers today asking God to help with Bella's BP and adrenaline. Stay strong.

    Take Care,
    Amber McLaughlin, CA

  22. Thanks for sharing! He calls us to love one another! What a witness!
    Praying for your precious girl and your family. Mary Chinn

  23. What an amazing story!!! God works through his people! Praying for Bella every day in Michigan!

  24. I am a daily follower of Bella and Daylon. I was so touched by the above post it hurt to hold back the tears so I let them fall. I am praying for your precious baby girl and in the days ahead I feel things will turn around and good progress will pervail. You are a wonderful family and I dont even know you..Well actually I feel as though I do know you...hoping for a really happy post later today..Your children are beautiful...keep that strong faith, it will carry you through...janet from CT