Sunday, July 25, 2010

July 25: Day +23


Daylon's mommy Jennifer got this for Angelique for her b-day... poignant, eh?

Where is the summer going?

Last summer we were holed up in our condo learning how to care for Bella, and this summer we're holed up in a room that maybe measures 10' x 10'. I was just typing the date and I simply couldn't believe it is July 25 already. Are you partaking in and enjoying this summer? Please don't take it for granted. We are doing what we can to catch a whiff of summer, but it's not quite fully available to us, for as long as Bella lies in an ICU, how can we really enjoy summer without her? So, make plans. Do something that you can only do or would only want to do in the summer. We live in Southern California, land of endless summer, and many of those where we live don't understand seasons like those who live up here. I watch people up here genuinely delight in a blue sky, or in a warm day, because it may not be that way tomorrow. For that matter, remember to delight in those you love on a daily basis, because you may not have that chance tomorrow.

Today, a bittersweet moment occurred for us when I opened the door to our apartment, and the little boy who went in for transplant the day before Bella stood in his doorway... home. He was on a day pass and will be discharged tomorrow. It was so nice to see him look so good (except for being totally bald of course), and the look on his mom's face... the relief and joy... it was wonderful to see. She and I ran into each other on many a late night during our two kids' chemo and I remember how tired she was as she was up here alone with her son. To see them back in their RMH apartment meant a victory within his battle, and you could see it on their faces.

What made it awkward was when another neighbor came by right then, and after a sentence to the mom, turned to us to ask us how Bella was doing. Upon hearing that she would be in the ICU for another 2-3 weeks, the space got really heavy, and we kind of retreated back into our room so as to not spoil the moment. Our kids' treatment took very different paths and ended up being almost polar opposite each other, and while we are happy for them, we are sad we didn't have the same luck. It just hammered home how far away it feels before Bella will be sleeping in her pack and play next to mommy's side of our bed. Man, that vision seems far, far away right now.

HOWEVER, having said all that, it was another good day for Bella. It would appear that for the moment, we are moving in the right direction, albeit unbelievably slowly, but hey, we'll take it! We met with the ICU attending doc, Dr. Somani, and he was "quite pleased" with Bella's progress in the past 48 hours. He feels we have come quite a long way this week, and his facial affect was lighter and brighter today than ever before when discussing her. Today was his last day on rotation and I told him how much I was going to miss him. Seriously, I think so highly of him. We also lose our attending resident tomorrow, Chris, who has been on the case since Bella was transfered to the ICU. He has intelligence, confidence, and wisdom far beyond his status as a young doctor, and I must admit that it is going to take one extraordinary resident to fill his shoes tomorrow morning. I didn't get to talk to Dr. Verneris, the BMT attending doc, today, and if he rotates tomorrow as well, I'm gonna to have to lead rounds myself. Needless to say, I will be in early just in case this is the case to make sure by the time everyone walks away from Bella's door, they are FULLY BRIEFED on her status, trajectory, and my role in her care.

Here are the numbers:

Weight: still no accurate weight. The crib is being weird.
I/O (fluid in versus fluid out): -224 mL !!!! YES!!!!! Best to date! The goal is to be -220-240 per day so that at the end of the day, dialysis has not only pulled off everything they've put into Bella over a 24 hour period, but some of the excess fluid she has been retaining. She is still up at least 3,000 mL, so you can see this is going to take WEEKS to get all that fluid off her at this rate. That's okay. Everyone is okay with it taking that long if it has to in order to keep things moving safely.
Creatinine: (protein waste in the blood) .36 !!! Record!! Her Creatinine was .29 at admission!
BUN (Blood urea nitrogen... waste): 11 !!! Ditto here. Bella's BUN at admission was 9.
WBC (white blood cells) : 5.7 inched up 1 tenth from yesterday. We'll take it.
ANC (absolute neutrophil count) : 3.1 inched down from 3.3 yesterday... no cause for alarm.
Platelets (blood clotting agent) : 19 (needs to stay between 20 and 30 or else gets more)
Bilirubin: 2.6 LOVE THAT! Down from 4.3 yesterday!
CSA(toxic immunosuppressant): 500 Bad. Too high. Target is 250 optimum, and 400 at most. Doesn't make sense. We'll be figuring this out tomorrow in rounds.

Bella is receiving formula on a s-l-o-w drip through her j tube. This goes right into her small intestines and keeps them functioning. She is tolerating feeds well so far, and they have been increasing her amounts in little increments. We like this because the more she poops, the more bilirubin she excretes from her body, and this will help in her fight against her V.O.D.

She is still on 2.5 to 5 of dopamine to help keep her blood pressure stable during dialysis, and so far, it seems to be working. They will start to ween her off the hydrocortisone (steroid) tomorrow to see if she can hold her pressure up on her own. We really don't want Bella on a steroid if at all possible.

Dr. Tolar came to visit this evening as well. He was very pleased with Bella's skin. Her skin has improved over the past 48 hours as well. Her wounds/scars on her thighs that were puffy, raised, and purple 2-3 days ago, have receded and are pale pink. When he asked me if I had any questions, I asked him if he thought we'd make it back from where we are. I told him that we knew he warned us it would be "intense," but 6 weeks in the ICU was NOT what ANYONE had in mind when he used that word! He responded by saying that many, even most kids who have been where Bella currently is have made a complete recovery. He said that he or I would never make it back ourselves, but that infants are far, far more resilient than we are. That was good news to hear because Dr. Tolar is eastern Eurpean... stern, precise, and not one to blow steam at all. So, when he is hopeful, I am hopeful. Dr.s Somani and Tolar have impressed me the most in my stay here thus far, and to hear both of them give a positive assessment of Bella today made the pain in my chest and head go away for the remainder of the day! That was a welcome relief!

In other recreational news...

We took Nanny on another retail therapy pilgrimage... this time to "T-1," the very first Target, which has been rebuilt as a Super Target. Man, is it... SUPER! The problem was that all three of us ended up with shopping carts, and stuff you buy at a Target resembles water in that it will fill whatever sized container you give it. 3 carts empty at the start equalled 3 carts FULL at the finish! That one hurt a little, but we needed a whole mess of "stuff", so whattayagonna do?


A monument to suburban shopping history...

So, all in all, a good day for Bella, and a good day for us. We'll take it with much gratitude. Thanks for holding us in prayer these past dark days. It has made all the difference. I know I wouldn't be half as strong at this point without you praying for us and literally cheering us on. I am running out of analogies or metaphors, and I feel like a broken record, but as you keep blessing us, I keep thanking you. It's the mutual admiration circle! Hey, it's working, so please, keep it all coming!

In addition to charging you to maximize your summer and delight in your loved ones, please say a prayer for parents who go to bed tonight fighting similar battles we are here, but who don't have friends, family, or faith pulling for them, who aren't blessed to be in a Ronald McDonald House, who don't have the right insurance to get the treatment their kid needs to stay alive. Man, there are so many that have so much less than we do, and yet are fighting similar or worse battles every day, all over our country. If you live near a children's hospital, plug in. Find out what little thing you could do to help out. If they have a RMH, sign your church group up to cook a healthy meal. I'm not interested in what you already do, either. I am challenging YOU (the person in your chair reading this) to

DO ONE NEW THING to
RAISE THE BAR to
MAKE A DIFFERENCE in
YOUR COMMUNITY.

How will YOU answer the call?



12 comments:

  1. You know who will be calling the RMH behind St. Joseph's tomorrow, right?
    Thank you for the reminders...we are lucky indeed.
    Love the great numbers and happy doctors.

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  2. I don't know how you do it day in and day out. You are so strong. I look at my two precious babies every day and I thank the Lord for them and their health. Thank you for the challenge to help our in my community. You are right, there are so many children out there who are sick and their parents are helpless because they don't have the resources. I am thankful for my healthy children and for that I will give thanks by helping those who need it.

    I will continue my prayers for Bella and your family. God Bless!

    -Amber McLaughlin, CA

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  3. Hi Tim, my family has been driving to Florida from West Virginia for the last two days and so I had to catch up on your Friday, Saturday and Sunday posts. We're finally here, and it's 2am and I cannot stop the tears. Your post about missing Bella touched me deeply. I just can't imagine how you find the strength to go through these difficult days. Not to be able to feel your daughter's gaze on your face, or see her smile. Then I remember one of the comments...that there are only God's footsteps in the sand now...and I know. He will keep you and Bella, Angi and Ali wrapped safely in His arms. He will bring you new peace and hope every day. And for Bella, beautiful baby girl, He will bring her health.

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  4. Glory be to God for listening to our prayers! Thank you Lord for another day of great news. This morning at church during songs & worship, I sang with all my being and thought of Bella, as the congregation sang praises to our Lord. Our Loving Lord is in control and I thank him for his continuous love, mercy and grace. I have to admit that I don't recall praying this hard for another being....I can see how the Lord is drawing us all (across the nation) together because of Bella. I promise to continue to pray for Bella (even after her recovery) and for every family that is/had/will endure the pain and heart ache you have crossed upon. My family (we are Romanian), has built 10-20 homes (or more...lost county) in Romania for the poor...built several churchs as well...and lastly turned a home into one BIG kitchen. The BIG kitchen can be accessed by a window in the front of the house, and we cook/provide staple foods such as: rice, corn meal, beans, flour, etc. The poor/less privledged come to the 'window' daily for food for their family & take whatever it is that they need. Some of the food is already prepared, and some is bagged up for later use (to make bread, etc). I also send packages of children's clothing to Romania,children are so innocent and breaks my heart b/c they can't choose the life they've been given...sometimes we get caught up and let the most pettiest (is that even a word/right spelling..haha!) things get the best of us. We always have to remember, that when we 'think' we have it bad...we should be giving glory to God and be thankful for what we have or what we are going through...because there is always someone who unfortunately, has in worse.
    You & Ang are truly an inspiration to me...you have a great outlook and balance on life. I am sold that you truly cherish life!! So cool that you made it to the '$100 Store'...I mean Target...haha...(I can NEVER get out of Target w/o spending min, $100). Thanks for the history on the FIRST ever Target :)
    Thanks again for the update and for keeping us in the loop!

    My prayer for tonight, is that the Lord touch upon and prepare the new incoming staff to be clear minded, have great hearts, to all work in the same direction, be on the same page, and to do what's best for Bella! Please Lord contiune to lay your hand on Bella, and please help her to respond great to the weening of the hydrocortisone and please help the CSA numbers return to the 250 range. Thank you Lord for touching upon all the other numbers...we are so happy to read that the counts are returning to the #'s they were at when Bella first started treatment! Please continue to hold Bella, Ali, Ang, Tim & family in the comfort of your arms. We thank you and praise you.
    AMEN

    Alright Bells...I'm off to bed...cant wait to check in with you tomorrow.
    nicole

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  5. Carla and MatildeJuly 26, 2010 at 4:08 AM

    Dear Tim,

    Such good news! I just love to read "good days".

    Thank you for remind us and inspiring us the importance of helping our community. Your blog has been as inspiration to me and I am currently setting up an EB community in Portugal.

    Keeping you all in my constant prayers,
    Carla and Matilde

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  6. So glad to read the good news... may she continue to impress everyone around her with her healing spirit. I think I'll find our local RMH!

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  7. I don't know how you do it. You and Angelique's strength during this time is amazing. Thank you for sharing your and Bella's story with us.

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  8. Hi Tim:
    So happy to read this blog. You sound so much better and more calm. Thank God for taking care of beautiful Bella. Hang in there guys, your EB family is out here praying for your family. Take care. Love Leah's Nana

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  9. What a great update! I am relieved to hear the doctor say that he feels confident she will get through this, and that she is doing good. I hope that last number goes down and behaves like the rest of the numbers.

    I have that same Willow Tree figurine. It's beautiful, just like your wife. :)

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  10. Lynne, Bob, Jack and BenJuly 26, 2010 at 9:30 AM

    Go Bella go! That beautiful girl is stronger than any of us know. And you singing to her, kissing her, reading to her and fighting for her is giving her more strength in every molecule. We're holding her in a circle of healing light. And, we're finding out how to support RHM at Phoenix Children's. Love you guys.

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  11. Tim you really are an amazing role model for people! I read everyday and am so amazed by your faith. You are truly wonderful and Bella and Ali are so lucky to have you as their daddy. You do a job most people could not! We love you and are holding Bella close to our hearts...very very very close.
    Love Always,
    The Vanderbooms

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  12. Praying for sweet Bella.. Today I have sent a large bag of pop tops from soda cans with my daughter to the Nashville, Tennessee RMH. It's not much but they say it will provide at least one nights stay for a family!! Everyone can save pop tops!!

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