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?