March 29, 2013

UPDATE (3/29/13)
All throughout this experience we have been encouraged by many families who have had children challenged with various medical conditions, some with Beckett’s condition (HLHS) and others with just as difficult situations. Their words of encouragement have been very appreciated, and we too cannot wait to someday be an encouragement to other families as well.Towards the beginning of this journey we were encouraged by a story of a precious little boy named Bowen. He is the son of Matt Hammitt, lead singer of Sanctus Real. Bowen, too, battled HLHS and overcame many dark moments. He is 3 years old now and has successfully completed his 3rd surgery! Hannah Schooler, Bowen’s aunt was in Leah’s cabin at Miracle Camp. They have remained friends since then and have had the opportunity to kept in touch through Facebook. Today Hannah sent Leah the picture below. This was yet one of many very encouraging “gifts” we’ve received throughout this process. Thank you Hannah, Hammitt family, and especially little Bowen!

On to Beckett:
I failed to mention that yesterday was Beckett’s 3 month old birthday! Yay! He is getting so big (at over 10 lbs. now), and I’m so proud of how well he truly has handled everything he’s been challenged with. He’s such a strong little man!

Dr. Kumar (one of his Cardiologists) came in today and explained a few things that they are watching closely. Overall, he was very encouraging, but had to speak directly that Beckett has 1)weak heart function, and 2)a leak from his tricuspid valve. In addition to his HLHS condition and an enlarged heart, those additional two factors do not do him any favors. Dr. Kumar did say that Beckett can definitely “come back” from this, but that he is very “fragile” and will need to be watched closely until after his second surgery. I had to ask what the plan was (these are things I can’t help but inquire about), and Dr. Kumar said to basically continue to help him get stronger and bigger and hopefully (eventually) get us to take him home. If that doesn’t happen, Beckett will simply remain in the hospital until his second surgery, which can be as-soon-as late May but preferably June or July.

Leah did receive the dreaded phone call this morning from the doctor that Beckett had a minor episode this morning and desatted a little. Apparently it took him about an hour to fully recover, but he eventually did. Then later this afternoon I happened to look at him in a comfortable sleep suddenly awake in a fiery rage. He immediately turned beat red and was crying hysterically. We went and got the nurse and they consoled him back down. The odd thing about it was how quick it was…..and from such a restful state. They immediately did an X-Ray and everything looks just fine. They did another Blood Gas, and that came back even better than earlier today. Not necessarily as a result from these outbreaks, but they decided to give him a little bit of fluid because of the amount of Lasix he’s been given this past week….they think he may be a little “dry”. Lastly, they are creating a new wean schedule for him to hopefully respond better to than before. All-in-all, it was an “ok” day. He hope for more uneventful days and appreciate “slow-progress” more than we ever thought we could. Slowly moving forward is always better than any steps backwards.

Leah has worked the past few days. She’s had a great attitude throughout it all, but you can tell she anxiously wants to get back to her son. She got very little sleep last night, as did I. I was up until about 3:30am finishing my Thesis. Today was just a day of proof reading and waiting for Mommy (Leah) to come back. Unfortunately, she has to head back first thing tomorrow morning to finish her shifts for the week. So please pray for her as she finishes the week strong.

Thanks for all the thoughts and prayers everyone.
Truly One. Day. At. A. Time. (ODAAT)

#GoBeckett!

— with Leah ‘Whiteley’ Rupp at St. Vincent’s Women’s Hospital.

Bowen's Card

One thought on “March 29, 2013

  1. Sheri says:

    What an encouragement that others are there for you that have been there too. Love the pictures, very precious.
    May the Lord bless you and keep you, may he make his face to shine upon you. May you continue to experience His presence as you draw ever nearer to him.

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