April 10, 2013

UPDATE (4/10/13)

I must begin by warning you that this is not a “good” update.

As many of you know, we were prepared to transfer Beckett this morning back to Peyton Manning for a HIDA scan. This was a test to observe Beckett’s Liver, Gall Bladder and Kidneys. Well, they tested his Bilirubin again this morning, and it went up a lot once again. This inspired the decision to skip the HIDA scan and begin the conversations for interventions via procedure/operation.

The first theory seemed quite noninvasive. We heard one technician say it may only take 10 minutes to complete. They were also talking about trying to just do it here rather than being transferred over to Peyton Manning. These conversations were quite encouraging and seemed quite doable.

As the day progressed, we were preparing ourselves with questions for the care conference later in the afternoon at 3:00pm. At around 2:00pm, one of Beckett’s primary physicians came in the room to update us on the current plan for Beckett’s operation (as we had been thinking that this would have been “done-n-over” by now). Plans actually changed multiple times throughout the conversation. By the end, it was determined that Beckett needed to be transported to Riley Hospital for the best care for the particular procedure they are recommending. This was interesting news and definitely evoked further questions.

We then began our care conference with a room full of his primary specialists for his various areas of concern. It began with a conversation about his consistent and continual rise in his bilirubin level. Eventually the cardiologist spoke up and shared her concerns. This is where the vibe of the day takes a sharp turn.

The Cardiologist proceeded to explain her theory that she believes Beckett’s Liver, Gall Bladder, and Kidneys are being affected by his heart. She continued by reexplaining that Beckett’s heart is still enlarged and not functioning as well as he needs it to. She seemed to follow each statement with the words “I’m concerned”. She has always spoken very direct with us. In fact, she was the first person to really explain Beckett’s condition when we first arrived down here in late December. It seemed as if she was concerned enough about Beckett’s condition to reinforce any risks the “operation” may have on Beckett. She said that Riley will evaluate Beckett from scratch to even determine how safe this “procedure” will be, because there is always a chance with how fragile Beckett is on if he can/will even survive it. Additionally, she shared her concern on if Beckett will ever be ready for the phase 2 operation (for his HLHS). She didn’t necessarily seem convinced that he will ever quite develop enough to be ready for it. Furthermore, she discussed with us the very real potential for Beckett to possibly require a heart transplant. She explained the risks involved with that, but mostly focused on the fact that Riley can actually do transplants if we ever get to that stage (and St. Vincent’s/Peyton Manning do not).

After she explained these “concerns”, hardly any of our premeditated questions were even applicable. It was hard to know what to say. One insignificant question came to mind concerning moving out of Beckett’s room (aka: taking down all his pictures, decorations, etc). Other than that, it took all that we had to make it out of the room with a “thank you” without crying. Walking back to Beckett’s room was a blur. Our eyes filled with tears, and Leah and I just held each other for a while and cried.

The Cardiologist met up with us once again in Beckett’s room, to offer us an opportunity to privately ask any questions we could think of. Unfortunately, our questions were so direct, her general response was “I don’t know” or “I’m not sure” “…I’m just concerned”.

After she left Leah and I took a walk outside.
-more crying-
-more hugging-
Our concern is not necessarily just going to Riley, but rather the fact of feeling like we are starting all over again with brand new doctors, surgeons and nurses….but more-so the overwhelming concern that our Cardiologist made evident. I could spin this in “good light” and “good perspective” (like: fresh set of eyes, option for transplant, continual and respected reputation for patient care), but it just currently seems more fitting to just say nothing. I would just look into Leah’s eyes and cry with her. I still trust in God’s control, but mourn in the unknown. We are forced once again to trust in our Savior and his sovereign plan. This is a lousy situation, but we press on one step at a time. There is no reason to get ahead of ourselves. We are yet blessed once again with another day with Beckett, and another day as a family.

So, I conclude with an inadequate attempt to show our sincere gratitude to the St. Vincent / Peyton Manning medical staff. We are so grateful for your talent, care, and love you’ve faithfully and generously demonstrated to both us, and particularly, to our son. We are forever in your debt. Though we know we are in “good hands” once again, it was through your fervent effort and skills (and our God’s control) that we are even at this point in this journey. May God continue to bless each of you as you bless many other families with the level of care you’ve shown us. Please don’t be a stranger, as I’m sure Beckett would enjoy seeing you all as often as possible.

#ODAAT
#GoBeckett!

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

5 thoughts on “April 10, 2013

  1. Sally H says:

    Jonathan & Leah, we have not met, but Joshua and I talk about you and your precious son often. One of my favorite verses is Job 12:10 “He holds in His hands the life of every living thing, and the breath of all mankind.” I always picture Beckett held lovingly, tenderly in our Lord’s perfect healing hands; and know that He has it all under control. God bless you with peace and strength tonite. In my prayers and His,
    Sally

  2. When words are most inadequate, tears are most apt. And tears are flowing freely for your beautiful family. ” In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the Saints in accordance with God’s will.” Romans 8:26-27. I am trusting in the GROANS of the Holy Spirit on behalf of your precious little boy and your family. With much love and concern….

  3. bekahmoser says:

    No words from the Mosers either. We prayed and cried for you as a family this morning. Thankful the Lord our God holds you in His hands.

  4. Child of God says:

    As you trust and obey Father, know that He is looking after you and your son.
    Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

    I am so sorry to hear this news and I weep with you and will continue to seek Father’s hand to bless and heal Beckett.

    Continuing to lift Beckett up to our Lord and to pray for peace, understand and comfort you the two of you.

  5. A couple different people have told us about your family. My son Caleb is 2 years old and has hypoplastic right heart. We too had all our care at St. V until November when we were transferred to Riley because Caleb is now waiting for a heart transplant. We were really nervous about the idea of moving to a new hospital… And even though we loved St. V, just to give you some encouragement, we LOVE Riley and are so glad we are here. If you do come over, we would love to meet you. I blog as well, thekinnairds.blogspot.com. I pray on Jesus’ name that His peace will be very tangible to you as you walk this painful road.
    Katie Kinnaird

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