August 22, 2013

UPDATE (8/22/13)

I was at home (in Upland) this morning getting ready to put in a full day at work, and couldn’t shake just how discouraged and tired Leah sounded last night from the exhausting day with Beckett. I decided to call Beckett’s nurse and see how his night went and she blew me away with how many drugs they had to give him throughout the night just to keep him mildly calm. She explained that they gave him some Ativan last night before Leah even left; after she left, however, he received Benadryl, Tylenol, Morphine, his scheduled Methadone, Lortab (Hydrocodone), and even another dose of Ativan this morning.! And yet he was still angry. It literally brought Leah to tears from both physical and emotional exhaustion. No matter what she tried yesterday, nothing worked. And as parent, that can really do something to you; you can easily feel discouraged from the inability to console your child.

So, as I was saying, I was in Upland and decided to meet with my boss/friend and tell him that I just don’t feel right not being there for Leah today. He agreed and said (something along the lines of), “Ten years from now, you will not regret leaving us on this day to spend time with your family.” Wise man….good man.

So, off I went, back down to Indy once again. As I was pulling into the parking garage at the hospital, I saw the most beautiful woman walking from her car into the hospital, naturally I couldn’t help but whistle and say, “hey there, hot stuff” (nice and cheesy). Yeah, yeah…it was Leah. But it was great to watch her handle a car coming from behind her with a dude whistling at her. Ha…perfect timing. Of course she asked what I was doing there, and I simply told her that I’m on “Beckett Holding Duty”, and that we are going to figure this thing out.

As we were walking up to his room, Leah asked me her infamous and impossible question, “Is Beckett ok?” You may think that question is similar to, “Do I look fat?” In which we men have learned to never hesitate, but quickly, confidently, and with an unrehearsed tone simply reply, “No”. Well, I struggle with this question from Leah. Nowhere in scripture am I guaranteed Beckett will pull through this. Just as nowhere in scripture are YOU guaranteed to live to see tomorrow. I believe that Beckett is doing well, and I truly believe my God can heal (continue to heal) my son….but I have never “been told” how this story will end. I prefer to echo a man’s phrase, in whom I greatly respect who is currently battling cancer, in regards to that question, “He can, He will, and even if He doesn’t”. Kind of deep….but kind of simple. In this particular moment I told Leah that they have ran many tests (x-rays, and echo on his heart, they’ve checked his levels), and everything is normal. He isn’t running a fever….he’s appears to be “ok”. We just need to be patient with him and continue to try to figure this out. She couldn’t help but respond with, “but those aren’t answers”, in which I replied, “they sure are, they are answers that everything is ok”.

Well, as we approached his room, he was awake and kind of playing. He actually lit up and we played with him for a little while until he started moaning and grunting a bit. I asked Leah if I should pick him up (which is usually the golden ticket for him when he’s cranky). Though it wasn’t working at all yesterday, we decided for me to give it a shot. Well….long story a little shorter, he flipped out. He went absolutely bonkers. The nurse came in and started to suggest some medications, in which we refused at the time. I asked Leah if she tried a wagon ride yesterday (they have a bunch of little red wagons here, and Beckett seems to enjoy rides in ’em when we can). She said no, so I said, “Well, we could just be carting a screaming baby into the hallways, but I say it’s worth a shot.” So off we go, and almost as soon as we rolled even a foot outside the room, Beckett stopped crying! Amazing! Leah and I made lap-after-lap until it appeared he was finally getting a little tired of it. We came back to the room, in which, Beckett began to cry again. This time we were informed that our previously inquired suggestion of using orajel for his teething (which was shot down from a resident) was unequivocally signed off on by one of the Cardiologists. So we applied a little to his emerging teeth, and within 10 minutes, he was a brand new baby. Amazing (again)!

In conclusion (at least as of today), our best friends were not narcotics, but rather a little red wagon and some over-the-counter orajel. So Awesome! Every time (and I mean EVERY TIME) Beckett began to get mad, I would try one or both of those solutions (we can only give the orajel once every few hours though)…and it worked like a charm.

Sooo, later on Leah left to go to her younger sister’s first collegiate volleyball scrimmage of the school year. I was glad she was able to get away for a bit while I held down the fort here with Beckett (making lap after lap in that silly little wagon). We were also visited by one of Beckett’s favorite old nurses. They just played and played….he’s such a lil flirt, and when he’s not screaming…he really is such a good/cute little boy.

If you’ve been following these posts the past few weeks, you will be aware that we’ve been struggling with Beckett’s reflux and throwing up. I’m happy to announce that today he only spit up twice and only refluxed less than a handful of times. Though that’s not ZERO, it’s way better than before! I just hope that the spit up continues to lessen more-n-more, and that we hopefully get to go back home sometime here soon.

Lastly, I want to attempt to share my gratitude once again to all of you who soooooo consistently follow Beckett’s amazing lil journey. You are such a blessing to us, and I’m amazed, each time we post anything, as to how many of you are still following……nearly 8 months later!!!! Your kind words, prayers, encouragement, and even financial support…..truly astounding. I literally do not know how to arrange words in such an order that could accurately and sufficiently express our gratitude. Sooo, for now: Thank you, Thank you, Thank you!

Hang in there with us. We aren’t done yet, but are still very anxious to introduce each of you someday to our precious little boy!

Isaiah 30:18
Therefore The Lord is waiting to show you mercy, and is rising up to show you compassion, for The Lord is a just God! Happy are all who wait patiently for Him!


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

5 thoughts on “August 22, 2013

  1. Sharon Crigger-Stokan says:

    Ok…so this post was just so heart-warming from the super sweet ‘wolf-whistle’ to the wagon ride and orajel to the ‘simple’ tenderness of seeing and knowing the importance of being there for Leah though you were miles away. That is what being a loving husband and father is about. Good news that the reflux is coming under control…continuing to pray for that and for Beckett’s total healing and miracle. Go Jonny, Go Leah and Go Beckett!!

  2. child of God says:

    Ha! Praise God for little red wagons and orajel!! 🙂 Beckett is old enough to recognize his room and I’m sure he is a bit bored with the same four walls.

    Praying for you little man!

  3. Sharon Grandstaff says:

    Hanging in there with you guys. So happy for some improvement in Beckett’s reflux and spitting up. We will continue to pray for your family. God bless you all.

  4. Pat Jordan says:

    Loved the wolf whistle and red wagon stories. Have you tried rubbing your finger on Beckett’s gums? Helped our children years ago. Praying daily!

  5. Nancy Gillespie says:

    My grandson is 10 months old and still has a little acid reflux too. He enjoys things like a little red wagon ride and a change of scenery too. Sounds like Beckett is pretty normal in that regard. My heart goes out to both of you for the things that aren’t normal and I have been praying for you for months even though i only joined your newsletter recently. Yes, Leah, I’m Mr. Gillespie’s wife :).

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