Author Archives: Heart Of Beckett

May 18 2013
2 Comments
Jonny

May 18, 2013

UPDATE (5/18/13)

Today has been yet another great day. It began with an encouraging conversation with the cardiologists. They explained how pleased they are with how he looks and sounds right now, but that they will be doing another echo on Monday. This now leads into the next exciting yet concerning news……they turned his fentanyl off today! Ahhh! I talked with the nurse practitioner and we decided to go for it. I did request another increase with his methadone, and they agreed. Sooo, he is officially off the fentanyl! Crazy! We are very excited, but will be intently watching how he responds over the next few days. We expect it to go well, but are obviously concerned to see how he handles it. Sooo, Cardiology is excited to reengage with weaning their meds now and seeing how he tolerates it (that’ll most likely begin sometime next week). He has proven he can do it, he has just made it loud-and-clear that we go at Beckett’s pace.

Also, his oxygen support was varied today from as high as 50 to as low at 25. It was quite humorous and intriguing how much he needed at times and yet how little he needed at other times. He has currently plateaued at 30% right now and is doing quite well. I gave him a bath this evening while Leah was on her way back down from working in Fort Wayne, and he seemed to really enjoy that as well. All-in-all…I can’t really complain (just an expression). I am very pleased with Beckett’s progress and am blessed to have been able to spend another day with him.

I also had a good friend visit last night and even another friend visit this morning. We are truly blessed with amazing friends and incredible family. And I know I don’t mention it every time, but we are so blessed to experience God in such tangible ways each day…it’s been terribly difficult yet inextricably amazing!

Thanks again for hangin’ in there with us. We so greatly appreciate each and every prayer!

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

May 17 2013
3 Comments
Jonny

May 17, 2013

UPDATE (5/17/13)

Sorry for the late update….today has been a busy day, but not a bad day. In fact, I was initially feeling a little bad writing a shorter update tonight…but in all honesty, shorter typically means “good news.” There is not much to report on other than Beckett has had a relatively good day overall. Praise The Lord (through the good and the bad). There are certainly more things that need to be tweaked, but he’s doing well. I only hope for many more boring and uneventful updates to come. God is still sovereign…and we still trust him and his plan.

#ODAAT
#GoBeckett

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

May 16 2013
1 Comment
Jonny

May 16, 2013

UPDATE (5/16/13)

Today was a pretty fun day….fun and relaxing. Leah and I were able to spend the entire day together and worry about nothing but us and Beckett (sounds selfish, but it was awfully therapeutic). Though today was a blend of some struggle and enjoyment, it was fulfilling to spend it with my family.

The struggle or frustration was that Beckett was definitely displaying further signs of withdrawal throughout the day and slowly increased his oxygen support. We advocated for some pharmacologic assistance, and they accommodated our request. However, usually when the request is made, it’s already a little too late by the time it’s administered or delivered.

With that being said, he did sleep for a while this afternoon while we held him and watched a movie together on my laptop. Leah and I joke about how much I enjoy it when Beckett sleeps. I assimilate it with healing. Sooo, as he sleeps I find myself randomly whispering “heal, heal”. Its kind of creepy, but kinda funny. Lately when he’s been sleeping, his saturation levels begin to rise and in return he usually can come down some on his oxygen support. I’m weird, I know…but I just blame it on how much I love my son.

We were informed today that in lue of how difficult the past few days have been, we probably aren’t going to be coming off of fentanyl tomorrow. It was a valiant effort, but possibly too aggressive to try and wean TWICE this week without increasing his methadone. I understand why it was tried (and everybody had mixed feelings about it), but the age-old phrase “if it ain’t broke don’t fix it” kept making its way into our conversations. Oh well, he’s doing ok….he just may have been pushed a little faster than he typically likes. We call it “Beckett Speed.” It’s the speed that defies what “the books” declare as “slow”…it’s a new level of slow. 😉

But like I said, for the most part it’s been an enjoyable day, but not necessarily seamless for Beckett. We are getting close though…and are continually thankful for the care we are receiving here at Riley. No hospital is perfect, but we appreciate the love and care Beckett has always received at every hospital we’ve been to.

“Thank you God for staying near to my son. Please continue to heal his precious little body. Thy will be done…we trust you entirely!”

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

May 15 2013
2 Comments
Jonny

May 15, 2013

UPDATE (5/15/13)

Well, I officially had my last class earlier this morning. I also turned in my Final Draft of my first 3 chapters of my Thesis last night. I’m Done! This is a fantastic feeling of accomplishment. Soooo…….after finishing up my schooling I ran down to Indy to spend the rest of the day with Leah and Beckett. Leah said that Beckett was in his bouncy nearly all morning just sleeping. However, once I got there he woke up and was a little cranky and demonstrated that by desating a little on his oxygen. His oxygen support slowly got bumped up throughout the day and never really came back down. They weaned his fentanyl again today (so we are at .25) and decided not to increase the methadone again (this is what they did on Monday as well). Well, Leah and I think that he was beginning to show signs of withdrawal throughout the day; it was gradual, but noticeable none-the-less. This evening he was given a bath (and actually handled it quite well), but afterwards he kind of got a little cranky…and it was a little more intense than normal. So we informed the Doctors and Nurses who are working this evening that he may need a spot dose of morphine if this continues. They agreed and said they will be watching him closely.

Well, that’s about it. I know this is a shorter update, but I would say that shorter updates should typically be translated as “better” days. We are so grateful for another good day today. He’s handling these weans really well right now and might actually be completely off of the fentanyl by this Friday. If that’s the case we’ll see how well he handles that throughout the weekend and then possibly Monday readdress getting him off some of the heart meds. #GoBeckett!

#ODAAT

Oh, one more thing: I was able to take Leah out on a lil date tonight. It was just for dinner, but it was nice to get to do that again.

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

May 15 2013
2 Comments
Beckett, Jonny

May 15, 2013

#PerfectBaby

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May 14 2013
1 Comment
Leah

May 14, 2013

UPDATE (5/14/13)

Beckett has had another good day today. He had a little rough patch through the night where they said he cried for about 45 minutes, therefore causing him to go up to 50% on his oxygen. He was at 34% when I left last night. However, when I got there, he was down to 46% and they were taking him down slowly. When I left this evening (I was able to head out a little early because he was sleeping), he was again back down to 34%. So we are continuing in the right direction. He was awake for most of the morning content and playing. He was so full of smiles today, and his nurse kept saying he was flirting. He was just so happy. Of course he has little bouts of fussiness, but he is five months old after all. That is incredibly hard to believe in and of itself. Anyway, he has had a very good day. Since he was up most of the morning, he slept most of the afternoon. He was awake for about an hour this evening before he again drifted off to sleep.

I was able to get away for a few hours today and spend time at the mall with my mom and sister. I haven’t been shopping since Christmas, so it felt a little strange, but was definitely a nice change of pace. We enjoyed Chick-fil-A milkshakes, and my sister treated us to having our toenails painted. It was good to spend time with them in the normal world. Not too mention soaking up some much needed vitamin D.

They also had an Indy 500 party at the hospital tonight, so while Beckett was sleeping I ventured down, just to get out of the room for a little while. It was actually quite nice. They were giving away tons of free things, had an Indy car outside, and even two drivers were there signing autographs, one of which has a son just a few weeks older than Beckett. I was able to get him some nice souvenirs that he can have with the rest of his keepsakes from this journey.

I also spoke with the cardiologist again today. He said Beckett is looking great, and that his color is really good. He thinks we may need to add another med and then start pushing him a little. He said Beckett is doing well, he is just moving very slowly. This part is not news to us, as we have always known Beckett to like things slow. So, we will see. Right now he said these are just things he is thinking about, and he isn’t going to force us to do anything. Also, the coarctation of his aorta has come back a little, which really is no surprise, so that is something that will probably get fixed when he has a heart cath before the next surgery.

So that was today. Just calm, quiet, and exactly the way we like it. We are praying that each day gets a little better than the last, and are grateful for each good day we have with him. His life is truly a blessing, and God has given me the greatest gift in Beckett. I could not ask for a more precious son.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

May 14 2013
1 Comment
Beckett, Jonny

May 14, 2013

With all his experience, its hard to refute! — withLeah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

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May 13 2013
1 Comment
Leah

May 13, 2013

UPDATE (5/13/13)
Well according to both Jonny and my mom, Beckett has rocked it today. I was at work, so when Jonny had to leave early for school, my mom stayed with Beckett until I was able to get here. They said he has been so happy when he was awake, just smiling and playing. I always love to hear that. He was held a lot through out the day, and sleeps so good because he’s comfy. They continue to be able to bring down his oxygen; currently it is at 34%, and every one says he looks great. They did wean his Fentanyl today, but this time did not increase his methadone. They are prepared to make adjustments should they need to, but we are hopeful Beckett will be able to tolerate the change on his own. He woke up shortly after I arrived so I was able to give him his nightly bath and get him all tucked in for bed. It wasn’t more than 30 seconds and he was already sleeping. I just love knowing he is so comfortable and sleeping well when I leave. So we have had a long string of good days. As we have said before this often puts us on edge waiting for some sort of setback, but I truly believe we are on the way up, and we are going to continue in that direction. As always, we are praying for that to be true.
With that being said, even when we have good days with Beckett, we are constantly reminded that there are other people struggling around us. It just so happens that one of those people is my Uncle. I was informed today that last night he suffered a massive heart attack and is currently in the ICU. Unfortunately I have yet to really hear any details. So as you remember Beckett in your prayers, I ask you remember him as well. Thanks for the constant support for Beckett and our family as a whole. Good night.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

May 12 2013
1 Comment
Leah

May 12, 2013

Blessed to celebrate Mother’s Day because of this little guy!

— with Jonathan Rupp.

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May 12 2013
1 Comment
Jonny

May 12, 2013

UPDATE (5/12/13)

I’ll begin with a hefty, “Happy Mother’s Day!” to all you mothers out there. I’m not a mom, so I cannot (and will not) begin to try to relate to the bond you share with your children. However, I can respond from what I observe, and there is something “magical” between a mom and her child(ren). The way Beckett looks at Leah, how he perks up at the mere sound of her voice, how the comfort of her arms is incomparable to anyone who’s ever held him…it’s truly fascinating and wildly endearing. My wife unconditionally loves my son…and that love is unmistakably reciprocated.

I began today by reading Proverbs 31:10-30 to Leah. It’s amazing how many characteristics and attributes she embodies throughout this passage, she is genuinely “far more precious than jewels.” We then did our routine devotions which concluded with a few words of gratitude along with a gift for my mom, then a wrapped box of things I’ve gathered for Leah. There were flowers on the table (Gerbera Daisies…her favorite), a picture frame with a precious picture of Beckett smiling ear-to-ear, a book from Beckett to Mommy, and some other lil nicknacks I knew Leah had wanted. I had to do it up “well”, right? Today would have been a huge oversight for me if I would have somehow missed it, so I did my best to “do it right.” However, the beautiful thing about Leah is that I sincerely did not have to do any of that. She is truly an amazing women, a loving wife, and an incredible mother! I know it, she’s now reminded of it, and now through our fairly transparent lives, each of you have now seen it!

Happy Mother’s Day, Leah!
I love you!

Ok, ok…the sappy stuff is over. On to Beckett. As I type, Beckett is the lowest I’ve seen him in weeks on his oxygen support…..amazing! He’s currently at 38% support (we want 21, and have been as high as 70 within the past few days), and he’s holding saturations around 80 (we currently want anything between 70-85). This is all so very encouraging, and I’m very pleased with his current progress in addition to how well he is handling this past wean on Friday.

Sooo, today has been yet another good day! Praise.The. Lord. I was even able to step out of the room for a few hours to get some work done, and Leah had some quality mother/son time.

Leah just left a little bit ago, however, to spend some time with her family (particularly her Mom) and plans on working again tomorrow. This leaves me here holding down the fort once again…but I am experiencing liberty-of-the-mind to a degree I haven’t experienced for quite a few months. I got a lot done today, so I fully intend on spending some good time with Beckett tomorrow. Though anyone is still welcome to visit (nearly anytime), I won’t necessarily “need” any Beckett-Holder-Volunteers tomorrow 😉 as I will be willingly “assuming the position.” 🙂

Again, we are thrilled with Beckett’s progress. We clearly desire a prolonged path with no more bumps and no looking back, but we also continue to submit and understand that God is in full control and must remind ourselves that his sovereign plan will reign. We try to pray sincere prayers that welcome that plan, no matter how difficult it may be. May God receive all the glory and honor and praise through the journey of Beckett Jude Rupp.

#ODAAT
#GoBeckett

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

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