Heart of Beckett

UPDATE (5/10/13)

This morning began with me approaching Beckett’s room to see his overhead lights turned on full blast and nearly 20 people gathering in front. This is rarely a good thing in the ICU world, however I was affirmed that the Neonatology physicians and the Cardiology teams happened to converge and “round” at Beckett’s room at the same time (#Coincidence). A case was made that they would like to wean Beckett’s fentanyl again today another .25. The rationale was that Beckett’s primary physicians were here all day today, in which I had to politely remind them that if we see any signs of withdrawal it will most likely not be today, but tomorrow and Sunday when Beckett’s primaries won’t be here. However, we decided to proceed with the wean and an understanding to not wean anything this entire weekend, but simply reevaluate everything once again on Monday. They did decide to increase his methadone to help offset his fentanyl wean. That definitely helped me feel a little bit more comfortable weaning him again today…but we’ll see how this weekend will play out now. :-\ If you’ve been keeping track, you’ll note that Beckett is now down to .75 of fentanyl…we want 0. 😉

He has also been up on his FIO2 today (which is his oxygen support we’ve been talking about). It actually got as high as 70 today….that’s not good. This has been a constant hangnail throughout the last 2-3 weeks, and something that has kinda confused all the doctors. His support is high, but not scary high. However, his level of oxygen support is on the brink of “scary high”. This is why Leah and I get so nervous about weaning his fentanyl…we’ve seen this before. His oxygen support will slowly rise, everybody will say “they are watching it”, and before you know it he’s getting reintubated. We are truly on the same team as the doctors in that we surely hope that is not the case and he’ll be just fine, but we are nervous he might be getting underestimated once again.

His crit was low(ish) again today, so they just got done transfusing him again. Beckett has always responded well to blood transfusions, so we hope that is yet the case once again.

I failed to mention yesterday that his scalp IV was removed that other terrible day earlier this week and was replaced by a specific PICC line called dual lumen (or IR) PICC line. This is significant because I can rub his head once again. I always loved doing that because of how much you could tell he loves it. So, as “Barbie girl play-time” as this sounds, I brushed his hair this evening, and it was quite nice. You could just see in his eyes how much he enjoyed it, and it’s definitely nice to be able to do something tangible to him that he so evidently enjoys.

He also did “tummy-time” again today (I’m amazing at all these new words and phrases I’m learning, it’s quite humorous to me). He hasn’t really enjoyed sleeping on his stomach much over the past month or so, but the nurse today must have had the magic touch. He slept for a while, and nearly high-satted the entire time.

Lastly, we had some surprise visitors again today. Brenda, one of Beckett’s previous Respiratory Therapists from St. V’s showed up today and couldn’t help but comment on how big and good Beckett is looking. He’s starting to get a nice double-chin like his Dad. It was great to see her again. Then another friend of my family (from my hometown), Sheri Brodbeck, stopped by and said she had to see this popular baby in person. It was certainly a pleasant surprise, and fun to show Beckett off to her as he just starred right at her the entire time all wide-eyed with those big brown eyes. It was funny.

Whelp, that’s it. In summary, it was a fairly decent day. Yeah, he whimpered here-n-there, but all-n-all, we can count this as a “good day.” Bless you all, and a continual thanks for all the prayers and support. It’s astounding.

Also, please be praying for Leah’s coworker who has recently received news that her unborn baby may not survive. She has been a huge encouragement to Leah and prays for Beckett daily. The least we can do is pray for her, her family, and her unborn child. Miracles still happen, so let’s surround them with prayer.

#ODAAT
#GoBeckett

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

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

UPDATE (5/5/13)

Today began with me walking up to Beckett’s room and noticing his Oxygen Support as high as 67%. That’s not good. The nurse went on to explain that she had been pricking him for a while to gather a bunch of different blood culture labs. So I figured that is what can explain away his high Oxygen Support….nope. Beckett’s nurse explained that she had to increase it before all that poking even began. This was obviously very concerning. Now I have the privilege to text this lovely information to Leah while she is at work. Both her and I continued to grow anxious for the direction this is trending. The doctors are now speculating that maybe Beckett has another infection (we won’t hear back of those results for a few days). He doesn’t look like he has an infection…but when X-Rays come back looking normal, multiple Echos look fine and numerous blood gases appear acceptable…we now seem to be grasping at straws. Clearly the assumption still exists that this could be related to his withdrawals, but I think the doctors are just being cautious….which we appreciate.

Sooo, its been a long day. I tried to get some schoolwork done during his echo and when a friend came and held Beckett for a few hours today. But I still struggle trying to focus while in a hospital, or in my son’s room while machines are beeping and my mind is anywhere else but on grad school work.

The evening is unfortunately ending with me typing out this update while listening to my son hysterically cry as they prick him again for some specific (and difficult-to-draw) blood gases. In fact, it took 3 different nurses poking him until they could actually get it. It just breaks my heart and makes me want to do anything I can to alleviate my poor little son’s pain. It makes your mind start thinking thought of “hasn’t he been through enough?”

Thank you for the prayers. It’s yet another day….but another day WITH my son!
To God be all the glory! Lord, please heal my son!

#ODAAT
#GoBeckett

P.S.
He’s now 23.4 inches and 11.7 pounds! Yay!

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

UPDATE (5/4/13)

I’m not even quite sure how to begin this post. Beckett is “ok”, but he is just withdrawing soooo hard, and it’s soooo heartbreaking and draining….and to be quite honest, it’s even scary. Leah and I keep saying, “we’ve been here before”…and it wasn’t something we were eager to return to. Where it gets so scary is that Beckett is often too underestimated and often treated like a “normal” baby when it comes to doses of medicine, or wean schedules, or even his irritability. In fact, one time a doctor questioned my concern of his withdrawal to “normal 4 month old baby stuff”. And I understand that he may exude signs of normal baby behavior, but not necessarily when he’s been weaned off of nasty narcotics and demonstrating abnormal behavior…even for him. Either way, and like I said before, Leah and I just get a little “on edge” when heavy doses of deja vu begin to set in. We begin to see his oxygen support continue to rise, his heart rate then follows that same trend, and before you know it we are “beyond the point of no return” and the nasty word “REintubate” creeps its way back into everyone’s lexicon. That would be a huge step backwards, and we keep begging for the physicians to continue to brainstorm ideas that aren’t necessarily “textbook”. For example, the pharmacist’s original plan was to wean Beckett off the fentanyl .25 EVERYDAY. I remember thinking, please no! I had to advocate and request for at least an every-OTHER-day wean…which we were ‘t even able to stick with this past week. I think we actually only got 2 official weans in (as in, he’s down a full .5 from 1.75). And even that has been extremely difficult for Beckett to handle. This week confirms my pessimistic concern that we will definitely still be here (in the Hospital) for a while longer. I surely hope I’m wrong, but I’m concerned I am not.

Sooo, here we are…fighting right alongside of our son. Praying for healing, trusting in God’s sovereignty, and reaching personal limits quicker than ever before.

Exodus 17 has never been more applicable in our (and certainly Beckett’s) life. We feel the need and assistance of “Aaron and Hur” like Moses did when fighting the Amalek.

Exodus 17:11-13
11 Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. 12 But Moses’ hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun. 13 And Joshua overwhelmed Amalek and his people with the sword.

As stated in previous posts, we depend on The Lord for our strength. He DOES “give” us more than we can handle, and that reminds us of our complete and utter dependence on Him.
(Please reference the January 29th post: https://heartofbeckett.com/2013/01/29/january-29-2013-3/)
However, that support may come from others as well. We continue to welcome in the most selfless way we can the prayer and support from you all (as you have been so diligent and generous throughout this entire journey). Leah is back to work again tomorrow, I then leave for home tomorrow night when she makes the two hour drive back here to Indy. We are overwhelmed with the balance of immediate responsibities, let alone additional issues like our roof leaking at home, we now found out we have to replace our bathtub (cause its leaking), and we are receiving bills in the mail with 7 figures on it. But God is good, I KNOW he’s in control, and I’m genuinely trying to welcome the trials at hand, as these will only strengthen me, my wife, my family, and even my son! We are also not ignorant to the impact Beckett’s journey and story is having on so many others…many whom we’ve never even met before.

Thanks everyone. We truly love you all (and I don’t just say that because it seems like a nice way to wrap up a post). We are forever indebted to your care and support!

#ODAAT
#GoBeckett

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

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

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

UPDATE (4/29/13)

What a goofy day…but all-in-all, a good day.

Today began with me walking up to Beckett’s room seeing him being held by a women I had yet to meet…and she was singing to him. I thought, “that’s odd.” She immediately introduced herself and said that she is part of Music Therapy here at Riley. Well, that helped make a little more sense of the situation. She had a beautiful and peaceful voice and slowly put Beckett to sleep in her arms…it was pretty cool. At nearly the same time, the doctors walked by to “round”. They stopped at Beckett’s room and began their conversation. A few things stood out as they conversed such as Beckett’s crit being 39 (still) and further discussion about weaning his fentanyl. I politely interjected and shared that I was under the impression we were going to be talking to the pharmacists, Bill, about a weaning schedule. Immediately a hand was stuck out through the wall of doctors in which I then heard, “Hi, I’m Bill.” “Ahhhhh, Hi Bill.” (it was kinda awkward) So, I played it off and said, “Perfect…so Bill, what do you think the weaning schedule should be?” We all proceeded to discuss probable scenarios and agreed that Beckett should be weaned from the fentanyl .25 every-other-day. This, however, will have Beckett off the fentanyl in roughly 12 days! Woah! That would be awesome. However, at that point, we will then need to begin working on weaning him off the methadone, then the milrinone, etc… Please pray that this wean goes well and is completely successful, as this is a critical step in the overall healing process. Back to his crit level being at 39, I had to throw in my 2 cents there as well. We had noticed in the past when his crit (the oxygen carrying capacity in his blood) was on the lower end, and if it wouldn’t get treated immediately, it was pretty much already turning a direction it should not go. I explained how well Beckett responds to transfusions and advocated on his behalf to please watch that number closely. I slipped in a “he may need a transfusion today”, but didn’t want to push the issue (just picking my battles, right?). I later spoke with Cardiology, and they said they personally would prefer the crit to be above 40. Sooo, all this info got tucked into the back of my head until it seemed applicable later. I held and played with Beckett many time throughout the day today, but noticed that his oxygen levels were really goofy. When I first came in to his room this morning, his support was at 42 (we want 21). It has seems to consistently climb and climb over the past few days. I asked the nurse about it, and she affirmed me that they were watching it. At one point while Beckett was sleeping, the nurse turned Beckett’s oxygen down to 30 just to see how he would respond….and he responded just fine. He then woke up and began to tussle around in bed and his oxygen dropped (so his support had to come back up). Sooo, now he was back at around 40 again, but wouldn’t come up far enough on his actual oxygen saturation levels within the desired range. Sooo, the nurse kept turning him up, and up, and up. There was still hardly any change. It eventually got as high as 65 today, and yet, he was barely in the appropriate range we want him. I couldn’t help but inquire how unusual this is. We decided that we need to let the doctors know. They came and observed his current lower blood pressure (it wasn’t bad…just low), his abnormally high oxygen support, and yet how calm and normal he was looking and breathing….so she ordered a blood gas. His gas came back just fine, so the conclusion was made…he needs blood. The order got placed and he will be receiving it later this evening. We hope that by increasing the amount of blood in his body, more oxygen will/can be carried throughout…this, in theory, should/could help increase his stability to require less oxygen support and get that areas of his recovery back on track once again. I don’t know if any of that was easy to follow…but in essence, that was Beckett’s day.

I was made aware earlier this evening by my sister that a couple she knows from Fort Wayne are having their baby life-flighted down here to Riley. Coincidently, I overheard them clearing a space near Beckett’s room for a baby that’s coming down via life-flight from Fort Wayne. It may be them. I stalked their profile and found that they have had a pretty trying time since their little boy was born a week ago, and that this is a pretty scary transfer. Apparently, the doctors don’t really know what’s “wrong”…that’s why he’s being sent down here. The baby’s name is Kye, so please pray for him and his parents as we have and are experiencing many of the same feelings they are right now. I hope to only be a support and encouragement to them (if we even meet them) during these troubling times. Also, Leah and I tag-team once again this evening. She worked all day today, and I’ll be heading back home once she gets here later this evening. Please pray for safe travels and perseverance to “stay the course” and be the support we need for each other and certainly for Beckett. And please pray for Beckett. I ask for each of you to beg for complete healing; even if you don’t believe in a God, my God, any God…please pray and ask for the complete healing of Beckett’s little body. We are believing in a miracle, and have seen many thus far. #GoBeckett! #ODAAT

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

UPDATE (4/28/13)

Today has been yet another good day! With that being said, lets dive right in:
They decided to wean the fentanyl again today. We voiced our concern and after discussing it, since they upped the methadone on Friday and he has gotten six doses since then, they explained that this is a good window to decrease the fentanyl and that we need to take advantage if it.

Also, he’s 11 pounds today!!! Yay! We need that to continue to go up-n-up-n-up!

My parents were here yet again this weekend, and they both had a chance to hold Beckett for a while. I’m glad they were able to do that, it had been a long time since either of them have. They, my family, along with Leah’s family have been a great help and encouragement to us these past (looong) 4 months. So here’s a sad attempt to give them all a quick shout-out as a thank you for everything! You guys are amazing!

Lastly, some of Beckett’s previous primary nurses from St. Vincent’s NICU visited today! It was so good to see them again, and you could just tell Beckett felt just as comfortable as always around them while they held and loved on him. They said how much they and everybody else over there @ St. V’s miss him, but then they said that they do appreciate not being the one poking and prodding him anymore. They are now actually allowed to hug and kiss him! 🙂

Whelp, that’s about it. Please pray for another good day tomorrow. I should be meeting with Bill, the guru pharmacist here to hopefully put together a good weaning schedule for Beckett. Also, Leah will be at work once again tomorrow…sooo, please pray that it’s a nice calm day for Beckett while she is gone so far away.

Thanks everyone! #ODAAT #GoBeckett

Oh, and happy 4 month old birthday, Beckett! I love you son!

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

UPDATE (4/27/13)

Today has been a better day. It began with a great conversation with Cardiology. By “great”, I mean that we felt like we were able to clearly communicate a few of our concerns and felt as if we “had a voice” and were “heard”. Our ideas seemed to be acknowledged and carry some credibility as viable options that have yet to be considered.

Beckett continued to whimper here-n-there throughout the day, but the general consensus is that he’s withdrawing off his pain meds by continuing to build up more of a tolerance to them every day/week/month he is still on them. We plan to have a conversation with the well respected pharmacist here at Riley on Monday. He’s apparently the guru around here to figuring out healthy and effective wean schedules for babies. Other than that, he actually slept a while in Mommy’s arms and had a fairly calm day.

So, we just hang tight and will hopefully just enjoy a “normal” day tomorrow of enjoying Beckett and helping him through any withdrawal symptoms. This has been an issue we’ve seemed to constantly deal with at St. V’s (and even at Peyton Manning), and its a relentless plague until we can officially get all these pain meds out of his system once-and-for-all. This will take a while, so we continue to learn patience and trust God’s timing through it all (easier said/typed than done).

Please continue to pray for wisdom from the medical staff, patience on our part, clear communication, recent issues of house repairs, finishing my semester strong, Leah’s commute to work, and certainly Beckett’s complete healing! One day at a time (#ODAAT). #GoBeckett!

(Oh, and it’s Beckett’s 4 month old birthday tomorrow!! Yay!)

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