Author Archives: Heart Of Beckett

May 03 2013
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Jonny

May 3, 2013

UPDATE (5/3/13)

So…nothing like being woken up at 4:30am with a call from the Hospital. This is how my morning began. To make matters worse, somehow both of my arms were asleep. So try to imagine with me an alarming phone call in the middle of the night from the Hospital your son is at and not being able to answer the phone. Looking back, I’m sure it was quite comical as I flopped my lifeless arms around in a feverish attempt to awake them once again in order to answer the call before I missed it. I was able to somehow “swipe-to-unlock” and answer my phone to then be informed that Beckett has been quite irritable throughout the night and that his Lasix was being switched from oral to IV. Well…….I must say that I was quite relieved that the news was not disastrous, yet on the other hand I was quite surprised that they felt obliged to inform me of that information. It was quite the catch-22. So I just choose to be thankful that Beckett was (and is) ok…just not sure how many of those middle-of-the-night phone calls we can stomach.

As I finally arrived at Beckett’s room this morning, it involved a lot of crying, then smiling, then crying, then smiling. It must have been exhausting for him. He would just flash the biggest smile, then seconds later flip-a-switch and be irate. He eventually was even challenging to console, which unfortunately inspired the decision that he may need a spot dose (or what St. V’s referred to as a rescue dose) of morphine. This actually hardly phased him, but it was strategically given to him right before some shots he needed to receive and also directly before a follow-up echo of his heart. His heart looks “ok” btw, no big changes. The main thing they noticed is that his shunt might be regurgitating more blood to his lungs than he needs right now (which kinda saturates his lungs and makes them a little more dense then they need to be). He’s doing ok though taking into consideration the fact that he’s being weaned off of drugs right now. Yeah, he’s irritable. Yeah, he cries a lot. Yeah, his emotions are inconsistent. But it’s currently tolerable. That fine-line and balance is difficult to achieve, and for that we are very grateful that the physicians are doing their best to obtain that equilibrium.

I was able to have a few people help hold Beckett for me today. An old friend of mine, Erin Cecil, came over to the hospital today and held Beckett for numerous hours. It was perfect. I just sat right next to them while Beckett “slept like a baby” in her arms, and got some good work done. She then left and must have done such a good job because my brother then showed up for the 2nd shift (of Beckett holding time) and Beckett just slept in his crib the entire time. He literally stayed asleep until Leah arrive from work at around 9:45pm and said “Hi”. Beckett immediately began to cry. Now…that could easily have been ironic timing because of how immediate the cry was after she said something, but either way I felt really bad that my brother literally just sat in the room with me while I worked on homework just waiting for Beckett to start crying and wake up so he could hold him. He was so eager to get to hold him, and it never happened. Even after Beckett woke up after Leah said “Hi”, I was able to get him to fall back asleep just fine.

Sooo…that’s our day. Beckett is “managing”. It could be better. It could be worse. So, we just hope for a quiet weekend and continue to place one step in front of the other, one day at a time (#ODAAT).

#GoBeckett

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

May 02 2013
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Jonny

May 2, 2013

UPDATE (5/2/13)As Leah has mentioned, I cannot believe its already May. Even my exaggerated pessimism did not foresee us still being in the Hospital come May. Either way, here we are…still tag-teaming it, still taking it one step at a time.Beckett has been fussy today. I knew this official wean schedule would be challenging, and sure enough it has. Poor Leah has had two very draining days consoling Beckett and is now heading back to work tomorrow once again. I however, only have a few weeks left of grad school this semester, but unfortunately this upcoming week is gonna be killer. But as Leah reminds me, I’ll make it…it’ll all get done…one step at a time. In one of my classes today (College Student Mental Health), we talked about addictions and substance abuse. Then, briefly, we spoke about something much worse than substance abuse, and that’s substance dependence. My professor went on to explain how severe substance dependence is and how nasty the withdrawals can be. Well, if you are connecting the dots like I was, I couldn’t help but think of my precious little son and his substance dependence. His tolerance continues to rise and his withdrawal symptoms continue to worsen. It’ll probably get even worse before it gets much better…and we have a long ways to go.

I was holding Beckett this evening and he fell asleep beautifully in my arms. He looked comfortable, and I was comfortable. It doesn’t get much better than that. However, and suddenly, he woke and began to hysterically cry. I did all that I could to console him, but my efforts were ineffective. My poor lil son. I can only imagine what he is going through and how he is feeling. He looks up at me with his big brown eyes as if to say, “Why Dad?” …that’s enough to make you tear up (well, at least me). I so desperately want this to go away for him and truly desire to take all his pain upon myself if I could. However, this is our reality…moreover, this is Beckett’s reality. However, I choose to find joy and thankfulness in the little things:
– I said to the nurse earlier this evening that I’m glad Beckett is pooping. Ha, weird…but true.
– I told her that Leah and I are so thankful that Beckett is overall a very happy baby…that’s so awesome.
– I’m thankful for his cute little smile…It melts your heart.
– I’m thankful for wise Doctors and Nurses who care so diligently for him.
– I’m glad he is still with us…I hope to NEVER take that for granted.
– I’m just so thankful for him (period)
A list like this is not a means to self-medicate. These are truly things I wake up each morning and am grateful for…and this list hardly scratches the surface. I could go on-and-on about Beckett, about my beautiful wife, or about my committed family, or about my amazing friends. Life is too short to be ungrateful. I have no idea how many more days I may have with Beckett…so why spend them in regret and fear? I must choose to reevaluate and restructure my perspective. It’s not only healthy, but its honest, and liberating. I challenge you to do the same. Stay engaged with the “now”, enjoy its blessing and relish in the mystery called “life”.
Disclaimer: I’m not naive to think that life doesn’t get hard, and it sometimes doesn’t seem fair. There are times for mourning, and even times for anger. I just felt obliged to remind myself (via this blog) to recommit myself to a healthier perspective in everyday life…no matter how challenging it may appear.

Lastly, please continue to fight with/for Beckett. I can truly tell that he is fighting this withdrawal as hard as he can. I ask and pray that God will help him. But I ask all the more for God to be glorified through my son’s life and the testimony of God’s faithfulness and grace……….and may I clarify, not necessarily His faithfulness and grace simply because Beckett’s life has been spared thus far, but because of all God has and is doing so faithfully through Beckett’s journey. I beg and plead for Beckett’s life to be spared, daily…but I probably pray more often for God to be glorified throughout this entire journey.
…sorry, I got off on another rant, but again…please pray for Beckett. Please pray for Leah while she is at work tomorrow…and please pray for me to finish the semester strong (I’m SO close…one day at a time).

Psalm 142:8
Let the morning bring me word of Your unfailing love, for I have put my trust in You”

Hebrews 13:15
Through Jesus, therefore, let us continually offer to God a sacrifice of praise–the fruit of lips that confess His name.

(sorry if this post was disjointed…it’s been a long day)

#ODAAT
#GoBeckett

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

May 01 2013
2 Comments
Leah

May 1, 2013

UPDATE (5/1/13)
May. My, that is hard to believe. We never would have thought we would still be in the hospital, but that is the reality we find ourselves in, and honestly, I don’t see it coming to an end any time soon. Who knows, maybe God will surprise us. Despite being ready to have Beckett out of the hospital, our attitudes have not changed in that we only want him to come home when we know he is ready. Some days just seem to wear on you more than others. Today has been one of those days. While overall it has not been too bad of a day, the few little things have added up, and I am simply worn out.
This morning Beckett threw up part of his 5am feeding and unfortunately, it had at least part of his methadone in it. From what I was told, he was pretty angry after that, and understandably so. He did fall asleep for a few hours, most likely from exhaustion, and was able to make it to his 11am methadone dose without any additional help. His oxygen support did have to go up though during his “fit”. The nurse had been slowly weaning it down before I got there, but once I arrived it stayed in the same place for most of the day. His saturation monitor kept dinging most of the day, and this evening his support had to get bumped up again. Each time he would wake up throughout the day he would be crying and angry. This evening I gave Beckett his bath and rocked him to sleep immediately after. He was sleeping so peacefully and his vitals looked great. I gently tried to move him to the crib, and of course he woke up. He does not transition well when he is withdrawing. Important side note, they weaned his Fentanyl again this morning. It took me a long time to get him to calm back down after waking him, and he was so restless in my arms. Eventually his nurse came in and said she would hold him so I could go home and get some sleep. Before I left his oxygen had to be bumped up again. So as I left he was sitting at 50%. Just last night he was on 32%. I have explained my concerns to multiple people about weaning the Fentanyl without increasing his methadone, but they are telling me the wean is appropriate. It is just hard to accept when I have seen how bad his withdrawals can be, even to the point of ending up on a ventilator. So I do my best to keep voicing my concerns while also trusting their expertise. We keep praying for this to be as smooth as possible, and ultimately that Beckett tolerates the weans and can quickly be off the Fentanyl all together.
So I spent most of the day rocking and consoling, which sounds like a nice gig, except for the fact that it is so much harder to enjoy holding him when I am concerned about him not settling down and his heart and therefore oxygen being under stress. I should also say he did have a few times of play, where he was happy and smiling. At one point he even laid in his crib for about 40 minutes just playing with his hands and staring at his mobile (he has a new mobile from his nurses that visited Sunday, and he loves it!).
In the grand scheme of things, today was not a bad day. In fact, the nurse thought he did well with the wean. It just seems harder when I know Beckett is not himself. So we pray tomorrow is a better day and that Beckett is able to adjust to the changes. We all want him off his pain meds, but it is truly a long, slow and difficult process.
We did have a special visitor today. My grandma was able to come today with my mom. She has not been able to see Beckett since the day after his initial surgery. It was so good for me to see her, but also for her to see Beckett. She was able to spend time holding him, and I was so happy for that. I am truly grateful for each step of this journey, and all the blessings along the way. Each day is a gift. Even days like today that seem so long and hard. He is priceless, and I wouldn’t have this any other way. May. Yes it’s May, and it is clear God still has things for Jonny and I, our families, and countless other people to learn, so we keep fighting on. And we take it one day at a time.

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

Apr 30 2013
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Leah

April 30, 2013

UPDATE (4/30/13)
Today was pretty uneventful. Only a few minor adjustments and lots of snuggle time. Beckett’s Fentanyl was supposed to be weaned today, but due to his difficult evening yesterday they decided to hold off one more day. As of today, all Beckett’s routine meds are now back to oral. However, the cardiologist thought his x-ray from yesterday looked a little wet, so they did give him a one-time dose of IV Lasix. Now, once we get him off the Fentanyl and Milrinone, he will no longer have any IV drips or meds. What a glorious day that will be, and it is coming soon.
Today Beckett and I were able to cuddle a lot. He also had snuggle time with my mom, and his nurse. He just loves to be held. He played in his bouncy and we even spent time sitting him up like a big boy. We are working on his neck strength so he can hold his head up, and he does better every day. He also got to have OT today, so she worked on stretches with him too.
Around lunchtime today I was holding Beckett and his oxygen saturation gradually began dropping lower and lower. She kept bumping up his support but he wasn’t really pulling up into his normal range. He had started on 36% oxygen and had gotten up to 48%. The nurse eventually decided to move the pulse ox and placed it on his hand. It was picking up at 81. Within minutes she was able to turn him all the way down to 32%, and he has been there the rest of the day. Everyone has been saying how good he looks today. We pray he continues to gain strength everyday, each day looking a little better than the last.
Here at Riley, they are supposed to give baths every day, and they do it on the day shift. Beckett’s routine for the past few months has been to have his bath at night right before bedtime. So today I asked it I could do it with his nighttime hands on, and they said that was totally fine. He behaved so well and only cried when I had to get under his chin roll. He laid there so calmly, looking around as I scrubbed him. He got clean clothes and his hair brushed. Once we had him all ready for bed, I rocked him tightly, and he fell asleep almost instantly. It makes it so much easier to leave at night knowing he is fresh and clean and fast asleep.
Overall today was a pretty good day. There were a few times when Beckett woke up angry, but he was typically easily consoled, and he always stops if someone picks him up of course. We like days like today. Days where it seems as though we are doing the normal baby things despite the situation we are in. We long for many more of the same.
I also just want to ask for prayer for the family Jonny mentioned yesterday in his post that was being transferred with their baby from Fort Wayne. Sadly, he passed away this morning, and doctors still were unsure of exactly what was wrong with him. We ask you remember them as they are going through an extremely difficult time of grieving.
As always, thank you for sharing this journey with us.

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

Apr 29 2013
2 Comments
Jonny

April 29, 2013

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.

Apr 28 2013
1 Comment
Jonny

April 28, 2013

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.

Apr 27 2013
6 Comments
Jonny

April 27, 2013

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.

Apr 26 2013
3 Comments
Jonny

April 26, 2013

UPDATE (4/26/13)

So, to begin, last night did not pan out quite as well as we would have hoped. Shortly after I posted the brief update, Beckett began to whimper….yes, just whimper. However, something seemed off this time. Leah had just left for home, and I couldn’t help but recall just how good he has been for her over the past few days…reports of him just smiling and even giggling a little. Well, this wasn’t the Beckett laying in front of me at the moment, and I had to resist the temptation that it was his change of scenery….me. 😉 …though that’s certainly probable. But on a more serious note, he just didn’t seem right and the deja vu of the situation was hard to ignore. If you recall, this is kind of how the debacle from last Friday began. I cannot remember if I explained that particular detail in last Friday’s update, but the night before last Friday, Beckett seemed a little off. Similar to last Thursday, this Thursday was the last dose of Beckett’s heart med (milrinone) again, as they have been trying anything they can think of to successfully wean him off of it. Milrinone is an IV med, and they really want to get him on an oral med for many different reasons…one reason is that we can actually take him home on an oral heart med, but not IV! So I mentioned something to the nurse, and then the doctors rounded by Beckett’s room and asked, “How’s it going in here?” I couldn’t help but take that as “my opportunity”. The challenge was explaining that I felt something was “off” with the assumption mainly stemming from a whimper. Yeah, good luck explaining that to a bunch of doctors, huh? Well, somehow I guided my way through that conversation and got them to take a blood gas of Beckett’s levels. Sure enough, his lactate was high…abnormally high. Now, it wasn’t necessarily so high to spark an emergency, but enough so that they wanted to do a few other tests. After consulting with cardiology, the unfortunate decision was made last night to restart the milrinone.

I’m being told that after all that confusion from last night got ironed out, Beckett had an ok night. Unfortunately today has been cumbersome. Beckett will suddenly start to whimper, then he’ll smile, then he’ll cry, then I’ll bounce him, then he’ll fall back asleep, then I’ll sit down and get my laptop out to try to get some work down…and it would nearly immediately start all over again. When Beckett whimpers it breaks my heart…and there is very little I can do about it. In these moments I feel so helpless…and as a prideful man/father, I feel so useless, which doesn’t sit very well with me. And even more troubling, currently nobody really knows why he’s acting like this. They did a few blood gases today and they look much better than last nights. I then requested an X-Ray, and that looked pretty good too. They then did an Echo (2 Echos actually, she had to come right back up to get a few more images per the doctor’s request), and that turned out to be just fine as well (well, “Beckett fine”). Another theory is that its just him being grouchy and/or simply having a bad day…in which he has certainly deserved/earned every once in a while…right? Lastly, there is a possible theory of withdrawal. I proposed this idea earlier today and it seemed to get slightly shrugged aside until a well respected Neonatologist proposed the same idea earlier this evening…..now it’s a viable option. I guess it truly doesn’t matter how, what or who diagnoses the issues, as long as it’s being addressed.

Today was a challenging day…..again. When I’m not getting any work done, it’s because Beckett isn’t doing well. When Beckett isn’t doing well, I’m getting all the more stressed about not getting any work done. My priority is Beckett. Schooling is an after-thought to his wellbeing. However, if he’s doing well, I feel liberated to work. I’m either extra happy about my circumstances or extra stressed about my circumstances. It also breaks my heart that he seems to struggle on the days that I’m here by myself. And it doesn’t really comfort Leah too much because it seems that the days she leaves are the days he struggles. That doesn’t really inspire her to want to go to work. :-\

Well, there’s not much more to say. Please pray for wisdom for the doctors as we advocate for his care in conjunction with their skill and expertise. And as always, we appreciate all thoughts and prayers for Beckett as he continues to fight for his life. We ask for complete healing in Jesus’ Name!

#ODAAT
#GoBeckett!

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

Apr 25 2013
2 Comments
Jonny

April 25, 2013

UPDATE (4/25/13)

This might just be the shortest update yet. So, I’ll shoot for quality and not quantity.

Once again, I was at school all day today and received the baton this evening as Leah then left for Upland tonight for work in the morning.

I’m being told that Beckett had yet another great day. They did officially take him off the milrinone again today (@ noon), so please pray that he handles that well and we don’t repeat another episode like we did last Friday. The nurses truly keep flooding around his room to sneak-a-peak, and his primary nurses repeatedly state just how good he is looking right now.

So, we hang on to hope while fully anticipating many more good days to come. “Thy kingdom come, Thy will be done in earth, as it is in heaven.” (Matthew 6:10)

#ODAAT
#GoBeckett!

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

Apr 24 2013
4 Comments
Leah

April 24, 2013

UPDATE (4/24/13)

Praise the Lord for hope. Praise the Lord for renewed hope. Today’s care conference went much better than the last. I was nervous all day for what I might hear, but was pleasantly surprised by how positive the meeting was. While they cannot guarantee things will happen how we want them to, they do believe, as do I, that Beckett will be just fine. The main thing is for him to be able to come off the Milrinone drip, which they are planning to attempt tomorrow. After the events of last Friday, they have weaned him slower this time and amped up the oral medication that will be replacing it. They believe this should do just the trick. Other main points from the meeting include: they do think he could still be a candidate for the next stage of surgery, there are still more options before we would need to put him on the transplant list, he needs to get bigger (so they increased his calories today), overall he is currently pretty stable and they think he is looking really good, and finally, if everything were to go smoothly, we could possibly go home in a few weeks. While we have decided not to hold our breath for that, nor are we telling Beckett they even said it, it is still nice to hear we are currently heading in that direction. There are still things we need to accomplish such as getting off the oxygen, weaning off the Fentanyl and then the Methadone, switching his meds from IV to oral, etc. But, at the current moment, things are looking good.

It truly seems as though Beckett is feeling better because he has been awake and playing so much more the past few days. He was even so happy today when my mom was playing with him the nurse said it sounds like he is laughing, which it definitely did. It was the cutest thing. They also keep saying how amazing it is that for being as sick as he has been, he still is developmentally right on track. That is so encouraging to hear, especially after they expected him to have some degree of deficit following his arrest right after the initial surgery. God is working miracles in this boy’s life.

So today was a wonderful day. They made very minimal changes in order to give him a day of rest before the Milrinone wean tomorrow. We continue to pray this time is a success and Beckett’s heart can withstand the work with only oral medication. I truly believe God will give him strength, and I am watching and waiting for healing. As the next few days will be very critical, we ask specifically for prayer that Beckett can successfully wean off the Milrinone. We can deal with everything else later. We rest in the trust that God will give Beckett exactly what he needs each day, and one day at time.

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

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