Heart of Beckett

UPDATE (8/12/13)

Ok, here we go. I’m only on the second sentence of this update, and I’m already nervous about it. I’m sure many of you are familiar with the expressions, “Wits end”, “Boiling point”, “Breaking point”, “Straw that broke the camels back”….well, I’m sure you are getting the point. I’m nervous because I’m afraid if I share transparently, I may unintentionally dismember appropriate filters I try to use when writing these updates. You see, I try very hard to be open, honest…transparent with this blog. And at times I’ve been graced with perspective that even surprises me. However, I am human, and there are moments when I sway way too far from a healthy informative blog to internalized unprocessed journaling. This may skirt that line to a degree I may not be completely comfortable with. Sooooo, with that ridiculous preface behind us…here we go:

In just a few short hours, we will be able to commemorate the time we brought Beckett back to Riley after only being home for 5 days. It will now be 2 weeks since that morning we decided to call the on-call Cardiologist about Beckett’s breathing. By around 3:00am, we were already packed and heading back down to a place we have come to greatly appreciate yet want to avoid at all cost. If you read Leah’s post, it was a pretty crazy day that kind of spun out of control. Hindsight is always 20/20, but looking back I think we all (the Docs and Nurses included) have learned a lot from Beckett readmission. First, I think he got “over-treated”. It is what it is (and like I said, hindsight is always 20/20), but I truly believe that we could have tapped Beckett’s effusion, Cathed him, diureced him, and been back home within a week. In fact, the Cardiologist who was on at the time projected for us to be in the hospital for days, not weeks. Yet, here we are. Still fighting the same battles…both physical and in patient-care. I promise I am not just saying this to be politically correct (I hope you know my heart by now)…..but we are FOREVER grateful for all the Doctors and Nurse (and RTs) have done for our son since birth. FOREVER grateful! But sometimes it gets soooo amazing exhausting repeating ourselves over-n-over, or getting a Nurse or Doctor who seems to care more about their job than the patient…my son (surely no hospital has a flawless staff…I totally understand that). To those nurses or doctors defense though (kind of), it’s not really fair to them when we’ve been blessed with medical staff who are absolutely amazing (it’s hard not to compare). Either way, that’s not really the point right now. At one point today I was still hopeful (and I’m still trying to be) to going home within the next few days, but as the day unfolded, it isn’t looking that promising. There is a really good chance we may be staying for a least another week. Mind you, patients with Beckett’s heart condition OFTEN go home after the Glenn operation (the one Beckett just had on July 2nd) within 7 days….OPEN HEART SURGERY! We are now approaching 2 weeks (working on 3) for some respiratory issues. For the past 5 days straight, either Leah or I will bring up the same questions at “rounds”…looking for answers:
1) Discharge Goals
2) Weaning Oxygen Settings
3) Reminding them to leave Beckett’s methadone alone (they wanted to wean it again today…unbelievable…see my post from a couple days ago)
4) Diuretic Settings
5) His Feedings (His Formula and Reflux Issues)
6) Med Schedule (realigning it to what we were on at home).
All of this is “heard” and even validated, but then nothing happens. Nothing! In fact, his oxygen support got bumped up today at one point when he was angry, and then nobody turned it back down (until I finally did…oops, I probably shouldn’t do that). You see, if nobody turned that back down, that then gets recorded as his “baseline”, and then we officially “take steps backwards”. The list goes on-n-on. Nobody tried to adjust his med schedule today (we definitely bring that up daily). And Diuretics! This is what we’ve referred to in the past as Lasix. His lungs will get “wet”, and so we have to diurese them. So, again, in rounds today they discussed an x-ray they did again this morning, it looked unchanged from the one yesterday, but the one yesterday looked “wet”, so whatever we tried yesterday, didn’t work. Then they moved on in the conversation. I had to then ask, “Hey, what are we going to do about this?!” They decided to hold off for now…until later in the afternoon, Beckett’s breathing looked so much more “distressed” that when we saw one of our favorite nurses walk by…we pleaded our case with her. She didn’t mess around. Within minutes the entire Cardiology team was at Beckett’s bedside and we were coming up with a plan. The sad thing was, it had to take Beckett’s distressed breathing and a brave/driven nurse to “make it happen.” And we are still waiting on all the other things to happen.

Soooo, here we are…on cruise-control. Not really doing too much. Just racking up a massive bill while heading into our 3rd week of being back in the hospital. I feel as if Beckett found a pocket between “Emergency Situation” and “Proactive Recovery” (…thankful for not being in an “Emergency Situation”). It just doesn’t feel like anyone is taking this “by-the-horns” and getting us out of here. I must give some credit to the Cardiologist though today, at one point he did stop the conversation (during rounds) and said (something along the lines of), “Hold on, we need to figure out where we are at with Beckett, and how do we get him back home.” It was like music to my ears…..yet, very little happened once again today. I know this sounds line complaining….but it’s probably because it is. I’m really trying hard here to cling to perspective, and being thankful that I even have this to gripe about (we should be thankful Beckett is still alive). But I guess that’s exactly what Jesus is talking about in the Gospels when his disciples “spirit is willing, but the flesh is weak”. Or even King David in Psalms that “my flesh and heart may fail, but God is my strength”. Or certainly Paul speaking of being the worst of sinners in 1 Timothy. These are not excuses for me, but reasons. I am weak at times, I can loose my patience, I can loose my perspective….but (literally), I am so thankful for God’s grace!

I know today’s update is certainly not uplifting, but I hope (at the very least) it can shed light on where we need prayer and support right now. And please don’t just pray that everything begins to “work out” for us, but pray that we learn that which we have been giving the opportunity to grow and be stretched by. We pray that we don’t overlook an opportunity to share Jesus with someone, or find the strength through Christ to extend grace, or simply allow God to do whatever it is he’s doing through what seems like another crummy situation. I will not always maintain a good attitude, or a proper perspective….but that does not mean I cannot (or should not) pursue balance in advocating for my son yet communicating out of love and respect.

My goodness…….one day at a time, huh? God, please use us, use me, use Beckett….may you, God, receive all the glory!

#GoBeckett
#ODAAT

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