Heart of Beckett

UPDATE (3/25/13)

Some of you may have noticed on Facebook a recently posted picture of a great friend of mine. Last night I was blessed with the company of my good friend, Seth. He stayed the night with us, and it was such a therapeutic time for me to enjoy some good ole friendship along with an intentionally willing and listening ear. We’ve been through a lot together (and apart from one another), and this was just a great reminder of what “true friendship” looks like. Thanks Seth.

On to Beckett…
Today was yet another good day. It was fairly uneventful, and really only involved a lot of rest and even some weaning if his ventilator settings. Cardiology (the heart doctor) said that his color is looking much better. And oh…they actually took out his chest tube today (sorry, I guess that’s kind of big news)! That was the tube that was draining his plural effusion. They tried to aspirate it before they pulled it and were unable to pull anything out. We are being told that the results of an x-ray this afternoon showed No. More. Plural. Effusion! Wow, that’s awesome!

A few different doctors came in the last two days and just hovered over Beckett. While just staring at him, they would whisper things like, “You’re just a little fighter, aren’t ya?”, and “Look at you just fighting for your life!” Each time was so precious and gentle, and just affirmed how strong our amazing son is!

My mom decided to stay this week with us once again. She has said that she is basically “of no good” when she is at home because she can only think about Beckett all day long. She doesn’t enjoy seeing Beckett struggle (which is perfectly normal), but she doesn’t handle it too well to even see him on the ventilator either. However, he’s honestly looking much better and she came back today to see him. It was a really neat little moment.

Lastly, and probably not all that necessary to post. But I’ve been working diligently on my Thesis and now have about 18 pages of single-spaced annotated notes for my Chapter 2. That took at lot of focus for me and a lot of discipline in the midst if everything going on the past few days. But now all I have to do is somehow make some sense of it all and officially write my first draft. Yay for me!

One more thing…for those of you who’ve been asking, I actually did send in our Beckett/Gerber logo to Gerber. Not sure if anything will come of it, but I had to at least pass it along….right? 😉

Thanks for the prayers and support everyone! We still desire and appreciate it very much.
#ODAAT

#GoBeckett!

UPDATE (3/23/13)

Not really sure where to start, but I won’t string you along. So I guess I must begin by saying, “It’s been a very crappy day”. Sorry if that’s a very childish way to put it, but that’s just how I’m feeling right now.Leah and I woke up early to head to the hospital so Leah could spend a little bit of time with Beckett before her 2 hour commute back to work. It was a very emotional morning for the both of us, and especially hard to watch Leah drive away from the hospital.

I promised Leah that I would keep her up-to-date the best I can all throughout the day. So I began to text her updates as things would happen. What I wasn’t aware of was all that was about to happen. But before I begin, in my mind (right now) it doesn’t seem like a lot happened, but I can assure you, it was an exhausting day.

Beckett’s oxygen support level has been alarmingly high for the past 24 hours (or longer). We were hoping it would be lower when we came in this morning, but it wasn’t. I think he was at 50% support when the day began (we technically want something in the twenties…21 to be ideal). As the day progressed, Dr. Leys (one of Beckett’s surgeons), checked on Beckett about mid morning and said that his stomach looks good. They were talking about possibly starting some feeding into his G-Tube today (we didn’t really get that far).

Next, he is now getting IV Lasix, Versed Drip, and they turned down his fentanyl drip. Suddenly he dropped his actual oxygen level to the 50s (this is HIS actual oxygen levels, and we NEED them to be between 70-85 or so). That was scary, but unfortunately something I’ve seen before. So here I go, trying to figure out a way to inform Leah of this without freaking her out being 2 hours away….that got tricky.

They decided to check him for infection today (just to be safe), but we won’t hear back from that for a couple days. Then they decided to do another blood gas to try to figure out why he needs so much respiratory support. So, that’s an easy update to relay to Leah….no big deal.

Then he began “throwing” some funky heart beats. They didn’t seem overly concerned, but they are watching it. They just kept reminding me that the Cardiologist is coming in to talk with me soon.

Then our friend (who’s 3 year old son had the same condition as Beckett) we met here visited. This was a pleasant surprise, and a nice break from me somehow trying to do research for Chapter 2 of my Thesis during all of this. We were just chatting in Beckett’s room when all of a sudden Beckett got what they call “a drink”. It’s when the condensation from the ventilator pours down Beckett’s tube into his lungs….it sounds as bad as it is. Beckett began to desat really bad (similar to the last few times I’ve commented on this in my posts, but this time it was worse). It got so bad Kim and I stepped out of the room and a doctor came running in. They had to “bag” him to help bring him back to normalcy. These are the moments where you can pretty much place two finger anywhere on me and “take my pulse”…I’m pounding from head-to-toe. The crazy thing is, once he recovers, he’s fine and usually sleeps really well. Next step…somehow explain this to Leah in a text…

They did multiple X-Rays today, along with another Echo. The Echo takes a good look at his heart and makes sure everything is looking “good”, or “acceptable”. The Cardiologist eventually came in and spoke pretty direct with me. She explained that things could be much worse and that we are not at that point, BUT things could certainly be going better. As in, she is “concerned” for him. She said it’s not impossible (at all!) for a baby with HLHS to recover from set-backs like this, but it is difficult. Those words are difficult to read, but the honesty was appreciated. Again, going to now attempt to inform Leah with an honest update, yet without freaking her out.

They did another blood gas and his Crit was low, so he needed a transfusion (more blood). They also decided to start him back up on milrinone (for more cardiac support). This is not a “bad” thing (because it helps him), yet it is definitely a step backwrds. …text Leah again.

They decided to put him back on Antibiotics (just to be safe). Then at around 4:00pm he all of a sudden needed oxygen support over 70% (that’s a ton!). I tried communicating this with Leah and it provoked a phone call from her. She was justifiably concerned (and so was I). At this point I’m definitely breaking down slowly. I was trying to be strong for her over the phone, but I think she could hear the fear in my voice.

To fast-forward a little, Leah eventually made it back and we had some quality time to cry a little in each others’ arms and just spend time at Beckett’s bedside.

I (oddly enough) ran across this great quote in one of the books I was annotating that I just had to share with Leah. If you are still reading this far, you need to read this. It is from the book “The Call” and it said:
“Does your faith see only what is in front of your nose, or is it also ‘sure of what we hope for and certain of what we do not see’? Does the here and now, the present and the accepted, form a prison cell for your thinking, or are you reaching for more than you have grasped? Has your vision suffered from leakage since you were young, or are you still paying its price and closing it’s gap with reality? Listen to Jesus of Nazareth; answer his call.”

Shortly after that Beckett dropped his oxygen to the low 60s (after a few hours of doing really well). I looked at Leah and touched my nose in reference to the quote above. She understood and just nodded her head.

They literally just decided to also put him back on dopamine to help the contractility of his heart. Most of these meds we said goodbye to back in the PICU only to see him needing them again.

This is how our night has ended, and though we are both worn out, we are choosing to trust in God! This is not easy, and I’m certain we will close the gap of faith with reality at times…but Beckett is worth it, and we believe he CAN come back from this!

#GoBeckett!
#ODAAT

UPDATE (3/22/13)Beckett has been very…very irritable. It breaks my heart. They first thought that maybe he is in pain and hurting. So they gave him some more morphine….it’s hardly phased him. So, they decided to increase his fentanyl (the drug that really hurt him last week when he wasn’t necessarily strategically weaned from it). The Doctor decided to just keep increasing it with hopes that he will finally stop squirming. I had to leave after lunch to work on my Thesis (yes, it’s spring break for my grad schooling….but not really for me. Spring Break = Catch-Up Time.)

So I return after multiple hours of distracting work to find Leah standing at Beckett’s bedside saying “I’ve pretty much been here trying to console him since you left”. Apparently the Doctor just kept increasing his fentanyl….which really wasn’t helping.

So at this point Leah determined that this has to be more of irritability than pain. We have explained this theory to both his day-shift nurse and now his night-shift nurse and are hoping this gets communicated to his Doctor (as we would prefer him to not be on as high of a dose of pain meds that we will only have to eventually wean him off of later, but rather give him sedation to push him past this stage of irritability).

As I’m sitting here in his room the nurse felt that he needed to get suctioned (where they stick a tube down the tube in his throat and suction out any additional and undesirable fluid). Well, I am currently recovering from my heart beating out of my chest once again as his oxygen level plummeted and his heart rate dropped as low as 60 (that’s really low). His body is just so fragile that my mind starts to run away from me to some very dark thoughts (that I’d rather not explain, but I’m sure you can assume).

Sooo, there you have it. That was our day. Leah is contemplating going back to work tomorrow (Saturday) rather than Sunday because of a large snow storm forecasted to be here by then. That was unexpected for the both of us, and definitely something Leah is anxious about.

With all that being said, I’m not sure what to ask for you to keep in mind and pray for….but I know there is plenty there to decipher through (unfortunately). I say all that (and lay ourselves transparent) because we know that so many of you will be praying for us (and now all the more specifically).

A quick reminder, we really do strive hard to read every comment and post on both Facebook and Beckett’s website….so thank you all for the encouragement. We greatly appreciate it! And to everyone who continues to give to us financially, I’m really kind of at a loss for words. “Thank you” doesn’t seem to really cut it….but, “Thank you!”. We are so humbled and so very thankful.

Goodnight everyone!

#GoBeckett!
#ODAAT

UPDATE (3/18/13)

Hope everyone has seen the “Gerber Baby 2.0” concept….I think he definitely pulls it off, don’t you?! It’s kinda funny actually, we were doin’ a lil research on the Gerber Baby for fun and discovered that they did a contest last year for a “new” Gerber Baby. I put new in quotations because it wasn’t to replace the iconic image, but rather an opportunity for the baby who won to be the “face-of-Gerber” for a year with commercials, promotional stuff, etc. Beckett could have totally won that! 😉
(side-note: the winner got $50,000)

It’s been another confusing day. Beckett continued to receive his dose(s) of morphine when needed. He really has only gotten the rescue doses once every 10-12 hours…but it’s just seemed sooo much more frequent than that. On top of that, he had to have his oxygen support bumped up higher and higher throughout the day. It got as high as 65 (which is high), and that was quite discouraging. They’ve done an x-ray and ultrasound to not necessarily find much. He still has some fluid around his lungs which suspiciously isn’t draining out of his chest tube. He still has a little atelectasis (which makes his breathing more difficult), but it isn’t that severe to have this kind of impact. They gave him an extra dose of lasix (which helps remove fluid), and that seems to be helping some.

Sooo, I just sit here (when I’m not researching and writing a paper) and stew a nasty pot of frustration, grief, stress, anxiety, impatience, confusion and helplessness (to name a few) while I attempt to be strong for Leah and especially for Beckett. It’s difficult because I want to be true to my emotions yet strong for my family. I just want so badly to relieve him of this, but it’s as if God is simply and quietly saying, “wait”.

Ironically (if you read yesterday’s post along with the past few), part of our devotions this morning began with the phrase “Trust Me one day at a time” (ODAAT). It then went on to say, “Trust is not a natural response, especially for those who have been deeply wounded…Don’t let your need to understand distract you from My Presence.” Yet another humbling reminder once again.

My son is in my God’s hands, and nobody else’s. He’s taking care of him, and though anxiety is a natural response, the hard truth is that some of that anxiety stems from a lack of faith on my part. Not necessarily faith that everything will or won’t work out in “my favor”, but rather a lack of faith in his control, love, omnipotence and perfect sovereign plan. I really have no intentions to get into a theological tiff, so I will simply say that I do believe in a capital “G” God who loves my son more than I…..and he’s present…..and he is in control.

#GoBeckett!
#ODAAT

UPDATE (3/16/13)

Beckett was quite irritable off-n-on throughout the day. They decided to give him another “rescue dose” of morphine this morning. So heading into the afternoon I went down to the hospital lobby as Leah hung out in Beckett’s room with her family. She always loves their company so much, it just brings a smile to my face when I think about how happy her family makes her. I came back up to Beckett’s room as dinner time(ish) was approaching, and walked into the room with Beckett crying. Leah looked at me and said, “He just started doing this…I promise”. Sooo, for the next 1/2 hour we worked diligently on calming him down. He’d settle down for a bit but then to just burst into a hysterical cry. The docs and nurses are fairly convinced its “just” withdrawals. Though that is somewhat comforting, it’s also quite heart-breaking. I hate to see my son cry. He’s already been through enough, ya know? I just want him to be happy and experience a life outside of this silly little hospital room.

So here we wait, just sitting in his room with the lights off. His nurse, Kathy, just informed us that she needed to give him another “rescue dose” of morphine. So, he’s actually knocked out cold right now. These days are getting longer and longer. We remember saying things like, “We’ll be BACK to the hospital as early as possibly April and as late as July for his 2nd surgery.” Yup, it’s now March 16th…and we are still here…and AT LEAST a couple weeks away from talking about the “H” word again (“Home”…..we are cautious to throw that word around very much anymore).

Whelp, that’s about it. They are also increasing how frequent (not the dosage) they administer his methadone to help get him through this phase of withdrawal.

Thanks everyone for hanging in there. Even though we are clearly “still here”, we know that there are soooo many of you guys “still there” as much “by our side” as you can be. And for that, we are so thankful. I mean, we’ve only had Beckett’s website live for about a month and a half now, and we are nearly up to 35,000 hits already. That’s crazy! So again, thank you everyone!

#GoBeckett!

UPDATE (3/15/13)

I cannot believe it’s already March 15th. Leah and I were just talking at dinner that we’ve outlasted all our friends we’ve met since being here. Unfortunately (and that isn’t even the appropriate word), one of the babies we mentioned a week ago or so passed away earlier today. It was gut-wrenching and heart-wrenching to watch. The baby was just a few doors down from us, and it was quite sobering to watch them grieve, unpack the room, and even see a funeral director show up. For me, it really REALLY put everything into perspective. We had an opportunity to speak with the mom before she left, and she whispered into Leah’s ear as they hugged, “cherish it”. Please pray for this family, as this is a pain they are experiencing that many of us will never know. I cannot imagine how difficult that has to be.

Beckett has had an “ok” day. It was actually a little disheartening for me because Leah had been telling me throughout these past few days while I was back at home how peaceful and happy he’s been. It wasn’t an awful day, but Beckett did throw up (which I know happens with babies, but Beckett doesn’t typically throw up twice unless something is wrong). Then as the day progressed he was quite irritable. Leah even got to hold him again for the first time in nearly a week. Though he slept great in her arms, she kept saying ‘he just doesn’t seem comfortable’. They did turn off his fentanyl today (which is a pain med), so he might be withdrawing some from that….but it’s just been a troubling day. As I type, they are giving him what’s referred to as a ‘rescue dose’ of morphine. He’s just breathing heavy and his heart rate is on the higher side. This should help him, but is clearly not a preferred situation.

Soooo, please continue to pray for Beckett (as I know many of you are). We are very eager to come home, but certainly want to make sure he’s “ok” to do so before that happens.

Pray for Leah. She has been a rock throughout all of this, but it can get exhausting day-in and day-out here in a hospital. Just pray for strength, joy and peace…as she deserves all of that and more.

And lastly (or should I say, selfishly), please pray for me. I have my days of strength, but more frequently than I’d like I’ve experienced an uncomfortable amount of weakness.
2 Corinthians 12:9 – ‘And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.’ Paul is such a punk, huh? No, I’m clearly just kidding. This verse is just so difficult to live out. But the thing I do know is that it’s true. I AM a living testimony of this, and yet I still struggle to consistently embody that truth. And yet, I resonate with Paul once again in 1 Timothy when he says, ‘I am the worst sinner of all.’ Boy, do I not have it altogether….but I know what I do have, His grace. I rewind back to 2 Corinthians 12:9 again that ‘My grace is sufficient for thee’.
– Thank you Jesus
– One day at a time
– Cherishing all that I have.
As I’ve said before, life is a precious gift…do not only cherish your own (staying reminded of Philippians 1:21), but cherish your children, cherish one another, cherish your spouse, cherish your family, and cherish your friends. And most of all, cherish your salvation found only in Christ. His grace is sufficient.

#GoBeckett

UPDATE (3/10/13)

Sooo….the “time change” kinda got us this morning. We kind of got off to a late start. But in getting to the hospital, we found out that the doctor was in the middle of putting in his chest tube. They came out to the waiting room to inform us that the first attempt did not drain ANYTHING. Mmmm, that was a lil confusing and frustrating. They said they were going to do an ultrasound and see why. They tried again and got it (yes, this means they pierced his side twice….and while they did give him morphine and fentanyl, no, they didn’t numb the area. yikes.). They pulled off over 50ml of fluid, and it is still draining!

Leah actually left for the afternoon to meet up with her Dad here in Indy for a Volleyball Tourney. Her Dad coaches Volleyball, and Leah was actually planning on doing it with him these past few months….until all of this. This was really good for her to get away for a moment to be with her Dad and relax with a sport she is so comfortable with and skilled in (yeah, I’m bragging about my wife).

Sooo, I set up my “mobile office” in a chair in Beckett’s room. It was challenging to concentrate with nurses and doctors walking in and out along with Beckett constantly squirming and me just trying to settle him down for him to then just do it all over again. It was worth it though, just difficult to concentrate and stay very productive.

Beckett is honestly doing sooooo much better. He looks much better, even better than this afternoon. He seems awfully relieved (to have the fluid gone), and I really do think we are back on the road to recovery. I am so legitimately proud of him. He was truly such a trooper today and handled it very well! But don’t give up on us…you’ve seen the silly lil games Beckett likes to play with us. Oh, and we will try to post another picture again soon…he just hasn’t really been lookin’ 100% as of late.

Lastly, please pray for a neighboring baby and her family. We were just informed that the Doctors don’t feel as if there is anything more they can do for her and had the difficult conversation with the parents to possibly “pull-the-plug” (sorry for how course that sounds, I’m not quite sure how else to say it). Though we’ve been awfully close to that point ourselves, we have yet to actually get to that point (and hopefully never!). I cannot imagine how that family is feeling. So, again, please pray for them too. This is very heavy on our hearts tonight. God can heal this baby. So let’s pray for healing and comfort for that family.

Isaiah 41:10
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

— with Leah ‘Whiteley’ Rupp at St. Vincent’s Women’s Hospital.