Heart of Beckett

UPDATE (3/9/13)

I’ll keep this update brief, but hopefully still informative.

As you may have seen from the update earlier today, Beckett was unfortunately REintubated again. Yes, yes…this was certainly disheartening, but only disheartening because of our impatient nature. This decision to REintubate was for his own good. We just want him healthy…whatever it takes, and however long it takes. He really hates the tube going down his throat and requires a lot of extra attention to calm him down (most likely because he’s had a “taste” of what it’s like to not have a tube down his throat), but that’s nothing a few thousand pats on his back can’t handle. Yes, he loves being pat on his back or behind…it settles him right down. Unfortunately though, as soon are you stop, he is not a happy camper (we are going to have massive, and weird, hand and forearm muscles). He does seem much less distressed from a breathing standpoint, but not necessarily from a annoyance standpoint. But once again, this is just a necessary evil, and as long as this is helping us move towards the end goal of getting “healthy”, than so-be-it.

We did find out some pretty great news today…his E.Coli is GONE! Yay! He will need to continue his full 10 days on the antibiotics though, but still…that’s really good news! Sooo, no more MRSA or E.Coli.

Also, he will be tapped tomorrow morning to drain the pleural effusion (fluid) from around his lungs. Though this is yet another “operation”, it is minor and should be fairly quick and relatively painless. In fact, he should be feeling a lot better once that fluid is gone.

Whelp, that’s about it. Yet another day. We do, however, try to hang on to simple truths and positive reminders that it was yet another day we were blessed to be with our son. Again, there is no guarantee of another day with anyone (husband, wife, mom, dad, brother, sister, son, daughter, grandma, grandpa, friend, etc.). Sooo, take advantage of the time you are given. It is a gift, not a right. Life is a precious commodity, be a good steward.

#GoBeckett!

UPDATE (3/9/13)
-REintubate-

The title of this update is pretty self-explanatory. Beckett is getting REintubated right now. We came in the room and they were turning him up his VapoTherm from 2 liters to 3 liters. They then turned him up to six and later to eight liters. He seemed quite restless, so Leah eventually picked him up and his oxygen dropped even lower. The Doctor then came in and gave us the results of an x-ray they did this morning and said that his pleural effusion (fluid) around his lungs has gotten bigger. This then led to Leah basically saying that Beckett is not looking the greatest and really should probably be REintubated. Rather than just watch him struggle all day on VapoTherm and possibly just wear himself out…this is probably just what’s best for him. He needs to relax his breathing and fight off his infection (E.Coli), and then we can REextubate him. So, as mentioned about the fluid around his lungs, they have to take him off his blood thinner for a certain amount of time before they can “tap” his chest to drain that fluid. So that chest tube won’t happen until most likely sometime tomorrow. Where as Monday this was devastating, today is a different story. Though not ideal (at all), this was provoked by us and is really in Beckett’s best interest. Leah has a strange amount of peace about this, where as I am slightly discouraged once again. However, we really have complimented each other well throughout this journey. When I am weak, she has been strong and vice versa.

Thanks everyone (as always)…one step at a time.

UPDATE (3/8/13)We came in the room to see a friendly/familiar face. One of his primary nurses was back again taking care of him. She was excited to tell us the tentative plan for the day. She said that Beckett will be getting his Spinal Tap today and possibly Extubated if his GAS score came back favorable. For me personally, I immediately began to guard and work to properly set my expectations.

As the day unfolded, I would receive texts from Leah on how he was doing because I set up camp in the hospital lobby once again to do my studies, pay bills, write emails, etc. etc. etc…

Leah eventually text me that they were going to do the Spinal Tap. I was texting with a friend today just how crazy these ‘lil’ (literally) operations are. I (and even Leah) cannot believe how they do IVs, Spinal Taps, HEART SURGERIES, etc on these little babies. But here we sit once again with our son’s health in the hands of another Doctor. After lunch we returned with the pleasing news that the Spinal Tap went very smoothly. We are still waiting, however, to hear the results of the Spinal Tap, but we are thrilled it went well.

So I went back down to my ‘office’ to once again receive notifications from Leah on how he’s doing. She eventually text me, ‘They are going to take the tube out.’ I believe my response was ‘What?!?!’. Turns out they let Leah stay in the room and she actually captured it on video…it was pretty cool to watch.

Soooo, here we sit. Leah is to my left journaling, and I’m pounding out this update with Beckett laying directly in front of me without that stupid tube down his throat (it’s obviously not really stupid….once again, a ‘necessary evil’). I have mixed emotions of relief and fear. We (probably you guys too) have been trained to expect bumps in the road. However, even though that is an ingrained emotion, I choose to believe and desire smooth sailing ahead (right?). All of me wants to protect my expectations from disappointment, but I choose to fully engage in the mindset of a full recovery that I know my God is fully capable of providing and blessing us with.

On a quick ‘Medical Update/Recap’ note:
– The results of Urine Culture came back negative…yay!
– His Spinal Tap went smooth, but we are still waiting on those results
– He is on Antibiotics for E.Coli for 10 days
– He got Extubated!!!!! (again)
– The Infectious Disease Nurse Practitioner said he’s looking better than she even thought he would.

And lastly, a huge thank you to the Gaylord, MI Bob Evans Fund Raiser. I haven’t heard the results of that yet, but I was told that the Bob Evans in Gaylord, MI was giving 15% of all their gross sales for their entire day to the Beckett Jude Rupp Benefit Fund. ….that’s just amazing! So again, thank you so much for doing, organizing, eating, tipping, and paying 😉 today! So cool!

1 Chronicles 16:11&12
“Look to The Lord & His strength; seek His face always, remember the wonders He has done!”

UPDATE (3/6/13)

His oxygen setting on the ventilator had to be bumped to 80 this morning (that’s crazy high!), about 5 minutes before we walked into the room. This really scared me, but Leah has found a great deal of peace this morning over the situation. We began today with a lengthy devotional time together reading a lot of scripture and talking through this difficult time. It was encouraging, even though our situation really hasn’t gotten any better (possibly a little worse).

We are still waiting to hear the results of his infection, and are certainly eager to hear what it is and how it’s going to be treated. They are saying that he has something called Atelectasis (where his alveoli in his right lung is closed). His lung is not collapsed, they just need to do CPT and reposition him to get his secretions loose.

We really don’t know much more, so I will conclude there. Feel free to join me in a passage Leah and I read together this morning. God’s Word has been so comforting and encouraging to us. Don’t hear me wrong, it isn’t always that way for us. There are many times where reading the Bible is the last thing we want to do as if to self-medicate ourselves. But God is speaking to us through his ‘Word’, and we are choosing to engage and listen. It is alive and active, and sharper than any double edged sword (Hebrews 4:12). Even if you don’t believe ‘this stuff’, please give it a shot, and read along with me Mark 9:17-27…

Mark 9:17-27
17 And someone from the crowd answered him, “Teacher, I brought my son to you, for he has a spirit that makes him mute. 18 And whenever it seizes him, it throws him down, and he foams and grinds his teeth and becomes rigid. So I asked your disciples to cast it out, and they were not able.” 19 And he answered them, “O faithless generation, how long am I to be with you? How long am I to bear with you? Bring him to me.” 20 And they brought the boy to him. And when the spirit saw him, immediately it convulsed the boy, and he fell on the ground and rolled about, foaming at the mouth. 21 And Jesus asked his father, “How long has this been happening to him?” And he said, “From childhood. 22 And it has often cast him into fire and into water, to destroy him. But if you can do anything, have compassion on us and help us.” 23 And Jesus said to him, “‘If you can’! All things are possible for one who believes.” 24 Immediately the father of the child cried out and said, “I believe; help my unbelief!” 25 And when Jesus saw that a crowd came running together, he rebuked the unclean spirit, saying to it, “You mute and deaf spirit, I command you, come out of him and never enter him again.” 26 And after crying out and convulsing him terribly, it came out, and the boy was like a corpse, so that most of them said, “He is dead.” 27 But Jesus took him by the hand and lifted him up, and he arose.

Oh, and Beckett peed twice all over Leah this morning….it was hilarious!

UPDATE (3/5/13)
-broken-
So, this is getting difficult. Our flesh is quite weak. Many times throughout the day (including about 5 minutes ago) my heart was pounding through my chest out of fear and anxiety. As I’d take Leah’s ’emotional temp’ throughout the day, she’d respond with statements like ‘I’m about ready to break’.

While watching his monitor (a favorite past-time of ours as of late … #fictitious), he’d have a somewhat stable read and then desat his heart rate, or then his oxygen….it would just plummet for no reason. This ‘roller coaster’ would literally make us sick to our stomachs. The feeling of helplessness and fear would be overwhelming. And though we still trust in our God’s omnipotence, that doesn’t necessarily remove reactive emotion. At this point, I feel as if I’m just mindlessly venting, and I value your guys time more than that to continue.

So, a few quick technical/medical updates:
– They are doing an Upper GI soon, to make sure his anatomy is normal
– He’ll probably get his G-Tube (a tube going into his stomach for feedings) this week
– The Docs think that his shunt (a plastic tube they surgically inserted during his first initial surgery) is possibly pumping too much blood to his lungs
– They are not changing any Meds
– They obviously want to wean him back off the Ventilator as soon as possible
– The Infectious Disease Doctor came in and said his CRP (inflammation) is elevated now, sooo (and as a result), he does have another infection, but they are not sure what it is yet until possibly sometime tomorrow (those cultures take some time to provide results/answers)

So that’s that. Again, I’m typing out of weakness, so I apologize for grammatical errors, unpolished flow, and any course and impatient verbiage.

I cling to some comforting words of a worship song that has gained a whole new meaning for me as of late:
Chorus:
Give me faith to trust what You say
That You’re good, and Your love is great.
I’m broken inside, I give You my life.
Bridge:
I may be weak, but
Your Spirit’s strong in me.
My flesh may fail, but
My God You never will.

Exodus 14:14
“The Lord will fight for you; you need only to be still”

Psalm 46:10
“Be still and know that I am God”

UPDATE (3/5/13)
As you may have read in last night’s post, Beckett was reintubated yesterday. This morning I attempted to join my cohort on a field trip to The Offices of the Indiana Commission for Higher Education in downtown Indy. I was able to be ‘present’ for about an hour until Leah called me to say Beckett’s heart rate is decreasing. I guess the doctors, cardiologist and our surgeon are going to meet up to discuss what to do next. The neonatologist said that its rare to see a HLHS baby come back from the PICU and struggle as much as Beckett has (#HardTruth, but not very encouraging). So I ran back to the hospital to be with Leah and Beckett. And here we sit….waiting once again….while the fate of our son is inevitably (and more apparent then ever) out of our hands.

‘Thy kingdom come, thy will be done, on earth as it is in heaven.’

UPDATE (3/4/13)
-‘Tortoise and the Hare’-

What a crappy day (pardon my already censored ‘french’)! Today began with us walking up to Beckett’s room and seeing a piece of equipment that we already said goodbye to last week. Respiratory was hooking Beckett back up to VapoTherm. Just to clarify (from more severe to less severe), there is the Ventilator (when we speak of being intubated and extubated), then the VapoTherm, then a nasal cannula, then nothing. We were at the nasal cannula as of last night. To see the VapoTherm was quite disheartening, and didn’t just feel like a step backwards, it was a step backwards.

I encouraged Leah to ask every ‘nurse educated question’ (being that she’s a nurse, if you didn’t already know) she could think of, and she did. As a result they did another X-Ray, they rechecked his GAS (a measurement of many different levels within his blood), rechecked his Hematocrit Levels (the ratio of red blood cells to volume of blood), they gave him more Lasix (to help pull off fluid) etc., etc… Unfortunately (for sake of confusion), yet Fortunately (for sake of his health), every test produced results with nearly perfect scores. It’s been quite confusing. Leah and I were already worn out from the past few days, but this nearly sent us over the edge.

As the day progressed, he continued to look like he was struggling. His breathing was heavier than normal, and he seemed much more irritable than usual. It went unspoken between Leah and I, but as we’d look at each other, it seemed as if we were communicating the same degree of frustration, confusion, fear, and exhaustion. We kept watching his levels on the monitor (as I compulsively do), and noticed his heart rate ‘resting’ at a level where he usually is when he’s angry and crying. Additionally, his breaths per minute were consistently rising. It got to a point where I just had to say something to the nurse, so I went on to explain everything I just typed above in my non-medically-educated verbiage. At that moment, everything began to escalate. Leah had just stepped out of the room a few minutes before this and returned to my facial expression of a sad attempt to disguise my fear and anxiousness. This lead to us waiting in the room for the Doctor in which we overheard him (the Doctor) outside the door say the word ‘intubate’. Leah is who overheard it first and couldn’t help but repeat ‘Intubate?!’. Within minutes we were being ushered out of Beckett’s room with hugs from some of the nurses as they wheeled in Beckett’s Ventilator. This then, was our breaking point. As we cried holding one another, we composed ourselves enough to call and tell our families.

So here we sit, mixed emotions of proper perception and embracing a healthy anger towards the current circumstances. Leah and I read this morning from our devotions to not be anxious. I remember laughing with her right afterwards because our devotions that warn of difficult scenarios has been eerily accurate and applicable to our day at hand.

So…..Beckett is now intubated (again), they drew more blood cultures, they did a CRP (a measurement of infection), he’s back on a Fentanyl Drip (for pain and sedation), and he’s currently NPO (nothing passed orally…so he doesn’t do feedings anymore, again). To frustrate the situation all-the-more, the doctors aren’t really sure what to do next. We are all now basically watching to see what may ‘surface’ these next few days. Even though we are frustrated with the lack of answers or solutions, so are the doctors and nurses. So again, we take it a day at a time…lean into the Lord’s sovereignty, and enjoy another day with our beautiful son!

And so I conclude, though the journey may be long and progress is immeasurably slow…the Tortoise Won by a Hare.

Luke 12:25–26
1 Thessalonians 5:16–18

‘Worry is interest paid on a debt you may never owe.’
-Mark Twain

UPDATE (3/3/13)
-another ‘rough’ day-
I must begin by claiming that ‘perspective is everything’. Beckett has had much worse days than today, but we just feel as if he’s had a small string of rough ones.
In recapping the day with Leah, we couldn’t necessarily think of any disastrous things that happened today, yet somehow it seemed quite taxing once again. I personally feel weaker than I have in a while. But Beckett is currently sleeping in his mother’s arms, and for a brief moment, life somehow feels normal.
Beckett’s hematocrit was low today (predicted by Leah), so he is currently getting more blood. He always responds really well though to any transfusions. Unfortunately the NICU just implemented a new policy where his feeds have to be shut off for a few hours prior to the transfusion, during the transfusion, and 4 hours after the transfusion. So as a result, he still needs what’s called D10 (sugar water) to keep him hydrated and his blood sugar up during the transfusion. Well, if you’ve been following closely, you may recall that he does have a PICC line, but that it’s for any sort of ‘IV’. And with the D10 and the Transfusion of blood happening at the same time, Beckett had to be given another IV line again. This little man has been poked and prodded so many times, it just breaks my heart when I really think about it. This, however, will be a good thing for him in the long run (like most things he’s gone through…’necessary evils’), it’s just difficult to watch him cry from pain and discomfort.
Beckett also had multiple X-Rays today along with an UltraSound to check on his pleural effusion. He still has a small effusion, but they are watching it closely.
I want to reaffirm you all that we really do diligently try to read most (if not every) post/comment (both on Facebook and the Website) in addition to all the ‘likes’. The support is astounding (as I keep saying), but it’s greatly encouraging and appreciated.

Isaiah 43:1, 2
But now, O Jacob, listen to the L ord who created you. O Israel, the one who formed you says, “Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.

UPDATE (3/2/13)
-today was interesting-
We began this morning with me holding Beckett…it was lovely! While I was holding him his oxygen suddenly dropped into the 60s. Though that often happens, he typically recovers nearly immediately. However, this time he never pulled himself out of it and just stayed in the 60s. So the nurse came in and bumped his oxygen, and he stayed in the 60s. Then she really bumped his oxygen to nearly 40 ( 21 is room air and what we want), and he still stayed in the 60s. So she got a chest x-ray ordered and Respiratory came in and looked at him. After the first x-ray they noticed that he had accumulated some fluid IN his lungs….that’s not good. To attempt to give you the shorter story, they think his NG Tube (the one going down his nose right now for feeding) was possibly too shallow and he may have aspirated during his feedings. So as a result they have him on an IV dose of Lasix (which helps remove fluid), adjusted his oral Lasix to be administered more frequently and we are no longer allowed to do bottle feeding until this all gets back under control. He was still desating later in the day so they did a different view x-ray and some labs. The second x-ray showed a small pleural effusion (fluid in his chest), but not enough to tap. The labs all came back normal. His hematocrit was on the low end of his goal so they will recheck it in the morning and he could need a transfusion.
Sooooo, it’s been a slightly discouraging day. Beckett is ‘ok’, but he’s got a big week ahead of him and isn’t really kickin’ it off to a good start. Potentially (and I’ll type it again for dramatic effect), Potentially….we could have started having some serious conversations this week about going home! But this lil stunt may have set that back once again.
This upcoming week Beckett will be finishing up his antibiotics, he’ll be given his immunization shots, having a follow-up MRV (for the clot in his brain), and on Monday a HIDA scan (which I guess checks his Liver and such and is quite the process).
It’s so difficult and emotionally taxing to go through days like this, even though we’ve been through much worse. I think it wore Leah and I out, but thankfully we had family around today and the pleasant unexpected visit from some good family friends (Linehan shout-out). I tried to get away in the hospital lobby and set up my lil mobile work desk for school….but it’s clearly so challenging to disengage from all that is going on just a few hundred feet away. But we’re doin’ it….kinda. 😉 We have good days and bad days. But I’m telling you, with the foundation of our faith and the support of family, friends, and even ‘strangers’….we are able to take steps forward. It has bern amazing to experience the power of ‘community’, and certainly the power of God’s sovereignty (which I truly find limitless peace within).
Go Beckett, and to God be the glory!
….hang in there son, you’ve been so strong!

UPDATE (3/1/13)
As you may have already seen, we posted earlier today a video my brother put together of Beckett’s journey from birth to about 1 month of age. We actually just celebrated yesterday his 2 month birthday and cannot believe howmuch this little champ has conquered in his young little life.
We had a few great visitors today that definitely brightened our day (and I’m sure Beckett’s as well). Dr. Kay stopped in again (2 days in a row now) and just had to hold him again…we expect her daily now- 😉 j/k -but once you’ve seen him, you gotta have more! 🙂 She reaffirmed us how great he is looking and that she certainly hopes we get to go home soon. She’s a huge comfort to Leah, and I really appreciate how direct she is, yet done with great poise. One of Beckett’s nurses from the PICU stopped in later this evening and hadn’t seen Beckett since we left the PICU. She got to hold him for a bit, and it felt like ‘old-times’ again when things were going well in the PICU. She was yet another fantastic nurse that really related to us at our level, yet we had great confidence in her ability to take care of our son (which says a lot with Leah’s nursing background and Beckett’s known complexity). Thanks Ori. We are making good friends here at the NICU, but we certainly miss all our friends/nurses/doctors over at the PICU. But we’ll be back ‘soon’ for Beckett’s second surgery…he’ll be so big and strong by then (June/July 2013)! 🙂
Beckett tried the bottle again today, but didn’t seem to enjoy it as much today as he did yesterday. He seemed a little fussier and even a lil tired. But the speech language pathologist wasn’t that disappointed and said that there could be a number of things that are contributing to that, and that we’ll just try again tomorrow.
Beckett seemed extra tired today, but it wasn’t alarming. He is also becoming more and more vocal which is actually quite encouraging. We are very pleased with his progress, and are more and more excited to hopefully take him home sometime ‘soon’. I desperately desire a better sense of normalcy and routine…..but all in good time…..and whenever Beckett is ready.
Lastly (and I’ve been meaning to write about this for a while now), we had a dear friend of ours write a little story, like for a kids book, about Beckett and his heart. It. Is. Adorable. So precious. So we are actually (in all of our spare time ;-)) looking into what it would/could take to get it illustrated and possibly even published (or at the very least printed a bunch of times). Then we were thinking of possibly selling it (or maybe optional donation) to anyone interested for Beckett’s Fund. Soooo, stay tuned for that. It truly is a beautiful little story.
Love you all. We are 2 months into this journey, and so many of you have not wavered and are diligently supporting us and Beckett each step if the way…and we are just sooo humbled. Thank you so much, and please hang in there with us. The support has been greatly encouraging!