I know I played a mean joke in last night’s post, so today I promise not to do that. As we approached Beckett’s room this morning, they had already begun the echo on his heart. We stood outside the room and observed that his oxygen support has increased from 30% to 55% overnight. He was tolerating the echo, but definitely not enjoying it. The Cardiologist happened to be in our same module, but with another baby. We then watched the echo technician slowly get up, walk across the room, speak to the Cardiologist, and shortly after the Cardiologist was conducting the rest of the echo. In our experience, this usually isn’t a desired gesture.
The Cardiologist finished the echo, stepped out of the room to address our concerned faces. He explained a few things he saw and used words we’ve heard before. He explained that his heart function wasn’t bad but just mildly decreased. He’s concerned that the narrowing of his aorta may still be an issue. That was something they repaired when we first got here over a month ago. However, due to the location, they can’t fix it in the cath lab…which means they would need to “go-in” more invasively. If that’s the case, he explained, it may be prudent to begin conversations about doing his second surgery sooner rather than later (which a “date” was intentionally left vague). This would allow them to do the next stage as well as fix the aorta all in one surgery.
Though the news this morning was not necessarily disturbing, it wasn’t quite as encouraging as yesterday’s report. He explained that Beckett isn’t a “problem baby”, but is a baby they need to start having more frequent and serious conversations about. He shared with us that the Cardiologists and Surgeons meet every Friday morning, and that he will definitely be brainstorming with the team this Friday as to what may be the best course of action for Beckett.
Sooo….that was our morning. Leah was going to try to work today, but unfortunately it didn’t work out. Some of the options now are to work shorter shifts and drive to Ft. Wayne more often, OR possibly miss seeing Beckett for the day and spend the night at home in Upland (which she has yet to do). We have been very grateful and thankful to her work for being sooo accommodating these past few months, but kind of in the back of our minds we couldn’t help but think that unfortunately this surely won’t last forever. I’m not a big fan of her on the road so much, so this begins to make us think of alternative plans…everything from me possibly looking for some more work to relieve the burden on her shoulders (which I’ve never been comfortable with her carrying), or it could even force me to slow down on my grad school progress, etc etc… So as you can tell, we would appreciate prayer in this area of our lives as well. This situation This is has just unfolded into what it is now. We hoped to be home months ago, and that clearly wasn’t what happened. So then we set a goal for me to just finish the semester. But now it’s hard to know how to best proceed when we cannot predict what the future holds for us and Beckett. This places us in an interesting predicament when thinking about this journey from the standpoint of “one day at a time”. We are trying to be wise and good stewards, yet worry about today and tackle each trial as they surface. I have a tendency sometimes on this blog to rant or vent, so if that’s what I’m doing, I apologize. I share with you all because I know you care and will support us through this journey as you all have been so faithful these past many months.
I told Leah earlier this morning before we even got to the hospital that if Beckett is going to withdrawal from the fentanyl wean on Saturday that I think it’ll be either today or tomorrow. Ironically, we have been told by many doctors, nurses and even the pharmacist that fentanyl should reveal any withdrawal side-effects fairly quickly…but even if that is typically the case for most babies, that is not typically the case for Beckett. I’ve heard one nurse practitioner specifically say that she has never seen a wean like this, ever, and will certainly reference Beckett in the future if she should so happen to have anything remotely similar to this again.
Soooo, on to this afternoon. Leah and I came back from lunch and Beckett was sleeping. All of a sudden he quickly woke up crying. We tried all the typical soothing techniques that typically work for Beckett, and none of them seemed to work. That, along with him suddenly waking up in anger, is a fairly substantial clue to withdrawal…at least for Beckett. So Leah then held him for a while and he calmed down. A few hours after holding him, Beckett suddenly woke up again hysterically crying and had a heart rate in the 170s (which is pretty high for him). What was all the more odd was that after we calmed him down he maintained a high(er) heart rate; in fact, it continued to climb as high as 180. I think I kind of freaked Leah out because I couldn’t take it anymore and I left the room to find a doctor. I explained what happened and a doctor came right away. She assessed him and said that she would first like to get a blood gas (basically to make sure everything “internally” is still looking good). Even though that was totally the right call, After Beckett flared up again, Leah and I looked at each other and nearly simultaneously said, “yeah, he’s withdrawing.” So, they did a blood gas and the first one came back all out of sorts (which happens sometimes), and all the numbers were way off. So she had to do it again. In the meantime Beckett is screaming and crying and racing his heart rate into the upper 180s. We patiently waited for the results of the next blood gas which showed great numbers and the consensus was finally made to give him some morphine. Though I believe the morphine was ordered, delivered, scanned, double-checked, and administered as fast as they could….it felt like it took a half hour or longer while Beckett was off-n-on in hysterics. Finally he got some morphine, and another half hour later (once it finally fully hit his system) he began to settle down. He went to sleep and Leah and I were able to run away real quick to grab some dinner. We returned to him sleeping well, but within a few minutes he began to wake up again and start crying again. The consensus: He’s withdrawing pretty hard from the fentanyl.
We know that withdrawing is inevitable, but the combination of that emotional distress along with receiving potential news that he may be having the second surgery “sooner-than-later” was a lot to stomach. I’m actually glad Leah didn’t end up working today, cause it was great to have her here with me. She is such a champ when loving on Beckett. She just seems to innately know exactly what to say, what to ask for, what to do to help better his care. Even most of the physicians around here sometimes resort to asking her what she thinks about certain scenarios or solutions. Now don’t here me wrong, they are certainly still the professionals…I guess I’m just saying that her opinion is highly valued and respected.
I will say that this evening is concluding with Leah just holding Beckett and “all seems well.” I had already actually posted last nights update before Beckett’s Bath-Time and almost reposted an addendum to my update because Beckett was a riot last night. He was making the most endearing and cutest little coos. I also snapped a lot of great pictures (I’ll have to post some soon…they are sooo good).
Well, as always, thanks again for hangin’ with us….as you can tell, we are far from “finished” and definitely have a ways to go on this journey. We are just asking for continual pray, support and cheers as we do our best to not only eventually finish strong, but endure strong!
— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.
Fervent prayers are continually being lifted up for Beckett you and Leah. Roller coaster days are so hard to go through. I know from experience. Sometimes it is 1 minute at a time to get through the ODAAT. Also praying for God to give you and Leah a spirit of discernment, as well as wisdom, as you have decisions to make regarding this journey you are on – not only for your son, but also as you are trying to balance the necessary things in life with where your hearts want to be and need to be. “Be strong and take heart, all you who hope in the Lord” Psalm 31:24. Much love and prayers being sent your way…
Dear ones, we are on this journey with you.
The Lord be with you and give you His Wisdom and Grace.
Thank you for sharing moment by moment on this most difficult path!
In His Love,
Marylou and Gene
One thing you know for sure and that is Father is in control. We will keep seeking Him to keep His healing hand on Beckett and seeking Him for wisdom, peace and complete healing.
Keep looking to Him and trusting in Him during these shaky times.
bless your hearts, all 3 of you, for being so mature in your approach to all things physical, mental, etc. My hat is off to you. Only God knows what you are going through and only He has all the answers. Our prayer is that He will get inside the doctor’s and nurse’s heads and leave no doubt in their mind that what they are proposing is the right thing.
God bless and keep you strong….D