So, nothing too crazy today….buuut, we’ve had to make some adjustments. His breathing has gotten a little more “distressed” throughout the day, and Leah couldn’t help but express her concern that he just wasn’t completely “himself” today. We tried playing with him this morning, and even tried practicing some of the oral feeding stuff, but he just wasn’t havin’ it. He’s ok, it’s just that stuff like this makes us nervous. They think his lungs might be getting a little “wet”, so they have given him an extra dose of Lasix (this time IV), and this, in addition to his originally scheduled oral dose of Lasix should help get rid of some extra fluid. His oxygen flow settings got as low as 1/2 a liter (remember, about a week ago he was on a flow of 20(!!) on a VapoTherm), but he is now adjusted up to 2 liters (for now) to help compensate until he can pull himself back to a baseline. He’s ok (How many times am I going to type that phrase in this update? It’s like I’m trying to convince myself), we are just making a few adjustments. We asked the nurses here if this is a “setback” or a “bump”. They said that this is only a “bump”. This has not necessarily delayed our progress for going h.o.m.e. So, we are just trying to not get overly stressed about this, but just trust in God’s omnipotent control….one day at a time.
Speaking of going home…the conversations we are beginning to have with so many people here at the hospital about discharge stuff is daunting. We need to set so many things up, and talk with so many people, and learn so many different meds, etc, etc, etc. I’m confident we will be “fine”, but discharging a baby like Beckett is no simple task; there are many facets, many variables, many intricate details…he truly is a special boy!
We’ve also been working with numerous different people on things that we have been trying to arrange at our home for months now. We still have drywall that needs to be fixed from when our roof leaked back in April. But even more important than that, we have a quaint lil home of 3 bedrooms and 1 bathroom. Well, I’ve been trying to coordinate with many different kind and helpful people to fix our tub in our bathroom (it needs to be replaced). Unfortunately, Beckett’s amazing progress has unintentionally encouraged those who’ve been willing to possibly fix this for us before Beckett comes home to “back out”. Totally understandable, just troubling from our perspective. We definitely don’t want to be without a bathroom once we get home from our 6-7 month stay in a hospital, but it’s looking more-n-more that this repair isn’t going to be able to happen within the next week or so. Sooo, I guess, I humbly throw out some feelers for anyone able/interested/willing to help us with some home repairs (particularly our one-n-only bathroom). I wish there was a different word I could use other than “humbling”, but my pride forces me to push against asking for help, especially in times of need. We may actually have a few people able to do this for us, but one generous friend said even if he can do it that he couldn’t even start until next Tuesday. Well, the current rumor floating around right now is that we may actually be discharged by sometime late next week (say, Friday or even Saturday). So again, if anyone is able to help, please let me know. Thank you so very much.
Lastly, thank you all for your emails to Beckett. I posted yesterday how cool it would be for anyone to email Beckett for him to read later in life as to how he and his life has encouraged and/or inspired you. I’m adding spaces between the “@” sign in his address so that it doesn’t get picked up and spammed (we’ve already gotten one email saying that Beckett is being given an inheritance check…his account has only been active for less than a week). So, again, feel free to email him here (if you feel encouraged to do so): beckettrupp @ gmail.com
Thanks everyone. We’ve come a long ways, and we are almost H.OM.E.