Heart of Beckett

UPDATE (7/18/13)

Another good day today. I’ve got lots of neat little things to share, so here we go:

First, we saw our surgeon again today. He kept saying, “Whelp, he’s going right along with the program.” He was very encouraging, and it was so nice to hear him (of all people) say positive things about my son’s current condition.

Also, we were speaking to one of our nurses today who happened to say, “Beckett doesn’t look like an Ecmo baby”. It seemed like the conversation was just going to proceed after that comment, in which I had to politely interrupt and say, “Wait, wait, wait…what do you mean by that?” She went on to explain that they can almost always tell when a baby has been on Ecmo. She said that there eyes are typically somewhat jittery, they will focus above your eyes…on-n-on-n-on. She just couldn’t emphasize enough how great he looked for everything he’s been through. She said it’s a miracle. Obviously we are thrilled to hear that. But more potent is the fact that it is sooo vivid in our minds that after Beckett was put on Ecmo, it was such a disaster that our surgeon told us point-blank that with Beckett’s cardiac arrest and how long it took them to put him on Ecmo, we will see some sort of permanent damage. So you can imagine when we are told such encouraging things from strangers, nurses, and certainly our surgeon….we just can’t help but give God all the praise. Amazing!

This past week, they decided to wean Beckett’s methadone “a little”. He was on 2.5 mg every 6 hours after the surgery (including many other narcotics in which he is now amazingly weaned off of). To give you some frame of reference, when they tried to wean him off of his fentanyl back in April and May, they eventually had to only do it .25 every 3-4 days (and that was still rough). In fact, towards the end of that wean, they had to increase his methadone each time they would wean his fentanyl. Well, lets just say that this week began with him at 2.5 of methadone, and by Wednesday he was already at 1.9! Well, we tried warning them that you’ve gotta go “slow”, but we’ve learned that most of the time when we have a new team of medical staff, they kind of want/have to learn that hard fact at Beckett’s expense. I mean no offense, but a 2.5 to 1.9 within 3 days is kinda crazy for Beckett. Well, we are beginning to see the signs of this wean through Beckett’s behavior. He is definitely showing most of his signs of withdrawal. It’s not horrible yet, but we felt obliged to say something before they try to wean him again (which they were thinking about doing soon). The greater perspective is that even though Beckett DOES need to get off the methadone, we can actually go home on a little bit of methadone, so there is no huge rush to get him off it ASAP. In conclusion, they aren’t going to wean him again. They have “learned”, and they are watching him closely.

In other news, my sister and brother-in-law are visiting us for a few days. It’s great to have them here, AND my sister finally got to hold Beckett for the first time! That was pretty cool. We also took Beckett on another stroller ride this evening, this time in his own stroller! ALSO, my 13 month old niece, AnaBel, scooted all around the hospital with us as we strolled Beckett along. It was really fun actually. It was just another sniff of normalcy….and it smelled great!

On another note, out bathroom is DONE! Amazing! They actually got it done by today so that it was ready for the previously projected day to be going home (which is tomorrow). We are sooo thrilled that this happened somehow. We are anxious to get home, and it feels great that “everything” seems to be coming together. It’s still looking like possibly next Tuesday or Wednesday, but we are fairly optimistic that there aren’t going to be any more delays. We are soooo close!

And here’s another “shameless plug” or gentle reminder to email Beckett (if you so desire). Refer to some of the previous posts as to why and what his email address is….but the emails we’ve been getting have been awesome!! A big fat thank you to everyone who’s done that for Beckett. I’m sure it will really mean a lot to him someday.

#GoBeckett
#ODAAT

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