Good evening! Overall, today was a better day for Beckett. Yes, there were a few little hiccups along the way, but we must continue to see the big picture.
This morning Jonny got up early to head to the hospital before returning back to Upland for class. I had asked him to text me how Beckett was doing when he left. The past few days Beckett has required a significant amount of extra oxygen, as high as 65% just yesterday. So last night his nurse was able to get him down to 30% by morning, but then Beckett began to have a meltdown. He required a dose of morphine and his oxygen requirement went back up to 45%. He pretty much stayed there most of the day. He actually didn’t even get weaned down any until about six o’clock this evening. We have thought for days this was mostly a result of how hard he is withdrawing, but Jonny, the nurses, and myself have also thought there had to be something else going on. Beckett responded really well last week when they put the chest tube in, but he hasn’t had any drainage out of it for almost a week. However, his daily x-rays have continued to show a small pleural effusion. We have all wondered why the fluid wasn’t draining, especially when they turned back on the suction. So, again today I asked the doctor how we get the fluid out. He didn’t think the tube was clogged where it sits in the fluid but decided to aspirate from the tube with a syringe, I think more or less to stop everyone from asking him. When he pulled off the actual pigtail from the suction tubing there was what appeared to be a small amount of tissue clogging the tube at the connection point. Once removed, they were able to remove approximately 11.5 mLs of fluid and it has continued to drain since then, approximately another 8 mLs since this afternoon. Since doing so, Beckett’s oxygen saturation has improved and his requirement is decreasing. The nurse had turned him down to 36% as I was leaving, and hoping to continue through the night. I guess sometimes all of us pestering makes a difference.
Beckett’s G-tube surgery is scheduled for 11:00 Thursday morning. This is such a big step in getting us ready to go home. He has been cleared by all the important disciplines and had his upper GI this morning. His results were his anatomy is normal, and he doesn’t appear to be having any reflux, all good news. So we will proceed as planned. Of course this is a surgery so we are praying for everything to go smoothly, and for Beckett to tolerate it extremely well.
I also had a discussion with the doctor today about Beckett’s withdrawal. I just felt like he is suffering when he doesn’t need to be, and that we can and should do better. I didn’t understand why we were continuing to allow him to be miserable when his heart is already under enough stress. So, after telling his nurse how I have been feeling and talking with the doctor, they doubled Beckett’s methadone dose today. While this is basically starting over, it is more important for him to be comfortable than to refuse to backtrack. We have also been informed this is not something that will keep us in the hospital, so I feel a lot better about it. His first dose of the new amount was this afternoon, so it might take a few to allow him to adjust, and therefore he did require another dose of morphine this evening. But then he was calm and peaceful, and we spent good time rocking and talking until he eventually fell asleep in my arms.
If I am being honest this morning was emotionally difficult for me. In fact, Beckett’s nurse and I had to go into his room, shut the door, and I cried while discussing all my current worries. I am doing my best to hold it together, but some days I reach a breaking point, and it is impossible to be strong 24/7. After having heard about him needing more morphine, knowing he was up on his oxygen, and then getting a call from pediatric surgery to discuss the G-tube placement and going through a long list of risks and side effects, I just was too overwhelmed with concern. I only needed about 15 minutes to let it out, then discussed with the doctor all my questions, came up with a game plan that suited everyone, and saw action. I quickly felt better that we were taking steps to better help Beckett make progress and be comfortable. I also have added stress because, while I am not ready to return to work, it has come time that I no longer have a choice. I am working out details with my manager, but I also found out this morning Friday is her last day. This too made me nervous that the next boss might not be as gracious. So whether I am ready or not, I will be returning to work within the next week or so. This too is all a part of God’s plan, and I must continue to trust in the truth that he knows what he is doing, and he is in control. I have no doubt that Beckett will get through this and make a full recovery because I believe in a big God who has shown himself faithful every step of the way. But, some days I struggle more than others simply because I am human. Today just happened to be one of those days. Tomorrow will be better. To quote a line from one of my favorite movies, “After all, tomorrow is another day”.
— with Jonathan Rupp at St. Vincent’s Women’s Hospital.
You all continue to be in my prayers each day – God will walk you through each moment & carry you when your strength is gone. Your updates are such a wonderful testimony of trusting in our heavenly Father’s perfect plan & allowing Him to shine through your love for your precious son. Know you each are prayed for by many who care so much.
Tears for you and your family accompanied by prayers. So good that you stood strong or persistent for your son today…a mother’s loving instinct. Keep hanging in there and we’ll keep praying. Much love and prayers going your way.
Leah, as I was having my morning Bible read time, my devotional from Dr. Stanley was in
II Chron. 20:15. I thought of you ALL: “Do not be afraid or discouraged because of this vast army (*Beckett’s struggles). For the battle is not yours, but God’s.” Praise the Lord, it is
not our strength, but our dependence on His!