Bo has kept us busy these last few days! His energy level is returning to normal and he’s been so happy and playful. I tear up often just watching him enjoy life and smile at everyone who comes into our room. The last 5 weeks have been hard for a number of reasons, however I think one of the hardest ones for me was really missing him and his radiant joy. When he was so sick and sedated, it felt like he was gone for a while. I cried for weeks praying God would restore him fully to us, and he has.
The past few days have not been without their share of ups and downs. Yesterday we learned that Bo’s potassium had jumped to a high level and his team was concerned. High potassium can cause heart issues, so they ordered an emergency EKG to check on things while they put a plan together to bring his potassium back down. Thankfully, his EKG came back normal and as of this morning, his potassium is back in a normal range.
Because of his high potassium, Bo’s team decided to discontinue his IV nutrition (TPN) yesterday. This is something I have been praying about that seemed like a big prayer. He ideally needed to be off of the TPN to go home, but in some situations, they can send kids home on it; they just need to have a nurse come to the house to hook it up every day. Although that would have been fine, my dream for him is to be completely free from his IV pole at home and living life as a normal, active 1 year old. I felt conflicted praying for him to be off the TPN–isn’t it enough that God has healed our boy from so much and that he is actually coming home? So what if he needs to stay on the nutrition for a while longer? But I continued to pray for it, being at peace with whatever happened. I could hardly believe it when his doctor said they were discontinuing his TPN. Surprisingly, I was worried that he wasn’t ready to be off of it! It didn’t take long for me to see it as an answer to prayer and that worry turned into gratitude. His team believes that although he is still having trouble keeping food down, it’s something we just need to keep on trying and eventually his gut will be able to tolerate more and more. I am so proud of the progress he has already made and am so grateful for the answers to prayer we are seeing!
We have continued to see progress in two other areas that were hurdles to getting home–his needs for platelets and his pain pump. As of today, he is now requiring platelets every 2 days instead of daily! This means that he could technically make it through the weekend safely if he were to get platelets on a Friday and didn’t have another clinic appointment until Monday. They also have weaned his pain pump enough to take him off of it completely today! This means that he is now only going to be getting an oral dose of a pain med as needed. Another huge victory!
The biggest, best news I have to share is that his team is hoping to send us home NEXT WEEK! They said things can still change between now and then (he could get a fever, etc.) but for now, that’s how things are looking. I can barely think about it without crying. I feel like for so long, there didn’t seem to be a light at the end of the tunnel, and all of the sudden it feels blindingly bright. Our team is so pleased with how he’s doing and are confident that he can thrive at home without constant monitoring.
As we prepare to go home after such a long and dark season, I find myself meditating often on Psalms 126:
When the LORD srestored the fortunes of Zion,
we were like those who tdream.
Then our umouth was filled with laughter,
and our tongue with shouts of joy;
then they said among the nations,
“The LORD has done great things for them.”
The LORD has done great things for us; we are glad.
Restore our fortunes, O LORD, like streams in the Negeb!
Those who sow in tears shall reap with shouts of joy!
He who goes out weeping, bearing the seed for sowing,
shall come home with shouts of joy, bringing his sheaves with him.
I can’t help but feel as though the harvest time is near–we are bringing our boy home soon! I can hardly believe it. It feels like a dream! The LORD truly has done great things for us; we are exceedingly glad! We have sown in tears, yet we are coming home with shouts of joy!