Today was the day! Discharge day! But the day has come and gone and Zion is not here at home with us – he is still in the hospital. Long story short, the hospital wasn’t able to get Zion’s most important (pulmonary hypertension) medication straightened out with our insurance in time, so he had to remain in the hospital. This is one of those meds that we must have with us when he goes home because it’s so crucial for his health. The new discharge date is planned for this Thursday (hopefully).
I was sad, angry and disappointed for many reasons. We were all dressed in our Zealous for Zion shirts and were ready to go, when we got the call from the hospital at noon. I had made a cake for all the people who would be in the house today to help us get Zion safely settled. On top of that, now I was going to have to reschedule multiple post-discharge appointments for Zion yet again. I had a pretty big self-pity party for a good couple of hours after getting the call and was really allowing it to ruin my day. This would make the third time that Zion’s discharge has been rescheduled. One of the Trisomy moms summed up my heart perfectly. She said it was “like someone postponing a kid’s Christmas – repeatedly.” That’s exactly how I felt.
After requesting prayer from many today, the Lord started bringing peace to my heart as He shifted my perspective to one of gratitude. Maybe we needed more time to prepare the house? Maybe I needed just a few more restful nights of sleep before I become Zion’s night nurse? Fast forward a few hours – one of our medical supply reps called me to cancel his visit to drop off some supplies today due to unusually bad traffic this afternoon. Shortly after that my husband read a news article that was posted online about a bad accident that had happened earlier that morning in our area. I came to discover that the entire stretch of highway that takes us from Zion’s hospital to our home (a 25-minute drive) was literally a parking lot due to a fatal crash on the highway right near our exit. As he was talking I pulled up the map on my phone. Red traffic lines were all over the map. Then it hit me. What if Zion had discharged this morning? Can you imagine us sitting in that traffic, stuck in our van, with our medically-fragile baby on a ventilator with a limited oxygen tank supply? And an even scarier thought came. What if that could have been us in that accident?! Maybe God, in His great mercy, spared us from something horrible or very difficult for Zion today? Instant shift. My whole demeanor went from self pity to gratitude and my heart completely lifted, while simultaneously I was deeply humbled to see how quickly life can be just taken from us. Thank You Lord that Zion is safe and okay became my prayer.
So, we will keep waiting. And we will enjoy our last few days of relative simplicity with it being just the four of us.
Praise be to God, Zion is still doing well other than continued occasional teething fussiness. Last week we got our home set up by the medical equipment company. They brought in all of Zion’s disposable medical supplies, his feeding pump/stand, two ventilator set-ups (one for the living room, one for our bedroom) with all of the tubing, two big oxygen concentrators to go with the vents, multiple smaller oxygen tanks (for travel purposes), a machine to refill the smaller portable oxygen tanks when they empty, and then one massive oxygen tank (almost as big as me) that looks like a war missile – to be used for emergencies like power outages. Check it out!
Within the first hour I was already overwhelmed. It was disheartening to see that so much of what we learned in the hospital about the equipment wouldn’t apply to our situation at home – so we had to relearn many things on the spot. What also proved challenging for me was how fast info was coming to me while I had no way to write it all down. I’m a visual learner, so I tend to learn best by quietly reading (ex: manuals) and then going hands on. But if I’m relegated to just listen to someone, I lose focus very quickly and can’t retain information. So to say that my head was spinning is an understatement. I at least find comfort in knowing that the medical equipment company is just a phone call away. And between my husband, our home nurse, and myself, hopefully we can recall most of the details between the three of our brains. But in reality, it’s truly all about the Lord and what He can do. It’s really not about us and our abilities at all. As long as I can pray, I know I will be okay.
I can already see how God is going to stretch and grow our faith even more when Zion comes home. He has put us in a situation where we need Him even more than before. And there is so much peace in knowing that He has promised to never leave or forsake us. We have so much to be grateful for and I want to end this update with our praises!
The goodness of God:
The other day I ran into a sweet Amish mother I have gotten to know who has a son with a trach about Zion’s age a few doors down from us. They were so kind to bless Zion with a present – an adorable little outfit. She had been waiting on home nurses to discharge like us, so I had been praying for her. I was overjoyed when she told me that they were planning to go home this Tuesday (tomorrow) – God is so good! Please pray that their discharge has no delays and for their precious baby Micaiah to thrive at home.
We received a generous love offering from the saints at a Greek Orthodox church in Fayetteville, NC. It’s been amazing to see so many churches from around the world join us in prayer, encourage us, support us and love us through this trial. I was telling one of our neighbors that we met for the first time tonight how much we have seen God’s blessing and provision through little Zion’s life – a life that we chose to preserve and have fought to protect. So many love our little boy. And that is so wonderful to know as a mother.
We got blessed with a Love Box from Lily’s List! This organization was started by a family who also had a medically fragile child. They provide families who are transitioning from hospital to home with essential items not covered by insurance. For example: a drying rack ideal for syringes, G tube cleaning brushes, label makers, velcro straps/clips (for cords), a file folder, etc. (A big, dry erase white board, essential for parent/home nurse communications, is not pictured but was also included!). God bless this organization!
We thank those who have sent gifts for our children. Putting smiles on our kid’s faces puts big smiles on ours!
Please join us in praying for a safe homecoming for Zion on the new discharge date of this Thursday 3/12 (just six days shy of his first birthday). I strongly desire that my son would celebrate his first birthday at home. Also pray that our children would quickly learn new boundaries as there are lots of interesting, new items to touch and jump on in the living room. Thank you!
Who is like unto thee, O LORD, among the gods? who is like thee, glorious in holiness, fearful in praises, doing wonders?Exodus 15:11