Thank you everyone for your prayers and encouragement since my last blog update. God most definitely answered and delivered my soul, giving me the strength and grace I need for each day as we press forward.
The day before yesterday, our little chunky “punkin” turned 7 months old! Thank You Jesus for another month! I’ve heard it said that seven is a number in the Bible that represents “perfection”, so we are hoping that this month brings special things for our son. It was a special day indeed because the TCC decided that was also the day to finally trial Zion on the home vent!
The team chose a ventilator called the LTV. It’s jokingly called the “dinosaur” by the staff because it’s older and larger than the newer vents, but it’s been praised for being a “work horse”, very reliable, and also having the benefit of settings that allow for more sensitivity for people with higher ventilation needs. They felt that the LTV was the best choice and would set Zion up for the best chance at success. They waited for George and I to get there to make the big switch, and before we knew it, it was happening! Immediately after the “flip”, Zion seemed a little agitated with the change and cried for a minute, but he then seemed to settle out, quickly falling asleep, sucking on his tongue. That was a good sign of his comfort to me!
We watched as the APN and the RT worked together to observe Zion’s breathing patterns and how his breaths synced up with the ventilator breaths, tweaking this setting and that. Finally they came to what they believed was a “sweet spot” for Zion, where he seemed relaxed and wasn’t retracting too hard when breathing, so they let him be.
George and I later left the hospital to head out of town for the night, but we called a few times to check on how Zion was doing throughout the day and he seemed to be tolerating the home vent well according to one of his primary nurses. Early that evening though I got a text message from a Trisomy mom (who was a couple doors down from Zion at the hospital). She has been faithfully keeping a prayerful eye and ear out for happenings with Zion to keep me updated when I’m not there. She said she heard his vent alarms going off and told me that I should call to check on him. I did – and the evening nurse informed me that his oxygen dropped low during a pooping episode (a regular occurrence with Zion). She said he took about 15 minutes for his oxygen sat to recover. I asked the nurse to tell the team to please not switch Zion off of the home vent for episodes like these because I felt that these were things that our son was just going to have to learn to work through on the home vent. Then we went to bed.
Just before midnight, my cell phone rang. The APN told me that they just had to switch Zion back to the hospital vent. She then quickly gave their rationale for taking him off the home vent. Zion’s breathing pattern just wasn’t syncing well anymore with the pre-set vent breaths. So he was doing something called “breath stacking”. This simply can’t be maintained on a ventilator because it isn’t a healthy breathing pattern. And it was evidenced by Zion’s CO2 creeping up into the 60s (which is high). So to be safe, they felt it was time to pull the trigger. I completely agreed. But I did also start crying when I hung up. Something the attending pulmonologist said earlier that morning was running through my mind. She said that if Zion didn’t tolerate the home vent, that they might not re-try him on it until he was “a little older”. So I allowed the thought of potentially waiting months more for another trial to get the best of me. It totally robbed me of the ability to see God’s glory in this – Zion actually went over 12 hours on the home vent. This is an awesome accomplishment for his first time!!!
But as I wallowed in self pity, without missing a beat, my husband edged closer to me in the hotel bed, embraced me, and said…
Thank You Lord for giving Zion seven months of life.”
Pure truth that instantly brought me peace. We both got out of bed and George lead us in a long prayer, that started about Zion, but then ended in a tearful prayer of intercession for one of my best friends who is currently in the process of going home to be with Jesus after years of battling cancer. I thank my Lord for bringing people and situations into my life to put my current situation and my current problems into proper perspective. Yes, it was a little set back for Zion. But it pales in comparison to a husband having to watch his wife slowly pass away. It’s the sort of thought that makes me embarrassed I even cried over something so silly in light of what my friends are going through right now. I went to bed in peace, knowing that this was all part of God’s plan for Zion, and for our family. Because we know that God is also working on us as He works on Zion. And who knows, maybe Zion’s ministry in the hospital isn’t finished yet? Only God knows. We surrender to His plan.
Fast forward to yesterday – I got some encouraging news! The team actually plans to quickly retry Zion again on the home vent, but this time in a different mode. Before he was on what’s called “volume control” mode. This time they will try “pressure control” mode. Normally I like explain the medical terms to everyone on my blog, but I’m no respiratory therapist, that one is above my pay grade. I will just be praying that this new mode is a better “fit”! The plan is to try it out tomorrow (Monday). We will keep everyone updated.
In closing, my devotional and Bible reading yesterday talked about how Christians are called to die to themselves. It was so timely, like God’s word always is. If I am honest with myself, the main reason I would be upset with Zion not being able to stay on the home vent would be the reality that we need to continue this lifestyle of living part of our life at home, and part of our life at the hospital. It’s a lifestyle that requires much endurance. And at times, I’m simply just plain tired of it. Humans all gravitate toward what’s more comfortable for them. For me, that would of course be me staying at home full time with ALL of my children under one roof. But this is what dying to self is about. God is calling us to keep pressing forward as things currently are. This sanctification process is chiseling and shaping our characters to be more like our Savior, Jesus. And it’s also comforting to know that God told us in advance that in this world we would endure “suffering”, “tribulations” and “trials”. But praise be to God that He has promised to give us the grace to tackle whatever difficulty or challenge that He daily brings our way – for His glory. Dying to self is painful, but it is the only way to find life, according to God Almighty.
“But Jesus answered them, saying, “The hour has come that the Son of Man should be glorified. Most assuredly, I say to you, unless a grain of wheat falls into the ground and dies, it remains alone; but if it dies, it produces much grain (fruit). He who loves his life will lose it, and he who hates his life in this world will keep it for eternal life.”
- The hospital’s “car seat” program called me this week after getting a referral for Zion. They stop by the bedside to actually place the baby into the actual car seat to ensure it’s a proper fit. We have no idea when Zion will be able to come home, but I took this phone call as such an encouraging sign of hope!
- My daughter’s pediatric ophthalmologist (with Children’s Hospital) has been seeing her for an eye condition she has for the past couple of years. She recently offered to babysit my two kiddos on a Saturday during her “office day”, while I visited Zion at the hospital. (She happens to have quite an amazing waiting room full of toys that my children love to play with). To have a physician offer to watch my children in her office, on a day when she should be working, was something I never could have imagined would happen. Doctors are such busy people. So I just wanted to praise the Lord for giving us such kindhearted people to love and care for us during this time in ways we never could have imagined.
- Thanks to our mother Celia, my husband and I just had our first night away without the children… EVER. We have been married a little over 5 years, and have had children for over 4 of those years, so this has been a long time coming. This little “staycation” was amazing. We enjoyed peace. Quietness. The ability have an uninterrupted conversation. Not needing to rush home after dinner. It felt like we were dating again. We both kept grinning coyly as we repeated how amazing the time away has been. At times we had to pinch ourselves to make sure what was happening was really real! It was! And it really drew us closer to one another. So to those of you with small children, do everything you can to make this happen on occasion. It’s one of the best gifts you can give your marriage!
– Please be praying that Zion’s second trial on the home vent tomorrow in the new mode is a success! We are hoping that he can stay on the home vent this time for the long haul. Pray for wisdom to be given to the staff to determine the best settings for the vent after the switch takes place.
– Zion is still having G button issues. As of late, his little button completely fell out of his stomach due to the water balloon (inside his stomach which keeps the button secure) deflating… again. The team recently put in a brand new (slightly longer) button today. Pray this one works better, and please continue to pray for healing of his G button stoma as well. It’s still very red and bleeds often.
– Zion has difficulty passing stool. This is a common thing that plagues many Trisomy 18 babies. The reason is often unknown, however I feel lead to try to dig deeper to see if we can uncover an actual, treatable reason that can bring my son some relief. Please pray for soft hearts when I present some ideas to the team and for wisdom and discernment as they explore, if they are willing.
– The night after George’s dream about the evil man wrestling with me, my mother-in-law (who also has some interesting dreams) had a bad dream about an evil man constantly pursuing and threatening her everywhere she went. Please pray for her coverage and protection as well.
***Please pray for one of my best friends (my college roomate) who will be meeting Jesus in Heaven soon. She has battled cancer for 6 years. We ask that God would take her home quickly and peacefully. Pray for comfort for her husband and daughter as well.