Yesterday, our precious Zion John turned 6 months old! I was reminded how, shortly before his birth, I asked God to simply let us see our son alive, even if it was just to take one breath. Well, God has exceeding abundantly done more than we could ask for Zion by giving him 6 months of life! And at the entrance of his 6th month, we have many things to praise God about!
On Monday, Zion officially graduated from the NICU and was transferred to the TCC (Transitional Care Center). This is where patients stay who are getting closer to going home and this center also helps train parents to care for those patients when they are out of the hospital. So far we have been very pleased with life in the TCC. It’s very friendly and laid back over here and it has a more peaceful feel. And the team is incredibly responsive to Zion’s desats, which has been a great comfort as well. George and I have been taking turns staying here in Zion’s new home in order to expedite the TCC team getting used to Zion and how he behaves, since his oxygen saturations fluctuate more than they are used to over here. The first couple days he sent people into a mild panic mode, but thankfully that has slowed down as they are understanding more how his heart affects his breathing.
There are many things that I love already about this unit. In addition to the friendliness of the team, Zion’s new room has two things that really excite me for Zion. A rocking chair, and a window with most perfect view of the sunrise!!! Yet again God shows His love for Zion and our family. The rocking chair apparently isn’t something that is often seen in the TCC, but it sounds like the patient who previously had this room used the rocking chair, so they figured they would let the chair stay. It has been so nice to be able to rock my son as I hold him. I also am so grateful for the window, because finally my son can experience the normal daylight/nighttime cycles. And Zion seems to enjoy letting the sun shine on his face. I have already noticed he’s sleeping better at night compared to how his sleep was reported to be in the NICU (often requiring sedatives). Zion hasn’t been given one sedative since he’s been here! In addition, they have been working now to wean him off of the methadone which was used to make him comfortable as he was weaned off of the morphine drip in Omaha.
For about a week now, Zion’s oxygen requirements have pretty consistently remained at 21% on the vent. This is the lowest setting that a ventilator will go because 21% is essentially “room air” – so this is a huge accomplishment for Zion considering he was on 100% oxygen in Omaha and not doing well at all. So the purpose of the ventilator for him at this point is more to provide the pressure support that he needs to keep his airways open. His oxygen desats have rarely gone below 50% since being at the TCC and he recovers pretty quickly after each one. And his breathing has looked the best we have ever seen it with almost no retractions. He truly appears to be growing up and becoming a big boy before our eyes.
Some things on Zion’s “To Do” list in the TCC include: attempting to upsize his trach again to a slightly longer (pediatric) size that hopefully will better aerate his lungs and minimize his desats, beginning to wean at least one of his night feedings (to help him sleep better at night), changing some of Zion’s settings on the vent to force him to have to trigger more of his own breaths which will prepare him for the home vent, making the big switch to the home vent which will be happening possibly in a few days, and lastly getting Zion’s diuretics optimized and electrolytes balanced.
In the meantime we have officially started recruiting for home care nurses by utilizing social media. I shared a little “ad” that I made for Zion on Facebook and was overwhelmed by the way so many rallied around to support our efforts. As I write this today, it has been shared over 550 times! And many of the people who shared our post were friends we haven’t talked to in decades – people we didn’t even realize were following Zion’s story. Other’s have continued to faithfully share our original post every day until we find all of the nursing help we need. It was encouraging to see so many people coming together for GOOD. It is our hope and prayer that God will come through in a big way to bring the nurses we need when Zion is ready for discharge. We know that this nursing shortage is not too difficult for the Lord!
In closing, thank you to those who continue to pray for us, encourage us, and support us in various ways. My husband’s colleague Karen at the Ark made for me a little “box of encouragement” (pictured below). It’s a box of handwritten note cards containing Charles Stanley’s “Daily Life Principles”. I was touched to know that it took her weeks to hand write all of these cards. And I know that this box will help my husband and I to “start each day with a grateful heart”. And my sweet niece surprised me with a lovely journey – just perfect timing for this new chapter we are entering. God continues to uphold and love us through others.
Our prayer requests are below:
- Pray that Zion would continue to tolerate the vent changes being made the past couple days. These changes are basically testing him for the home vent by requiring him to pull harder to trigger the vent to give him a breath. This has been making his retractions increase a little bit and it also makes him tire more easily – he’s been sleeping more. Also please pray that he would successfully transfer to the home vent on the first attempt when the decision is made to give it a try. Pray also that God would guide the selection process as to which vent they will use for him.
- One of the doctors wants to start Zion on a med to help him breathe better and decrease the number of desaturations he has in his oxygen. However, I’m concerned about the side effects associated with this med. Please pray that God would PROTECT Zion while trialing this new med over the next few days, and that He would make it abundantly clear if the med should be discontinued.
- Pray that the TCC team will “fully understand Zion’s entire clinical picture”. And pray that they will continue to learn him and how to best care for him in preparation for the times when mom and dad won’t be present. There still is a little confusion about how much to intervene when Zion’s oxygen drops – so please pray for clarity and understanding to be given by God to all the nurses and RTs in particular.
- Getting Zion’s diuretics optimized and his electrolytes balanced is something that is very strong on my heart. Please pray that God would grant the decision makers wisdom as to what to do. And that He would provide a way for Zion to be checked regularly when at home.
- Pray that God would keep Zion sickness and infection free. (He spiked a fever a couple days ago, but thankfully it appeared to be a random, isolated event).
- Pray that God would continue to “send workers” to us in the form of home nurses! The qualities we are looking for are: loving, wise, skilled in caring for infants, and God-fearing. We figured we would be very specific with this request since these are people who will be spending a LOT of time in our home! So far God has answered our prayers in that we currently have four strong nursing leads who come with loads of experience. The Lord is showing Himself so faithful in this endeavor.
- Prayer for my heart – that I would know that God is faithful and near to me on those rare days when multiple challenges, trials, and subsequent strong emotions arise. In particular I could use prayer in helping to get my home more organized and prepared for Zion.