It seems like just the other day I wrote a blog update entitled “100” to inform everyone that Zion had reached 100 days old. Well, today marks yet another awesome milestone. Zion is 200 days old today!!! We thank God for continuing to uphold our son’s life. And we are grateful for the ministry that God has birthed through our son! I thought it would be fun to share some Zion fun facts and stats to compare him to other (healthy) babies his age.
Weight – 14.2 lbs (2nd%) / Length – 58cm (0%) / Weight vs Length – (99th%) / Head circumference – (0.1%) (**Stats based on CDC WHO growth charts)
Hair color: light brown
Eye color: blue
Nationality: 50% Greek-American, 25% African-American, 25% Polish-American
Likes: Being held, holding fingers, listening to music, singing or talking, kissing your fingers
Dislikes: being hot/sweaty, being swaddled, pooping and poopy diapers, trach tie changes
Since my last update, overall Zion has been doing well. The team has been continuing to tinker with his ventilator settings in order to prepare him for switching to the home vent. It seems that the big switch date keeps getting delayed because Zion has been showing that some of the changes have been happening a little too fast for him. This is primarily seen by him working a little harder to breathe, and also with his oxygen saturations hovering a little lower than normal (70% range vs. 80% range). So, originally the plan was for Zion to have been switched to the home vent by now, but the latest is that they will give him another couple weeks. This is because the team chose to backtrack on some of the progress Zion made on the vent in order to give him a break, and the new plan is to move forward again, but in a slower fashion than before to make it easier on Zion. Despite these challenges Zion has faced, his oxygen requirements have still remained at only 21% the majority of the time.
Thanks be to God, we have accomplished a lot of our goals for Zion that we had everyone pray about in the last update. Zion’s trach was upsized again to a pediatric size which is just a little longer than the prior one. He continues to be weaned off of his methadone (but this wean has been put on hold for the time being since he’s being pushed a lot with the vent changes). He seems to have tolerated the new drug that was started to help his oxygen saturations. The team recently agreed to drop Zion’s 3am feeding which he tolerated just fine – this has helped him sleep a little better at night. We now have 3-4 primary nurses on Zion’s care team which is great for him to have consistency and familiarity. And lastly the team has been weaning Zion’s diuretics as well as his pulmonary hypertension medicine to dosages more consistent with a home regimen that will also (hopefully) keep his electrolytes more stable and balanced.
Zion’s biggest “issue” as of late has been some bleeding and leaking at his G button stoma as well as some spots of irritation on his neck since getting this new brand of trach. This was very disheartening for me since I’ve always taken comfort in how beautiful and pristine my son’s stomas and skin have looked at these two sites. I’ve seen many photos of what can happen when skin breakdowns or stoma issues are not healed quickly – so I’ve been praying a lot for God to help us figure out what is causing his issues and to provide the best solutions to heal the areas. As far as the G button stoma, there are currently differing opinions as to what’s happening at that site. Some say the stoma is prolapsed. Others say it’s “granulation tissue” (which is very common in stomas). This is when the skin thickens and forms a crust in response to the foreign substance (ex: trach, G button, etc.) sitting in the stoma. I feel like it could be the former. But please be praying we find the answer quickly, since it’s crucial to be correct in that so we have the proper treatment on board.
George and I had our first care conference with the TCC the other week. It went so well and felt great to have everyone on the same page as us and desiring to help us achieve our goals in getting Zion home as soon as possible. The purpose of the meeting was also to clarify to the team when we wanted them to intervene on Zion (ex: bagging him). We sensed a lot of confusion amongst the TCC team and we wanted to ensure everyone was comfortable with Zion and knew when we felt it was appropriate to intervene. So we talked through various situations and explained what we would and wouldn’t want done. And we also talked about changing his oxygen alarm settings on the monitor in his room to more appropriate parameters. This has brought a lot more understanding, peace and comfort for the nurses and RTs.
Before George resumed going back to work, he was able to accomplish some big goals off of his hospital training checklist which included doing a trach change on Zion, and also being the “holder” of the trach during a trach tie change. Next on the list will be George and I doing our first trach change together (with RT supervision of course). The TCC is working diligently to fulfill their mission in equipping and training us as parents to care for our child’s special needs when he comes home. We are so grateful for that.
Meanwhile I have changed course and, instead of having someone always watch the kids while I visit Zion at the hospital during the week, I’ve started taking them with me for the visit. Sometimes this works surprisingly well, other times it’s a crazy HOT MESS (as you can imagine with a 2-year old confined to a small hospital room with many new and interesting things he’s not allowed to touch!) At times, this has been quite stressful for my controlling personality type, but God has been giving me grace and teaching me patience through this new experience. I’ve been trying to focus on how amazing it feels to have all of my children together hanging out in the same room. It’s the little things! And I also want to redeem the time and get in as many visits with the kids as possible before the hospital starts their flu restrictions and the kids can no longer visit.
I want to say thank you to everyone who has come up to us or messaged us over the past couple of months to encourage us, thank us for sharing, or to pray for us. It means more than you know. This blog has taken on an entirely new life of its own. It’s become a lot bigger of a thing than I ever imagined. And with that, my free time seems to be less and less. To blog, one must have TIME of course. Time is very hard to come by nowadays. Some days I want to just give up, write my last blog and update people on the side when I can. But then someone comes up to me at church and shares with me how their faith has been growing by reading about how we see God in this journey, or I get an email from someone referring to this as an actual ministry and thanking me for it, and I sense the Lord telling me that I must press on. God has me in a place where I literally am being emptied. I don’t have much to offer anyone at this point in my life. I feel like I can’t really accomplish much of anything worthwhile at home. Yet He is apparently doing great things through the little bit I occasionally share on this blog. That’s so God.
My mother in law, Celia, is arriving this week to stay with us again for an indefinite amount of time. And her visit can’t come soon enough! It’s been really hard for me in particular to go from spending 24 hours with Zion (the first week he got to the TCC), to then going back to just visiting Zion for 1-2 hours a day. I feel terrible about this, and I sense Zion isn’t happy about it either. So Celia being here will provide some much needed consistent help with our other two children, and will also allow us to spend longer periods at the hospital with Zion. It is our hope that she can stay until Zion comes home, to help support us as we make that huge transition. So we pray that Zion can come home soon! And we THANK GOD for the provision of a faithful, gracious and God-fearing mother in Celia who will put her life on hold (yet again) for our family.
- THANK YOU to those who continue to love on our family with love offerings, meals, babysitting, and even beautiful handmade blankets!
- When we checked our children into church the other week, we noticed someone had added our son Zion’s name to the computer system! It was such a pleasant surprise! And it gave me a little extra boost of hope that our son would soon be home and my dream of bringing him to church one day might actually become a reality.
- My husband and I continue to grow closer in our marriage. We are so grateful for what God is doing in us through this experience with Zion. Many times you see marriages/relationships struggle or end in a situation like this. But with God as our Rock, He is making us cleave tighter to one another. And it’s been a blessing to watch the rapid spiritual growth in my husband.
- Pray for God to give Zion abundant grace and strength to be able to tolerate the ventilator changes and that he would make a successful upcoming switch to the home ventilator.
- Please pray that Zion’s G button stoma and his neck irritations would heal quickly.
- Pray that Zion will tolerate the lower amounts of diuretics and PH medicine and that his electrolytes would become balanced and stable.
- Pray that God would send experienced, God-fearing home nurses to the agencies to be hired to work with Zion. Pray that they would be offered fair and competitive pay in particular. So far we had one nurse interview and she will be moving forward!
- Pray for safe travels for Celia and for abundant grace and endurance to abound to her as she helps us care for the children.
- Prayer for God to show me the proper timing for beginning my preschool homeschool curriculum with our 4-year old daughter. She has been so ready and eager to learn more, so I hope to begin sometime soon.
Our soul waits for the Lord;Psalm 33:20-22
He is our help and our shield.
For our heart shall rejoice in Him,
Because we have trusted in His holy name.
Let Your mercy, O Lord, be upon us,
Just as we hope in You