Here’s a small 14th century chapel in Wells, England where prayers were lifted by our Grecian friends in the faith for Zion on the day of his surgery… the sweet aroma of prayers is floating up from around the globe as our Zion turns 100 days old today!
Here are some smiles and yawns from little Zi today. He was doing okay despite some setbacks over the last few days.
To keep it simple, I will just highlight the key updates and prayer requests we have now – with one BIG prayer request in particular:
Zion continues to keep us on our toes. Saturday we discovered he wasn’t urinating hardly at all, which was due to a blood clot in his bladder blocking his urethra (caused by trauma from the catheter used during his surgery). So he had to get another catheter inserted that day to drain his urine while the clot dissolved. Thankfully that catheter was removed today and his urine is clear again. Please pray that this has completely resolved and that his kidney function is okay. Here’s a photo of him getting a bladder scan which discovered the issue. (It comforts him if he can hold someone’s hand).
I found out yesterday that Zion sustained a rib fracture sometime around 6/11. This was found on chest X-ray. It was disheartening to learn this since that obviously caused him pain and no one knew. It’s unclear how it happened, but one theory is that Zion’s bones are becoming more porous the longer he stays on Lasix (the diuretic used to control excess fluids due to his heart condition). This is one of the unfortunate side effects of being on Lasix long term. So Zion’s bones are more fragile and can break easily. Even a cough could have caused this (and Zion certainly coughs very hard). Please pray for God to heal the fracture and for God to strengthen and gird his bones.
Starting last night Zion had a very scary episode of his vital signs rapidly deteriorating. Around 11pm his heart rate increased coupled with him having increased work to breathe. In addition, his oxygen sats kept dropping, despite them giving him more and more oxygen on the ventilator. The nurse had to continually increase his oxygen on the vent until he was close to getting 100% oxygen – yet his oxygen sats kept hovering in the 80s or lower. (This has never happened with Zion). It must have been worrisome for the team because I got a call from the nurse practitioner in the middle of the night at 2:30am. It scared me to death. She didn’t tell me it was so serious that we needed to come in immediately, but wanted us to be aware when we came today. Fast forward to this morning, I arrived around 9:30am to find Zion really pale with his oxygen sats still in the 80s. I prayed over him. During that time the cardiology team came to speak with me (see next prayer request). During our conversation it’s like the episode instantly resolved! Out of nowhere Zion’s oxygen sats started going up into the 90s again, and nurse Abby was able to quickly wean Zion’s oxygen on the vent down to the 50s. I attribute this to God hearing and answering my prayer! But Abby and I joked how maybe Zion wanted to play a funny game by taking his oxygen requirement to 100% since today he turned one hundred days old? 🙂 The team did start him on antibiotics though to be safe and have run many other tests and workups to try to uncover what was going on. For now, they suspect it was infection based on what they saw on chest x ray. Please pray for wisdom for the team to discover the cause of this. And pray that God would heal what’s causing this in Zion. Pray for covering from infections.
The cardiology team at Children’s presented Zion’s updated case (post surgery) at the conference again this morning. The purpose was to decide if he would be a candidate for anymore heart surgery. The decision between all the doctors was that more heart surgery was not in Zion’s best interest, due to what happened in the cath lab. So now, we are at a pivotal crossroads with our son. We do believe God has brought us to a time such as this to show His glory, but we need to trust Him and keep the faith. George and I have two options. Let Zion be from this point forward, and be content with his heart as it is, and cherish the time that we have with him (knowing it might be shorter with no more surgical intervention)? Or continue to fight for his life by considering having him flown to Children’s of Omaha for Dr. Hammel to perform an open heart surgery? The latter is a huge decision that we don’t take lightly. It would require upheaval of our family for a time being – requiring the kids and I to be separated from George for a month or longer. I would also need a family member to come with me to help care for the kids. It likely also would be a very high risk surgery. We aren’t sure how insurance would cover traveling to an out of state hospital. BUT, what we do know is that many Trisomy 18 hearts have been successfully repaired by this man, so we feel it’s prudent to strongly consider this option. So for now, Omaha is gathering Zion’s records in order to pass along his data to Dr. Hammel, so that he can make the most informed decision as to whether or not he can repair Zion’s heart. So we will be praying as we wait on the Lord. We are also comforted by all the Trisomy families we are coming to know who have gone to Omaha and have children who are now thriving with their repaired hearts. I never in a million years thought we would consider Omaha, but things change when you see your child in the flesh and fall in love with them. Please pray for God’s wisdom and direction as we make this very big decision. It’s one of those decisions where things could move very quickly if Omaha says “yes” and we accept. If Omaha says “no”, than the next step is pretty clear. Pray for God’s perfect will to be done.
In the meantime, we pray that…
“This sickness will not end in death; but [on the contrary it is] for the glory and honor of God, so that the Son of God may be glorified by it.”John 11:4 AMP