Yesterday, Zion reached 150 days of life! Thank You Jesus!!!
We have made a LOT of progress since initiating our new plan for Zion beginning on Monday. As you can see in my photo below, Zion is getting close to being completely off of all of the initial interventions that were initiated by Omaha – primarily the DRIPS. Before starting the fast, Zion was on a lot of medications. These were medications that Zion was not on in Cincinnati. The Omaha team started him on them with the intention of calming and stabilizing him (preventing or minimizing his low oxygen desats) in order to wean him down on Nitric (a prerequisite to sending him to the cath lab to determine the severity of his pulmonary hypertension). Unfortunately, the plan didn’t work, because all the medications only destabilized him and caused more episodes. And this was proved yesterday.
In this journey with Zion, I have learned that there are two types of practitioners. The first group make up the majority. They come in at moments to help, make changes, assess plans, etc. They stay sort of on the surface with you and your child. Sort of at arm’s length. It’s not that they don’t care per se. But they just seem more fixated on the tasks themselves than on the people they are doing the tasks on.
Then there are the gems. These practitioners are certainly not the majority. These take more time than usual and go deeper. They seem to take a vested interest in your child. Or maybe they are more loving and affectionate to your child. These people stand out as those who simply, care more. The nurse practitioner with the pulmonary hypertension team here in Omaha is one of those gems.
She started asking the bedside nurse about how many desat episodes Zion has had since starting on our new plan (including starting on Sildenafil, the pulmonary hypertension medication). The nurse wasn’t totally sure of those details so she took it upon herself to start tinkering around up on the vitals monitor to see if that data was tracked. See, that right there is what I’m talking about! She didn’t just accept an uncertain answer. She moved forward to see if the answer she needed was possible. This might seem like a little thing, but it’s a BIG thing to me. Most practitioners don’t take the time to do this in their hectic and busy days. She quickly found what she was looking for.
The HISTOGRAM!!! A histogram is a way to easily look at numerical data in graph or bar chart format. I’m a visual person, so her finding instantly tickled my fancy as I hustled over to look. First she looked at the dates leading up to our new plan – when Zion was fully sedated on the cocktail of meds. The histogram was peppered with desats (both small ones and really bad ones) all throughout his days. He most certainly appeared to be a very unstable baby if one were just looking at that data for that point in time. Then came the moment of truth. She changed the dates to observe his desat data beginning this Monday when we instituted his new plan…
You guys, I tried and tried to get either a photo or the histogram itself printed off so I could post it here in the blog, to no avail. But what we saw were BIG spans of time with no desats at all! And we also noticed that his very bad desats (below 50% oxygen saturation) were only happening more rarely! And those results have been consistent since we instituted this change on Monday. It was like a moment of REDEMPTION!!! I raised my hand in praise, but really wanted to shout, “Hallelujah!!!”… I held myself back though so as not to scare the babies next door. ;-P
Since Zion’s trach incident here in Omaha, and then the initiation of all of the drugs, we have continued to repeatedly hear the same disheartening phrases…
“Maybe his baselines have changed since being in Cincinnati?”
“He just might not be the same baby he was in Cincinnati.”
“Zion is on a LOT of support.”
That last one in particular really bugged me when I heard it. I just felt so strongly that Zion did not need all of that pharmaceutical or ventilator support. Getting the chance to fully trust God while slowly removing all the meds that have been added was an incredibly exciting opportunity. I wanted God to show His glory here. And that’s exactly what He has done!
“Did I not say to you that if you would believe you would see the glory of God?”John 11:40
As I write this post, Zion has been weaned off of almost all of the drugs he was put on at the beginning of his Omaha journey. The Precedex (sedative) will be done in a couple days. And the last big mountain to knock down is the MORPHINE drip. Our son was never on morphine before Omaha, but the team here used it as a way to sedate him and keep him comfortable. With opioid usage over the long term though, a tolerance can quickly develop. So the weaning process will have to be very slow, possibly utilizing other drugs (like Methadone if necessary) to get him successfully off of the Morphine. So all of the sedative drips are almost gone! The Nitric Oxide (which was used for his PH crises), is also close to being turned off. He’s down to about 3 ppm (before Monday he was at 20). Once the Nitric is gone, then we can tackle lowering the oxygen on Zion’s vent. Zion never required 100% oxygen full time. So I’m incredibly eager to get his oxygen back down to the 30% range, which was his norm before coming to Omaha.
Some new meds that have been added are some diuretics, a PH medication, and also a medication to help potential pain Zion might be having due to his enlarged liver. The diuretics are used to help Zion shed excess fluid which can build up when you have heart failure like Zion has. The PH medication he’s now on can also cause some “fluid overload”. The Gabapentin targets neuropathic pain. The palliative doctor explained that if Zion is having pain from his enlarged liver, that it would be more of a neuropathic pain, and that this med is appropriate for that. We are hoping it helps because we have noticed that, since being in Omaha, Zion now winces and appears to be in a lot of pain when we try to pick him up, or even just change his position in bed. Lastly, the Sildenafil is a good “first line” drug for infants with pulmonary hypertension. It’s also a relatively benign drug compared to other options for PH, and is also cost-effective. There might come a point down the road where a 2nd or even 3rd PH drug needs to be added, but so far Zion seems stable on this one alone.
Since Monday, Zion has been doing very well! He’s showing this entire team what he’s made of. And he’s much stronger than I think they thought he was. His oxygen saturations have been very good despite his PH. And to all of you who wrote to us declaring confidently that Zion’s life wasn’t finished yet – thank you for your faith!
I’m so grateful for my other two children! On particularly hard days with Zion, it’s amazing how the hugs from your other children can just instantly melt that pain away. It is so true what God declares. “Children are a gift…” (Psalm 127:3).
We praise God for our KY family and also for friends of friends who brought/sent blessings to Omaha! Thank you Laura & Brett for the awesome backpacks full of activities and Katrina for making busy bags for our children! These have been handy just in the nick of time. (We promise Judah enjoyed the gifts more than the photo 😝). And thank you Cindy from Grace for forwarding a blessing meant for YOU and giving it instead to us. God bless you all one hundred fold!
We appreciate so much the proactive team members who have been willing to quickly implement changes based on our feedback and knowledge of our son, in particular the head neonatologist here at Omaha. This is a woman who makes things happen. And quickly at that! And it is so refreshing to work with a physician who genuinely hears our desires and concerns, and if it makes good medical sense to her as well, will institute the change immediately. She has also said, “You know him better than we do.” This is such an important truth for doctors to acknowledge and act on, because good change can come when doctors take parent testimonials seriously. Her being more directly involved with Zion’s care this week has made a huge difference. As I said in a prior blog, the neonatologist on duty truly sets the pace! We also so appreciate Omaha having a follow up care conference with us yesterday (Thursday) to check in to see where we were with achieving goals and setting new ones for Zion. We felt very heard and cared for.
I was able to write out and share my responses to the two position papers on end of life care that the neo doctor gave me from the Catholic Church. I didn’t agree with everything in the papers, so I prayed for God to make clear what I needed to convey and peppered scriptures throughout to support all of my thoughts. I highlighted areas that I felt were not supported by scripture – the articles actually didn’t cite any Biblical references, just the Pope’s ideas. And I also thanked him for sharing and being open with me about his beliefs. I included my email in hopes he might have a response to my response. If not, God isn’t finished with him yet. Because the hospital where he is headed to happens to be the same hospital that one of the Trisomy babies will be going home to (hopefully) soon. And that baby’s momma loves and fears the Lord and is prepared to speak into this doctor’s life as well, should God so open that door. TBC!!! I’m thankful to have been able to establish a rapport with this doctor which enabled me to learn what I did and, in turn, point him to Jesus.
I’m praising God again for giving me former pharmaceutical sales experience. That knowledge has helped me to ask the right questions and better advocate for my son. Everything I learned while in pulmonary hypertension and the pain management spaces in particular are being put to good use this week!
Thank You Jesus for showing us clearly that our son was not dying. Thank You for revealing that his vitals deteriorating actually appear to have been caused by the meds he was put on to help and calm him! Our hope truly is in You. Anything that is in the dark you bring to the light.
Another baby in the Trisomy Tribe went home yesterday! We celebrate with her family and wish them well in this next exciting chapter, at home!
Lastly, THIS GIRL RIGHT HERE. This is yet another new Trisomy mama. Her name is Catie and she lives not far from our hometown. We became acquainted through the Rare Trisomy Facebook group. She just arrived here in Omaha to deliver her T-18 baby girl here sometime in September. So Omaha will now be her temporary home away from home. Long story short is, she drove to our house, packed up the rest of my frozen breast milk (that I couldn’t take with me on the plane)… all four gallon-sized Ziploc bagfuls, packed them (in expert fashion) in her luggage with a towel and ice packs, and brought them on her plane to Omaha. Zion and I are so incredibly grateful to her since Zion was about to run out of breast milk any day (I stopped pumping after arriving in Omaha). God truly provides – oftentimes through His people. THANK YOU Lord! And thank you Catie!
– Our big prayer request now that surgery is off the table is to make “Operation: Bring Zion Home” a success! Please pray for God to part the waters, move mountains and make a way, as only He can. Currently, the team submitted the request to “back transfer” Zion to Cincinnati, and it was denied as “not medically necessary”. This was not a surprise and is quite routine when dealing with insurance companies. Having to appeal this was expected, so we will be beginning that process this upcoming week. Pray that God would guide the wording of the appeal and give us favor with the insurance company.
– Pray for God to bring clarity and answers about hospice programs in our area. This is something that we are considering for Zion to be placed into if it will achieve our goals for him. Our goals are not to bring him home to die. But to bring him home ASAP while he still receives medical treatment and care. We desire to limit anymore of his life being spent in a NICU. We are uncertain right now if we will be able to have home nursing care assistance if we choose to go the hospice route, and this nursing care is very important to us. So pray that we would have all the answers we need in order to make the best decision. A lot of answers still need to come to the forefront before we can know the best course of action.
– Pray for God’s grace to abound to Zion during this time of weaning off of medications. He will especially need grace during the morphine wean. We hope and pray that God will protect him from uncomfortable withdrawal symptoms. And we pray that Zion continues to amaze the staff by remaining stable as he comes off of the meds and goes down on his oxygen requirements.
– Pray for God’s mercy regarding this pain we feel Zion might be having in his liver/body. We pray for relief so that Zion can be comfortable when being picked up, moved and held.
– Zion has had issues going #2 since being on the morphine drip (this is a common side effect of opioids). His belly is quite large and I can imagine he is uncomfortable. Pray that God would protect him from pain or complication and would help move things along as we prepare to begin to wean the morphine.
– We ask that God continue to guide the Omaha team with all decision making regarding Zion. And we pray that the team members would see God’s glory in how our son is thriving despite the belief by some that he might be at the end of his life. We don’t believe Zion is going anywhere yet!