I hesitated even doing another blog post tonight as not much has changed since Thursday’s post, but it just felt too unnatural to not do one as I have done one every Sunday night for the last 4.5 years!
Here are the updates I do have…
Levi’s stridor and airway issue are unchanged, and will stay pretty much the same until we surgically intervene (whether we do the new surgery or the tracheostomy) or God gives us our miracle. He squeaks when he breathes in, and when he gets worked up during diaper changes or anything painful like IV sticks he gets hysterical. When this happens he becomes a danger to himself as he can’t catch his breath. He has a desat about once a day or every other day where he drops his oxygen level down and needs to be turned up a bit until he calms down. But he is still on 21% (which is room air) on the nasal cannula. We are just attempting to keep him as calm and happy as possible until a decision is made on the next step.
We had one small scare this week as one of the nurses gave his some new medication to help him calm down and it relaxed him just a little too much to the point where he forgot to breath. We had to turn up his oxygen liters for several hours and it is now in his chart to steer clear from that medication from here on out as he had such a negative reaction.
As far as the MRV (to check veins) and the MRA (to check arteries), both came back clear. These tests were done as they suspected clotting may have caused his brain injury. They came in and said “Great news, the tests were negative for any clotting issues!” And while I was thrilled, it still doesn’t answer where the brain damage came from. When I asked them about the hypoxic ischemic event they concluded that it simply must have happened at his birth. This still didn’t make sense to me as the delivery went about as seamlessly as a semi-emergency c section can go.
I was able to get copies of his birth records and even spoke to the nurses and doctors in the room that night. Every single one of them said the same thing: there was no opportunity that night for him to be without oxygen for long enough to sustain “extensive” brain damage.
Since the MRV and the MRA came back clear hematology decided they didn’t need to pursue anything further, which is a totally logical and rational thing to say. But I just feel like there is something we are missing, so I asked the doctor if I could still meet with the hematologist to discuss Levi’s case.
Here is the problem for me…if I accept that his HIE happened at birth even though that doesn’t add up, we could be missing a MAJOR problem that could possibly happen again to Levi. Without concrete answers he still has potential to have another event and sustain more damage. I just can’t let this drop that easily as I want to be assured that he isn’t going to have the problem again.
Yesterday that meeting happened and I started from the top explaining Malachi’s birth history (placental abruption with a clot), my miscarriage, and Levi’s birth history (placental abruption). The more I mentioned the more this man’s mental wheels started to turn and I could see him processing through each detail. He said “There are red flags all over the place. There is clearly something going on here.” It was so refreshing to hear some validation from the hematologist and have him curious enough to help figure out the answer.
He said the tests he wanted to run on Levi for a possible autoimmune disorder he could not safely do until he is 6 months of age as the blood draw is a large amount. I asked if he could do the draws on me (as the issue is possibly hereditary) and he said that would be a great idea. He wrote down the tests for me to request from my hematologist and said he would contact him and go from there.
Today he came back and said he had gone home that evening and remembered a specific placental issue that can happen that can cause babies to suffer HIE events in utero. This issue is not detectable by tests and ultrasounds during pregnancy, but can be linked with abruptions. He said he would be very surprised if it was not this issue and asked if I would be willing to come to his office to draw up some bloodwork. He said he would have it sent to Memphis and checked and was very interested in the outcome. His office will be calling me in the morning and hopefully we will get the process for that started tomorrow.
This is the most important part to me…he said if it IS this issue that he is thinking of, that Levi is no longer in jeopardy of having another event since he is now out of my body. That is exactly the reassurance I need to hear.
We are prepping for Tuesdays meeting with the intent of settling on a game plan. Jake and I are at the point where just waiting and watching is no longer an option, as it is not in Levi’s best interest. I just hope that the specialists have followed through with contacting Cincinnati as they promised they would. Step one is seeing if he is even a candidate for their new procedure and simply knowing that fact will help us plan the next steps.
Those are the medical updates! Not much, but at least we are on the route to some answers.
I have been struggling a bit this week with feeling alone. It has nothing to do with physically being alone (well, with Levi) most of the day, but more to do with the burden of big decisions on my shoulders. I just feel so mentally alone, if that even remotely makes sense.
As the weeks roll by I find myself having to research and fight very hard for Levi, and unfortunately I am routinely met with opposition. With Malachi, his care plan was in the hands of professionals and we didn’t ever feel the need to question or advocate. But Levi’s journey is different.
My mind spins every day with the new information we are given as I try to unfold the mystery around this situation. Unfortunately Jake is not around for most of the conversations I have with the doctors and specialists so even he is not able to help bear some of the mental burden with me. He is my sounding board and my affirmation when I need it, but isn’t able to be by my side for the talks.
This is one of the first times I have ever felt weary. Truly weary. I am mentally exhausted by the decisions we are facing and the new information we are continually receiving, and as I look at this sweet little boy with *JUST* an upper airway issue I can’t help but desire to fight avidly to preserve his normalcy as much as possible. Yes, there is brain damage involved but we don’t waste our time and energy focusing on that right now as the effects will not manifest for quite some time.
As I have processed these emotions over the last few days, the Lord laid this verse on my heart:
Isaiah 41:10 “Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.”
I don’t think I could find a more perfect Bible verse that speaks directly to my weary heart right now. I am so thankful for the word of God. And I am incredibly thankful that I have such a mighty presence by my side each and every second of the day. Sometimes I forget that fact.
And I am thankful for this sweet little gift from God.
Please continue to lift up Levi in your prayers. Please pray that God orchestrates the details of our upcoming meeting and we feel peace about the decisions we will make. And please continue to expect a miracle for Levi. May he be completely healed and restored.