I am once again playing catch up here. Last night I was too tired to form a complete thought but tonight my wakefulness has been aided by a dear friend who shared her Netflix with me. So with 3 episodes of Madam Secretary down, I am now still wide awake at 1:00 am and able to give you an update on Maggie Mei. :)
I had 3 fears going into surgery yesterday. The first was that she would not survive. We shared a US Consulate appointment with a child like Maggie who did not survive her complete Fontan so of course that possibility was very real to me. My second fear was that she would be deprived of oxygen to the point that it would further the brain damage that occurred last summer. I followed the story of another sweet child this summer who went into cardiac arrest following his Fontan and was declared brain dead from a lack of oxygen to those tissues. So yes, once again, a very real fear. My final fear was that her lungs would not accept the new circulation and she would not be able to come off of bypass or the ventilator.
I am happy to report that none of these were Maggie's story. In fact, she came off of bypass and the ventilator without any difficulty and has been showing her spunky personality again since she woke up. I recognize that this success was not guaranteed to us and thus is a gift. Why the Lord has chosen to grant her another set of days, I don't know, but once again I am thankful.
Transition to today. So, yes, today has been full of ups and downs. The positives are that they removed her catheter, her arterial line, and her supportive oxygen. They took her off of the scheduled pain pump and she is not receiving pain meds on demand. This is all good but not without its challenges.
Here is what you can pray over for Friday and how ever long it takes to resolve these:
1. Maggie is vomiting which is causing increased discomfort and dehydration. They have to regulate carefully how much fluid they give her because of the fluid still on her lungs. The vomiting makes that even more challenging. Pray this stops. She also has not had a wet diaper since removing her catheter this morning so there are talks of putting it back in. Pray she makes a big wet diaper.
2. Her lungs are still draining blood. This needs to stop before her chest tubes can be removed. Tonight her oxygen sats were dipping back to pre-op levels and she had to be put back on oxygen.
3. It appeared that she was having alternating periods of lethargy and wakefulness today. It was puzzling until tonight when I witnessed Maggie have an Absence Seizure during a pain episode. Maggie had these seizures last summer and they were always followed by moments of deep sleep. I notified the nurse who notified the team and she came back and said, "they think it is just the dehydration." Well, they didn't see it and they don't know my child like I do so I will give them the grace to be wrong. Tomorrow I need these episodes to end completely or for them to call in a Neurology consult. If they don't, I may just have to call one in myself. I really think all she would need is to be have her seizure med adjusted from the weaning off dose she is currently on to a weight appropriate dose due to the change in status. You can pray that I don't have to go all crazy mama bear on them.
4. Finally, pray for sweet time. I held her briefly today but she was uncomfortable and wanted to return to bed. Pray for sweet moments of comforting and bonding.
Now that I have discovered Netflix and Madam Secretary, I should be able to stay awake long enough to update you again tomorrow or the next day. Thank you for your prayers. They mean everything to us.