Miriam’s ENT performed a third endoscopy on her throat early this morning, with mostly positive results. There was some growth on her throat in the same spot as he has previously removed fibromas twice before, but it was much smaller (even after seven weeks between excisions). It was clearly a lump running vertically along the wall of her throat, whereas before the masses were growing out into her throat and blocking her airway. Dr. Nowlin said this type of growth is much more typical of an “irritation fibroma,” caused by an over-reaction to a stress to the throat – in Miriam’s case, the breathing tube from her VEPTR implantation surgery. He is not ruling out the possibility of the mass growing back once again, but overall it sounds like this is much closer to the expected progression of similar cases and that is reassuring going forward.
Dr Nowlin does not anticipate needing to see us again before Miriam’s expansion surgery in August. He will be in attendance then so that he can scope her throat while she is already asleep for the expansion. If anything is present, he will be able to remove it at that time. It will also give us a good baseline for the health of her throat before it is subjected to another breathing tube. Thankfully, this surgery will only require a breathing tube for a couple of hours at most, rather than over two days like the implantation. Her risk for injury or irritation should hopefully be much lower this time around.
We are greatly relieved that the growth seems to be slowing, and hoping that it will heal itself completely this time. Thank you as always for your prayers.
We are grateful for many things. The greatest right now is how well Miriam is healing from her surgery. Since her skin breakdown was repaired she has been doing really well in her recovery. Her scars seem very solid and she has had hardly any pain. We visited Dr. Williams on Wednesday for a check-up and he was pleased with her progress. We will see him for a pre-op visit in July and then she will have her first expansion sometime in August. She has not grown much or gained much weight yet, but he is not concerned because 4-year-olds often experience a lull between growth spurts.
We are also grateful for the amazing generosity shown to us by many people, both friends and strangers. Several of you reading this contributed to our youcaring site to help with our expenses, and we wish to thank you from the bottom of our hearts for carrying us through the surgery without worry of immediate financial burden. And on top of that, we were extremely blessed by several members of the choir of Becky’s home parish of St. John the Evangelist in Davison, Michigan. They took it upon themselves to organize a Victorian Tea fundraiser for Miriam, and far exceeded even their own hopes for the event. Over 250 people attended and donated enough to cover the remainder of Miriam’s bills for this year and into the next. We can never thank all of these generous donors enough, especially those who worked to put together the event. Thank you, thank you, thank you!
We are asking for renewed prayer as we head into next week. Miriam is returning to the surgery center on Monday to have another endoscopy on her throat. Her voice is still making occasional strange sounds, and she is still making a few sighing noises in her sleep. Her symptoms are far less severe than before her two previous excisions. Her ENT will be checking once again to see if there is swelling or any kind of a growth in her larynx around her vocal cords. We are praying there is little to nothing there, because if something has grown back we will truly be in uncharted medical territory. Please pray for protection over her in surgery and for guidance and wisdom for her doctors. Thank you as always for your generosity in prayer. It is obvious in Miriam’s peace and joy despite all she has been through.