Backwards.

This is the word God gave someone for Gideon. I had seen her several times at church but never really spoken to her. She came up to me a few weeks ago and said God said to pray over me and our family. She then proceeded to tell me that the word gave to her when she learned of Gideon was "backwards" I didn't know what this meant as I explained to her our recent prayer requests for him. Sure there were some developmental things that he is "scattered" about and we are making leaps and bounds respiratory wise. But nothing truly backwards. Until today.

I am very, very behind a solid update for Gideon, but such is life. We had a mountain of appointments last week and my original title for this post was something along the lines of "next surgery, no more nose stint, pulmonology updates, and more". So this will include even more updates.

Last week we received our next surgery date June 26th! So soon. I expected late July/ August, but they have an opening in June or we wait until September. So we are going with the June date for Gideon's palate repair.

We also had our pulmonology appointment last Thursday to try the Passy-Muir valve which is a speaking valve. This was such a huge prayer request that Gideon would pass this and breath around his trach. We brought this request before God and He more than delivered. Gideon had failed a complete capping test in March (capping off the trach so all inhales and exhales come through his mouth). Our doctor heard no airflow with the capping of his trach. This could indicate several things - an overgrowth of granulation tissue, needing a bigger trach, needing a surgery to laser off extra tissue. None of these things were what we wanted and seemed like a step in the wrong direction. Well Gideon started setting off his vent over the past few weeks because he was BREATHING AROUND THE TRACH! And our vent can not register or compensate that he is doing that. Which has been keeping us (mostly Daniel) up at night. One solution is to inflate the balloon that is on Gideon's trach at night to make more of a seal. So we started doing that to get some better sleep at night.

This morning - Gideon woke up and I went in to deflate his balloon. When I did this, blood started pooling into his trach (very very scary). I told Daniel and we started clearing out the blood. Blood in a trach warrants an ER visit - to be checked out and we wanted to talk with our Pulmonologist. Low and behold our pulmonologist is working in the hospital this week and the ER was not busy when we got here. The process was so incredibly smooth. After talking with him and discussing theories and solutions, we decided to do a sleep study on Gideon tonight. Originally our plan was surgery (late June), heal from surgery, perform a bronchoscopy late summer and do a sleep study after the bronch. Well all that has changed now. We could take steps backwards and leave his trach balloon (also referred to as a cuff) inflated, but since we think he had granulation tissue rubbed inside with the inflation, it is best advised to not re-inflate it at this time.

His bleeding subsided fairly quickly and we haven't seen any more. He also does not seem irritated at all. We had noticed these past few days that something was bothering him and whenever the tissue broke loose this morning, he was the happiest he's been in days.

So here we are. Sitting in the PICU to watch and wait as Gideon sleeps off the vent overnight.

hanging out in PICU and getting to visit with our friends here.