WHEW!!! Last night we got home at 8:00 from Abe's pulmonologist appt. On the way up there I remembered I didn't send out an email saying we were going & asking for prayer. I have to say this was an appt I was anxious about. I was hoping for answers, a little concerned about what those answers might be, & kinda hoping we wouldn't get answers.
Well first off I have to say that I never thought I would meet a pulmonologist that I liked better than Dr. Teague. He was Mary Elizabeth's pulmonologist for almost 15 years & I loved him.
Dr. Schoen, Abe's GI specialist recommended Dr. Kim to us. We all really liked her. She admitted she knew very little about mitochondrial diseases which is how Abe is still being treated until a more definite diagnosed is reached. I wasn't surprised that she said that but knew right away we had found a good doctor because didn't act like she knew about it.
She was surprised that Abe had not had a sleep study done yet. That is on the list to be scheduled. She also wants to do a bronchoscope to see just how floppy his airway is. She will also do a Bronchoalveolar lavage where she will put fluid in his lungs & then remove part of it to see if he has any type infection in the lining of his lungs. Since he is considered high risk she will not put him to sleep just for those two procedures. She will wait until he is having something else done. She is checking with GI to see if there is something they want done.
She was very detailed & went through lots of options. Lots we hope we don't get to. She sent us to the hospital for x-rays & lab work. She was concerned about his CO2 being elevated the last time but is hoping it was due to stress.
It was very long at the hospital but all went well. Once again I am so very thankful to have such a wonderful children's hospital near by with excellent staff.
While we were waiting to register my friend Gina walked through. She had her husband Brian are there with their son Tyler that I told ya'll about the other day. He had just had a CT scan because they thought his cancer may have spread to his brain. We are praising God that it has not. It was one of his medication making him talk out of his head. Please continue to remember Tyler. Some extra prayers for his mom Gina would be great too. She was so very tired. It's such a long hard road she is walking.
We stopped by the cafeteria to get us something to eat around 5:30 because we knew we would be sitting in traffic. Neither of us had eaten anything except a pack of crackers (hospital life once again it seemed) so the cafeteria sounded good. As we were walking out we ran into our friend Shannon. Hers & Mike's son Sam was there to be weaned off the ventilator. OH MY WORD!!! That boy is so very precious. Remember he is Abe's NICU buddy. Well he was in this bouncy exersaucer in his room. He looked at me & smiled & my heart melted. His daddy made him give me his mean look. I clapped & he clapped. Mike (his daddy) told me to pick him up so he could give me a hug, Vent tubes, pulse ox cords & all, here we go. As soon as I had him in my arms & asked for a hug he put those precious little arms around my neck & hugged me so tight. The tears flow again as I type this. So many thoughts and so many emotions. That little boy is a fighter & has come such a very long way.
Shannon walked us out to the van so she could get Sam's ball for him. As we drove off I said to Mike isn't he precious. He said yes & could you imagine if Abe could do that. He said Marlee Anne would be so excited. Those are things she wishes for he brother every single day. Just yesterday she said mom when Abe is able to sit up I am going to teach him how to...... I don't remember what she said because I was still lost in when he is able to sit up. So thankful but at times my mommie heart longs for more.
So now we start down a new path on this journey. Hurry up & wait I am sure. We would appreciate your prayers greatly. Please keep Ricky's family & friends in your prayers today too as they have his celebration of life service.