Dear John Paul,
A belated happy birthday! I intended to write you a letter on the day you turned 6 months old, but things got a little crazy and I spent the day hanging out with you in the PICU at Children's instead.
I had been talking with ENT (Ear, Nose, Throat) doctors a couple of days before you went in because we had been seeing small amounts of blood in from your nose, mouth and trach...while they weren't too concerned, since it didn't seem to be resolving they had us come in through the emergency room so they could take a look. They did see some dryness and irritation but felt like you could heal at home and we packed up to go. On the way home however, you started to desat to the 80s and we were suctioning more blood than we had previously seen. Your dad and I weren't comfortable going home because we have seen you escalate pretty badly under similar circumstances, so we turned around and went back to the ER. Once we got to the ER we had to do an emergency trach change because your trach was so filled with blood that the ENT doctors couldn't see anything with the scope. Once they could see...they didn't see anything that was actively bleeding and they were concerned that the blood was coming from lower down in your lungs. You were immediately admitted and treated on antibiotics while they started running all the tests, x-rays, and cultures in order to rule out pneumonia or tracheitis.
Pretty quickly, the bleeding seemed to subside and little by little, all of the test came back negative. The morning after your first night in the PICU however, you decided to show the nurses, respiratory therapists and doctors what you are capable of...you started to desat and then during suctioning and bagging, your heart rate started jumping all over the place...going as low as 78 bpm...then every time we tried reconnecting you to your home vent...your would desat all over again...we ended up doing another emergency trach change which turned out clean and you started maintaining your stats consistently between 93-96 which is not great for you. We switched you to the hospital vent and mysteriously you started doing much better. The rest of your stay was uneventful and we got to bring you home the following day.
While you were in the hospital, you got visits from several of your old NICU nurses who couldn't believe how big you have gotten...I finally measured you against your big brother, Ben: at 6 months, you are 29 inches long...at 2 years old Ben is 33 inches long! You are not far behind at all!
On Monday, we are starting our 4th nursing agency and meanwhile your father and I are actively working on setting up ways to get you higher level nurses. I have been so humbled by your dad's unfailing dedication to getting you the care you need. He has led the way as your protector and advocate--not accepting the status quo. He is amazingly optimistic and innovative--100% motivated by his love for you.
Love you so,