Yesterday afternoon Ambrose seemed to be really struggling to breath. The attending thought he looked like he was having some airway obstruction and called for an ENT consult. The ENT resident scoped him through his trach and indeed it looked like he was seeing the back wall of his trach instead of down into his lungs. (Ambrose used a neonatal length trach since it seems the pediatric length kids his size would usually use doesn't seem to fit him. From x-ray he seems to have plenty of room length wise, but when scoped it appeared that it didn't sit right in Ambrose due to his unusual anatomy and hit the back wall of his trach, causing it to obstruct.) When he was changed to a cuffed trach yesterday, it was a different brand as his brand does not make cuffed trachs in the neonatal size. Even though this trach is no longer than his usual one, there seems to be a slightly different angle which is also hitting the back wall. Amazingly, a rolled towel under his neck/shoulders drastically improved his breathing. It seemed to correct the angle of the trach and he was suddenly breathing easily. If he continues to need no more than CPAP he can go back to his usual Neo Shiley uncuffed trach and alleviate this extremely inconvenient problem. Aparently there is a flexible trach we may special order and the possibility of getting custom size trachs. Nothing but the finest for little Brosie.
Below is a picture of Ambrose in his hospital johnnie, featuring little boys and girls in space, and his new "boxing gloves", otherwise known as hand splints.
His IV, placed precariously in his right armpit (on the third attempt), is holding up for now. It is in such an odd spot because he has so few acceptable looking veins. Say a little IV prayer that it will last as long as needed.
I hope you all get a chance to get out and enjoy this beautiful day.