16th Update

Today Samuel is two months old and even though this has been difficult, we thank God that He has given us this little boy. Samuel’s had a rough week and a half with many issues that would take pages to explain. Due to the condition of his brain he has had what they call “posturing” since shortly after his birth. This is something I really haven’t talked much about in my updates, but it became a big issue this past week. Posturing is the brain sending signals to his muscles to contract, but not sending the signal to relax. Sometimes it makes his arms stiff, sometimes it makes his legs stiff and sometimes it makes his back arch. He has been getting regular physical and occupational therapy where they do range of motion exercises to keep him loose. Before Saturday (July 18), he would have times when he would posture throughout the day, but would always relax afterwards. After Saturday’s problems, he began posturing with arms, legs and back all at the same time and it was continuous. After trying several things, they finally gave him a mild muscle relaxer which did stop the constant posturing but it started causing him to take short pauses in his breathing that turned into longer pauses. He is still breathing on his own without the ventilator, although he has a slight amount of oxygen passing thru his trach collar. They have discontinued the current muscle relaxer and will begin a different med tomorrow that should not cause breathing issues.

He is no longer on the antibiotic for the infection he got from surgery, but is now on one for the bladder staff infection from all the catheters. Today they did remove the catheter and he is back to peeing and pooping regularly. He has had a fever from both infections, but as of yesterday that is clearing up and the fever is gone. His blood pressure has been an issue with the meds, fever and posturing but we are hoping this has worked itself out also. They still currently have him on blood pressure meds.

Last Tuesday Samuel’s G-tube was ripped while they were changing his feeding syringe and they had to change it out for a new one. Yesterday the balloon on the inside of his G-tube popped. Don’t ask how this happened, because nobody knows. Right now, he has a “Jerry rigged” G-tube until tomorrow and then they are going to give him a G-button early. He wasn’t scheduled to have a button for a couple more weeks.

We ask for your prayers that things will finally level out from the surgeries and that he will get back on track with his progress. Pray for continued healing, with no infections and no catheters. That all will go well with removing the G-tube and changing to the button; that he will breathe well with no pauses or oxygen. Pray that his blood pressure would correct itself and as always, healing of the brain and gag reflex.

Thank you for continuing with us,
Yancy