Long time, no blog! Finally have access to an actual computer instead of a tablet or kindle which I despise doing any length of typing on. However I'll only be doing a very short update because I'm running low on time.
We have hopefully finished our last round of synagis shots for this RSV season. Eli immediately flips out as soon as the nurse calls us back into the room so it will be nice to not have to go back monthly until November. We will have plenty of needles and pokes in the next few months with both the cardiac catherization and next open heart surgery quickly approaching.
Eli will have his cardiac cath on Tuesday April 9th and we will need to be at Hope by 6:30am. That means a 4:30am wake up call for mommy, boo to that! They will do all the initial stats of him and then after meeting with the doctor and antheisologist they will take him back into the procedure room. For those of you who don't know what a cardiac catherization is, I have cut and pasted a quick description. "A long, thin, flexible tube called a catheter is put into a blood vessel in your arm, groin (upper thigh), or neck and threaded to your heart. Through the catheter, your doctor can do diagnostic tests and treatments on your heart." (you can also click those words and it will take you to a website).
Currently Eli has 2 stents placed in his right pulmonary artery that he got last January during his last cath. They will ensure that those are still working properly and if not will expand them as needed. They do the cardiac cath to check the pressure in the chambers of his heart. This helps determine when surgery will done and what type of condition exactly his heart is in. If his stents need expanding we will need to spend the night in the hospital and have tests done in the morning to make sure it is all working as planned. If they don't need to do anything we should be going home by 3pm that day.
Typically within a month of cardiac cath they will perform his next open heart surgery. They don't like to wait any longer because of the possibility of the pressures changing too drastically since their last results. The Fontan surgery is considered the 2nd most intense surgery of the 3 stage surgeries. So he's already gone through the hardest and the easiest so that's pretty comforting. I won't go into details about that surgery yet. I will update after the cath and when we have a surgery date.
Physical therapy wise he's still in the semi walking stage. He is fully capable of walking but is just being a stubborn little billy goat (as I like to call him). Developmental therapy is very pleased with his expansive vocabulary and I swear he adds a new word everyday. He is currently at about just under 50 words and loves to talk your ear off. We are still waiting to hear back from our service coordinator about who will be our occupational therapist.
Ok, time has run out! Please keep us in your prayers these next few months, we will definitely need them!
