Fireworks will be seen out of our hospital window tonight in Phoenix but I know it will all be worth it down the road. I am posting since so many other posts helped me to prepare and understand what was coming with surgery.
My 14 year old son had surgery a few days ago on the 2nd with Dr. Nortrica. (We discovered PE just in April when we first jumped in the pool.....a growth spurt made it obvious) I did see a small indentation one year ago swimming but we dismissed it as his ribs we simply that way. He was HI of a 4.7 with pressure on the heart and slight displacement of the heart. Dr. Said his heart was only filling with blood after a beat 50%.
Everything happened so quickly. (But felt very slow)
The Dr. did an exceptional job along with his staff and all the nurses at Phoenix Children’s have been great!
-One parent in at a time. One must check out before the other checks in-Masks up Always!
-Phoenix Children’s puts on “Non blood clotting” massagers on the feet. (Velcro boot) They also put new device in his gown prior to surgery. It is a hose that blows warm air in during surgery to help surgery go smoothly keeping patient warm.
-Surgery was delayed by 1 1/2 hours pushing it to 3....but they updated us with a call at the start of surgery, middle point and end.
-Surgeon met with us pre-surgery and post surgery.
-It took a while (45 min-1 1/2) for my son to wake after all the meds.
-Cryo is when the Dr. freezes 5 nerves on Right side and 5 nerves on Left side while he is in there. He said about 5 minutes per nerve. It should last at least 4 months.
-Private room has private bathroom. There is a small bed and you can ask for sheets/blanket and pillows.
-My son did PT yesterday by walking to a chair 6 ft away and sitting for an hour. He also put his own underwear on, (per his request) and was able to go to the bathroom on his own if I took his gown off. (So he didn’t have to hold it up etc...)Today he walked a loop on the floor. He is very sore after he does this and sleeps a lot. Still heavily medicated. My son had to wear a mask when he did his loop....but in the room no.
-Valium is what helps with the pressure of the chest. It was what allowed him to have the most relief. He is still taking it when he can for that relief.
-We forgot to bring our heating pad. They requested one today for him and gave us one that is ours to take home. (Probably got charged for it?) But no worries since it is helping him.
-Meals are included for him. (You call and they bring them to the rm in 45 min)They are $6.50 for us including 6 items. Order all in case something isn’t great. He is eating well which is great!
-He has a device he has to suck air 10 times per hr when he is up. (Like a big straw) It helps expand his lungs and prevent pneumonia. Strengthens them.
-We will be here for the third night tonight. My husband comes for the night shift and I take the day shift. Huge positive since it can really be exhausting.
-Tomorrow his goal is to do stairs with PT and he needs to walk again tonight and tomorrow. Shower is not required but encouraged if he is ready before he can be released.
-OT goes over how to not strain arms when dressing, showering etc....
-On wheels pharmacy came yesterday to give us all our meds we need. With insurance all 7-8 bottles were $12. (Ibu profin, Motrin, oxy etc....) I got them since they are proper milligrams. That was convenient.
-Days leading up to it were the hardest. He had 2 bars put in but he is a small frame. Hoping he does well....as it will be sturdy. Dr. Says 85% of patients get 2 bars. He made the call when he was in there.
-We did buy an automatic twin bed to put down in our guest room downstairs. It will definitely help him be more independent and we can always resell it. We also bought a hand held shower attachment for $20 on amazon to attach to the tub so can shower more easily.
-Our follow up in two weeks was changed to a zoom call now due to Covid I believe.
Hope this helps someone!!!!
Happy 4th of July🇺🇸🇺🇸🇺🇸