Karrie's Journal

We are 4 weeks out from Justin’s surgery and overall things are going very well. Spent New Years Eve at ER due to irregular heart beat from not taking his metoprolol. I had to hold it from low BP when upper number was going below 100 and pulse was going high then low so I just needed to have him checked out! Got that straightened out but his test came back showing he is anemic. I’m not surprised but my concern is that they said his hemoglobin was 12 when he left the hospital and now it’s 9.6. They didn’t seem to think he had any bleeding going on due to signs and symptoms and other test results I guess.. he is very pale which has seemed to get worse not better.. ER Dr called the surgeon on call and said it’s pretty normal post surgery and he just needs to follow up with cardiologist , which isn’t for 2 weeks.. Echo and CTA result were good and he saw his surgeon for follow up earlier that day before ER visit. I have given him liver twice and he eats steak at least twice a week. Any experience with iron dropping AFTER surgery and suggestion to bring it up quick. I hate to give supplements yet his stomach has been bothering him and would like the Dr to advise which ones and dosage if needed.. They said if it drops to 7 they will need to do a transfusion. Kind of worried 😟

Justin is doing really well and we are at 8 Days post surgery! Only issue seems to be his Heart rate. He was sent home with BP meds Metoprolol 25mg (1/2 in am and 1/2 in pm) and once a day Lisinopril-5mg. His Bp has been too low twice and so I had to skip a few doses and call the Dr, nurse returned my call and said to stop lisinopril for now and Dr will call with further instructions in the morning ! I’m kind of freaked out, his pulse is erratic.. goes as low as 39 and up to 120’s while resting . Keeps going high and low but doesn’t stay there long! Hoping his heart is just trying to find it’s new normal. Someone mentioned there nurse calling it “chasing the pulse” but that was in the hospital right after surgery! I don’t know if will be able to sleep. Also I probably take his blood pressure too often, I’m getting on his nerves about now 😢 ANYONE EXPERIENCE SIMILAR.? I must clarify I’m reading his hr from his iPhone wAtch and not sure it’s accurate, headed to store for Pulse/OX reader. Last reading on watch just went to 185 😳

2 days until surgery and I kind of have Justin in isolation. I have been almost neurotic about avoiding illness in our household the last several weeks. We have carried on as usual , with the exception of constant reminders from me to wash your hands and disinfecting everything possible 😃 until today. I’m concerned mainly due to increase in illness and flu this time of year. I actually discussed moving his surgery until after flu season but his surgeon wasn’t concerned. Justin understands but he is frustrated and I do feel bad if I dont let him hang out with friends or family this weekend before his surgery! Any thoughts?

Has anyone had low blood pressure prior to surgery? Justin has always had low BP and pulse. Last Dr visit it was 108/ 68 Hr 60. We will discuss this with surgeon at next visit which is Nov 28 , just prior to surgery. I know it’s good over all for the valve, but concerned about surgery and if meds were needed for rhythm purposes. I don’t think he can take a beta or calcium channel blocker with bp that low. Surgeon just said last time low is good but wished it wasn’t quite that low and planning on using NO meds before or after surgery 😯

I knows it’s my son having surgery not me but due to his disability I carry the burden of making these decisions for him . Getting close to his surgery date and it feels like we’re about to sky diving and I don’t know if I can jump, or waiting in line for a roller coaster and when it’s your turn,, “I don’t wanna get on”. I don’t feel prepared. His doctor said he could wait a year and he’s astmptomatic, but waiting is stressful and our insurance deductible is met, just hoping we have made the right decision. Is second guessing everything pretty normal?