Thankfully, everyone in the house was able to remain flu- and strep-free thanks to Tamiflu, constant sanitizing and keeping MK restricted to her room for five straight days.
Now for the badish news. Conway's activity level has decreased a bit, he's not eating as much, his sleep is not as restful and his little neck vein was pulsating yesterday. Then last night he vomited out of the blue. We did a pacer check yesterday which looked fine, but we've been fooled by those before so Dr. Bromberg offered to meet us at the office this morning to check him himself and help us be reassured that he was not in atrial flutter. Good news is he is not. Bad news is that his liver is bigger and with the other changes, it indicates that he's not handling the changes we made at the last visit.
Due to this, we will go back to the Lasix twice a day. Part of me feels so defeated that we are moving backward in the recovery process, but then the other part of me is so relieved that this is not flutter and we don't have to reintroduce that nasty Amiodarone. It's amazing how quickly you can be thrust back into the reality of CHD. Dr. Bromberg said that we might have been a little ahead of ourselves because he really looked so good last time he saw him and he does think he's not as good now. Hopefully this is the change he needs to get back on the speedy recovery track. This isn't a life sentence to 2X/day lasix, we can still wean him down eventually. We'll just take it a little slower from here on out. He said to call him in a week to let him know if he's improved and if not, then he'll adjust his pacer settings to see if that helps.
Prayers are appreciated as always. Focus them on God using the increased diuretic to help Connie's heart failure symptoms improve so that he can bounce right back to the path he was on.
Monday, October 19, 2009
Despite our best efforts to stay well (not frequenting public or crowded places, good hand washing, pulling MK out of preschool, etc.) it seems that the dreaded swine flu has hit our home. Greg woke yesterday with a fever, cough and headache. He was ordered to be tested for flu but the test came back negative. Then about 5am Mookie started complaining about headache, cough, sore throat and had a low grade fever. She also had some 3 loose stools before 10am. She visited the pediatrician who swabbed her as well and her tests came back positive for BOTH the H1N1 flu and strep throat! Unbelievable. Her doctor said that if 10 people actually have the flu, only 6 will test positive on the rapid test, meaning Greg for sure has it too. His doctor confirmed this and prescribed Tamiflu immediately. MK is going on Tamiflu and an antibiotic for the strep. Connie and I are to start the preventative dose of Tamiflu since we are at a higher risk of complications from the flu (being a heart patient and me being pregnant). Connie's cardiologist ok'd it and also gave us a bit of good news. Last week he had blood drawn to check his BNP level, the one that measures heart failure. Remember this summer how he was in the 7000-8000 range (extremely elevated, meaning severe heart failure)? His number is now only 1800!!! That is much improved. While it is still elevated and we don't know exactly what it means in children, we do know it is a lot better than a couple of months ago so we'll take it. If the cardiologist were to check every complex chd kid in his office, he might find a similar number. We also know that his liver is a totally better size indicating no signs of heart failure! Now if we can just keep him from getting the flu... I asked the pediatrician about taking him to my parent's house or something and he said it was too late anyway. Just separate them the best we can and get him on the tamiflu. So, that's what we'll do. We'd appreciate some prayers for speedy recoveries for both Greg and Mookie and that the rest of us can avoid this plague!
Posted by Erin Beckemeier at 1:16 PM