tuesday 9/3/2013

Ava has been pretty sleepy lately. She has slept through my last 5 visits in a row. I spoke with cardiology today. THey are going to attempt to wean the nitric oxide that she is inhaling along with the oxygen. If she can tolerate the wean, great, she may only have needed it for the transition after heart surgery....if not they will bump the nitric back up to a tolerable level. Then she will get another echocardiogram. Then, likely a heart catheterizaton. This is an invasive heart procedure where they place a wire through the femoral artery in the thigh and go all the way up to the heart and measure the pressures inside the different chambers. This will help identify the specifics of the pulmonary hypertension and help the doctors decide exactly which meds she needs, because she cannot go home on the nitric oxide. I am not looking forward to this. I called the night nurse tonight and it seems Ava is sweating quite a bit more after the first step in the wean, which means she is not tolerating it very well. The nurse told me that she may get an echo as soon as tomorrow. 

When she lost her latest IV they switched her IV lasix to oral. By keeping the same dose but changing the route it was essentially weaned. The problem is that Ava is OnLy peeing with the lasix (it's a diuretic). The rest of the day her diaper is dry. They doubled the oral dose today.  I don't understand how she goes back to normal after this. I am told that she will likely go home with lasix. She will then have to get her blood drawn as often as weekly in Idaho Falls to monitor her electrolytes which can really be goofed up by the lasix. 

On other fronts: Boys had their first day of pre-kindergarten today. It is 3 hours a day 4 days a week.,It was absolutely effortless. The boys did awesome. Their behavior before and after school was excellent. I didn't notice any anxiety when dropping them off too. I told them bye and both said bye without even looking up from their paper. They gave their baby carseats to their teacher who is 6months pregnant with twins. She seemed very thankful. We were happy to be able to bless someone when we have been blessed by our friends over and over. 

Also my mom got a part time job at a charter school in Idaho Falls.  I am happy for her. I also will have to get creative again coordinating childcare so I can see Ava. The 3 hours of pre-k in the afternoon also makes my coordination times very "tight" to be able to maximize time with Ava..because it takes 20 minutes to get anywhere in salt lake. So by the time I drop off the boys and drive to the hospital, I have exactly 2 hours before having to get in the car and drive back. If I have to drop Ivy off anywhere, that would only leave me with only 1 hour with Ava.