Wednesday, November 14, 2012

Synergis RSV

Just a note I learned. Cardiac (or high risk) babies should all get a monthly Synergis shot during high RSV season to fight off respiratory illnesses. Season is October to March. Ry had her shot yesterday and I can tell you babies don't like them. Apparently they burn! She was not a happy camper! I guess they only need them the first 6 months maybe 1st year of life. Since she's a summer baby, she fell into the high season and age range.

Monday, November 12, 2012

Sunday, November 11, 2012

Latest and Greatest- pre&post discharge

Ry is doing great. She slept almost 9 hours last night. Her incision spots where her cath was inserted look great. She's had no bleeding. She's on aspirin to keep the potential of clotting down. Her mood has been jovial. So proud of her. She's been fighting nap time. Maybe afraid if she falls asleep she will wake up in a strange place. We did have an echo done right before we were discharged and the results were mixed.

On Wednesday of last week we had a cardiology visit and they informed us her pulmonary branches were nearly closed due to stenosis and scarring where the conduit meets the branches. She was admitted Friday for a cath procedure. We were released yesterday. The results were good, the left branched opened a bit and looks good, the right side responded but not that well. On the scale of blood flow Ryleigh is a negative 2, which means her procedure was a good thing, but is a band aid, it was thought that it bought her another 6-12 months before another surgery, BUT her echo yesterday before discharge the cardiologist told us that her aorta was pressing on the right branch and its adding pressure further restricting blood flow. Her branches are small to begin with. So we see the cardiologist in 3 weeks if there is no improvement we've been prepped that her open heart could be sooner than expected and they won't do another cath. However, if she responds well in the next 3 weeks, they may try the balloon again. They will not stent because it will not grown with her and babies first year is a growth explosion. They have told us they will cut and patch the branches to expand them and replace conduit to suite the expansion.

So we will continue to monitor her until her next cardiology visit on the 28th of November hoping her branches opened a bit more or stayed the same post cath procedure. Will post an update when we have more news. This photo was of her getting ready to leave the hospital. She seemed very pleased! So were we!

Procedure Underway

They've started. We've been prepped on the good, bad, and ugly. Major concern now is that her suture line will hold and not tear. Good is she won't even need balloon and worst is she will be in open heart surgery today. Hoping for balloon and good results.

Cardiology Update

Ry had her cardiology visit today. Well I'm nursing a migraine again, but it only got worse when we got the results of Ry's echo, her cardiologist was not happy, her stenosis is near emergency levels, severe narrowing occurred since last appt. Her case is being presented tomorrow, they want her in surgery next week to address her stenosis, both pulmonary branches are nearly closed preventing adequate blood flood. I'm so sad, but I know they will get her all fixed up next week. She will be checked about every 2 weeks after cath surgery to see if the procedure worked, they will try this process twice, if it is not fixing it she will be scheduled for another open heart surgery to replace her pulmonary branches, which were small to start with. So I guess it's not the worst news but not the best. Hoping her balloon procedure(s) fix the issue for now.