Today, was a big day. It has been 6 months since we got home from UVA. 6 months of recovery, growth and development. 6 months of emotional healing for all of us. Sydney looks so good! She is pink. O2 levels 95-96%. I hoped the appointment would show me what I believed to be true.
Sydney's pacemaker was checked by Metronic, and no changes needed to be made. She is doing great on the settings that were made at the last appointment. Because of the settings, Sydney is not using the pacemaker as much. Metronic said Sydney should be able to get 6 years out of the battery at this rate. Great news!!
Dr Falterman was excited about how much Sydney had grown. 33 1/2 pounds, almost 40inches tall, blood pressure good and Sydney pinkness! Her liver was still down, but soft at 2 inches....which is normal for her. She did notice Sydney's murmur was different then before. Dr F did a very detailed ECHO to see if she could find the source of the noise. There is a collateral vessel that has opened up attached to the Glenn (2nd surgery she had). It could have possibly opened up when Sydney was having Pulmonary Hypertension. This collateral is not hurting Syd at this time, or affecting her O2....so we will watch it. The good news is, should it need to be fixed, it can be done through catherization...not another open heart surgery.
Dr F plans to slowly change Sydney's medication. The Viagra will be taken down to 2x a day. We will try this for a month, and see if Syd's O2 sats are effected. If they are not, then Lasix will be removed next. One small baby step at a time. Sydney's body will need to take its own time getting used to the changes.
Well, this is all good news. The vessel development rattled me a bit (I could feel my heart sink), but all in all, she is great. Sydney has grown so much, that she never fell off the growth chart. She made up for the time being sick...in a matter of months. Sydney.....you amaze me!!
Thanks for checking in:) Also, thank you all for the ongoing love and support. So many of you have helped us in so many ways, and I cannot being to express my gratitude towards you all. I have always said, "it takes a village to raise a child,"....so thank you all for being in our village.
Love to you all, Christy
Sydney's pacemaker was checked by Metronic, and no changes needed to be made. She is doing great on the settings that were made at the last appointment. Because of the settings, Sydney is not using the pacemaker as much. Metronic said Sydney should be able to get 6 years out of the battery at this rate. Great news!!
Dr Falterman was excited about how much Sydney had grown. 33 1/2 pounds, almost 40inches tall, blood pressure good and Sydney pinkness! Her liver was still down, but soft at 2 inches....which is normal for her. She did notice Sydney's murmur was different then before. Dr F did a very detailed ECHO to see if she could find the source of the noise. There is a collateral vessel that has opened up attached to the Glenn (2nd surgery she had). It could have possibly opened up when Sydney was having Pulmonary Hypertension. This collateral is not hurting Syd at this time, or affecting her O2....so we will watch it. The good news is, should it need to be fixed, it can be done through catherization...not another open heart surgery.
Dr F plans to slowly change Sydney's medication. The Viagra will be taken down to 2x a day. We will try this for a month, and see if Syd's O2 sats are effected. If they are not, then Lasix will be removed next. One small baby step at a time. Sydney's body will need to take its own time getting used to the changes.
Well, this is all good news. The vessel development rattled me a bit (I could feel my heart sink), but all in all, she is great. Sydney has grown so much, that she never fell off the growth chart. She made up for the time being sick...in a matter of months. Sydney.....you amaze me!!
Thanks for checking in:) Also, thank you all for the ongoing love and support. So many of you have helped us in so many ways, and I cannot being to express my gratitude towards you all. I have always said, "it takes a village to raise a child,"....so thank you all for being in our village.
Love to you all, Christy
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