We got to go home today! Our stay for the Glenn surgery was shorter than we expected, at only 5 days. Our cardiologist had warned that we would be in for about 7 to 10 days but she blew that out of the water! She did great throughout her surgery and did not have a single complication. She did not require any oxygen and we were quickly able to restart our home feeding schedule.
The thing we had the most trouble with this time was pain. I think it was much harder now than when Addy was a newborn and didn't know the difference between pain and pain free. We experience issues getting the floor nurses to give her adequate pain medicine. After 3 days of her being on the same dose with no problems for some reason they are still afraid they are going to over medicate her and she is going to stop breathing. We experienced several bad pain episodes when they witheld her meds in which she then would start to scream uncontrollably and cry until meds could start working. She would turn a darker color of blue than I have ever seen out of our girl and that bothers me if it is not necessary.We have tried to space her Oxycodone to every 6 hours today but she is overly tired at this point and that seems to exacerbate it. She has slept since we got home at 2 o'clock today but I am hoping that after a solid 18 hours of sleep she will be almost back to herself tomorrow.
It seems that this stage has gone by in the blink of an eye. I am ready to get our girl all healed up so we can get back to our everyday routine and start being able to treat her like a "real" baby.
On another note, Heath and I have decided to start a foundation after our experience with Addy. The money and donations that are given will be used to support families that are going through the experience of having a child with congenital heart disease. For now, we will be local and mostly helping families in the Nashville area but we will help anyone that needs it if possible. We will accept donations of money, toys, blankets, and anything else that would be helpful to families during this time. Our help will be based on referrals from hospital personnel and by word of mouth and tailored exactly for what is most beneficial for each family. We feel like by our place in the hospital Our plan is to actually provide the support services ourself and not directly through the hospital. Although there is help available through the hospital for some families, as a working and middle class family, we found little support for what was still a very hard time emotionally and financially. Any donations will gladly be accepted as soon as we get our legal stuff taken care of.
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