7/18/2011 221 Days Old

On the 221st day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya had been awake twice during the night. She was in a fragile state of sleep all morning. Erin worked from home today. We call Carousel for a nurse visit. We were worried by Maya’s condition and the overnight hours did not ease our worries. Maya has been breathing really hard all day. She would wake up and try to cry. The look on her face was so heartbreaking as we watched her try to push out her biggest cry only to let out a small pitiful sigh. She would repeat this process with only a shallow breathe in between several times before she would settle down.

When Maya’s nurse got here we talked about her symptoms. Maya had a rapid heart rate and was still breathing heavy. All of the symptoms that Maya was expressing could be attributed to pulminary hypertension. All of the signs point to a increase in Maya’s hypertension. It is not clear if this is a bad stretch that Maya can bounce back from or if it is a struggle that will eventually over come her. The signs point to the later, but we have seen this strong little girl regroup and overcome many ailments.

With all of this information weighed we decided to give Maya a dose of lorazepam. Lorazepam is an anti-anxiety drug that Maya has had in her comfort kit since she was addmited to Carousel. Soon after the dose was given Maya calmed down. We thought that it would put her to sleep but it did not. Her eyes opened up and we got to see her baby blues again. She was happy. She played with her tongue and made cute noises. The decision to give her the drug was a good one. Her painful cries that would surface every few hours ceased. After a short playful time Maya fell into a deep and peaceful sleep.

This evening Grandma Kathy came by to see Maya. Maya had a better evening. She is still working hard to breathe and has a hard time relaxing, but her cries have returned to a normal change my diaper or hug me tighter variety. Maya even got to take a bath with Erin.  We will try another dose of Lorazepam before Maya goes to sleep. Maybe it will give Maya a restful night. It has been a long time since she slept through the night. We don’t know what tomorrow will bring. We do know that we will be here to help Maya in any way we can.

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