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Saturday, August 13, 2011

Off the "beating" path

Where to begin? I was so relieved that yesterday was over because it was so busy and chaotic and hoped for a new day to begin on a better note. Little did I know it would be another test of my strength. I knew it would eventually happen but you can never be prepared. I did let myself get too comfortable with Brinley. I was so vigilant in the beginning that I let myself get to relaxed and expected nothing to happen and it did. Starting Thursday night she started having her O2 says drop into the 60s I was concerned but not overly, she has dropped before and always came back up. We check her when she is sleeping so they said it is not unusual for babies her age not to take deep enough breaths when they are sleeping and would should just disturb a lil to make her breathe deep. Over the next 12 hrs she slowly began to drop. Her color was dusky, labored breathing, sats in the 50s and heart rate near 200. We quickly raced to Cook's. I had been o. The phone most of the with our NP, who I can not speak highly enough of. When we arrived here she was still sat-ing in the 50s. There were 10 dr and nurses waiting for us when we arrived. They were all ready to get Brinley stable. They are amazing here. We were admitted on IV fluids and O2. She is doing very good right now. We started off at 1 ltr of O2 and reached 2.5 ltr but now she is being weened off of it all together. Since Brinley is BT shunt dependent she had to stay fully hydrated. I think over the last couple of days I think the heat really bothered her. She lost her appetite and was very lethargic. I knew something was wrong. Brinley' EKG, xray and bloodwork came out great. Her echo showed a smaller amount of blood flow through her pulmonary artery. The cardio said he was not too concerned by this because he could definitely see the blood flow. Eric and I are trying to figure out who is driving us home considering it is 3 am and we are both still awake. I am sure we will be doing half and half. We are hoping to be discharged tomorrow but they said only if they know for sure what was causing her drops.  I wouldn't expect anything less. I definitely have to thank everyone for being such a support for me. Most of you know I write as a away to have a means of expressing all these crazies feelings and stories I have. I have been to some dark places these past couple of months and it helps me to remember that when things start getting good to be so thankful. I know these crazy posts about Brinley will be come few and far between because soon we will be on the "other side" of all of this. I know deep in my heart that she is going to be fantastic after all of this. I want to be able to look back on all of this remember all the times I was scared and happy. This is one of those. I just want to share this with all my friends and family. I don't always talk about things and definitely tend to hold things in and this helps me. Thank you all for walking and sometimes carrying me down the beautiful and winding path. 

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