As with every other day over the last couple of weeks, today has been an emotional roller coaster. It started with the wake up call from the blood lady (the lady who draws blood from Brea). Over the last couple of days this task has become progressively harder as Brea's little arms are an assortment of bruises and IV lines, making it hard to find a suitable vein to draw blood from. I found it very difficult today encouraging Brea and felt like I had nothing left to give. I had no words, all I could do was hold her hand, stroke her hair and place my face next to hers as they drew her blood (while she repeated over and over "it's not going to hurt").
When the nurse visited us a short while later, she had mixed news. The good news was that it was likely that Brea would be discharged today. The bad news was that they didn't get enough blood to test her INR (a measure of the thickness of the blood). This means they would have to draw more blood to know how to dose her warfarin in order to send us home. The repeat visit drained me of my already low reserves of encouragement. The nurses had to continually adjust the needle to make sure they collected enough blood.
More mixed news came later. The x-ray taken this morning looked great, but the INR level was below the range they want it in. The nurse told us that this meant we would be staying in another night. It would be an understatement to say that this news left us a little deflated. An hour later, the doctors came to tell us that we could actually go home (fortunately doctors overrule nurses), provided we come in on Monday to get more blood drawn to re-dose her warfarin.
Brea ended up getting discharged sometime between 3pm and 4pm (the time is a little hazy as we had accumulated so much stuff in the hospital room that we had to make a couple of trips). It was a strange feeling walking outside with all four of us at the same time. Since Brea went in for her surgery, there have only been a couple of times Bronwyn and I have left the hospital at the same time.
It was remarkable to see the difference in Brea solely from leaving the hospital. Before we left, she did not want to walk and was not talking near as much as she does at home. Within moments of getting back in the door here, she said "out of the stroller" and she walked over the sofa and climbed up on it.
Eleven days after the surgery it is amazing to see how battered and bruised Brea's body is. Her incision has healed remarkably in such a short time (as have her drainage holes). However, her thighs are completely wasted from the tape they used to hold the central and arterial lines in. As mentioned above, her arms are very bruised from numerous needles and IV lines. Her torso (aside from her incision) is covered in red marks and sticky residue from all of the monitoring equipment that they use in the hospital. She is definitely the bravest little girl I know.
It is probably no surprise that Bronwyn and I are both emotionally (and physically) exhausted. The clearest example of this was with visitors who would come to see Brea (we loved having you all and appreciate very much all of your kindness). I was so emotionally spent, I felt removed from reality and most of the time didn't know how to make conversation. In many ways, I think that Brea will recover from this surgery faster than her parents.
Once more, we just want to thank everyone who made this experience much easier than it could of been. This includes all of you who have been thinking and praying for us, as well as the many of you who have supplied us with meals, looked after Fleur, let us borrow toys/baby gear, or let us stay in your apartment. We will always be thankful for what you have given us.
Here are another couple of photos. One was taken last night of Brea and Fleur in Brea's bed. The second was taken tonight and is of Fleur helping Mum write emails on the ipad to let people know that we were out of hospital.