Saturday, February 7, 2015

Two more weeks!

Brynn's surgery has been postponed. We got through a difficult week of preparation and anticipation only to find out that we haven't quite gotten the green light from the surgical team.

Brynn did very well with appointments leading up to Friday. She enjoyed getting to meet the Child Life Specialist and although she didn't seem to quite understand why were at the hospital or what the lady was talking about, I like to think that the experience prepared her in some way for what was coming. They read Brynn a story about a camel who came to the hospital for surgery and showed Brynn pictures of the actual operating room and recovery. They showed her the playroom and library and gave her a quick tour of the floor where she will recover. Brynn loved getting to play with the stuffed camel and pretend to give it medicine and put on its tiny oxygen mask. She did seem anxious and didn't seem to really believe that she wouldn't have to see a doctor while she was there. We tried to give her as much power and control as we could throughout the appointment so that she could feel as in charge of the process as possible.

Tuesday was a little more stressful and upsetting for her. She did not want to be vulnerable and lie down on the table for her echo. It helped for me to climb up there with her and together we watched Tangled while they got the pictures they needed. It took some convincing but we were able to get her to lie still for the EKG. We met with Brynn's cardiologist, anesthesiology, and the cardiac cath nurse. Brynn allowed them to examine her and they grilled us with questions about her health and development. They let us postpone all the lab work and Xray so we were able to got home after lunch (but not soon enough to avoid a serious meltdown in the parking lot). 

Brynn struggled that night and early next morning with not being able to eat or drink or anything. She was grouchy and confused when we arrived at surgery center at 8am but knew the drill at this point and cooperated while they got her height, weight, blood pressure, O2 saturations, and temp. She started to get pretty agitated in the waiting room and was being sort of aggressive with the other kids but overall I was so blown away by her ability to keep it together. I was tired and and hungry and anxious (and I had had coffee and was sneaking sips of water and a granola bar) so I can only imagine how she was feeling. I am frequently in awe of her strength and bravery in these situations. I almost lost it when they came in and told us it would be another hour before they could take her back and I was probably pretty frosty towards the Child Life Specialist they sent into the room to try and help Brynn cope with more waiting. Child Life had Brynn decorate the mask they would use to administer the anesthesia and then allowed us to leave the room and get some fresh air. I took Brynn to see the train and play in the courtyard to kill time. By the time we got back they were ready for us and we headed back to pre-op. 

Once there Brynn really began to perk up. We had gone over and over what would happen next so she was very cooperative with changing into her "jammies" and swallowing the medicine that would help relax her and help with what they call "mask refusal". We got to meet the doctor who would be performing the cath, her nurse, the resident, and the same Child Life Specialist we had met in the waiting room. Brynn played with her dolls and loved that she could watch Frozen on the TV and control the volume. She was so content that she didn't want to leave when it was time to roll her down to the cath lab! Thankfully, the quick thinking and sympathetic doctor quickly paid $1.99 and downloaded "Let it Go" to her Iphone. She had it blasting the whole way with Brynn doing all the moves from her bed. It had to happen Brynn style! I literally felt just held up by a sense of security and positivity that I'm certain came from all the prayers and positive thoughts that have been coming our way. 

This last week has been difficult but all the prayers, text messages, emails, phone calls, meals, and encouraging words have made us feel so loved and supported. I feel like Tony and I are able to pass on all that support to Brynn and really nurture and care for her in those more difficult moments. 

The cath procedure took a couple of hours and they only found one large collateral (a blood vessel that grew to compensate for her her small heart size) that they had to coil off. Unfortunately, her pressures came back a little high and we were quickly informed by the surgical team that her surgery would be delayed until her case can be presented in front of the review committee and everyone can agree she is still a good candidate at this time. We were blown away and kind of reeling from the news but also relieved that Brynn was doing well. 

She had a long five or so hours after that where she had to lay flat and still on her bed to prevent bleeding where they inserted the cath in her neck and groin. We finished the day with an Xray and then headed to Grandma's for some rest and TLC. The next day Brynn was feeling pretty good. We baked cookies, had a campout in front of the fire, and tried to process and prepare for two more weeks of back to normal before the surgery. 

We thought we were in the clear until Brynn woke us up at 1:30am crying and shaking. I thought she was just scared or upset until later that morning when we realized she was in a lot of pain. She was whimpering and wouldn't let us pick her up. She kept saying her armpits and side hurt so we panicked and immediately thought she might have developed some sort of pleural effusion (fluid around the lungs). We called the cardiologist who fit us into to her morning clinic schedule so we could bypass the ER. She examined her and called the cath doctor who said it was probably inflammation and pain from the collateral she coiled off during the cath (which is apparently not uncommon to have). Well! That would have been nice to know! 

We are treating the pain with Tylenol and Ibuprofen and watching the low grade fever she has had on and off. She has terrible bruising on her neck and groin area but doesn't seem to be too sore in these spots. Changing the bandages and getting her into the tub and out of the PJ's she's had on for two days was painful and scary for her but once again her bravery and ability to bounce back rivals any adult's I've seen. We are so unbelievably proud of her and grateful for some extra time for her to heal.

I am truly blown away and amazed by the awesome hand of God who knows all things and knew that Brynn would need this extra time to heal and recover. We are grateful for every extra moment we have to snuggle and care for her before she has to go back. It has also given us a glimpse of what to expect and prepare for when we return.

In a bizarre twist of fate, February 6th will end up being an important day for our family anyway. My sister gave birth to beautiful healthy baby girl on Friday! Anna Constance Leitch we love you and are so glad you are in this world!

Thank you to everyone who has supported us and given us strength during this challenging time. Letters and cards are already coming in and we can't wait to share them with Brynn. We are so blessed and grateful.


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