Update on Alannah's operation

Hi all

Five years ago yesterday Tom and I got married. If you had asked us then the old famous interview question "Where do you see yourself in five years time?" , we would never have thought of the absolute nightmare that we all went through yesterday.

Alannah was first on the list for her operation yesterday. We brought her down to the theatre and kissed her good luck. We were nervous but happy that she was getting what she needed. At around noon our CNS told us that Alannah had been a bit unstable throughout the procedure. Her blood pressure was very low and her oxygen saturation levels were also low. Then she dropped the bombshell that upon return to ICU, they did an echo on her and it showed a clot in the shunt they had just put in. It would have to be redone. We were devastated.

We went in to see her in ICU and she looked terrible. Bruised and pale, hands down by her side (Alannah likes to have her hands up under her chin or on her chest). There were five nurses working around her frantically and everyone looked at one another with "that look" when they saw us. We left quite quickly as we felt we were in the way.

At around 2 o'clock she went down for a replacement shunt. At 5.30 the CNS told us all had gone very well and she had tolerated the procedure very well - we were so relieved. 30 mins later we were told that her sats had gone down again and they had to do another echo - another clot was detected. At this stage we were worried at how someone so small would be able to cope with another procedure. The team assured us that her heart has a mechanical problem, the rest of her is good and strong and healthy and they would do another procedure.

At 11:15 Alannah bravely went down for her 3rd operation. When she came back from theatre, her oxygen blood levels (sats) were in the 50's - the team had expected around 100 as this was a different type of shunt that would push the blood to the lungs with a brute force. One of her lungs had also partially collapsed. We were called at 2:15 to see her and it's fair to say that we just felt sheer despair and anger looking at her sats. What has our little girl done to deserve this? She looks so fragile but is so strong.

At 6:00 this morning her sats were between 75 and 85. The nurse looking after her was thrilled. At the moment - as far as we know (cos we took a quick trip to mums) - her sats are between 60 and 80. Alannah still has a long road ahead. Yesterday showed us just how unpredictable life in a hospital can be. I know I don't have to ask you to pray for her or think positive thoughts for her as you're doing so much already. We just have to wait and see how she recovers.

We bumped into her surgeon this morning and he is pleased and cautious. He told us he had never had to do 3 shunts on a baby but hastily added - there's always a first! I'm wondering at this stage if Alannah has developed an early crush on the man and that's why she's required these surgeries! ;-) He is a remarkable man. He carried out all of her procedures yesterday. The staff in the hospital are totally amazing and the care and dedication they are giving both us and Alannah is second to none. That being said, we are anxious to get out of this hospital and get back to normal life. We are taking one day at a time though and are staying in the hospital again tonight. Let's hope today is a good day.

Take care all

Thanks again

Love
Ev, Tom, Mikey and of course, Alannah xxx