by: Tina F., Aliana’s mom
Last Friday began as any other infusion day. We were running behind and Aliana had asked her best friend to join us. Becca is a great support for Aliana so after talking it over with her, we said yes. We stopped at Starbucks, her favorite place to go (she got $75 in gift cards from her birthday!!) before heading to Connecticut Children’s. They know us by name there, from the moment we walk through the front doors to admitting.
We’ve been to MS8 for the last few infusions, but this time we baked a basket full of fresh blueberry and strawberry muffins for the floor (we like to bring treats as our way of saying thanks.) Aliana got settled in as our nurse came in prepared to give her an IV. Sadly, it took 4 pokes (this is Aliana’s 18th infusion). Her veins are building up scar tissue, which makes it quite difficult. Needless to say, it was quite painful for Aliana and was awful to watch. But as always, her child life specialist, Kyle, was there for her. Over the past 1 ½ years they have built a pretty special bond.
That as a parent is what really matters to me, the relationships that have been built. The staff at Connecticut Children’s knows Aliana and how to help her. She just isn’t a face or skew number, she’s a person and they all know her likes and dislikes. After this, Aliana had an anxiety attack unlike anything I’ve ever seen. She was terrified and running around the floor saying she couldn’t breathe and that she was going to die. It was the first time we’d seen this.
The nurse called Dr. Bennett, who was there within minutes. He met her walking with the PCA, Stephanie, and asked if he could help. Aliana said she wanted to walk and so Dr. Bennett let the PCA continue to help her. As always, Dr. Bennett was wonderful. He hears her words and lets her work it through, which again, I value so much. Stephanie, who was truly amazing in helping Aliana that day, got her verbally back into a better place because yes, we were concerned about giving her medication to relieve the anxiety. Once she was in better place, her nurse, Krista, was able to run her IVIG.
Friday was an extra long day due to these events. As a parent, there is no worse feeling than not being able to make everything better for your child. Working where I work, I help kids on daily basis with issues like this, but when it came to Aliana, I was helpless. She was begging me to go home, pleading, and I had to say no. She did make it through and her favorite people all came back to check on her….Colleen, Kyle, Meg, Dr. Bennett… some even stayed to play a game.
These are the things that make Connecticut Children’s a great place. Even when you are heading home, they all make the effort to stop in and say goodbye. Going home always raises new worries in Aliana. She worries if she will have a reaction and if so, what will happen? Will she be ok? She’s been reassured time and time again with a soothing smile and calm gesture that yes, she will be ok 🙂
The staff on the floor is amazing. They know Aliana so well. If there is ever a time when we do have a new nurse, most times she’s been briefed to know that Aliana will ask her for her full educational background, how many years she’s been working at Connecticut Children’s and how many IV’s she’s done. Aliana feels safe there and that makes me more at ease. Although it can be quite difficult at times, I know they have it under control which makes it easier for me to take a step back and let these amazing people do what they do best!!!