Thursday, October 13, 2011

Hard Questions

Often I am asked by my medical staff if I have any questions. I usually have a million - but only two or three that can actually be answered in any concrete way.

Usually the answers to all the rest are:
"There is no way of knowing for certain just yet"
"It depends on how she reacts"
"we will have to wait and see"
"I don't know."

And I know exactly how they feel.

When people ask questions I genuinely do want to give them answers they can understand and hold on to but answers that won't mislead them. But the questions they ask are tricky!

Questions like:

"How is she?"

Yes, that is a hard question to answer. I can tell you how she is right this minute, right this SECOND, but it may not bear any resemblance to how she will be in five minutes time. She may be doing fantastically and have been doing brilliantly for days and then twenty minutes later she is navy blue, surrounded by the Medical Emergency Team and on her way down to ICU. She can turn on a dime.

"What, exactly, is wrong with her?"

Do you want the reader's digest abridged version or the Encyclopaedia Britannica version? Kaylee has a complex diagnosis which means she has LOTS of different things which all bounce off each other. Even her heart condition is a little different as only a minority of children with Tetralogy of Fallot heart condition need a shunt and only a minority of that minority require bypass and only a minority of that minority of THAT minority have the clotting complications that occurred with Kaylee. Of those children I have no idea how many of those children have Gastroesophageal reflux disease, a cleft palate and Cornelia De Lange Syndrome! I am guessing not many. So to paint a full picture of Kaylee's health issues is not a small task. And sometimes, at the end of the day, I am a little tired already. Some of Kaylee's diagnosis I am still wrapping my head around. I am an expert when it comes to Kaylee's daily care, I use my knowledge of child development and 7 years parenting experience every day, I am pretty good at advocating for her in terms of making sure that medical staff understand that she has a complex diagnosis and take all her various issues into account, but I still a learner when it comes to describing the medical side of things. While I understand in broad terms Kaylee's diagnosis, there are still some details I am a little fuzzy on. After 6 weeks of medical procedures, 3 hospitals, 4 wards, 2 states, 4 inter-hospital transfers, untold numbers of medical professionals and being separated from the rest of my kids there are days when my understanding is reduced to "Heart broken, doctors try and fix heart. Me make milk and sing.". And I am totally OK with that. I am coming to understand how the reflux interacts with the heart condition and the syndrome issues and cleft relate to her feeding issues etc. but getting to a point where I can explain this fully to others is taking some time. And of course, Kaylee being Kaylee, it all changes on almost a daily basis. So yes, it is a hard question!

"Is she gaining weight?"

Now you would think this would be an easy question to answer! But even within this there are hidden complexities and to give a complete picture usually requires more than a yes or no. While normally a healthy baby gaining weight is an indication all is well, when it comes to Kaylee it can mean (a) she is growing and will tolerate future surgeries better than if she wasn't growing (b) she is growing but her heart condition is still deteriorating and things do not look good or (c) her kidney function has been impaired and she is retaining fluid! I am hoping in future it means (a) and ONLY (a)!!

"Will she (walk, talk, learn, eat normally etc.)?"

There is one and only one answer to this question and that is "I don't know". Unfortunately, it doesn't make the question any easier. We will do everything we can to make sure that Kaylee has as full and rich a life as possible. She may have average intelligence with only a few traces left of her early physical trauma or she may not. We simply do not know. Sometimes the hardest questions aren't hard because of their complexity, they are hard because of their content and the Pandora's Box of emotion they evoke.

These are honest an loving questions which I honestly do not mind getting! But I do need people to understand that if it takes me a while to answer, it is because answering the questions of others is taking second place to doing my job of Wife to Jon and Mum to all six of my kids. I need people to understand that if my answers seem vague and incomplete, it is not because I resent them asking or because I am deliberately leaving them out of the loop, it is sometimes because the answers ARE vague and incomplete! I need people to understand that at this moment simply heart beat, oxygen and nutrition takes up the majority of our time with Kaylee. I need people to understand that chilling with my hubby, talking on the phone to my kids and hanging with my Kaylee take precedence over everything else right now.

And for the most part, people have understood that.

And I thank you for it!

In the mean time, I will keep on asking the hard questions and trying to find good answers for them. And I will spend each day loving my girl and being thankful for the privilege of having her in my life.


kate said...

Kaylee is lucky to have you as her mum! You are able to articulate difficult concepts so well - something that is an important skill for parenting in general - invaluable for such a time as this!!

Char said...

You have kept us all EXTREMELY well posted through this blog (amazingly - above and beyond what any of us expect - given all of your demands) I'm sure we have all felt a part of your journey through this... You have got all your priorities in place (your beautful family) and you are doing a fantastic job - the last thing you need is to have to worry about all us out here knowing and understanding every single detail, we are all cheering you on and praying through every step. So thank you for what and when you are able to share and we UNDERSTAND that nothing is in concrete - just GODS AMAZING LOVE AND SUSTAINING GRACE :) Lots of love and so VERY happy to hear the little lady is soldiering on after todays surgery PRAISE GOD!!! xxxx

Vanessa said...

Sending lots of love to you and your family. xxxx

Bek Ross said...

Thank you for making things clearer and sharing so much with us.