Friday, May 15, 2009

The announcement I never wanted to make...

In late March, I posted about Caitlyns struggles with weight, and what was to come next. So, in the past few weeks we have had a floroscopic swallow study done, and met with the Nutritionist.

First the swallow study...In that post about her weight issues, I said we didn't expect anything more than an immature swallow to show up on test....Well, I was wrong. Caitlyn's feeding study showed silent micro aspiration caused by a delayed swallow. A break down: Silent-meaning there was no gagging or coughing to clear the liquids from where they didn't belong; micro aspiration-a small amount of liquid was going into her airway; delayed swallow-Caitlyn would pool her thin liquids in the back of her throat before swallowing, instead of swallowing more often...Then after the liquids pool, she would swallow causing the micro amount of liquid to go into her airway. So we went into that appointment not expecting anything...We came out with orders to thicken all liquids to a nectar consistency...

We continue to struggle from day to day with feeding...Dinner seems to be our biggest struggle...With dinner, we have 6 pills that Caitlyn has to take...Some nights it is such a fight that we both end up crying in the end...Eric and I have discussed a lot what options we have...The constant fighting and forcing of food has become a huge quality of life issues. So yesterday Caitlyn and I drove down to Children's hospital with our 3 day diet log to meet with the nutritionist. We talked about everything, and she looked at the diet. She said we were doing all the right things to add calories. That felt good to hear. It is nice to know you are doing what can be done...Yesterday Caitlyn weighed in at 40 1/2 lbs, and is 3 feet 11inches. This plotted her with a BMI of 2%. A child is said to be underweight with a BMI of 5% or less. It is of no surprise that Caitlyn is underweight...

So, after going through all of the pros and cons to all of the decisions, we have come to one...We didn't come by it lightly...It took a lot of discussion, but Eric and I have decided, with the support of the nutritionist and her Ped, that we are going to begin the process to have a G-tube placed. It is not for the convenience, it is for the sanity...It is for the peace of mind of knowing that she will get her meds ever night with out a fight...It is for those nights that she is exhausted after a day of seizures, and just doesn't want to eat...It is for next year and every year after when she gets sick...We will never again have to fight through drink after drink to keep her hydrated through illness...I'm scared and terrified and a little sad that this is the decision to be made...But am also hopeful for the future...

4 comments:

Becca said...

Hiya!

I got my g-tube this February. I have complex physical disabilities and support needs including being on the autistic spectrum.

It has improved my health beyond recognition - when I am having a bad time I literally can't wake up enough to safely swallow everything and being able to get my PA (Personal care Assistant) to give me a Fortisip milkshake and my meds down my tube has kept me out of hospital many many times. I was taking nearly 30 pills a day before I had my PEG and choking on almost every one.

I felt a bit rough the day of the surgery when I woke up (sore throat!) and a day or two afterwards... and it's all been 'plain sailing' ever since. Now I am properly hydrated and medicated everything's better, less UTIs, less headaches, less spots (!!), constipation much improved... do I sound like a PEG evangelist?! I promise I'm not on commission or anything.

Just wanted to let you guys know how much having a PEG has improved life for this young disabled woman, and I wish all the same to Caitlyn.

Incidentally I see Caitlyn's wishlist, did you know that you can download a free six-month trial of the Dynavox software to run on a laptop? Worth a shot!

All the best

Becca xx

Brandi and Andrew said...

I will be praying for you all. That's a very difficult decision and you are doing the right thing for her overall health. Will she still be able to have pleasure feedings? Keep us updated.

The MacDonald Family said...

I am so sorry that this is the decision you have had to make. You have tried everything and should be commended for your persistence. I can tell you from experience that this was the hardest thing we have ever done with our Annie but we have never once regretted our decision. Hugs!!

Brooklyn and Kelly said...

You know you are doing the right thing! But that does not make it any easier I am sure. No mom wants to ever make this decision but I know that I have never heard anyone say that they regretted the decision. HAng in there. Let us know when the surgery is, we will be praying!