Saturday, February 6, 2010

Simple Surgery to the Experts - Not so Simple to the Mommy

Allie seems to be saying 'NOOOOOOO! I don't want to do it!" I can't blame her and if my picture was snapped right now... I think we'd look a whole lot alike (I'm just not as cute with it!).

Well, we are here again... the day before Allie will have 'minor' surgery. I dread it and I've known that as the day gets closer, I would get more nervous and that causes me to try to organize my thoughts as well as all that will need to be done that day and during recovery. I also try to remind myself that we went through Open Heart Surgery - this will be nothing. But, surgery is still just not something anyone wants to do. I'm very thankful it isn't serious and it isn't heart surgery. But, Allie is over 2 now and we all know what that means- she is independent and a bit stubborn when it comes to doing something she doesn't want to do (like take medicine, for example). Plus, she can now let us know when she doesn't feel good or something hurts with really pitiful expressions and cries. All you parents out there know how this feels - they hurt and we can't do anything to fix it as quick as they would like. Plus, at 2 - none of it makes any sense and all of it is scary.

Here are the details of how this surgery came to be. We started out with the plan to have her get her 4th set of Ear Tubes - which even we admit is minor and not a big deal. But, then we decided to have her Tear Ducts cleaned out (for lack of the official term) to eliminate the tear that often appears when Allie is perfectly happy and causes most everyone to tell us that poor Allie is upset - when, she really isn't. Not to mention, it is probably annoying to her and as of late, her eyes are often a big "goopy"and this could cause vision problems, too. With all of this said, this is a procedure I'm nervous about and said a lot of prayers about it. After talking to the doctor and finding out that he has not seen a change in her tear ducts over the past year and that given that scenario, he does not expect it to clear up on its own and they have found that the earlier this surgery is done, the higher the chance for success. So, we are doing it. (Note: They will not touch Allie's eye, just the tear duct which will be cleaned out with a balloon type instrument.)

Then, we discussed having Allie's adenoids out - if she has them (Note: Not all kids with DS have adenoids - many don't and those that do have them they are often enlarged). Since she is going to be under we figured why not do all of this at once. No one wants to plan to put her under again after all. Anyway, the adenoids, which we learned are next to the tonsils (in young children) and can often swell and cause problems for all children, but kids with smaller and unique facial structures - like those with Down syndrome - they can cause additional problems. Allie has had a rough couple months with very bad congestion issues. On average - once a night - she will be so congested and cough so much that she will get sick. Yes, you are right - poor baby!! So, removing the adenoids will give her more room in the back of the nose/throat area and hopefully reduce the congestion, plus allow her to sleep more soundly.

Then, while we talked about it with the ENT, we asked when and why would tonsils be removed. Which is normally not done at 2 years old unless there is evidence of Sleep Apnea - or more accurately - Obstructed Sleep Apnea (OSA) (which is also a very common thing with Down syndrome individuals- see all these "freebie" things we get with DS?). This is where things like Adenoids and Tonsils are in the way and cause a child to have OSA. In discussing OSA, we described Allie's sleep patterns and we all suspected she may have it - we have since watched her sleep more closely and confirmed our suspensions. So, the tonsils have to go, too. We are hoping this clears up her issues, but we are warned that sometimes doing all of these things don't fix the problems. Again, part of DS and nothing we can do but hope and pray that this fixes everything for her.

Because of the removal of the tonsils, the surgery is a bit more intensive. Recovery - for Allie - as the doctor put it - will be a bit harder. She will have to stay overnight for observation and has to stay out of school for a week. And, this may not solve the problem. But, as our wonderful and much trusted Pediatrician has told us - this would give Allie a chance to sleep better and be less congested by removing the adenoids, tonsils, and clearing out her ears and tear ducts. And, in his experience by around 4 or 5 years old, she will probably have had to have her tonsils out anyway. He did let us know that often, DS kids that have this done often report weight gain, which we would welcome for sure. Additionally, there is a chance that 3 years or so from now, we could still be putting Allie through sleep tests for true Sleep Apnea and/or allergy testing - if this doesn't clear up her issues. So, prayers that this will be successful are much requested.

On a separate note, Tim has had shoulder surgery last week to repair a 90% tear in his rotator cuff. We did not expect this tear to be as serious as it was and the surgery was much more painful than anticipated. But, now - 2 days later, he is doing better, but has his arm in a brace and will only be able to help with Allie in a limited capacity. So, I'm practicing my nursing skills - which are really quite poor - and anticipating a very busy and exhausting week taking care of poor little Allie and helping Tim if and when he needs it. Of course - we all know Amazing Allie does surprise us all the time. She may not have any issues and all this worry might have been for nothing.

Allie was a very good nurse as she is seen here putting the blanket back onto her Daddy.

I'll try to keep you posted as I can during the next week. Thank you in advance, for your prayers.

P.S. Please add little Cara Conn to your prayer list. We have met her and her family through our local support group, but then met again via a cute little boy, his mother and a conversation at a local store reconnected us. The little boy saw a similarity in Allie with is friend, Cara, who we quickly learned also had Down syndrome. We have since been in touch electronically and we all look forward to the day when both little girls are feeling better and can have a play date. Cara will be having heart surgery on February 18th.


Jenn said...

Lots of prayers for you!!!

Removals of tonsils and adenoids may be considered "minor" but the recovery sure isn't!

I feel for you guys, I really, really do. It was absolutely horrible for us and I only pray that it goes very, very well for you guys!

It is tough enough on a "typical" child who has somewhat of an understanding of what is going on and why they have boo-boo's, but it is completely different when our sweet angels don't understand.

Your sweet Allie is just like my sweet Addie - STUBBORN. God bless you guys and make sure you have the pharmacy flavor any Rx pain meds you get!


SavannaLea said...

I will definitely send some prayers up for the whole family... try to keep us posted as you can!!

Eric, Marilyn, and Elliott said...

We will miss your sunny face at school this week, Allie! Good luck!

Katie B. said...

We'll be thinking about you, Allie! I hope everything goes smoothly and you're back to your happy little self soon.