Friday, September 28, 2012

Update to surgery

I am finally getting a chance to write an update to all the drama that has ensued over the last 24 hours........

First off, the actual procedure of Madi's surgery went really well.  It took about 35-40 minutes or so, which, of course, were the longest 35 minutes ever!!!  I was all set to take her back into the operating room and didn't think it was going to be too much of a big deal.  Well, I was mistaken!  Because we have a family history of an adverse reaction to anesthesia, they have to use different drugs and they can't use the gas to put her to sleep.  So, I watched them put an I.V. in her while she screamed bloody murder.  Poor baby girl!!!  When I walked in there with her, I immediately started hyperventilating and panicking.  I thought I was going to throw up.

But, the 35 minutes flew by and next thing you know the Dr. was coming out and ready to show us pictures of the whole thing.  The procedure went well.....the bad thing we learned, though, is that her airways into her lungs have NOT improved since March.  Her airways have 25-50% blockage.  They figured it was because of the aspirating she was doing.  They figured it would improve over time since we were thickening her liquids and preventing any more further damage.  But, since March, they looked exactly the same.  He doesn't think we need to do anything about it at this time, other than watch it.

Recovery room.......

Madi had a tough time coming out of anesthesia in the recovery room.  For some reason, she had an excessive amount of drainage of fluid and it made it hard for her to breathe.  She was literally choking and drowning on her own mucos as she was waking up.  You can imagine the panic she felt so she thrashed around alot and cried.  The crying made even more mucos, which amplied the situation.  The recovery nurse forewarned us that we would probably have to go to the PICU if it didn't improve.

They ended up giving her a drug to "dry" up the junk.  It did seem to help and after another hour or so, we were on our way to our room for the night.

Everything was going okay for awhile.  Madi drank a couple of ounces of milk.  We were even starting to get a couple of smiles out of her!  I went out of the room for a few minutes and when I came back, Madi's face and arms were lobster red.  The redness was starting to spread down to her legs and it was really hot to the touch.  She didn't have a fever but her skin was really hot.  I tried to give her some Motrin because she was in a lot of pain but I only got a little bit in her when she started choking.  It was like she couldn't catch her breathe.

Needless to say, we had a room full of people in a short amount of time trying to figure out what was going on with her.  She seemed to be having an allergic reaction to something......what we didn't know.  They gave her a hefty dose of Benadryl in her IV and then everyone just watched and waited.  Her color slowly started to return to normal over the course of the next couple of hours.  The problem then was the reaction her body was having to the Benadryl.  The medicine suppressed her respirations and she was struggling to breathe.  They had the PICU team come down and evaluate her on 2 different occasions.  Whenever the PICU team was in the room, she seemed to do okay.  As soon as they left, she desaturated and her respiration rate was dangerously low.  Thankfully the anesthesiologist and ENT doctor on call rallied for her and insisted that she be transfered down to the PICU.

It was about 11pm before we finally got settled in her new room in the PICU.  It was a long night, as Madi was in a lot of pain.  They determined that they couldn't give her any narcotics for the pain, she desaturated and respirations were very low when they tried that with Oxycontin in the recovery room.

It is now around noon the next day.  We are going to be transferred back to the regular floor but when, I don't know.  They are still waiting on a room.

Right now, we are alternating between Motrin and Tylenol for the pain.  We are struggling with getting the pain meds in her, though.  She refuses to swallow the stuff and she already has aspirated the Motrin twice now.  We are going to try the Tylenol Suppositories to help with that portion.  I guess they have a Motrin that they can give in an IV form but it significantly increases the chances of having bleeding and complications.  So, for now, they don't want to give it to her.

She hasn't ate anything yet.  Not even puree or applesauce.  But, she IS drinking milk from the bottle, which is GREAT!!

Thank you to all of you that have posted your thoughts and prayers to us on Facebook.  I definately think the prayers have worked, as Madi is on her way to getting better!! 

I think the plan is to stay here another night just to make sure she doesn't have any more allergic reactions and continues to drink. 

Wednesday, September 26, 2012

T/A and Supraglottoplasty Surgery

Tomorrow is a big day for Madi.  She is having surgery to have her tonsils and adenoids removed and to have a supraglottoplasty.

Madi's cheese ball smile she likes to give these days!

Back in March when she had a triple scope done, the ENT thought it would be best to have the procedures done to help open up the airways.  We are hoping that her sleep apnea will improve.....maybe she will even get off the oxygen!!

We are hoping the constant congestion that she has will improve.  I think we have had only a handful of months since she was born where her nose wasn't running and she can actually breathe out of her nose.  If she can breathe out of nose, then maybe her mouth closure will improve and her tongue will be more retracted.

We are also hoping that she won't be as sick as she was last winter.

I'm not as nervous about the actual procedure as I am about the recovery.  I know that the doctors perform these procedures each and every day and that it is not too big of a deal.  The recovery is another story.

When Taylor had her tonsils removed, she ate popsicles and ice cream for a week and then she was back to normal.  Madi........not so much.  First, she can't have popsicles nor ice cream due to the aspiration.  So what is she supposed to have?!?!

They won't allow her to drink out of the straw cup during the recovery......well, that's the only thong she CAN drink out of.  She will take the bottle but I don't think they want you to do that either.  We are going to attempt a sippy cup with the valve taken out, but that might be a little interesting.

She doesn't like water.  Actually, let me rephrase that, she doesn't like water that has been thickened with Simply Thick.  Which I don't blame's disgusting!  She doesn't like juice.......I have been trying for the last month to get her to drink it in preparation for the surgery.  Milk, milk, milk is her drink of choice!  I am hoping we can coax her to drink a shake of some sort but we shall see.

So, again.......I am a little nervous about the recovery.

In reality, though, what we are about to endure is nothing compared to what Madi's little friend Lily is going through.  She was just recently diagnosed with leukemia and started her first chemo treatment
today.  Madi and Lily are only 3 weeks apart in age.

Sweet Lily!  

Madi and Lily last year at Taylor's birthday party

Please send us prayers that Madi's surgery and recovery goes smooth.  And please send some extra prayers to Lily and her parents, as they are embarking on a journey that none of us want to go on.