That was scary.....

As many of you know, we went in to Phoenix Children’s Hospital for Ali’s cardiac catheterization procedure on Friday.  A cath is relatively risk free and it’s important to have done before heart surgery to make sure there are no surprises.  The procedure involves taking a thin flexible tube and inserting in through the groin and allowing it to travel through the heart.  The cardiologist is able to test blood o2 levels, measure pressures and get some decent pictures of the heart.  After the procedure there is usually some soreness which is treated with Tylenol. Piece of cake, right? …that’s what I thought too.

The cath procedure was actually flawless, we met with the cardiologist, Dr. Graziano beforehand and we felt really good about him.  He has 30 + years of experience and explained the procedure very well to us.  We met with the anesthesiologist before hand too and she was also a veteran doc.  The entire time Ali was in the care of some very gifted people.

One of the things that Mark and I always do when we meet new doctors and nurses is that we explain Alessandra’s personality.  She is very particular (which is a nice way of saying she’s a little cranky-pants).  We don’t let her cry at home.  She has trouble breathing if she cries too hard so we are at her service the moment she starts to fuss.  We know all the little tricks to calm her down and make her happy.  We have it down to a science because that’s the way it has to be with her.  If she wants to be rocked, then it has to be an upward and downward motion. Never side-to-side.  If she is rocked from side-to-side she is extremely offended and throws a fit.  If she’s hungry, we feed her.  No waiting, no sleeping through the night.  But like I said, we have it down to a science.  We know what to do to keep her happy and most days she won’t even cry at all.  Obviously, we can’t protect her from the doctors.  They need to poke at her and bug her.  I always feel better if I know that the doctors understand my baby.  I want them to know her personality because I feel like it should be an integral part of any plan.  Treat the person, not the symptoms, right?  She’s not just a baby with a heart anomaly, she’s Ali. She’s the boss.

I had to explain all of that about her personality because it’s an import part about understanding what happened the other night.

Before her cath she had to be put to sleep with anesthesia and was intubated.  After the procedure, which lasted about an hour.  She was extubated, carefully weaned off of the anesthesia and given Dexmedetomidine as a sedative to help her awake slowly.  This works fine for about 90% of the kiddos.  The moment the anesthesia started to wear off Ali was awake and fighting.  They doubled the dose of dex to calm her back down but it did nothing.  She was fighting to cry and scream, which made it difficult for her to breath.  Her o2 was dropping and her vitals reached a dangerous zone.  She was put on oxygen and we were called back to help calm her down. She had an oxygen tube in her nose, an iv line in her forehead.  Her eyes were puffy and her voice was raspy.  She was trying to scream but her throat was sore from the placement of the tube.  My initial instinct was that I wanted all the stuff off of her. I wanted the tubes out the iv out, I wanted hold her and rock her and calm her down. But that was way too risky.  It was a complete catch 22. She needed those things to monitor and help her, but those things were pissing her off and was the source of the problem.  She was so worked up that her o2 saturations dropped into the 30s which is a very dangerous level.  Some more docs were called in and she was given a dose of morphine.  Might as well have given her water. It did nothing at all.   The doctors were so perplexed and kept repeating that the morphine usually works.  They gave a 2^nd dose and to everyone’s astonishment (except for mine and Mark’s), it again had absolutely no effect.  I didn’t take a picture of her, I didn’t have to, I will never forget, but for those of you that are wondering this is what she looked like:

Finally they tried a sedative not normally used on babies because its more for anxiety in combination with some nitrous oxide and that worked well for her.  She fell asleep and started to stabilize.  Her sats still weren’t high enough so she needed a blood transfusion to help her out.  After the blood things quickly started to get better. She was weaned down to just Tylenol every couple hours and off the o2.

We were released the next morning and have been taking it easy at home ever since.  She’s not her normal self yet.  She still hasn’t smiled for me.  She has some extra fluid from the anesthesia and is coughing and sneezing a lot.  She was given a dose of Lasix at the hospital to help her release some of that fluid build up.  She’s not 100% yet, but she’s comfortable.  She’s eating well and sleeping a lot.  Her bruises are pretty gnarly and she has needle holes everywhere (that’s the downside to having a chubby baby, it’s too difficult to find her veins for iv placements), but she is home.

I really want to thank all of you for your support.  I know that we had a lot of people thinking about us and we felt the love when we needed it the most.  We had a lot of support and warm thoughts and I am so indebted to you all.

Ali before the procedure :)

Ali this morning :(

 

Much love,

~Melissa