Happiness is... coming home from the hospital

from the Charles M. Schulz book, Happiness is a Sad Song

Gracie is home from her heart catheterization. She was discharged at 4pm after having arrived at 5:30 this morning. Needless to say... a long day, but one that she tolerated really well (with the exception of the first two hours post anesthesia) and one that yielded mostly pretty darn good news. When we got home, right around 5pm, she was groggy, but that didn't stop her from immediately stripping down to her diaper! That's my girl!

- The cath lasted a bit longer than they'd anticipated. They found a small PDA (patent ductus arteriosus) that wasn't in the "normal" area to find a PDA (no surprise for Gracie), but that we were told had closed years ago and was never mentioned in previous open heart surgeries. It was definitely not closed today (though it was small) and they inserted a coil to close it off. It probably wasn't making too much of a difference, but they figured since they were already in there, they'd close it and minimize excess blood flow given the mitral regurgitation.

- The mitral regurgitation (MR) is, per her cardiologist, "more than moderate, less than severe... moderate plus." However it's defined, it is stable and even though it's not ideal, her heart is coping with the MR well and is not affected by the subaortic membrane that has formed again. (Sub-aortic membranes commonly form following certain heart repairs. Gracie had one removed in her 2006 open heart surgery and has since formed another.) Her left ventricle and atrium are quite enlarged, but pressures are within acceptable ranges. One thing they said with certainty about the valve is that when it's time for surgery, they will not make any further attempts to repair it... it will be replacement time. Since the pressures are good enough for now and she is not showing signs of heart failure, and since she'll have to be on coumadin for the rest of her life once the artificial valve is placed, they have no immediate plans to replace it. The longer we can wait, the better. Her cardiologist was happy with the findings... he had anticipated surgery to be soon. This is all good news.

- Her pacemaker leads are intact and the integrity is still good. There is scar tissue that surrounds them, which is normal, is likely interfering with the amount of "juice" that's being used by the generator. She will need more frequent generator replacements than initially anticipated when her pacemaker generator was first replaced in August 2008. This is disappointing, but as her doctor kindly pointed out today, it's much better to replace the generator more frequently (which is not open heart surgery), than it is to replace leads (which would involve full open heart surgery) and cause more scar tissue.

- The doctor also informed me that the vessels leading to her heart are fully functional, but not at all in the normal position. (This is not a fact that John nor I remember learning previously... but over time, I think it's possible that some things, if not causing an issue, start to fade from memory.) He also said that he can see where things (heart, lungs) are starting to shift and change shape due to her scoliosis... a fact that is not good (though not unexpected) and which he'll share in the report for her orthopedist.

- When she was admitted, I asked if they might draw all the labs her endocrinologist had ordered (a full work-up) while she was under. They all were very willing to comply. Gracie's blood, however, wasn't. Her hemoglobin was low (9.9 - - normal is 13-15) prior to the procedure. They drew half the blood needed for the labs and tested her again toward the end only to find that her levels were still too low. They did not want to end up having to transfuse (neither did I), so we will go to the lab in a month and have the rest drawn. Her potassium was also low, but she'd been fasting and since she gets most of her nutrition at night, that wasn't a surprise. The hemoglobin will need to be checked further, though. Hopefully, we just need to up her iron intake with a supplement.

In all a "good" day... for having anesthesia and spending it in the hospital.
She arrived in good spirits, though was a bit peeved when she realized that we weren't there for therapy. She quickly calmed, though, and undressed herself once I sat her on the bed, played with toys and was a trooper. She smiled a lot. That made me smile. Our nurse, Jason, was a superstar and got her IV in the one try I allotted him. (She had Versed ahead of time and he used a J-tip to numb the site. She did not even flinch when he got her IV in. Beautiful.)

Recovery was a bit rough for the first two hours. Okay... a lot rough. She had to lay flat on her back, perfectly still and with her right leg completely straight. Her right leg is never straight... so I spent two full hours bent over her bed holding her down while she spent two hours agitated from coming off the anesthesia (understandable), irritated due to discomfort - - even with Demoral (understandable) and generally peeved at me for holding her down (totally understandable). It wasn't fun for either of us. So, when they finally let her roll to her side, she relaxed, O2 sats shot to 100% room air, she even cracked a tiny smile and then slept for the better part of two hours. The rest of the time she spent quietly watching "Signing Time" DVDs on her portable player.

We spent a total of six hours in recovery, being discharged following a torturous final thirty minutes of IV, tape and lead removal. I worked with the nurse in an effort to minimize pain and time. She had leads all over her little body and now looks a bit like a red leopard... poor baby. When that was all over, I signed, "Time to go home and see Daddy & Preston!" She practically leapt into my arms!

For the first time ever, John and I weren't together with her during an anesthesia procedure. Preston has a cold (again...) and couldn't go to preschool today. We had incredibly kind offers from friends to watch him, but in the end we decided it was best that John stay with him. He was pretty stressed that Gracie and I were gone when he got up. That coupled with him not feeling well and torrential (scary) storms, we know we made the right decision. We are so grateful, though, for the offers from our friends as well as Nana and Papa (who were crazy, but so sweet, to even consider driving hundreds of miles in that weather!). You guys are the best!

As it turned out, I think I had my pre-op funk last week in order to prepare myself (unknowingly, of course) to cope alone today... and to find the strength to hold down my freakishly strong 25 pound daughter for two hours! (My back, abs, neck and arms are sore! Wah! Poor me! Jillian and Bob would be so ashamed!)

Gracie is currently hyper as can be and showing no signs of sleep. Nor is she showing any signs that she is sore from the procedure or from fighting me... tough cookie! Having not slept much last night, I am too tired to function and too tired to collect my thoughts and be brief! Sorry! Such a long post... all to say she's home and it went well... long, but well.

Thanks, everyone, for the heartfelt emails, calls and texts today. Your love, support and prayers were felt by us all.


*** Added 1/20/10 after initial post ***
Since little details about certain part of Gracie's anatomy (heart and everything else) seem to slip out of memory if they aren't part of the current "issues at hand," I am coming back to this post to add one more item to the list of findings yesterday.

- During the cath, they were unable to pass the pediatric probe through her esophagus to do a TEE (Transesophageal Echocardiogram). Once the anesthesiologist met resistance, he stopped. This has not been a problem in the past (though she's not had a TEE since 2006), so we will need to address with her ENT and find out if there is a new issue. Thankfully, in a conversation this morning with, Ally, one of Gracie's Speech Pathologists, I remembered this detail... as yesterday, I was too busy holding down Miss Gracie's legs to write anything down!