One of the coolest things about Natalie and having her as a daughter is how brave she is. There is never a day that goes by where I don't realize how much she's been through in her 2 1/2 years of living. She's been through more tests, more procedures, and more check-ups than I have in my 30 years of life. Her bravery beyond exceeds mine and I am so in love with that. She may hate the pokes, the tests, the "c'mon Natalie please take it easy" comments, but she always finds a way to calm down after being upset with the more unpleasant parts of her heart condition. She calms down quickly and you can tell that all is right is her world again, once the unpleasant stuff passes. Do we still think that she may have some anxiety issues due to her tough 2 1/2 years? I don't know.. but I think time will tell and once she has less and less constant doctor visits, she will feel so much more at ease.
Yesterday, we noticed that the surgical tape that was used on her neck (1 catheter was inserted there to take measurements) is causing her to break out and get a little red. So we've been using hydrocortisone cream and it's helped. But getting it on her isn't so easy. She doesn't want her neck touched and who can blame her? I'd be swatting hands away too if I had a needle that was there a few days before. It's a little bruised still but it's healing very well. Even the catheter that was used near her inner thigh (groin area) was done so well that she has had very little bruising.
All of last week is kind of a blur at this point. Between James' cough, fever, and as someone put it very well: had a case of the "slumpy", it worried Rick and I because this went on for almost a week and a half with no signs of letting up. So, I called the kids' pediatrician last Wednesday and got rejected in bringing them in.
"Natalie has a heart cath. tomorrow and her brother is sick..we need to know that she is well enough to get her test."
"We're double-booked with swine flu" he says, and tells me to take them to the ER. I was so livid. It takes alot to get me that angry, but I was. This doctors office has no idea (as far as I know) that Natalie even had a heart catheterization last week. Rick and I both told different people, since Natalie's doctor is always flooded with patients, so we're pretty sure no one communicated anything. That: is a huge sign to move on. So, I'm back to searching for a "more appropriate" pediatrician (I totally put that in the nicest way I could)..someone, who like our old MD doctor, actually cared with how Natalie was doing. I can't even get Natalie into the pediatrician's office right now to get anything other than her monthly synagis (RSV vaccine). Have to check her oxygen saturations? Nope, can't get in. That's not going to fly. And the doctor Natalie assigned to her right now is nice..but kind of has that "uh huh..yeah I know I know" attitude when we try to ask for advice. We walk out with no new advice. Just more confusion and the strong realization that her doctor must know everything but can't offer us anything new. Very very irritating.
We took the kids to the closest clinic (that has a great rating online for kids and families) and we loved it. A flu and strep swab were done and both kids tested negative. We were given the all-clear to take Natalie the following morning to her catheterization and that's what we did. (James is totally fine..either allergies or cold..we'll never know right now).
I have to also give "props" to James. He was SO well-behaved on Thursday and Friday while we took care of Natalie. He spent Thursday with his Aunt Donna and kept telling us how much fun he had. That evening, and once Rick got home from the hospital while I stayed with Natalie, James called me to tell me about the snow. OH the snow. lol
But this was taken on Saturday.. Thursday didn't stick but it sure did on Saturday. Thursday's snow was very heavy, though..and it was pretty scary with Rick's drive home from the hospital that evening. He made it home safely thank goodness.
So, I will backtrack with more photos..
Thursday morning was dark while we checked in Natalie:
We got her checked in at the front desk and waited to be called to get the fun paperwork stuff going:
(you know we slathered that wagon in hand sanitizer right?..okay, good)
We played and walked around a bit, took care of business..and then we were escorted by a hospital staff member to the 3rd floor and to the cath. lab. Once in, they began promptly getting our information and even had some "Wiggles" on the DVD player going ..so Natalie was happy. Well, not happy, but calm.
We spoke with Dr.D who was Natalie's cath. doctor (who, I even confessed this to Rick, was very very nice-looking). He was awesome though..sitting with us for a while and he made sure that we had no other questions before left. He didn't rush at all. Love that.
The nurses monitored Natalie for a bit and also gave her some anxiety meds (they actually give these to all kids) and it sort of makes them loopy, veeeery laid back, and sort of allows the events of what's going on to be forgotten (amnesia if you will). It took a bit for it to kick in, but wow, when they did Natalie was so funny. At one point I look out to the nurses desk and I see a familiar face. I mention this to Rick and say "hey, I think that's Natalie's heart surgeon!" (I totally Googled him once I found out who it would be) and sure enough, it was! He had his game face on and I didn't bother him. We would have loved to meet him but he was ready to head into a 5+ hour surgery with a teenage girl.
I hope that she's okay.
(the big number "88" is her oxygen saturation level.. 88 is good and then it climbed up to 90, then 92, then 97! and we declared that this was a miracle because hey! we haven't seen it that high in forever and then our dreams were crushed when we noticed the tag to the wire hanging off of her foot.)
The OR nurse asked Natalie if she could hold her (to take her back to the OR and get started) and Natalie calmed said "yes". We knew that she was not only being taken care of so well..but very loopy.
We were reminded to keep our strength and get some air, some coffee, food maybe and that's what we did. On our way to get something from the car we notice it's snowing!! (can ya tell? it was on and off snow and then got heavier throughout the day)
The heart cath. began promptly at 9:30am.
We bought her a new puppy (she has a few at home that are black and white but we forgot all of them):
(a puppy later named "She-ra" by Natalie herself..and She-ra apparently wanted my bagel also)
I have to also add that Natalie LOVES black and white dogs. Too funny.
Around 11am they called us to tell us that everything was going great and that nothing new was found. So far so good.
At about 12:3op (and after getting super nervous because so much time had passed) they call to tell us that yes, they found collateral veins around her mammary glands, 3 to be exact, and they were coiled. We kind of got teary-eyed and worried and a bit choked up while talking to the doctor on the phone, especially when hearing they needed her to stay overnight.
Dr.D was so awesome..he came out a few minutes later, explaining (with great detailed pictures/scans of the actual cath. procedure) what he did, what the outcome was, and why he had to coil those veins. Those veins? Grew at some point after her Glenn Shunt and these veins thought (if they have a conscience) that it would help her but they don't. Those 3 veins grew and were taking away much-needed bloodflow away from her body and were pesky. They were found around her mammary glands, so yeah, she didn't need those extra veins. Funny how the human body can do that. So, he coiled them off with platinum coils and this is what the outcome looks like:
See those 3 swirly spots? those are the coils. And they will be with her forever and as Dr.D puts it "adds to Natalie's street value even more". No, in all seriousness, these coils shouldn't ever interfere with her life and will actually make her Fontan surgery even easier for her.
The doctors are thrilled with how her two right side pumping chambers are doing nothing and that her left pumping chambers are picking up the slack (along with her lungs) beautifully. They rarely ever get such great pressures for someone pre-Fontan and as big as she is (size-wise). They were also thrilled with such even lung blood flow distribution:
Needless to say, they love her lungs just as much as we do.
They told us that we could technically wait until 4-6 months to have her Fontan operation completed but also, there is no reason to wait. So, we we are blessed to say that we are able to still stick with January..and the 12th of that month is "the" day. The 11th is for pre-op testing.
We got to see Natalie at 1pm, she grabbed her puppy, and also let us know how unhappy she was. I have to say..I almost lost it. I almost almost lost it. Seeing our kid laying there like that brought me down. But, I got back to it quickly and just kept focusing on how much better she's going to feel once the anesthesia wore off.
From 1pm to 5pm was pretty rough. Lots of screaming and who can blame her..she had to lay flat for that whole time. Nurses checking her constantly, people talking around her..ugh..I really admire that child. She did great, didn't even vomit like expected, and even ate a bunch of crackers and drank a ton of juice!
She stayed awake ALL THE WAY until 9:30pm that night but acted so silly once 8pm hit.
She was so playful..sore..but playful! We watched a few movies together and I cuddled in her big bed with her.. (so glad I didn't have her stay in a crib..she was terrified of those cribs and the nurses still tried to convince me to use one).
I stayed in that bed with her all night. Her and I both got "spotty" sleep, but I've never met anyone who sleeps well in a hospital. We got up at about 6am and seemed to feel pretty good.
Then once 7am she realized she was pretty sore still and we let the Tylenol kick in.
Rick arrived at about 9am and just in time for her chest x-ray (which was clear yay!)
We spent a few hours before being discharged admiring the view and playing around. Natalie was feeling better and better with each half hour that passed.
The nurse came in with our discharge papers, we got Natalie all dressed..
(she looks so drained..poor thing)
..the nurse took out Natalie's IV, and talked to us about Natalie's sparkly poop. We had to mention it first.
And as far as we know, they didn't see that diaper until after we left. That is just.too.funny.
We got home and wow was it nice. I gave Natalie a quick shower (no soaking bath was allowed for 48 hours), got the hospital smell off of us, and by 3pm we ALL laid down for a 3 hour nap.
Now THAT was a great way to end this post. (you can't ever go wrong with a nap).