Saturday, January 23, 2010

I think this post should have been written and posted days ago. uh oh

I suck. I truly truly suck.
I kept opening up a new post, kept staring at it, then walk away to tend to Natalie (which can also mean that I was kicked off the computer by a certain ruthless 4 year old who is officially addicted to, and come back and close this up without saving, declaring that "no problemo..I'll just update first thing tomorrow". And well, you can sort of seeing where I'm going with this. Especially since my last update about Natalie was a whole week ago. And she's been home for 4 days. 4 whole days.

I'm sorry.

But I am not sorry that she's home. I love typing that. SHE.IS.HOME.
And doing fantastic.
Here is the lowdown of more things that "went down" since last weekend. I may be a little all over the place so I'm sorry in advance.

When I posted last Friday from home, I felt so out of sorts. I can't explain it that well, but all I can say is that is was wonderful to be with James, but my brain was so (overly?) consumed with how Natalie was doing in the hospital that I couldn't think. Plus, the huge of lack of sleep from the entire week didn't help. But, as always, she was in great hands with the nurse staff and with her daddy. So, after reminding myself of that, I slept like a rock.
On Saturday, James, me, and Grandpa headed back over to the hospital for me to "relieve" Ricky. He was up all night long playing guitar to keep Natalie calm and comfy and it worked. But he was exhausted. And the dark circles under Natalie's eyes proved her sleepiness also. I have to say, I've never seen such dark circles like that before. Poor kiddo. But James got to see her since Rick brought her down in the wagon. James kept kissing her and asking her if she was okay. Oh that sweet boy of mine.
After heading back up me and a clinical assistant gave Nat a nice bath. She taught me how to clean her wounds. Natalie was so good with this and understood afterwards how good it felt to be clean because she fell right to sleep. The rest of Saturday was spent trying to get this poor kid to poop. I know..I know here we go with the poop talk. Nurse Kate helped us out and she was actually one of our favorite nurses from the CICU so it was really cool to see her again. She was actually one to assist in removing Nat's chest tubes. Rick calls her "yoga butt". LOL She does have a yoga butt. LOL So, poor Nat ended up getting a suppository.

ugh. I felt like a horrible horrible mom.

So, to distract her I took her for a walk in the evening. And well..within in that walk let's just say things were pushed out. And this poor kid felt so.much.freakin.better afterwards. The chest x-rays were showing how bound up she was and boy did she let loose. LOL This relieved so much pressure from her chest and tummy. And we are proud to say, she's been very regular since then despite the continuation of using Oxycodone as pain management.

Sunday was alot of fun. After the initial crying of her Heparin shot which she declared was "too spicy" (it burns going into the vein..poor thing) Natalie was very very playful and you could tell she was feeling good. Once the initial drowsiness of the oxycodone would wear off, she was so happy and funny. I even got her to eat an entire plate of spaghetti. "Noonles" she'd say and noonles she got. And that's all she wanted to eat. Natalie also had her second "easy pap" test. This test was to help stretch out her lungs to their full capacity and get those blood vessels going to help maximize her oxygen and well, use of her lungs with the extra blood flow going to them now.

Monday was pretty cool too. She had a couple of pain-med/completely sleep deprived/pain-induced tantrums but I seemed to always find a way to get her calm within a few minutes. Once the staff had their afternoon meeting to talk about a possible Monday discharge for Natalie, the game really began. And sure enough, they couldn't give the 100% possibility of discharge since it was up to the surgeons, but they felt confident that Monday was the day.
It was so cool to hear that. And I could tell Natalie that she would probably be leaving soon. She seemed to understand because once Monday came, she played and played, barely spending any time at all in bed, and then once the official discharge paperwork was begun, she was SO.READY.TO.GO. Can you blame her?
And again, she was so so tired, so sore, and just so done with it all.
Oh I forgot, on Sunday we had another chest x-ray completed and that was sort of a tell-all of whether or not Ms.Natty would get to leave. And it showed that everything was right on track. The only issue still is that her diaphragm on one side is still up high due to the surgery. This is a normal occurrence and it should only take a month or two to heal on it's own. But it's causing no distress to Natalie or anything.
So, we left Monday evening! The paperwork really did seem to take forever- about 6 hours actually. ugh. But, ya know..we were so happy to be close to the front door to leave that we let them do what they needed to do and not complain. The nurses were so good with keeping us occupied and aware of what stage of discharge we were in that we couldn't complain. Plus, they called all of the medicine in to the Walgreens downstairs, gave us a lesson in oxygen use for at home, that we felt so prepared.
I have to say this again, nurses do not get enough recognition for what they do. They are amazing human beings and the compassion that they felt and showed with our family..and how good they were with a screaming Natalie..I really do think they should be valued more. I could never do their job. I'm not that strong.
One nurse on Thursday night chatted with me for over an hour about all sort of things (about why we moved to CO, about the job loss, job gain, etc etc) and she could tell that I couldn't sleep due to anxiety. That was the night that Natalie's blood pressure was acting goofy and she distracted me. I loved that. Her name was Laura.

We got home Monday evening and Natalie was so so calm and relaxed. You could tell without a shadow of a doubt that she was so relieved to be home. To be able to sleep in her own bed, see her own toys again, and most importantly, sleep next to her big brother. She slept through that whole night.

So as of now, Natalie is doing awesome. She is still on oxygen, but it's set at 1/2 liter so it's a very low dose that shouldn't last no more than a few more weeks or less. She's been fighting with us to keep the cannula in her nose and again, can you blame her? But, after explaining to her that it's her "fresh air medicine" she cries but let's us place it back. We don't have a large apartment but the tubing/cannula still manages to get stuck in spots when she feels well enough to get up and play. I hate that it's like a leash attached to a big blue box. But we are very lucky to have that "leash attached to a big blue box". It makes her stronger every day.

She has her more challenging days and her less challenging days and despite all of that, she still manages to crack a smile no matter what. She may get really cranky and throw her food, or sit and cry out of frustration because we need an extra second or two to pick her up correctly, but she gets it out and relaxes. And let me also say this, picking up a toddler by avoiding the underarms is HARD HARD HARD. In about 6 weeks from now when her sternum in pretty well healed we can go back to our regularly way of picking her up, but wow it's definitely tough.

She is a trooper though.

Thursday we took Natalie back to Denver Children's for a post-op checkup. This is her first out of two and I love how they have one within a few days of coming home to just be sure that everything is still going smoothly.
Both kids were so well-behaved and James had me laughing alot because he was very excited to see the glass elevators, the fish tanks, and the large ball rolling contraption complete with loop d' loops and bells (that every kid that goes into the lobby notices and watches).
Natalie's checkup consisted of checking her pulsox which was 95!!! an EKG which was perfect, exam, and chest x-ray and again, those were perfect. She even had her chest tube wound stitches taken out!! Her chest scar? looks amazing. It seriously, looks great. Some sections of the incisions only show her old scar. How the surgeon did that I don't know. And even the doctor we saw Thursday couldn't get over how great it looked.
All in all, that visit was very well and we were told to increase her lasix (water pill in liquid from to help prevent the build up of fluid) from 1.6 ML to 2 ML and keep at twice a day (Natalie wasn't peeing very much even at home) and that she can have a few times a day where the oxygen can come off (we chose mealtimes to make it easier for her to eat). She also said that we can wait 2-4 weeks for her next checkup since everything is great. How cool is that???

And you know what else is cool? to watch her oxygen saturations go UP when playing and being squirmy and not DOWN. That was the old way and now we have a new way. Natalie has a heart that is working and completely modified. If you ask me, her heart is not only special, but quite cool.

So, to end this long and late post I will also say this, after all is said and done and healed and all of that, Natalie will be left with only taking one baby aspirin a day. That is all. Again, quite cool and has us blown away.
We are almost out of the woods. Almost. We still have a few more weeks (about 5) approximately of watching closely to make sure no more fluid starts building back up again. After that window of time a HUGE SIGH of relief will be let out. We already have done that so that will be easy. And wonderful.
And I think I've bragged about this alot already but I need to get this on the blog but it was commented on Monday morning by the team of cardiologists that Natalie had 6 days of post-op in hospital recovery. The hospital record was originally 7 days. Natalie beat the hospital record (officially) by one whole day!!!
This kid never ceases to amaze us. And also? the "new" Denver Children's that we love so much opened on October 1,2007. That was the day of Natalie's Glenn heart surgery.
How is that for a good weird???


Anonymous said...

Beautiful post & slide show! Ricky staying up and playing the guitar for Natalie, and James's reaction to seeing Natalie after her hospital stay, was pretty emotional stuff. PP

Sarah said...

SO glad to hear everyting went well!! Natalie is one tough little lady. You were in my prayers daily. Love the video - brought tears to me eyes!

connie and adam said...

I love the video! :) She is so beautiful.