Friday, January 15, 2010


I'll keep this brief and to the point so I don't mess anything up. I'm so tired so I apologize in advance if my grammar and spelling suck. ;)
First, I have to start with this: Natalie is doing so so darn wonderful. This kid has endured SO MUCH poking, prodding, pain, and discomfort these past few days that I have always been in awe of her, but even more so now (if that was even possible).
So, here are some things that I'm going to list to keep everyone up to speed in bullet style:
**surgery began right at 7:30am but most of the beginning was with her being put to sleep with anesthesia and getting all of her major lines in and going well.
**the Fontan operation began around 10:30am Tuesday.. bypass machine was used for a while and she came off of the bypass machine quite smoothly (first try I believe)..some "oozing" occurred which required a transfusion, but with this type of operation that was definitely not out of the ordinary. Pretty much expected.
**At about 3pm everything was complete and we got to see Natalie shortly after (maybe about 3:30?)
**She was actually trying to wake up and cry with the breathing tube in her throat. That was pretty horrible but this is just the beginning of how tough and feisty this kid is.
**First attempt to take breathing tube out was put to a halt when she held her breath out of fear and anxiety. So it was put off for just a bit longer until the morphine kicked in again.
**Second attempt worked like a charm and at about 6:45pm that same day her breathing tube was out.
**All night long she stayed awake. This is where it got a bit more rough for her because as soon as she would close her eyes to (rightfully) doze off, she'd wake up immediately and cry.
**I left for about 7 hours to get some sleep in the Hospitality Suite (sleep room) and came back Wednesday morning at about 6:30am. Found out that she was up all night long quietly watching "Caillou" and didn't really cry. Not until I came into the room.
It was becoming apparent that my presence and not being to hold her upset her alot.
**Things kept moving along many different medications were used: Heparin (bloodthinner..which is usual for this type of surgery), morphine, tylenol, albumin for increasing heart pressure (giving her blood pressure and good kick start), and some others that I can't remember but nothing too major.
**Natalie kept dozing off and and on and the nurses and I (on Wednesday) came to the conclusion that being able to take out her catheter and one of her two arterial lines out (groin area), a spongebath and me holding her after with lots of help (of would do the trick.
**And it DID. She slept for a few hours in a deep sleep while I held her. And she smelled so yummy.
**Wednesday was a pretty good day for Natalie, pain-wise and spirit-wise. She wasn't eating still but was drinking lots of juice and that was great. It was noticed that after her urine turning such a dark red/brown color that her kidneys needed to have help pushing out all of the extra fluid in her system. And the lasix were begun (2 kinds that each worked differently in the kidneys to flush her system). And boy did that help. ALOT. Shortly after, her pee turned a nice clear color.
**Wednesday night/early morning Thursday one more line came out easily: arterial line in her wrist and then her drainage tube dressings were changed with very little crying for the big girl.
**Wednesday night was great.. she slept alot and if she did wake up she was so calm and strong.
**Thursday was full of ups and downs..we noticed that she wouldn't pee if her lasix were held off. So that was highlighted.
**The afternoon of Thursday was awesome. We got the news that her 3 drainage tubes were able to come out that evening and boy was that great news!! They wanted her to try and eat some fatty foods, such as french fries (which is what we ordered her) and make sure that no "milky colored" drainage came out. What that would indicate is a problem with her lymphatic system. Natalie did manage to eat 2 fries and lots of milk. And so, the tubes came OUT! And also? The last major line came out: her CVP (central venous pressure).
**Late that night the nurse noticed that Natalie's blood pressure began dipping again. Not a whole lot, but enough to cause a little concern. The problem is, being on all of the lasixs and not being well rested enough could have been doing that. But it was closely monitored and it seemed to subside on it's without anymore albumin. With the Fontan, this isn't normal, but it isn't unheard of. Unfortunately, there is no rhyme or reason when that happens, except that Natalie' heart was still trying to adjust, on it's own, to a new way of working.
**Natalie slept pretty well most of the night but everyone could tell how tired she still was. From the surgery, lack of eating solid foods, not being home, etc. we can all tell that it's starting to depress her.
So where are we as of now? Well, today she was moved to the 9th floor which is the last stop before GOING HOME. Yup, she is out of the CICU! and things are remaining stable. She is still getting some extra oxygen to build up some strength. As of this evening (7pm) the only thing she's had to eat are 5 tiny pieces of watermelon. But hey, it's better than nothing. I have to stress however, she is drinking ALOT and alot of that is milk. So, that's good. I'm home spending some QT with James while Rick takes over at the hospital so I haven't heard yet if the lasix have ended yet and if she's peeing on her own again. Gosh we hope she is. She's not swollen or puffy so I don't know. But, we're only 3 full days post-op so this is something that could just very well go away on it's own especially once she's up and about a little more tomorrow. Speaking of that- she did get to take a brief walk around the ward this afternoon. She did well and we think that after today she'll do more of that tomorrow and start moving towards getting home.
She also had an echocardiogram this afternoon and was asleep the WHOLE TIME. This was pretty awesome especially since this is a first for her. Poor sleepy kid. We did get 2 pictures of her Fontan in action and it's the coolest thing. As far as we've heard for the results, things are working great.
The last thing that Natalie is working on is getting some really good thorough coughs going to push out some mucus that has built up in her chest from the operation. Again, this is totally normal and expected and she had the same cough from her Bi-directional Glenn operation. So far, the mucus/guck, is moving up further and isn't in her chest but rather sitting in her throat. Again, more movement, more activity little by little? will move that out, will help her oxygen saturations move from the mid 70s to low 80s to a higher level and get her off of the additional oxygen. She needs time and strength and she will get there. As for eating, again, she hasn't yet but has been drinking alot. I'll be back to spend Saturday and Sunday (and Monday) with Natalie and so far, it's looking like Monday is the magical day of coming home. Let's please keep these prayers and great thoughts going because it's all working. Let's pray for more healing, less pain, continued great activity with her heart and heart pressure, more pee (on it's own) and a better appetite for Ms. Natalie. She's almost there and almost home. She rocks. =)

1 comment:

Katrina said...

Oh Dawn I'm so happy to hear this great news!! I'm still praying hard for a fast recovery. She certainly sounds like an amazing girl. It will be great to have her back home on Monday. :)