Tuesday, January 31, 2006

Staph Update

Well, we had an awful night last night. Kennedy cried pretty much all night long. :( This morning her spot looked like this:


SO I took her in and they sliced it open, omg it was the most horrible thing I've ever seen. She screamed so hard. :(
*sigh* Anyway they cultured it and we have to go back in two days.

We're both exhausted now, but hopefully she has some relief.

I'll update again on Thursday.

Monday, January 30, 2006

Staph Infection!

OK so over the weekend the spots on Kennedy's belly got worse... they now look like this:


So today we went back to her peds office and saw a new doctor and guess what? She has a Staph infection! Which is what I've been saying since they started, but what do I know? GRR

Anyway, they put her on Bactrim and said if it's not better in 48 hours, Kennedy gets an all expense paid trip to the hospital for IV antibiotics.

SO please PRAY these spots go away by Wednesday morning!

PS. That's her finger in her belly button, lol, it's a form of comfort for her! ;o)

Tuesday, January 24, 2006

The Good, The Bad & The Ugly

Well we've been put through the ringer again! LOL What else is new? Kennedy was down with Bronchitis, and pink eye for the 3rd time since December. She went on antibiotics, and got better... or so I thought.

Then she had a hernia in her abdominal wall pop out, like this:


When I took her to her ped about the hernia, he was more concerned about her belly being distended again, like this:


and told me to take her to GI right away and then to the surgeon for the hernia.

The surgeon decided to do nothing about her hernia and then told me to give her a suppository EVERY day because she's constipated! WHAT? Sheesh. I left mad, almost in tears, and we will NEVER see that guy again!

So then I go to GI (without an appointment because they never returned my calls) and was told they couldn't see her until March. Right. So I get frustrated and cry (I hate it that I do that!) and finally Kenn's GI comes to see her. He ordered some bloodwork and an xray of her stomach and promised to call me that night. This was all on Friday.

ALSO, she started getting spots, like this:


And none of the doctors agree as to what they are. Staph infection, bug bites? Who knows? No one seems to care, even though they are causing her pain! One of them popped, it was not a pretty site, but she felt better after.

On Monday I called GI 3 times... left messages, no return calls. At this point I was ready to call the patient advocate... which brings us to today...

The good, the bad and the ugly.

The good... I signed up for a radio contest about a month ago for the free makeover. Well, I never heard them call my name so I forgot about it and went on. I got a call today that I qualified for a sweepstakes (that I had no idea they were doing) and I won a few prizes for qualifying, including the free makeover! THEN she told me that my name was chosen for the sweepstakes grand prize winner as well!!! I won $1,000 certificate to this salon that is already doing my free makeover, plus a $500 shopping spree to any Nashville mall, plus a year free at Jazzercize and a bunch of other stuff! How cool is that???

The bad... Kennedy started coughing bad again yesterday so I took her back to the doctor today and she has croup and stridor. Because of her vascular ring, the stridor is concerning so we're off to the cardiologist to make sure the ring is not tightening up. THEN I took Kassidy to the doctor because she had a high temp and was not feeling well... she has strep throat and pink eye. Fun! OH and when I was in the waiting room with Kass, Kennedy was playing with this little baby boy and they were having a good time. I did mention to his mom that Kennedy has croup and she said it was ok because he had a cough too. Ten minutes later the mom said "Oh yeah, we're here because he has RSV!!" HUH??? Ohhhh I took her away FAST! Sheesh. I hope her vaccine works well!

The ugly... One of the GI's from Vandy finally called me back today and said they are 99 percent sure that Kennedy has Celiac's Disease. This means a strict diet of no wheat, rye, and barley... They have to do an endoscopy to confirm, so back under anesthesia AGAIN. *sigh* If she does have it we'll be off to a nutritionist for menu ideas... for someone who rarely cooks, this is scary (or sad, or funny or something!)!

Keep Kass in your prayers that she feels better soon, and doesn't pass the strep onto the rest of us. Keep Kenn in your prayers that she doesn't need her Vascular ring repaired right now, we're trying to wait until Frank gets home. Also pray for her endoscopy... we don't know the date on that yet, and of course that her croup goes away. I think I'm just going to put her in a little bubble and keep her there until she's 25!

Tuesday, January 3, 2006

Orbital Varix

Well we started out the new year in the ER! Kassidy and Kennedy stayed up till midnight with me on New Year's Eve. Kameron tried but he clonked out at 11:00 lol. I put the kids to bed at 12:45 and stayed up to work on some things. Kenn woke up at 2am screaming! She was crying and would not open her eyes and her left eye was bulging out! It wouldn't open and her eye lids were all purple and it looked like there was a marble under her eye. It really freaked me out!

I called her new peds advice nurse and she told me to call her ophthamologist since she just had surgery a couple weeks ago so I called and they paged the doctor on call who spent quite a bit of time with me on the phone and said that it sounds like she may have burst some blood vessels in her eye but since Kennedy JUST finally fell back to sleep that we should just watch it and see what happens in the morning. WELL as long as she was laying on her left side, putting pressure on her eye, she slept ok.

Her eye doctor called me at some point the next morning and I told him what was going on and he told me to bring her into the ER at Vandy to be checked out and get a CT scan... he said that with her history of vascular abnormalities we can't take chances on anything.

SO she woke up a couple hours later screaming again... her eye looked a little less purple but it was still really swollen and puffy. I ended up having to take Kameron with me as well because HE woke up in the middle of the night screaming and once I got him in the light I saw he had double pink eye! I tried to get some of Kassidy's eye drops in him and I'm sad to say that my 4 year old is stronger than me! LOL So I checked him in at the ER too.

After NINE hours there, we knew that Kam had double pink eye (duh) and they did a CT scan on Kennedy, talked about doing an MRI, took her off all food and liquids for 3 hours, then changed their minds about the MRI @@. LOL SO they ended up saying they didn't know what was wrong and they were going to treat her for pink eye. Cuz that makes sense @@.

Kenn's eye doctor called me first thing this morning and wanted to see her. He said he would look at her CT results from the ER and talk to me about them, but he wanted to make sure that her vision was ok and everything...

SO we went in at 1:00 today, he checked her out, talked to me and said, "Well... I know I've said this before, but your daughter is an anomolie!" No kidding. LOL She has a cluster of vessels behind her eye that is not supposed to be there... where have I heard this before? It's called an Orbital Varix and is apparently very rare.

He said that this is not impairing her vision or causing her any pain, it's just... there. When she cries it puts pressure on her eye which causes it to bulgeand traps the blood in the eye lid making it turn purple and maybe even bursting blood vessels. As long as everything goes back to normal soon after she stops crying, there is nothing to worry about. To operate on this would be a danger to her vision so they aren't going to touch it.

I asked WHY this happened now, if it had anything to do with her eye surgery and he said no. He wasn't working in that part of her eye. He said this has always been there, and either it has moved or grown which is making it show up now. I asked if it has grown, what if it grows more? Is it going to get worse and worse over time? He said that's a possibility but we'll just hope that doesn't happen. Nice!

So then the head of the ophthamology dept came in, she was just doing rounds I guess. Asked why this baby was here today and her doctor gave her a look and said "This is KENNEDY!" And she said "OH Kennedy! Everyone knows about Kennedy here, you had us all worried about you, little girl!" SO then he tells her what is going on with her now and asks what she thinks. She mentioned some weird eye disease and her doc said well it seems like her eye would stay swollen then and the other doc agreed and then agreed about the orbital varix. She was shocked though because she hasn't seen one in a long time.

SO this marks vascular abnormality number 3. Guess I'll have to start keeping tally huh? At least it's nothing that is causing her pain and it's nothing that hindering her sight, so that's good!

So that's our first drama for 2006! Hopefully the rest of the year will be much more peaceful! LOL If you haven't seen the pictures in the archives go check them out! Also our family website has had a complete overhaul! Be sure to visit and see all the new pictures. :o)

Sunday, January 1, 2006

HAPPY NEW YEAR!!!

I can't believe 2006 is here! 2005 seemed to fly by so fast! We are praying this will be a better year, medically, for Kennedy. We finally got her pulled off post so she is starting the year out with a brand new pediatrician. Please pray that God will help him figure her out!
I will try to keep this site updated more often now, but you know how that goes!! If you missed the pictures of Kenn playing in the leaves, they should be in the archives, be sure to check them out! For now, here's my little drummer girl! ;)

This is my new drum...

You play it like this...

Are you watching carefully?

Rum Pum Pum Pum

Is everybody ready?!

ONE TWO THREE FOUR!!!!