The Foley's See Snow

Here are a few pictures of Ivee in the hospital. This is her taking a nap a few days after they externalized the shunt. You can see the tube on the right where the brain fluid leaked out. It is how we measure whether or not she needed a shunt.

Here is our princess after her shunt surgery. She always just sits right up and wants to watch tv and play. She is so tough!!

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Then two days after we got out of the hospital, Atmore got alot of snow. So we drove up there. The kids had never seen snow before. Here they are rolling a snow man with their cousins, Whitney and Haley, and with grandpa.

 

Ivee and daddy out in the snow!

 

Ivee and Haley found their way to a bit warmer place!

 

Finally, they had enough and wanted to just watch from the window! 

 

Ethan and grandpa competed again the 'itney's in a snowman contest. 

 

Then finally there were snowball fights. Mom and Ethan both took one in the kisser thanks to big sister! We still owe her one!!!

The neighbor let us use her sled!

 

This is my dad's cameilla bush. Just beautiful

Home Sweet Home!!!

Yes, we...all 5 of us...slept under the same roof last night! Ivee was soooo happy to be home! She stayed up itching a little while last night, but her big sister slept next to her on the floor and scratched her hands and feet for her for about an hour. Thank you to my Brittney for letting mom and dad go to sleep and taking care of her!!! Her incisions look good so far, so hopefully all will stay well!

Today is the day....

Okay, so she had an allergic reaction AGAIN last night and the only med she had is the vancomycin. So...ding, ding, ding....it's the drug I thought she was allergic too. So, even though the itching returned, she is doing better this morning, and it looks much, much better. The doc said he would suspend the medicine due for the rest of this day and night and she can go home. Whoo-hoot-hoot!!!! She is so ready to go. The doctors keep asking her if she is ready to go home, and she just ignores them. She ignores everyone. I think she doesn't believe anyone, so when we are actually walking out the front door, I think she will realize we mean it! Ready to have the whole family at home under one roof....and daddy is ready to not be at home alone. I think he wants it more than she does, just for different reasons. : )
We'll go back to neurosurgery next Wednesday to get the stitches out of her head. The ones on the inside of her tummy will dissolve on their own. Her stomach is the only thing she complains about, but once she has motrin she is fine. She is my toughie!!!
Thanks for praying and I'll keep you updated.

Three days to go

She had a descent night of sleep. The itching lasted only about 1 1/2 hours in the middle of the night. Hopefully that will end altogether soon. Her surgery went well and she really isn't complaining of pain. She does just kinda lay there though, so I'm going to ask for Motrin just in case she has some discomfort. We'll be going to a regular room on the floor today. Dr. Astrada from Infectious Disease wants her on antibiotics for a couple more days, so if all goes well we'll go home Thursday. We'll have to pay close attention to her for the next month. That is the critical time where infection could happen in the new shunt.
Thanks for your prayers for our baby's health and for our family. I would like for you to ad our health finance situation to you list as well. There was a drastic change recently that we are going to have to try to fight/appeal. This will probably be a strenuous and long process as well.
If anyone knows of any foundations that help to provide or assist with therapy visits let me know. Thanks!!
We are loved,
Emmett, Hope, Ivee, Ethan and Brittney

Surgery Day

She came out of surgery fine, and we are back in PICU. I'll update more tomorrow. Tired and going to bed! Thanks for praying.

Surgery Day

Excuse the first part of this blog. It was from my Facebook rant yesterday! Didn't want my blog to feel left out! :)

Facebook: Wow! After saying it for about a week now, a doctor finally listened to me. I think I know my childs body, and I told them she was having an allergic reaction to the meds. They just wouldn't quite listen. First it was just eczema (which I believe is part of it), then it was the medicine for her eczema just isn't strong enough so lets try two other tubes of creme, then it was contact dermititus (on just her hands and feet? when the rest of her is touching the sheets as well and they aren't broke out????)! Then Finally yesterda, after 4 nights of no sleep from the itching, let's bring the Infectious Disease doctor back in. OH! What's that!?!?! He agrees with mom?! It looks like an allergic reaction to the meds! So let's get an even stronger creme, and put her on prednizone! Let me tell you, before Ivee I was the mom who took her kids to the doctor after they were sick for like 2 weeks. Never saw a doctor as a kids unless something was punctured and needed stiches in the ER! Even with Ivee I am not overly sensitive to medical stuff. I believe viruses come and go and a doctors visit isn't necessary for everything (not to offend anyone, that is just me, so please don't be offended!) BUT, if I call for a doctor to come into the room it is because something is WRONG! I'm not being paranoid or a hypracondriac. (Sorry if my spelling is notrocious. Don't feel like doing spell check on the PC) Okay....done venting!

We clamped off her ventriculostomy this morning at 8:00 a.m. Surgery will be around 11:30 a.m. Praying it is on time this time, since clamping her off gives her a horrible headache. Unfortunately, Ivee's ventricles are so small we have to make them swell to be able to perform the surgery! thanks for prayers

One Week left?

I believe we will only have one week left in the hospital if all goes smoothly. Ivee's new shunt surgery will be on Monday, the 8th. Not sure of the time yet. Dr. Martino informed me that 4 hours before surgery they need to clamp off her shunt to enlarge her ventricles so he can perform the surgery. That means 4 hours of a pretty bad headache just getting worse. Not sure she'll be able to have anything other than Motrin to help with that. If surgery goes well, then I assume we'll be on the floor for no more than 2 days and we can go home. Ivee is trying to find ways to entertain herself and others. She feels much better since she slept off the headache yesterday. It completely wiped her out! Her eczema is increasingly getting worse. The stress makes it flare up, and the moisture under her tape on her hands and feet. She was itching like crazy last night. Benadryl helped some. So, right now we just need to find ways to entertain each other! Good thing she isn't a child who runs and climbs everywhere! 

I don't even care what day it is

Ivee slept pretty well last night, just tossing and turning some. This morning at 7 we clamped of her ventriculostomy. She complained with a huge headache until 9:30 when Dr. Martino decided to CT scan her to see if her ventricles were enlarged. They were is the only thing I've heard so far, though I am sure he will come up and talk to me after his surgeries. We opened her venc back up, and the pressure is off, so she is resting now. It must have been a pretty painful headache for her, but now we know. She will need a shunt. This is going to always be the case. So, I am content to deal with this. Not sure when she will have surgery to have a new one placed...if I had to place a guess, we are probably stuck her until Monday :( . This time the surgery will be a bit more delicate. He will have to try to cross her new shunt line past her port in her upper right shoulder/chest area. So it wll probably be a bit more involved and require a few more incisions.


thank you for your prayers. Continue to lift her up until this is all over.

Hospital stay...Is it really February?

Yeah....so this mom is ready to go home! Counting up to day 13 in the hospital. Not sure by what day Dr. Martino will be sure of what he needs to do or not do. Britt texted last night after a break down, Ethan had a break down last week, and Ivee is" over" the hospital as well.


We have lifted the ventriculostomy tube up more today.Still continuing to test her ventricles. She seems to be absorbing some of the csf, but she is still pushing a good bit out. She had some trouble sleeping last night cause her mouth has ulcers and yeast. Had to give her a pain med swab, which hurt itself and made her mouth bleed. Her poor lips are crusty and cracked. Her eczema is flaring up as well. She is sometimes complaining of ear pain, this is a side effect of the testing. She could possibly develop headaches, nausea and hydrocephalis as well). You know, we did all this about 16 months ago with the meningitis. We were in the PICU for 2 weeks at that time ending with the shunt surgery. It isn't easier the older she gets, in fact, it is a bit harder. She understands so much more. She easily gets upset with mommy cause she lets people touch her. If they don't wear gloves she does a bit better. The last time we were in the hospital it was after the scar tissue removal in the brain (which lead to the meningitis). She didn't have much of a vocabulary before that surgery. So, in the PICU, just a week after the surgery, she learned to speak really well. She learned to say, "No" and "All done." Well, this stay she has learned "Stop it" and "No ouchies."

On a lighter note, she has performed her lipsyncing skills here. 1st for the Senior Bowl Football players that came to visit, and then for her nurse Kelli. She has also busted out her groove skills. She looks really good for a little girl that's been through so much. She is my little sunshine...most of the time!

Thanks for praying and we'll keep you informed.

Shunt testing day 1

Today we pulled her tube up to begin testing her ventricles. We need to pray for her ventricles to work and for healing from any of the side effects of the testing (ear aches, headaches, vomiting). Hopefully we'll know the answers to this after a few days.