MRI

Haven did great at MRI today!

We were very happy because Dr. Greenberg was her anesthesiologist - he's done a few of her surgeries and knows her very well. They were having a party in there telling jokes and even singing.....another great change to our baby!

Haven told the doctor that she takes a 1" needle in her port and that she would need the mask first but that she's wasn't little anymore so she didn't need to make it smell good. She took her jacket and shoes off and placed them at the foot of the bed. Informed the doctor that she had to be laying down before the meds were given - requested a blanket and off she went.

She came through without any breathing issues and was out of recovery in 30 minutes! Our quickest yet. Her throat was really sore from the tube being down it so as promised -she got to share a green milkshake from McD's with dad!

She did awesome!

Sleep Study

My baby girl waiting to go in to her sleep study room. She was already on the verge of cranky and it was past bedtime before they brought her in to wire her up.

Haven does not like change.....she gets upset if it's a different nurse in Oncology, she gets upset if blood isn't drawn the same way every time and she got very upset that a girl wasn't doing her sleep study. Then he made her get in the chair instead of letting her lay down while he put the wires on. She was not happy and I had to keep warning her to keep her comments to herself. She just really didn't want to do the study last night.


Here she is almost all wired up. They added a few new things to the study. The disc on her throat is for snoring - we've never had that before.



Here is my girl around 10:30pm. Took over an hour to wire her up and she was quick to get the dark circles around her eyes. When they start turning red I know we need to get to bed quick.


Here we are at 5:30am.....even after a sleep with wires she still tries to smile for the pictures.

I'm gonna guess this sleep study was worthless. The tech said it was very uneventful and dad said it was the best sleep she's had in months. So either I need to put wires on her every night or I have to continue to video tape her sleep to prove I'm not a crazy mom. Well I'm crazy but she's still sleeping walking and going crazy every night! The dog won't even go down the hall after she goes to bed because Haven freaks her out. Then the tech kept coming in every time she'd start to fall asleep or start snoring.

Anyway, even if she didn't do the sleep walking hopefully we know what her CO2 is at.

Tomorrow we will leave around 5:30am to head to Hopkins for her MRI. We let Haven have a desert tonight for doing TOO well at sleep study and because she can't eat tomorrow until around 2pm after MRI.

Any results we'll let every one know!

Cardiology

Spoke with Haven's Oncologist this morning - Cardiology report came back great. Miss Haven has a good heart and the chest looks perfect!

We're very happy for this news.


Haven will be in MRI tomorrow for the Ganglioneuroblastoma Tumor in her abdomen. This is our followup. Her last MRI was in November 2008.

The hospital called yesterday wanting to reserve a room for her for overnight recovery and to be monitored. I was able to convince them not to make her stay overnight even though they were really urging me to have her monitored. The more her file grows with ROHHAD and the breathing issues involved with ROHHAD the harder it will be to fight this request. I'm sure by our next MRI they will keep her.

Haven has had issues with 3 other MRIs and had to be intubated during and after the test - but it was not due to her ROHHAD syndrome.

Mostly likely Haven will be in recovery for about 1 1/2 hours on oxygen. Her oxygen is usually very low after an MRI so once it is up to at least 97% they will send her home. I'm guessing, from past MRIs, she will be at the hospital for about 5 to 6 hours.

Long time no post!!!!

Check out her cool socks! She wanted some so bad she stole mine!

Well it's been a few weeks, as my aunt has reminded me! But Haven has been sick off and on since having chemo a couple of weeks ago. For some reason this one hit her bad that even after 2 weeks she has still been throwing up or very exhausted. So far it's been 5 days of no sickness.

She has 3 toes that are infected. So Kris has been cleaning her toes every morning and night with peroxide and trying to get the infection out. She was on Amoxicillin for 10 days but the toes are still swollen. I have to contact the doctor tomorrow. Kris bought her one of those foot baths so we used that tonight. It really relaxed her.

We're still taking the medicine for the bone thrush in her mouth - trying to keep that from traveling down her throat. It can turn in to a yeast infection which is bad stuff. Now that she has had no immune system for a few months we can tell with how easy she can get infections.

Some very very good news finally - her last MRI showed the tumor on her spine has shrunk by .2 mm. I know it's not much but it hasn't grown!!! So we can celebrate a little.

The mass on her back is muscle. Just growing funky from steroids and the doctors are still unsure how that happened. Her back hurts her quite a bit so we keep her surrounded with pillows at night and she sleeps with her dad every night.

If she's not sick then I probably have a headache. Last week was horrible. I had a headache for 5 days straight. The medicine I was prescribed is no longer on the market and so far I'm unable to get anything prescribed. So I have been living on Percocet almost every night and I sleep on the couch. Since sleeping on the couch for the past 5 days I have had no headaches. I know it's weird...but so am I. My mom gave me a contoured pillow for my neck and it seems to be working.

Last flower

This last weekend we mowed the grass and pulled weeds. Haven helps by watering the flowers and telling me where I didn't mow yet. Being sick for so long I realized on Friday that I hadn't mowed the grass in over 6 weeks and the gardens hadn't even been touched! It looked like a jungle out there. Before the headaches I was religious about cutting the grass and watering flowers. So I yanked everything out...no flowers left and the grass is cut.

While pulling weeds Haven and I found a cute little Praying Mantis.

Then one of the days she got in to my purse and thought it was chapstick. I let her put it on and it was over an hour before she realized it wasn't chapstick. Kris and I had a hard time trying not to laugh!!

Haven and Elsie. She picked out a yellow Care Bear for Elsie. Yes she had to wear her bunny ears.

Helping with presents

Then this past Saturday Haven and I were invited to Elsie's birthday party. She turned one. Her mom is one of my friends at work. We went an hour early so she wouldn't be crowded around all the kids and people. Haven had a great time and didn't want to leave. But people were starting to arrive and I wanted to get her home.

Thursday evening we will be heading to Virginia to see Grandma and Grandpa for the weekend. Haven has big plans of tea parties and baking muffins and cakes. I'm sure she will have a blast. I'm looking forward to a short break from reality!

My brother is coming home sometime in September. Not sure how long but it will be good to see him before he's sent back to Iraq. My mom heads to Korea on September 1st for 3 months. My dad has plans of me painting his house and fixing it up. Lucky me. Haven and I will pretty much be living there those 3 months I'm sure.