Monday, April 19, 2010

Sleep Study

I love my husband! He is taking Joshua all by himself to UF tonight for his sleep study!!! I am so thankful he agreed to let me stay home and get caught up on laundry and housework! (Yes, both machines are running right now!)

They are repeating the sleep study since he is still obstructing at night.

Please pray for safe travel and for the test to be thorough and accurate!


Wednesday, April 14, 2010

Final Update for Today

We are home now. Josh is tired, we are all tired. It was a long day. I'm feeling a little down I suppose. It seems like we didn't get the best news today, but it wasn't bad either. It could be worse.

One thing I think I forgot to tell you is they did go into the PDA (his heart defect) and occlude it but the minute they occluded it, his pulmonary pressures shot up so they had to back out. His pulmonary pressures are the same as his overall blood pressure. It is supposed to be 2/3 less. Some parts are slightly elevated more than last year. I did not know they were going to do try this until right before he went back when we were speaking with the doctor. I think I'm glad I didn't know this before today.

The results of the PFT's yesterday (pulmonary function tests) were slightly worse than last year. I thought all the numbers going down was a good sign when I read the report without the doc. The numbers are supposed to go UP not down. (sigh)

His CPAP is not helping like it should. While his pulmonologist was there with us in the cath lab, she was able to witness exactly what's happening with him. He's still being obstructed, even with CPAP. I'm thankful she was able to see what was happening.

So... with that info, they have scheduled another sleep study to be done Monday night. The respiratory therapist just left the house after resetting his machine at the new higher level. We're also going to give him a little something to help him relax and sleep a little better. We'll see if this helps.

We also will be returning to UF in two weeks to see Dr. A (his cardiologist).

He is down today. I've only seen him like this 3 times since this diagnosis. Like I've said before, going to UF is always a picture of reality and the severity of this disease and today was rough.

He isn't allowed to remove the bandage (covering the right groin - the entry point for the cath) until tomorrow around 11am and it is driving him crazy!

Thank you for your support for Joshua and our family.

Hug each other and do something nice for someone else.

Joshua Update #2

We're just sitting here watching him sleep. He was able to eat lunch and use the bathroom (all while lying flat mind you), and he's back asleep now. He had to lay flat for 4 hours after the cath. We brought his CPAP machine so he could have it during surgery and recovery.

We had a planned visit with his pulmonologist while in recovery. I was so happy she was able to be here to witness for herself what he does while he sleeps. It looks like he's gasping for air, or choking, even while wearing the CPAP. So, she ordered a new sleep study to be done saying the CPAP is not set high enough for him and maybe that will help him want to wear it more. (He hasn't been good about wearing it every night.) We also have to have the medical supply company come out and adjust his machine.

So while we've been waiting here, we have already scheduled the sleep study (Monday night), and the respiratory therapist will be at the house tonight to adjust the machine.

We also have a follow up appt in two weeks with our regular cardiologist at the pulmonary hypertension clinic here at UF to discuss where we go from here.

Joshua Update

Dr. Joe just left. He told us Joshua did okay with the procedural sedation. They did not give him general anesthesia because he is too high risk.

He told us the pressures look the same as they did last year but he is going to get the numbers finalized and give to us later. It's not a bad thing. At least they aren't worse, right?

We will see his heart doc in two weeks to decide where to go from here. We may be adding another drug.

Joshua was upset before he went in because he didn't want to do this today or ever. He's a little tired of the whole thing actually.

We're very thankful for Dr. Joe and his patience and the time he spends with us answering our millions of questions.

Thank you for your prayers. Please continue to pray for Joshua and his ability to deal with all of this without losing his wonderful, peaceful personality and faith.

More to come.


Tuesday, April 13, 2010

Josh's PFT's

Joshua has finished doing his PFT tests and we're back at the hotel now.

Good news is he seems better this time and not so worn out!! A lot better actually. I wish I knew how to read the reports more and what all the little acronyms mean. We'll find out tomorrow when we meet with the pulmonologist.

They wouldn't let me go back with him this time. I hate that. I like to know exactly what is going on with him! While waiting in the waiting room, I was able to visit with some other people, of course. Surprised aren't you? Please be in prayer for Dennis and Mary. Dennis is an older gentleman with pulmonary hypertension and sarcoidosis. His first visit is tomorrow with the PFT's and then to meet the doctor to see if he's a transplant candidate. They were very sweet and I hope he will be able to get fantastic, healing treatment at UF!

So... we will be at the hospital first thing in the morning for the heart cath. Please keep Joshua in your prayers for no complications! I am also praying for good news and no progression!

I'll try to update as soon as I can.

Thank you for your prayers!!!!!

Sunday, April 11, 2010

Busy Week With Doctors

This week is a busy week for us. Tomorrow we see John's doctor to find out how he's doing with his shoulder. It's been a L O N G recovery process with lots of pain. I hope I never have to have shoulder surgery.

Also this week, we will be in Gainseville for Joshua's FULL PFT's (which wear him out)and his heart cath. We are hoping to hear good news or at least news that there is no progression. I'm curious to find out what his pulmonary pressures are for sure. The cath is the only way to know exactly.

Please keep them in your prayers. We do appreciate them immensely!

Consider yourselves hugged!

Saturday, April 3, 2010

History Fair

We just finished a six week project we've been working on for school. The kids were in a history fair last weekend with our homeschool group. It was called a wax museum really. They were to choose who they would like to be, from any time period, and then research, memorize a brief monologue, dress the part, have props and a backdrop. It was a lot of fun and turned out to be a great evening for everyone there. It was fun for me to get to make their costumes! I haven't sewn in a while so it was rather interesting to do it without a pattern! We had a box of hotel sheets in the garage my mom used to make curtains so it was the perfect costume and backdrop material... free! Thank God John was home to help with the backdrops! He has a much better eye than I do for art work! They also wore a button on them and when someone came to them, they pushed the button to "bring them to life."

Each child also made a donation box for "visitors" to drop change or bills in to raise money for Haiti Relief through World Vision. We raised over $500 as a group! It was very exciting!!!

Here are a few pics!

Alex making his backdrop:

Can you guess???

It makes me want to sing the song... "D a v y, D a v y C r o c k e t t, king of the wild frontier!!"

He loved having his Dad's REAL powder rifle and big knife! We didn't tell the other mom's it was a real gun!

Micayla chose...

At her Missions of Charity...

She did a great job "coming to life" each time. She said the only thing missing for her was the wrinkles!

Can't wait for next year!!!