Marathon day

Another marathon day of doctor's appointments. Here's a quick run down:

St. Jude - blood counts are great. Hemoglobin 12.7, Platelets 154,000, and I don't remember her Hematocrit count...all I know is there was a "H" by it for High. We'll take that! All is well there except that her doctor went to Syria with his wife and two children last month and Homeland Security won't let him back in the U.S. So, a different doctor for awhile. Do they not realize this man is saving lives? Anyway, good report - I don't know when we have to return for a follow-up.

Dr. S (Cardiology) - wonderful report. She sounds great, looks great, and has gained a whoppin' 5 pounds since he saw her in August! We go back in 4 months for an Echo with hopes of being able to wean down some meds (and possibly her oxygen?!?)

Dr. F (Cardiac Surgeon) - good report. Possible hernia at one of her chest tube sites, but just something we'll keep an eye on. Labs next Monday and a quick stop by the office for a blood pressure and heart rate check! Otherwise, we'll keep contact via phone to reduce trips back and forth! Yippee!

On a side note...Olivia has mastered a couple of two-word phrases. She now can sign "more" and "all done," and has possibly been spotted signing "more please" along with patting her food and then signing "more." She's so polite. Just a little tidbit of information to brighten your evening.

For your listening pleasure...

So, I've decided to add music to the blog. I used to not enjoy it. I would go to a blog and all of a sudden it would start blaring at me. Lately, I've really liked it. Therefore, I thought I'd give it a go. I've had all these songs on a CD that I listen to whenever we are in the car and the kids are sleeping. I also listen to these on the morning and evening drives when Olivia is in the hospital. It's music that gets me through each day, especially the days that God decides to test me! And some random songs that I just happen to like. Enjoy!

The weekend in review...

We actually had a really fun, family-filled weekend. These seem to be few and far between for us lately, so it was a nice surprise!

We are in the process of getting a new vehicle. Zac has cut me off from the Mini. I distinctly remember our family Christmas letter from back in 2005. It read something like this: "I finally feel complete in my role as a mom. We purchased a minivan this year and I love it!"

The Mini is gone. You served us well and will be greatly missed, however, the new ride does have a DVD player and this is going to save my sanity on all of our trips to Peoria!!!

Oh, sorry. I do have a point to this story. The vehicle is located in Springfield, so we went down there to sign some papers. Then a stop at the Lincoln Library and Museum. We had never been before.

Zac and the kids with Lincoln and his fam (pretty life-like, huh?)

Jack - aka Honest Abe

Mary Todd Lincoln - couldn't you tell?

The kids loved it! I felt like such a great parent, giving the kids a great history lesson. Jack has always been fascinated with Abe and George Washington, so this was great for him. Olivia - not so much. She and Daddy spent a lot of time together wandering the exhibits. Still definitely worth the trip.

Then to cousin Emmy's 6th birthday party.

Pumpkin themed. Very festive with a menu of pumpkin soup, pumpkin chocolate chip muffins, pumpkin seeds, pumpkin pie, and a pumpkin shaped cake! The kids had a blast playing with their cousins and Awesome Uncle Bri!

Finally, home by 10:00 - all kids stayed asleep. Definite bonus.

Sunday - to church, yard work, cleaning of the house, boys to Frisbee Golf...fairly relaxing day.

Now, it seems like the rest of October is crazy busy. We wouldn't have it any other way!

Politics

***Warning*** If you are really into politics, you may want to skip this post, although it is kinda cute!

We were picking up Jack from school yesterday and started discussing what we would do when we got home. Jack pipes up from the back - let's take a vote just like we will be doing soon for a new president. I was impressed. I barely knew there was an election going on (see, I told you it might not be good to read this). Anyway, I thought I would continue on with the topic at hand...what else does he know about all this?

So, I ask the kids if they know who they would vote for.

Jack: I know. I know. But, I can't remember his name.
Mommy: Barack Obama or John McCain.
Jack: Barack Obama
Brooklyn: "Jim" McCain (apparently they are pretty tight - she has a nickname for him and everything)
Mommy: Do you know why you would vote for them to be our new president.
Jack: I would vote for Barack Obama because his first name starts with a "B" like Brooklyn and his other name starts with an "O" like Olivia.
Mommy: Well, that makes sense.
Brooklyn: I would vote for that other guy because I like candy.
Mommy: ???
Brooklyn: Those things at Christmas that are twisty are kinda like candy and I like candy.
Mommy: ???

After a few moments of silence, I finally get it. A candy "cane" - John Mc"Cain".

Mommy: That sounds like a good reason too, pumpkin.

How will I ever decide who to vote for? Hopefully this little debate helps if you were wavering between the two...

I've been thinking...

I know. That alone is a scary thought.

But, seriously. I've been thinking a lot lately. I've been in quite a funk the last few weeks. I've been trying to figure out what the problem is. Why can't I seem to keep things under control like "normal" people? Then, all of a sudden, it hit me. Our life is so unbelievably far from "normal." Way back when, right after Olivia was born, I distinctly remember our pastor coming over to talk to us about Olivia's baptism. One of his final questions to us was, "How is it going being the parents of a special needs child?" Our response at the time - What do you mean? She doesn't really have any "special" needs. She's just like the other kids. Just a typical old run of the mill baby.
Oh, how times have changed.
I've always liked the analogy of Emily Perl Kingsley's description of being the parent of a special needs child in "Welcome to Holland."

WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I, personally, can't relate to the part about always longing for Italy and the pain never going away. Quite frankly, I could really care less if all of our vacations were to Holland. Maybe that's partially because we'd already been to Italy twice. We've gained so much by getting to go to Holland. We haven't lost a thing by missing out on Italy. Regardless, those of you who have only been to Italy have no idea what your missing over here in Holland.

It's wonderful. Busy, but wonderful. And we wouldn't have wanted to go anywhere else.

I think the last few weeks have just been too crazy. Pneumonia. Aspiration. Leaky mediport. Completely severed mediport. Then, on Monday, the doctor calls and says the hospital here is not able to draw her weekly labs in the correct manner, so we have to have them drawn in Peoria. Medicine at 6, 9, 12, 3, 6, 9, 12. Is this milk thick enough? Is she still aspirating? Why did she just cough? Why does she still sound "wet" sometimes after she eats? Olivia's therapists call to set up appointments and they have to remind me that Brooklyn has preschool, so that time won't work out. Geez. I can't even remember that Brooklyn has school!

I needed to take a step back an put my focus back where it belongs. Then, last Sunday at church, Pastor referred to a familiar verse from the Bible. I grabbed my checkbook (first thing I found to write on) and wrote it down on the back.

"I can do everything through Him who gives me strength." Philippians 4:13

Brooklyn asked what I was doing. I said I just needed to write this verse down, because sometimes Mommy forgets. So, I'm back on track. We just happen to be going through a season of life where Olivia's special needs are fairly significant. So, yes, people. I don't always have things under control. I do lose it every once in a while. This time it's just been for an extended period of time without much of a break.

I love you loads punkin'...but could you just slow things down a bit?!?

CHOI plug

So we had the big calendar unveiling on Friday night. It was really, really nice. They started out with one of the pediatric surgeons speaking, a nice prayer from one of the chaplains (one who happens to be very fond of Olivia). He has been with us through at least two of her heart surgeries and he was our "go to" guy for Monday's surgery as well.

All the families were there and they showed each of the kids pictures up on the big screen. Each child was introduced and was able to go up and get a complimentary wall and pocket calendar! A very special "thanks" to Dr. T. and Tara! It meant tons to all of us that you were able to pop up!It's always great to see you outside of the 4th floor. All of the pictures are absolutely amazing. Anyway, here is a sneak peek of Olivia's cover shot. She is also on the inside cover and next page. If anyone would like a calendar, I'll post the contact information below. I don't know that they'll ship them, so if you would like, I can pick them up. I hear they are hard to come by, so if you do want me to order you one, why don't you post a comment or send me an email by Wednesday or so and I'll call over and see if I can get some more.

To order a calendar:

call 309-655-5753

Wall calendars are $15

Pocket calendars are $5

Happy 7th Birthday, Jack!

Wow, I can't believe we have a 7 year old. Jack had a great birthday today. He had some friends from school over for a baseball themed party and then the family came over and we celebrated with them. It was a huge day, but everyone seemed to have a great time! He got tons of Legos which are one of my favorite things to do with him. As Jack said..."Mom, we are going to have some fun tonight." We only got one thing put together, which leaves a lot more fun for later!

Happy Birthday, Buddy! We love you!

We're home...

Well, we're at Grandpa and Grandma's house.
Olivia's doing great. Recovery went well. She's happy to be eating again and is back to her smiley self! She'll probably be pretty sleepy for the next 24 hours while the anesthesia wears off. Thanks for thinking of us and saying those extra little prayers today!
She was quite popular down in surgery. The Child Life Specialist that organizes the CHOI calendar also works in ambulatory surgery. She had told everyone that Olivia was the cover girl and had to be looking her best for her performance this evening. Everyone was excited to have a celebrity in their presence! So, we plan on relaxing this afternoon and getting ready for the big night! Stay tuned...

Oh, the suspense...

It's out. Woohoo!! The doctor took his little catheter machine thing and threaded it through her vein right on up to grab the line out. We'll just hope she never needs another one of those. It seemed to be back luck for us. The anesthesiologist is now going to extubate (get her off the ventilator) and let her wake up a bit. None of this should interfere with us going home today. She may be in a bit more pain than she would have, so we have a prescription for a pain med just in case we need it. She always has to add some sort of excitement to everything, doesn't she?

"Can anything just be easy"

A direct quote from Dr. F. - the surgeon. No problems getting her on the ventilator. He was able to get in and went to remove the mediport only to realize that the tubing had severed from the actual mediport.
Okay. No problem. We'll just reach in and get it.
Too far down.
He called the people from Angio/Radiology and had their team come down and take a look. All the veins look open enough, so they are going in through her groin and trying to get it out that way. It could be 15 minutes. It could be 2 hours. He is very confident this will work and we can still be on our way later this afternoon.
Worse case scenario...doing an open procedure to remove it.
We'll keep you posted....:)

Surgery is underway!

She went in a little after 8:00. She was smiling and ready to go in with the nurse. They do have to intubate (put a breathing tube in) since they are working so close to her face. They would hate to suffocate her while they were working! I agreed. She did great coming off the ventilator when they put the mediport in, so we don't anticipate any problems. Should be a quick in and out deal. Then one of us gets to go into "Phase One" recovery with her (for about 45 minutes). Who do you think that will be! Once we get to "Phase Two," (for about 1 hour) we both get to be there and she can finally eat. She was starting to get a little cranky every time she saw her hospital bag - knowing that's where the goods are!

Once we are in recovery - "Phase Two" I'll let everyone know. I'd have Zac update during "Phase One," but he would have no clue where to even begin. Then we should be out the door!

Surgery today...

Surgery is scheduled for 8 am. Zac, Olivia, and I are leaving in a few minutes to head on in. We stayed at mom and dad's last night because we have to be there at 6. The procedure is supposed to take 30 minutes or so. Recovery - about an hour. If all goes well, we could be out of there by the lunch hour. We're taking the computer with us, so I'll update when it's over as long as I can get an internet connection there!
I was told it's a very simple procedure, so we're praying for the best!!!

Little Miss Grumpy

Unfortunately, I'm talking about myself. I feel like I've been such a Gloomy Gus in all of the recent posts, so I thought I should post something exciting!
Olivia officially learned to sign "more" today. We worked on it a lot during lunch today and she remembered by supper! It's more like the sign for "pain," but we aren't going to be to picky. She points her little fingers together and says a little "ta, ta" with it. She hasn't made any attempts to make an "m" sound yet. I think she's waiting for a really special moment to bust out a big old "mama"!
Anyway, she has been busy, busy, busy. She's all over the place. She's very speedy with her army crawl and has been trying to get up on all fours without any help. She really wants to pull up on things and climbs over almost anything. She does seem to be getting a little frustrated with her lack of mobility, but luckily her frustration is manageable - just a little fuss or grunt here and there.
I'm hoping to get some pictures posted on here from the Buddy Walk last weekend and just some updated photos. We're busy getting ready for a big 7th birthday party here on Saturday. (This had added to my grumpiness quite a bit, but we won't go there. I'll save that for another day)

Mediport Schmediport Revisited

Turns out Olivia's mediport has a leak. Go figure.
We went to visit the cardiac surgeon for a follow-up visit today. I mentioned the mediport issues and he thought we should go on up for a chest x-ray just to be on the safe side. And while we are up there, why not run through Angio and have them squirt some dye in there to check things out. 3.5 hours later, we go back to finish our appointment.
Another long day at the doctor's office...getting a little old.
Anyway, the mediport is obviously no use anymore, so they are taking it out on Friday. Since it was originally placed for chemo, Dr. F. checked with St. Jude to make sure that was okay from their standpoint to remove and not replace it. They said they were very optimistic that we would be okay without it. So, surgery on Friday. We are going to be praying like crazy that she doesn't pull out any of her old tricks and we can be out of there at a decent time. It's the "unveiling" of the Children's Hospital of Illinois calendar that night. We wouldn't want the cover girl to miss the big debut, would we?
The rest of the appointment went well. We got to drop another medication (we're down to one page on our medicine chart...yippee!) and decrease another. Her labs showed she was a little dehydrated, so he decreased the diuretic. Dehydrated because of her new diet, or just dehydrated? Who knows. But the good news is, Olivia is down to taking just one medication at midnight. That's got to put a little pressure on the doctor that orders that one. Seems as though we'll need to have a chat. I'm sure he doesn't want to be the one person responsible for my interrupted sleep!
Olivia handled the big day like the pro that she is. She was overly happy and overly excited to see everyone. That doesn't seem quite right, does it?

Good news, I think.

Olivia was able to tolerate all solids and anything that was as thick or thicker than pudding. Supposedly, this is a good thing. Her milk has to be thickened with rice cereal to the consistency of wallpaper paste. Gross. She hasn't seemed to mind so far, but she has to work pretty hard to get the milk out which has a tendency to make her a little testy. The only concern is keeping her hydrated enough so we'll have to watch for that.
So, we are home for the night. Then, back to Peoria tomorrow to be ready bright and early on Saturday for the Buddy Walk! Driving stinks!
Oh, sorry about the late post. Zac had taken the computer away from me again!

Mediport Schmediport

I thought this whole mediport thing was supposed to be a good thing? Don't get me wrong. It's come in handy when we are able to leave the hospital early and do IV meds and fluids through it. But when it doesn't work right, it is very, very frustrating.
The nurses accessed it at the hospital before we left. There was good blood return confirming that it was in and ready to go. By the time the Home Health nurse got to mom and dad's, it would flush great, but no blood return. Because she has been know to do this before, the nurse got the go ahead to start the fluids. No problem. We had an uneventful evening. This morning, however, her p.j.'s were starting to get wet just in the corner. Well, what could be causing that? Her mediport. I called Dr. T. He said go ahead an "de-access" her and have St. Jude take a look at that crazy thing.
I get that done and notice the swelling. This happened last time. The needle wasn't in her mediport, but was in her skin (or something like that). All the fluids...straight into her tissue. She's not as swollen as last time, so hopefully it hadn't been that way for long. Regardless, it's annoying. The little hole where the needle was leaks out little drops of water every once in a while. That's just weird.
Anyway, Mr. Mediport, we really like you...when you decide to work.
I'll update after the swallow study when I have access to a computer. Have a great, leak-free day!

Silence...

Not always a good thing?

Olivia had her swallow study today in Peoria. This was the follow-up to make sure she wasn't aspirating (inhaling the fluid into her lungs). She passed last time on honey-thick liquids, which she has been on since birth. This time, she failed miserably- silently aspirated everything that wasn't a solid food. Originally, they wanted to wait 45 minutes and try again to get a better look at how she handled the thicker fluids. While waiting, "they" (aka Dr. T.) decided it would be best to admit her for observation. Ugh.
So, we got a room down on Peds Intermediate for a couple of hours and then requested a meeting with good ol' Dr. T. about our inpatient status. We didn't quite understand what we were "observing." Olivia was having a great time, but we could observe that at home. Us, on the other hand, dread staying at the hospital for these unexpected stays. Luckily, Dr. T. agreed and said we could go stay at Grandpa and Grandma's and come back tomorrow for the repeat swallow study. So, we are on a strict solid food diet and IV fluids until after the swallow study. It's scheduled for 2:00, and hopefully it was just an "off day" and Olivia will pass with flying colors. Otherwise, further testing? Another attempt at keeping her? Who knows only time will tell. Until then, a huge thanks to Dr. T. for going to bat for us, yet again!
Here's to happy swallowing tomorrow!