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!

Wild Weekend.

We had a super, crazy, busy weekend. It started Friday night with my grandma's b'day. The girls and I headed on over to Dunlap to celebrate, while the boys stayed back for Jack's soccer game on Saturday.

Saturday morning - to Bishop Hill to partake in their fall festival. We try to go every year because the kids think it's so much fun. We eat in the park and then do all the fun activities like making Corn Husk dolls, making your own brick, making your own popcorn, and many others. Then, of course, a trip to the candy store to stock up on Swedish Fish and German Raspberries!
Brooklyn with her Corn Husk doll.
Making popcorn...

Next on the agenda...a trip to Washington to my cousin's for an Oktoberfest celebration. It was a great time for the few minutes we were able to enjoy it. Olivia wasn't cooperating at all and we left rather early - it had been a big day for her.

TOUCH activities

I wish these two weren't so small. I got them from an email. The one above is actually not a bad shot of all the cousins - a rare find. Tyler, Olivia, Jack, Alais, Brooklyn, and Emmy!Emmy and Brooklyn with their balloon creations.
Sunday - to the T.O.U.C.H. picnic. We look forward to this every year. It's a celebration put on by The Organization for Understanding Children's Hearts. We get to see old roommates, doctors, nurses, etc... and the kids have a blast. There are tons of activities for them to do, a nice lunch, and train rides! It's great to see all the heart kids and see how well everyone is doing when you know they were so sick at one point.
I just thought Olivia was looking super cute today.

Finally - home! At least until our next big weekend...

Kiddo update.

I seriously feel as though I need to dedicate the entire day to blogging. I'm a little behind. I had to go through my pictures from the week to even remember what's been going on. I'll try to hit the highlights...
Jack's biggest news...Do you hear wedding bells? I got a call from a friend asking if I wanted to hear the latest first grade gossip. Now, understand that she doesn't even have a first grader, so this must be good. Apparently, Jack is getting married! Ugh. She just wanted to assure me that the bride-to-be comes from a really great family and that we should get along great. Gee, thanks. Good to know. Anyway, after talking with Jack about the big day, he denied it, of course. I stressed that there would be no vows being exchanged at school unless I received an invitation. I've been watching the mail. Nothing yet. Whew!
Brooklyn - no wedding plans, yet. She's loving school and has made three really good friends. She always looks beautiful and will make sure everyone agrees. It is absolutely hilarious, yet mind-boggling. I don't understand who and where she came from and it definitely makes me fear for the future.
Olivia - doing awesome! Her "cold" is officially gone. She is still getting really good at doing "two-year-old things." She's even been getting into trouble lately. I very sternly said "No, no!" to her the other day. She turned around, looked at me with a huge smile, and then started clapping. Not quite the reaction I had hoped for. Brooklyn immediately said, "Olivia, you are in trouble, but we still love you anyway, right, mommy?"
Olivia is going in for a repeat swallow study in Peoria on Wednesday afternoon. Apparently her symptoms from the pneumonia a couple of weeks ago were textbook for aspiration pneumonia, so we are going to try to rule that out.
I guess that's about it for an update on the kids! We had a huge, busy weekend that needs a post all of it's own, so stay tuned for that.

Pokey appointment...literally.

Livvy went to see the cardiac surgeon for an appointment today. We were to see him at 10:00 with labs before hand, so we arrived at 9:15. Labs were drawn, breakfast was eaten and we were in the office waiting room by 10:00!
Wait, wait, wait.
We waited for the lab results to come back, so we could discuss weaning some medications. Finally at about 11:15, the results were in! She had a great check-up. She was excited to see everyone. The doc was looking for one last lab result, which was no where to be found.
They didn't draw it.
Ugh.
Back to the lab.
During the lab draw, Olivia decided to stop bleeding. Should we poke again? Should we see if the lab will run the test without the full amount of blood? She's already been stuck twice, so we'll wait.
Wait, wait, wait.
Another hour passes and we get the approval that the lab was able to run the test and we were free to go.
All in all a great appointment, just a little pokey.

My life in a nutshell.

The other day when I was experimenting on the blog, I decided to throw some "ads" on it. Apparently you are able to sign up to advertise and the blog will automatically take subjects from your postings and generate ads that have to do with things going on in your life. I've only noticed a couple of them at the very bottom of the blog. The first one - an ad about bone marrow transplants and the second, ads about pneumonia and asthma. Sure makes me feel like we have a really upbeat blog.
Anyway, Olivia is doing awesome. I have literally never seen her so happy. She's been giggling and is actually doing some very "two-year old things." I think she's going to have a bit of an ornery streak. The countdown is on - only 24 more hours of IV antibiotics and lack of sleep (I hope!) We seem to be doing alright. I thought I may lose my mind last night, but I was able to keep my sanity. We were home not even an hour and a half and all of a sudden Brooklyn thinks she is going to throw up. You've got to be kidding me. Olivia wants to be held, Jack won't do his homework, Zac is at school trying to catch up, Home Health is supposed to be coming any minute to teach me how to do the IV meds, and Brooklyn starts puking. I (gently) throw Olivia down and we sprint to the bathroom and she refuses to puke in the toilet. The sink looked much more appealing.
Gross.
What's so wrong with the toilet? It's not where we brush our teeth every morning. It's easily flushable. It's not like she couldn't make it that far. Anyway, she looks at me and says she's all done and must have drank her chocolate milk too fast. She was off and running and there haven't been any episodes since. I'll take the chocolate milk theory. I call Zac to vent and see why life has to be so complicated, and his only concern...who's sink did she puke in? Don't worry, it wasn't yours sweetheart...
Gee. It sure will be interesting to see what ads this post generates.
Reflux? The Nesquik bunny? Bathroom remodeling? Insane asylums?
Have a happy Friday!

No worse for the wear...

Well, we got home about 30 minutes ago and Olivia shows no visible signs whatsoever of any trauma. It looks like we may have escaped the confines of PICU before anyone was able to spark any bad memories!

She's crawling around, playing with all of her toys, jabbering up a storm, and looking around like she's never seen this place before.

Or maybe she's just wondering when I'm going to fix her hair.

We have a couple of IV antibiotics to give her intermittently over the next 48 hours and then we should be good to go, as long as nothing comes back from her blood cultures. (Cross your fingers!)

Slumber party.

If she really wanted to just have a slumber party, we could have invited all the docs and nurses to our house. Looks like we actually get to head back to Macomb today. I could probably delete the last two posts and no one would even know we had to come to the hospital. We'll continue some IV antibiotics at home through her mediport (I guess it is coming in handy for something). The way it's looking, we should be home my mid-afternoon!

Good Morning update

Olivia's doing well this morning. She had a great night. We were literally here about an hour and she snapped back to her old self. Her fever broke all on it's own (no tylenol or anything). She's actually a bit on the cool side today. She is on 3 antibiotics just to cover everything since she is known for getting sick so fast. I'm not sure how long the antibiotics have to run for her to get a full round of them. Two are IV meds, the other is oral. She does have MRSA, so we are in isolation for that (back in those nasty yellow gowns) and she is especially sleepy (probably just catching up from the night and lack of sleep yesterday). Other than that, all is well, I suppose. We'll wait to see what the docs want to do with her today.

Just visiting...

Well, we are back up in PICU. That didn't take long. Olivia didn't seem to snap out of her little pneumonia fit from this afternoon and started spiking a temp. We are hoping, however, that we are in for a short stay. Right now, she's fast asleep and actually looks great. She tends to go in spurts. One second she looks totally icky and the next second she's ready to play. Who knows. I'm thinking she caught wind of the fact that I was actually going to leave the house tonight to have some adult conversation at a home party with some friends in G-burg. Next time I get invited somewhere, I'm definitely not letting her in on it.
Anyway, Zac and I are here at the hospital and Grandma C. is with the big kids. If Olivia continues to progress like she has been since we got here, we really shouldn't be here for too long at all. She's on 2 liters of regular oxygen, they are giving her some IV fluids and IV antibiotics, and her x-ray doesn't look horrible. That all sounds promising.