"The Meeting"

We are feeling much better about the plan of action after our meeting today. Each one of Olivia's specialties was represented, so it was nice to get everyone on the same page.
The main goal right now is to determine why Olivia is so sick. They are going to run a couple more viral tests to rule a few things out. I think, for the most part, everyone is in agreement that the main problem is Olivia's pulmonary hypertension. They are going to try to start her on another medication that may help. We are giving it one week, and hoping that she is able to start weaning on the vent. If not, they will probably do a cardiac catheterization to get a "true" reading of the pressures and function of her heart. Another possibility is putting a hole in her heart to help relieve some of the pressure. She originally had one put in during a previous surgery, but it may have closed on its own.
As far as her pre-leukemia is concerned: Would it help to start chemo at this point? No. It would just cause her immune system to be more compromised. Is it detrimental to not start chemo at this point? No. Her platelets and hemoglobin are able to be managed with transfusions.
They are going to try to run some more tests on her blood to see if her spleen is by any chance contributing to her breakdown of platelets. Her spleen is very large and could be "eating" up all of the platelets that she is getting.
So, as always, we feel that everyone has Olivia's best interest in mind, and hopefully she responds to these new ideas. She is in amazing hands here.

Perplexed.

The doctors just rounded this morning and said they are still trying to figure out why Olivia is tolerating coming down on the vent settings. They are going to consult the cardiologist and possibly do another echo to check her heart function again. This particular doctor seems to think she is heart failure and that is why she isn't showing many signs of improvement.
She also has bacteria in her airway...the same thing that was in her urine last week. This may mean we are back in isolation, but no one has mentioned it yet, so I'm most certainly not going to bring it up!
Her fluid balance is such a touchy subject. She's either too wet or too dry, never "just right." Today, she is on the dry side. She is still running fevers - right around 101 consistently. She needs platelets, once again. She dropped down to 19,000 from 35,000 yesterday. We still have our family/doctor meeting this afternoon, and I've been working on our list of questions all day. I can say that I'm going in with the attitude that we may not get any answers, but at least we can hear everyone's theories and pick the one we like :o)

Happy Doctor's Day!

Today is Doctor's Day. A day to honor the doctor's in your life. Lord knows Olivia has a few! So, this post is dedicated to you, Doctors. We appreciate you more than words can express. Some of you have become more like family, than a "healthcare professional," after all, we spend more time with you than we do the rest of our family. You take great ownership in Olivia, rightfully so. Even though she's probably caused you more gray hair and sleepless nights, she's been known to put a smile on your face just the same! Happy Doctor's Day!

So, a big thank you to: (in no particular order;o)
Dr. Lockard
Dr. Torres
Dr. Deshpande
Dr. Fortuna
Dr. Shah
Dr. Pearl
Dr. Al-Rahawan
Dr. Smith
Dr. Ross
Dr. Hasselman
Dr. Bash
Dr. Michaels
Dr. Uretzky

And anyone else I'm forgetting! Thank you, thank you, thank you!

Silly old fevers.

Olivia is still having fevers from an unknown source. They range anywhere from normal (very rare) to 103+. They continue to culture her when she spikes, but nothing comes of it. Today the doctor decided to try and switch one of her medications to see if that helps. There has been some research that Lasix in Down syndrome children can be linked to fevers. Olivia's been on Lasix since birth, so I don't know that it's the case here, but it doesn't hurt to try.
Olivia's cardiologist decided it would be a good idea to set up a meeting with all of Olivia's doctors so we can formulate some sort of plan. So, that is set up for tomorrow at 2:00. It will be nice to meet with everyone and see what each of their thoughts are regarding the best thing for Olivia.
Otherwise, things are all well here. No big changes.

7 times a charm...

I think Olivia set a record for herself today. Her peripheral IV went bad, and they needed another one to give blood through - it took 7 sticks before they finally got a good one! And we are talking the best of the best IV stickers here! Poor baby girl. Anyway, she is getting some blood today and some platelets (dropped to 17,000). They are going to try to very, very slowly wean down a bit on her vent today - nothing significant. When I came in this morning, I even got a little wave from her...so sweet! Now, she down for the count. Getting that IV in her took away all her energy, so I imagine she'll have a restful day!

Chugging away...

I am still totally amazed at how well Olivia handled everything yesterday. Hopefully she is starting to feel better. She's had a big morning already today. She got a new tube holder put on for her vent tube, got a couple of her dressings changed for her lines, and got her bedding changed...doesn't sound like much, but in her little world right now, it's huge!
I have noticed a bit more bleeding from her broviac site and her art line site, but it's not much at all. I'm just hoping it's not because of the switch in blood thinners, and is happening "just because." They'll probably keep a close eye on it. Otherwise, there most likely won't be any big plans for the weekend...just give her time to settle down from the last couple of weeks!

More details.

Okay, so the broviac went great. Placement is good, numbers are good, etc... They did decide that her heart isn't functioning well, and started her on some milrinone. Hopefully, that will turn things around. We are hoping that the heart problem is related to either whatever infection she's been battling, or from the "aggressive weaning" that took place earlier in the week. It may have just pushed her too hard. Also, they have been trying to regulate her clotting times with heparin. Her clotting times haven't been therapeutic, but when they increase her heparin dose, it seems as though her platelets drop. Coincidence? Maybe. So, they drew a lab to test for "Heparin Induced Thrombocytopenia." She's had this drawn before and it's come back inconclusive. So, they are sending it out this time, for a definite answer, and have switched out that medication to Angiomax. She's not peeing like she should, so they went back up on her diuretics. So, a day with lots of changes...but she handled them all with ease!!!

All good.

This is the first time in Olivia's career that she has cooperated for Dr. Fortuna! Woohoo! She's on her way back up to her room, so I'll post more after I get to see her....

Big day.

Olivia's CT scan didn't show much in terms of infection. Her liver and spleen are huge - could be leukemia or heart related - lymph nodes are huge, and the right part of her heart is much bigger than the left. She could be in heart failure as opposed to this being lung-related. She had an echo done this morning, so we'll see what that shows...it may just mean putting her on another heart med to get her heart in better working order.
She is going for her broviac today at 2:00. Hopefully, it goes more smoothly this time around.
Her platelets dropped from 24,000 yesterday to 19,000 today - and that's after receiving platelets??? Needless to say, she's getting more platelets today.
Also, her urine culture came back negative, so we are out of isolation! Yippee!
A different hematologist is going to be visiting her today to discuss switching some of her medications around. They may change her heparin drip over to Angiomax. She's been on this before, but I don't remember the significance of the difference between the two. Her temp has stayed lower than what it has been, so at least things are staying status quo.

All done.

She tolerated the trip to CT just fine. We most likely won't know anything until tomorrow, but I'll be sure to post as soon as I get word! Thanks for the extra prayers!

CT Scan

So, it's been decided that Livs needs a CT scan...from her head to her toes! Hopefully, this will find some source of infection that isn't coming back from any of the cultures. She's not breaking her fever at all today, she has a very, very hard tummy - can't tell if it's her spleen, if she just needs to poop, or what it may be - and she just isn't looking good. So, we are praying that it shows something...anything...as long as it's minor. It's just getting so frustrating, not being able to find a cause to all these fevers. She's been on some of the big guns, as far as antibiotics, and they haven't knocked out the culprit. Anyway, the scan is scheduled for 4:20. Hopefully, they see something...otherwise, official results probably won't be in until tomorrow. Keep you posted....

Misbehavin'

I tell ya...I leave the girl for less than 24 hours and she gets herself in a tizzy. She was very gaggy before I left yesterday and apparently it only got worse. She was getting herself so worked up that she was vomiting a bit. So, they put a NG tube down through her nose. Well, that ticked her off even more. Then, it seems as though all the changes from the week caught up with her. This morning she spiked a pretty good temp, and has had trouble getting it down.
The doctors seem to be having different opinions about putting the broviac in now. She just looks like she feels yucky. I am definitely glad she didn't get taken off the vent yesterday, because it seems as though it wouldn't have lasted long.
What else...they took her catheter out yesterday, and she hasn't been peeing very well...few and far between. They haven't rounded yet today, so we'll see what the doctors think of all this.
The sleepover was good. Crowded, but good. We took Jack to school this morning and Brooklyn came back to Dunlap with me. She's having a really hard time with things this time around. She may be playing me like a fool, but she seems to do it for everyone else, too, which makes me think it's legitimate. We got both kids registered for tee ball/little league and Brooklyn registered for Kindergarten, so it was a productive evening. Praying for a better day for Miss Olivia! Keep you posted...

No go for today...

Olivia did alright on the CPAP trial, but after talking to the doctor, it seems more logical to wait to extubate. Olivia still needs to have a new broviac put in, and it would be silly to extubate her and have to re-intubate her when it's time to go to surgery. So, they set it up to have a broviac put in tomorrow afternoon or Friday morning depending on how she is doing.
Other plans for the day...trying feeds again through her g-tube at 5 ml and hour, decreasing her diuretics (she's shrinking like crazy), and let her rest up for extubation day!
I'm getting ready to head back to Macomb this afternoon...if I can find it.
I've heard rumors that our computer at home is having issues, so if I don't update...don't worry, I'll be back at it tomorrow afternoon.

CPAP Trial #2

...is under way! They are going to draw a blood gas at 9:00 this morning to see how she's handling it. If it's good, the tube comes out! Yippee! If it's not, we'll try again later! So, please pray around 9:00 this morning that there is a definitive answer as to whether or not she's ready. It's always disappointing to have to re-intubate, so if she's not ready, I'll be patient. But, if she is ready, get that tube out!!! She wants to play! Keep you posted!

All or nothing

Well, we've always known Olivia is an all or nothing kind of girl. The doctor went from a peep of 9 to a peep of 5 on the vent, and dropped a couple of the other settings down quite a bit, as well. Now, don't ask me what any of that means, but the doc referred to it as "aggressive weaning." I'd say so! He also shut off her epinephrine drip and her pressures seem to be handling that just fine. She had a CPAP trial on the vent this afternoon, where she gets the oxygen and the pressure support, but does all the work on her own. She did okay with this, but it's like trying to breathe through a straw, so she was a little agitated. We'll give it another go tomorrow! This is one step closer to extubation!! Woohoo! Keep it up, girlfriend!

Piggy tails

Olivia has the sweetest little pigtails in this morning. I know that's her normal hairdo, it's just been a while and it's nice to know that the nurses had fun doing her hair during the night.
Olivia was wide awake when I came in this morning! I've given her a little pep talk about working on her vent settings today. We'll see what she decides to do. She looks so good. Her belly is much smaller, her G-tube site is better, her numbers are outstanding, she tolerated dropping another .01 ml on her epi...things are good. So, we need to cease the moment, without pushing her too hard, and make some progress!

Baby steps...

Vasopressin - off!
Epinephrine - down to .04 from .05
Vent settings are up a bit :o(
Hey, we'll take what we can get.
Olivia has had a pretty good day. Her blood pressure has been outstanding! Her G-tube site...you know, the one that's a month old now...looks nasty! They are going to try to consult the wound specialist to come take a gander at it. She winces whenever anyone touches that area of her belly at all. Poor baby.
Otherwise, Zac and the kids survived the first day back after Spring Break, although I miss them already. I'm hoping to make a trip back to Macomb on Wednesday for Kindergarten registration. I'm even planning to sleepover! My own bed?!? Can't wait - wonder how many people will be in it with me ;o)

Can you say...

Isolation?
I've been secretly hoping that something comes back from Olivia's cultures. Just for a possible cause to all of this. What do we get back...Acinetobacter baumannii in her urine. Huh?
Whatever.
So we are in isolation. We have to wear the lovely yellow gowns and gloves. I can't stand touching her with gloves on, so I'm kind of slacking in that department. I've promised not to touch her pee - since she has a catheter, that shouldn't be too hard ;o)
Otherwise, she is actually tolerating weaning down her vasopressin (yes, I'm knocking on wood). All of her numbers are great today! Could it be that she is ready to start cooperating with everyone's plans?!? Only time will tell...

The Sweetest Thing.

Zac just came up to the hospital to see Olivia. He had not seen her since Friday night. This was the big family waterpark weekend up in the Dells. He came in and did his usual loud-Daddy-voice, which stirred her from a sound sleep. She opened those big, brown eyes and gave her daddy the sweetest smile and then started waving at him, even with her arms restrained! She's back asleep now - that was the most energy she used in the past week. Talk about a little girl that has her daddy wrapped around his finger...

Wild woman...

Olivia has woken up with a vengeance. Apparently, she was all over the bed last night. She normally wiggles her way down, but this was more forceful. I really think she's ready to start feeling better. It will be interesting to see what the day brings. If they don't sedate her more, she's going to end up yanking that breathing tube out herself!

Happy Day...

Lots to celebrate today...

Today is Zac's birthday! Happy Birthday, babe! (Sorry..the only picture I could find of you was you yelling at the old football team ;) I don't have my usual resources)

And...it's World Down Syndrome Day today!

Olivia had a good night, so we can celebrate that, as well. She is still spiking temps here and there, which could be related to a few things. Personally, I think it's due to a possible infection from her PICC line. Her right leg is pretty red and swollen and very tender to the touch. It could just be inflammation, but might be infection. They removed the PICC line last night.

She's not tolerating weaning down on her blood pressure medications very well. Bummer. She may get to have a little bit of food in her belly today - just about 5 ml per hour to see how she handles it. They took her paralytic off yesterday, so it's nice to see her eyes again. However, it's hard to see her get sad, too. So, hoping for a quiet, peaceful day :o)

Keep it up!

Olivia had a really great night. She got some blood which made her heart rate come down, her blood pressure go up, and her oxygen saturations go up! Woohoo! I'm feeling good about today...thinking she'll make some good progress.
Her platelets are sitting at a whopping 54,000 today - up from 38,000 yesterday. And the kicker is, she hasn't had a platelet transfusion since last Friday morning. I think as long as they keep her tanked up on blood, she should be good to go!

Legoland

Here are a few pics from our great day out yesterday...

Jack with the sleeping man...he thought it was great that his shoe had a hole in it and his toe was sticking out. He was very put off that I didn't get it in the picture!

I think this was our favorite part...Miniland. They had downtown Chicago all made out of Legos.

Navy PierUnion Station and other downtown buildings...and Brooklyn, of course;)Every 10 minutes or so, it would be "night" and the skyline would light up. It was really cool!

Darth Vader
Harry Potter
Indiana Jonesand....Batman

President Barack Obama
And finally, a random picture from the Woodfield Mall play area...

All in all - a good day. We will definitely go back sometime. Basically because we got some free passes. The 4-D movie wasn't operating yesterday, so they gave everyone free passes to come back sometime. The kids really liked it. We recommend it, but only if you can find some good coupons. It's cheaper if you get your tickets online before you go, but still pretty expensive for what you get.

Spring Break

Olivia has decided to take a small break from making progress. We are still sitting around the same place as yesterday. Her Vasopressin has gone back up, but everything else has stayed the same. Her blood pressure just doesn't seem to be cooperating.
I suppose she's entitled to her own little "spring break," but this isn't quite what I had in mind. Patience - one of my best virtues...thank goodness!

Good day all around

Olivia had a really good and somewhat productive day. They have been able to come down on some of her vent settings and a little bit more on her epinephrine and vasopressin (blood pressure meds)....and her blood pressure has handled it just fine so far. She is definitely heading in the right direction.
Zac, the kids, and I made it to Schaumburg. Everyone really liked Legoland Discovery Center. We had lunch at Sweet Tomatoes (yum!) and walked around Woodfield for a while. The Grandmas were able to hold the fort down at the hospital, and Zac went in tonight on his way home. I'm skipping today, which makes me so sad, but I think I have a touch of what the kids had...chills, headache, scratchy throat, cough, etc... A good night's sleep should get me better by morning. We took a few pictures of our little day trip - I'll post those tomorrow...so stay tuned!

Status Quo Day

Olivia actually had a really good day. Not too many ups and downs. Only a low grade fever here and there, but mostly no fever at all! She is still looking really good. Except for her skin, surprise, surprise. We finally took the dressing off from her "ex-broviac site." Her poor skin was so broken down under there. She's also developed a bed sore, which apparently is a really big deal up there. They caught it at a very early stage, but I guess they can get really nasty. I won't go into details;) So, a wound specialist will come visit her tomorrow to see if they want to do anything special with it. Anyway, it was nice to have a stress free day.
If Olivia has a good night, Zac and I are taking the kids to Schaumburg to the Legoland Museum. We are all really excited for a partial-family day. It's been a while. The Grandma's are taking over for the day tomorrow, so Olivia won't be lonely. But, don't expect any blog posts. I'm sure I'll post when we get home just to give you an update. We didn't want anyone worrying all day! Have a good one!

Happy St. Patrick's Day.

So far, we are having the luck of the Irish today (the wee bit that Olivia has in her). At some point throughout the night, the nurses were analyzing Olivia's heart rhythm and were afraid she were in some degree of heart block (don't ask me to explain it). Luckily, after the cardiologist looked at it, he said she is just fine! Whew.
The dopamine is still off (out of the room, even.) They are working on her epinephrine today, and making good headway. She is still spiking temps here and there, but once the wet washcloths, Tylenol, and fan come on, she comes right down. As tricky as she is, she is very predictable in some aspects...if her blood pressure is below 80, the pee stops or is minimal. If her heart rate gets closer to 100, her temp is creeping up as well.
She is still resting comfortably. They haven't done rounds yet today, so I don't know if there are any major goals for the day. Personally, I'll take keeping things status quo;)

Ups and downs.

Olivia is still having some ups and downs. Her blood pressure has been hanging out on the lower end of things, which then causes her to stop peeing. She did spike a temp in the middle of the night of 103. They re-cultured all of her lines, so we'll see if those grow anything. I know we've been in this boat before, where we don't want her to have a bacterial infection, but if something would just come back to explain all of this, it would be nice.
She has been able to get rid of her dopamine, but did have to go up a bit on her epinephrine and vasopressin. Her platelets have been holding strong - around 27,000 - and her hemoglobin is a whopping 12 today. Her white count has come down as well, so hopefully, whatever her infection is, it's moving on out.
Brooklyn is feeling a little better. She woke up barking like a seal this morning, so she just keeps her mouth covered to hide those coughs in there. She's also refusing to get out of her pajamas today, because she's sick. And that's what you do when your sick. She and Grandpa are just laying around watching movies all day. In their pajamas.

Par for the course...

Olivia is still doing awesome! She's come down a bit more on her epinephrine drip and on her vent. There is a goal to get the Dopamine off by morning?!?
Zac and I both say that it is always so much harder to see her with all these tubes and lines when she hasn't had a heart surgery. Her record last year after her mitral valve replacement was 14 pumps. We are at 12 or 13, along with the vent, nitric oxide, a catheter, a central line, an arterial line, and a PICC line. She definitely doesn't mess around, huh? It will be nice when they start removing things one by one.
So, why the title of "par for the course," you ask? Brooklyn and I started out for Galesburg for a birthday party today. She just kept saying she was so tired and so cold. You guessed it - fever. So, after lots of tears, we turned around and went back to Grandpa and Grandma's for a nap. Luckily, after a nap and a bit of Tylenol, she was feeling much better. Hope you had a great party, Alaina!
My newest adventure...I'm going to try to learn to crochet. It seems like it would be a really good hospital hobby. Yesterday at "mommy conference," one of the vendors had the most adorable little crocheted beanie hats. They would be perfect for Olivia once she starts her chemo, so I thought it would be fun to give it a go. I'll keep you posted on the progress.
Thank you so much for the continued prayers. I love reading all the comments. Today there is even one from someone who said they found a link to our site from someone else that we don't even know. There are people all over the country praying for her and it means more than you know! So, continue to leave comments! We love knowing who you are and where you are from! It continues to amaze me and makes us feel so unbelievably blessed.

Another really good night.

Olivia is holding her own. She's one amazing little girl! They were able to wean down a bit on her Dopamine and Vasopressin (both blood pressure medications) and go down a bit on her vent settings. All things considered, she's looking really good. Her color is so much better than Friday. They are still watching her fluid intake/output very closely. It's such a fine line with her. Her platelets have stayed up pretty well - sitting at 30,000 yesterday - and her white count has also come down. Hopefully she is almost over whatever infection is causing this. She is still on the paralytic, but like I had said earlier, it's not really holding her. She's definitely not uncomfortable and it's nice to see her wiggle every now and then. Weekends are always pretty slow in the "making progress" department, so I'm very surprised with how much has been done in the past couple of days. Keep you posted...

Recharged.

I had a great time at my mommy conference today. And thanks to all your prayers, Olivia cooperated, too. She's had an amazingly stable day. When I came in this morning, her blood pressure was a little low, so they gave her some blood and some extra volume. Since then, she's been great. Her temps have been low-grade or non-existent. Right now, the thought is still that this is some sort of virus and it peaked yesterday. Yesterday seems like so long ago. Very surreal. Hopefully she is out of the woods on this one. The goal is to get rid of her epinephrine and dopamine drips, as well as come down on some of her vent settings. Thanks for keeping up on all those prayers!!

Good morning.

Olivia had a very stable night. Very peaceful and quiet.
They are trying to get a PICC line in her this morning for more access, but she's being rather challenging...imagine that.
I need some extra prayers today. I am scheduled to go to Bloomington for a "mommy conference" today. It's once a year and refreshes me as a wife, mom, friend, etc... until the next time around. My best friend flew in from South Carolina to go and I ditched her last night, but am hoping to go today. As long as I can pry myself out of this chair in Olivia's room, I'll be halfway there. Getting myself to drive out of the parking lot is the other half of the battle. I found this out last night. So, I'm asking for prayers for Olivia to have an unbelievably stable day, and for me to be able to get out of this chair to go, and to have the peace that passes all understanding today.
I'll be sure to post as soon as I get back this afternoon, or sooner if there are any issues. Thanks so much - we are feeling all of those prayers...every single one.

Olivia update

Olivia is having a stable afternoon. She still has her moments of funky heart rhythms, but they are able to get her out of it by tweaking her medications...nothing like this morning. They are definitely watching her closely. They have decided to put her on a paralytic so doesn't waste any energy moving. We are all wishing we could have an answer to this. Is it a virus that has made her this sick? So far no cultures have come back with any bacteria. Is it her heart? Her echo yesterday showed great function, but has it gotten too sick to handle an illness?

Anyway, her fever has stayed down compared to this morning. There are still questions that no one is able to answer, which makes it hard.

It's been a long day.
(Bethany - you picked a good day to be sick. Erin didn't even want to battle Olivia today=) Hope you're feeling better.)

Scary morning.

The nurse called about 1:30 and said Olivia was having trouble keeping her pressures up, so they wanted to put in an arterial line and start a few new medications to help her out. When I got here, she was doing great. Resting comfortably. Just before 7:00 this morning, her heart rate shot up to 200 and her heart rhythm became irregular. Within minutes her pressures bottomed out and they started CPR. I can honestly say it was the scariest moment I've had as a parent. They started compressions to get her heart back in rhythm and a new medication to "take over" for the compressions. Her heart never stopped, it just couldn't keep up. Right before this, she spiked a fever of 104.6. No one has been able to determine what is causing the fever. She is on two antibiotics, so bases are covered there. We'll just have to wait and see. Please pray big. Pray for a stable, calm day for her. Please pray for an answer to these fevers she has been experiencing. Zac was here within record time and our pastor wasn't far behind.

Avoidance

I've always had a great avoidance technique. Lately, I've been trying to avoid the topic of Olivia's pre-leukemia. I don't know why. My best guess, is that it is because I'm tired of the whole: "Olivia has cancer, oh wait, it went away." "Olivia's cancer is back. Well, sort of. Not, really." You get the idea. I don't even know what to believe anymore. Regardless, we've made a plan regarding her "pre-leukemia."
We decided that if she was transfusion dependent, it would be wise to begin chemo treatments sooner than later. That's obviously been the case, but Zac and I had requested that we wait until March 24. It's Macomb's Spring Break next week and we had planned a trip to Chicago with the kids and then a waterpark weekend up in the Dells on Saturday with the extended Chatterton/Trent families. Sort of a last hurrah.
After her most recent antics, Dr. Al thinks it would be beneficial to start chemo as soon as she gets over this little hump. She will need another line put in for chemo. We've requested that Dr. Fortuna place this line. After all, he knows her heart better than anyone. As soon as she is more stable, he will most likely place the line. Dr. Al gave us all the information on her chemo regimen. It was very helpful to look at, giving a list of each medication, the likely, less likely, and rare side effects. I'm still trying to grasp the whole process, but will definitely share little by little so it's not too overwhelming.
Dr. Al did say he had some anxiety about the whole chemo process with Olivia. She's not your "typical" cancer patient. It's going to be a fine line balancing her fluid so she's not getting too much or too little. It's also going to be difficult managing her blood thinner. They don't want her blood too thin along with low platelets, because it could cause spontaneous bleeding. They don't want her blood too "thick" because it could clot her mitral valve. She'll be in the best hands, regardless.
Anyway, I just wanted to pass along the info to give you something new to pray for. We're feeling them every day.

Rough Olivia Day.

Olivia had a nasty night. She would spike a temp, breathe faster, and was just plain fussy. By this morning, she was completely tuckered out. She became fairly unresponsive and was still working really hard to breathe. After lots of debate between the docs, they thought it would be best to intubate her. So, she is on a ventilator and they were able to put a central line in her groin so they have more IV access. After drawing labs, it showed that she was very acidotic (tuckering out fast). This was definitely a good idea. She's resting comfortably and it's nice to see her breathing so easily.
I debated on whether or not to share this, but it was the sweetest/saddest thing I've ever seen, so I have to. I sat Olivia up right before they intubated her and she looked around and started waving to everybody! Bless her little heart! She is one unbelievable little girl. She amazes me more and more every day.
There seems to be some more thoughts in regards to her pre-leukemia, but I'll save that for a later post. It will be a long one!

Rough Mommy Day.

Today has just been a tough day for me. I know, for the most part, it is due to my lack of sleep this week, but I'll be glad when tomorrow gets here. Olivia has seemed to settle down a bit. She got her blood, platelets, and is still requiring more oxygen. She's had a temp off and on today, but Tylenol seems to cure that.
Jack is feeling better. He went to the doctor this morning and has croup. He did spike a temp with it, so who knows if he and Olivia are sharing this bug. He got a prescription to help with his cough and by tonight, he said he was feeling much better. It was absolutely killing me not being with him today while he wasn't feeling well. I think that is where a lot of my anxiety from the day stems from.
Brooklyn is doing great. I think she was just tired last night when she wrapped her arms and legs around my leg and screamed at me not to go. Break my heart. She did, however, turn it off just as quickly when I told her to call me as soon as her bath was done so I could tell her how high the Spoon River was when I drove over it...for the third time yesterday.
The big kids are super excited that Grandpa C. is coming for a sleepover tonight and staying to play Barbie with Brooklyn tomorrow. We definitely have 4 strong candidates for Grandparent of the Year awards in our family!
Anyway, tomorrow should be a better day. It will be Thursday already and there are big plans for the weekend. It can't get here soon enough!

Little Miss Grumpy

Olivia is hanging in there. She is still requiring quite a bit more oxygen and is breathing faster than normal. She is also getting some blood this morning and then some platelets. They were a whopping 24,000 yesterday; she got some platelets; then they were 23,000. This morning they were 20,000. Platelets seem pretty worthless to me, but I suppose we all need them!
Besides all that, she is totally grumpy. I can't blame the little peanut, but my goodness. She's going to get a reputation around here.
On the home front, the kids were bummed to get home Sunday to their swing set broken into pieces. The windstorm blew it across the yard and it narrowly missed the house. We were thankful for that! Then, Jack called this morning and says he has a cough that sounds funny and it hurts in his chest when he coughs. Sick day for him. Brooklyn screamed when I left last night, making it very difficult to leave.
We need Spring!

Livvy Lou

Olivia had a boatload of appointments today. We saw cardiology, St. Jude, and we were supposed to see pediatric surgery. By the time we were about halfway through with her St. Jude appointment, she decided she was done. She dropped her sats, started breathing really fast, and got "grunty." So, she was admitted. She's up in Pediatric ICU (just because there were no beds in Intermediate). Apparently two days out was enough for her. Anyway, she is on a bit of high flow oxygen and getting rid of some extra fluid that she acquired (which I think was the problem to begin with), and feeling much better. Hopefully this will be a short stint, because I don't know how much more Barney I can take!

Surprise!!

Look who's home!

Hi Everyone!Ha, ha, ha!!!So, Dr. Smith came in this morning and said Olivia could go home today. The immediate response...."What?"

Sure enough, after getting some blood this afternoon, we broke out around 6:00. She is obviously super excited to be home and Jack and Brooklyn were super excited to see her, too. Feedings seem to be going well so far. We'll see how the night goes! More details tomorrow!

Finally!

I think we've finally found someone that agrees with us! We have consistently said that we think Olivia's current bleeding issues are related to the Lovenox injections. Dr. Smith from St. Jude agrees, so we are going to try to transition her back to her coumadin and hope the other things resolve.
Her platelets and hemoglobin have really been all over the place the last few days...not even worth trying to figure out that one. She did get some more blood last night and some more of the fresh frozen plasma, as well. She had a rough evening again - lots of screaming, bleeding, etc... By the time I came in this morning, she was happier than I'd seen her in weeks. She was having a great old time.
Otherwise, all seems status quo. Hopefully stopping the Lovenox makes everything all better!!!

Huh?

Olivia's platelets have jumped up to 127,000 (no that's not a typo)
Go figure.
Hemoglobin has dropped again to 8.?, but she is still bleeding, which explains that. The platelet thing - I dunno.
She did receive some FFP (fresh frozen plasma) this afternoon, and with that high of platelets, she should hopefully stop bleeding soon.
She is tolerating her bolus feeds great and is happy, for the most part. She is definitely wanting lots of attention - the boredom is setting in full force.
Zac should be on his way here with Jack and Brooklyn, although they get to see their cousins tonight and will most likely care less about me.
We seem to be moving in the right direction...

Goals are good.

The goal for the next couple of days is to get Olivia's clotting issues under control. She had an echo this morning to get a baseline of her mitral valve function. She had a chest x-ray last night to rule out and "pockets" of blood that were causing oozing. Both her "ex-broviac" site and g-tube site are still seeping out a generous amount of blood. Dr. Al is running some labs that will show if there is some factor in her blood that is causing her not to clot, other than the Lovenox and platelets. She will probably get some FFP (Fresh Frozen Plasma) today to help with the bleeding issues, but not too much because they have to be careful not to clot that mitral valve. It doesn't look as though they plan to scope her today, which I'm pleased about. She also gets to start her bolus feeds today. She will get continuous feeds at night and then a bolus at 10, 2, and 6 during the day. Hopefully she will tolerate that okay. She did finish another unit of blood last night and some more platelets. This brought her counts way up! Her hemoglobin is sitting pretty at 10.7 and her platelets are a whopping 77,000. Dr. Al thinks it will take a few days to get the bleeding under control, but as soon as we do, we should be able to break out of this place! Yippee!

Random acts of kindness...

It seems like a good time to reflect and thank people for the amazing things that have been done while Olivia has been in the hospital this time around. We are so incredibly blessed to have amazing family and friends. Check this out:
1. There was a gas card left in our mailbox by an anonymous person with a note saying we were in their thoughts and prayers. Thank you so much...whoever you are!
2. I called my mother-in-law to check on the kids and she said Stanley Steamer had just left our house and she had gotten our carpets cleaned. That had to be a huge job with all the blood Olivia had left! (BTW - Hydrogen Peroxide really does get blood out of fabric!) Thanks so much for this and for watching the kiddos!
3. A family that had a heart kiddo up in PICU at the same time as us stopped by to visit and drop off entertainment, snacks, and adorable hair bows for Olivia. How sweet! You guys know how much those little things mean when your stuck in a room all the time! Thank you so much to Miss Izzy and her wonderful family!
4. During the hustle and bustle of the last few weeks, no one checked messages at home to hear about our very overdue movie. Oops. Grandma and the kids tracked down the movie and took it back to Family Video. The man waived all the late fees and told Grandma to have a great day! How kind!
These are just a few little blessings that have come our way over the last week or two. People never cease to amaze me! So a big "thank you" to all our friends and family who have watched our kids, done those little things, and prayed for us!

I *heart* Olivia's doctors.

Well, most of them. I'm obviously not overly impressed with the surgical team lately. I finally got to the end of my rope and requested to see Olivia's cardiologist and Dr. Al from St. Jude for a little powwow. I'm feeling so much better. We evaluated all of the concerns that I was having and received an answer for most of them. The plan is to reduce the dose of Lovenox and just watch her mitral valve really, really closely. She is going to get another platelet and blood transfusion tonight to boost her up even more. After her transfusions this morning, her platelets were up to 49,000 and her hemoglobin was up to 8.4. The goal is to get her to stop bleeding from her central line site (which hasn't been taken out yet, but should be soon). She also is having an echo done tomorrow to check on her heart. They may also "scope" her to make sure she isn't having any internal bleeding. Sounds like some big plans. We'll keep you posted...

You ready for this one...

Olivia's central line is no good. Turns out it has found a way to migrate out of the vein it was in and is going to be removed this afternoon. It's a bedside procedure - the doctor said it will probably just fall out. It's still bleeding, but that's not related to it's location. It's supposedly related to her low platelets. She has gotten 3 units of platelets in the past 18 hours, so you would think she would start clotting sometime, which leads me to believe that it's not due to her low platelets. I really, really believe it's related to her Lovenox, but I need to get someone else to agree with me on that. I've been trying to decide if I am angry, frustrated, sad, annoyed, or all of the above. Right now, I'm just thinking it's par for the course. It's starting to seem like our tribulations are becoming somewhat of a joke, although I'm not laughing yet.
Anyway, she is having labs drawn around 2:00 to check her blood counts and a new test to see if the Lovenox is causing the bone marrow to not produce platelets. It's referred to as heparin induced thrombocytopenia. Maybe that will give us some answers?!? Keep you posted...

Bleeding problems

Again.

Olivia's broviac site started seeping yesterday and hasn't stopped, yet. She's also been fluctuating a lot on her blood counts. Here's a little breakdown:

Hemoglobin:
March 3 - 9.0
March 4 - 7.4
March 5 - 6.7

Platelets:
March 3 - 29,000
March 4 - 34,000 (then given platelets because of bleeding)
March 5 - 30,000 (this is after a platelet transfusion)

Hmmm...weird. Anyway, she is getting 2 units of platelets this morning and then getting some blood, as well. They are holding her Lovenox this morning. It seems to be the consensus that it may be to blame at least a little bit.
So, we'll see what the doctors say this morning.

Making headway?

Livvy had a really good afternoon and night last night. The GI doctor came down and we discussed her g-tube issues. He asked how we came to the conclusion that she wasn't tolerating her feeds. I told him that the nurses pull back fluid from the tube into a syringe and if it's "too much" then we stop feeds and start over. He said that doesn't work in pediatrics. He watches for vomiting, distention or bloating, and pain. Well, since they loosened the clamp on her g-tube, she's been pain free. She's had no vomiting. Her belly does expand when she gets food, but who's doesn't? So, I'm thinking we are going to be making some headway here! She is up to 20 ml an hour this morning and tolerating it well. The hope is to go up to 30 today and give her a while to adjust to that. Then to 40, etc... I think when she gets to 45 or 50, they will stop and try her on bolus feeds. If we can get her on this schedule, we would be halfway out the door!
I haven't heard anything from the cardiologist about her broviac placement. If it's not in a "comfortable" place, I believe that they will remove that one and put in a new one before we would go home.
Her platelets are holding their own at 29,000 and she hasn't had a transfusion since the day of surgery. Usually they would transfuse at this level, but she isn't symptomatic, so they'll wait.
She has been much more alert and happy, which is great to see. She did get to eat by mouth again yesterday - a half a Nutrigrain bar and some Cheerios. We are praying for one whole smooth day today. Keep you posted...

Annoyed.

Olivia is a bit better, but has her moments, of course. The goal for today is to get some answers. She had an echo this morning to check the placement of her central line (haven't heard anything back yet). She also is supposed to see the GI doctor and see if he has any thoughts, concerns, or suggestions as to why she doesn't seem to be tolerating her feeds. The surgical team just left, and quite frankly, I'm annoyed. The attending surgeon came in and loosened the "peg" that is holding her g-tube in place. Now, this was mentioned by a resident last week...that the tube was too tight, but no one did anything about it. Supposedly it can cause a lot of pain and discomfort, both inside and out. So why did it take 6 days to come and loosen that? It seems like an easy fix to me. I didn't ask why it's taken so long, because in all reality, why does it matter. It's not going to make me feel any better.
I'm trying to look at the positives and think that maybe this was the whole problem and now it is fixed. One bonus from today is that her Lovenox dose seems to finally be within a therapeutic range. Another positive is that the movie lady came around and we don't have to watch Barney anymore today...on to Dora. Who could want anything more out of life, really.

Setback #2

Alright. I'm taking back that last post.
Olivia started feeling a whole lot of pain last night around 9:00 or so. She screamed for a good hour and a half until she finally got some Fentanyl. That put her to sleep for most of the night. When checking her g-tube, the nurse pulled back a lot of blood. The residents have their own theories on this, but the nurses have never seen this happen before. I'm with the nurses. They know way more than the residents. I'm anxious to see what the surgeon makes of this. So, they stopped feeds again and gave her a break. They started around 2:00 with 5 ml an hour and here we sit. She seems to be tolerating the small amounts fairly well, but obviously she needs more than that. The doctors should be making rounds soon, so we will know more after that. Hopefully.

Guess who's feeling better?

Olivia is doing awesome this afternoon (all things considered). She has been up since 7:30 this morning we no thoughts of a nap. After her GI study this morning, she definitely had a little more pep. However, Speech came in and said she had gotten the okay to try to give her some food by mouth! Yippee! She ate a half a Goldfish, 1/2 an Apple Jack, and about 6 itty bitty bites of a Nutrigrain bar! After this, she was waving, smiling, giggling, and pulling herself up on the side of the crib! The girl loves her food! I think a lot of it has to do with stimulation and knowing there is life outside of her room, but the food definitely helped. They re-started her feeds at 5 ml an hour again, and they will check every 4 hours or so. They will continue to go up as she tolerates! We're just praying that her belly is ready this time! Keep you posted...

Update!

Looks like tube placement is good. That is definitely best case scenario. So, now we will start over again with feeds and hope she does better. If not, Dr. Pearl wants to do another gastric emptying study to make sure her anatomy didn't get messed up during the g-tube placement.
It's amazing to me to see the difference in Olivia after just taking a quick ride to radiology. Since we have been back to her room down here in PIC, she has smiled, giggled, danced, waved, and seems to be close to her old self again. Weird. Maybe she is just totally stir-crazy. If she were more "portable" we would try to get out more. Anyway, hopefully feeds go better today so we can make some progress!

Setback #1

We always expect setbacks when Olivia is in for "major" things. Apparently, a g-tube qualifies as major in her little life.
Yesterday when the nurses went to change the dressing, the smell was nauseating, there was yellow junk, and blood. The resident came down and offered some possibilities, but ultimately stopped feeds and said we'd watch it. By this morning, if anyone came near her tummy, she screamed bloody murder. Real tears and all.
Dr. Pearl, the pediatric surgeon, stopped by and gave four possibilities:
1. The tube placement is fine, it just isn't working well for some reason.
2. The tube is pressing up against part of the colon and/or intestinal wall.
3. The tube has gone through part of the colon.
4. The tube has gone through part of the colon and intestine.
She is having a GI study done at 8:45 this morning to determine what's going on. If it is either of the last two, she will have another surgery. We are praying for some answers. Regardless of the outcome, it would be nice to know where to go from here.
Her platelets are starting to trend downward again (35,000 yesterday), so she may get a transfusion today. She has more labs to be drawn at 11:00, so we'll see where she's at then. Keep you posted...

Starting over.

Once Olivia started getting a "reasonable" amount of milk through her g-tube, it started sitting in her little belly. So, we are starting over. She is at 5ml of milk an hour and will increase every two hours, as tolerated.
She's definitely got her days and nights mixed up. Sleeps all day. Up most of the night.
Not much else is new. We are just hoping that she starts tolerating her feeds better so we can break out of this joint! At this rate, we'll be here for months!