3 tsp.

Olivia is up to 3 teaspoons of milk an hour! Woohoo. It's like having a newborn again.
Anyway, she seems to be tolerating her feeds well. She will most likely continue to go up today and the doctors will set a goal for her once they all collaborate their ideas on calorie intake. She may even get to start oral feeds later today! She has been unusually fussy off and on, but I think that's mainly due to boredom and oral stimulation. This is going to be a bit of a transition for her, but once she can start eating by mouth, I think she'll forgive us=) Otherwise, all is well on the home front. Jack and Brooklyn are great. They got so big over the last week. They always do when I don't see them. Hopefully, we can all get home again soon.

Yummy!

Olivia is finishing up her last vial of blood and is getting feeds through her g-tube! She seems to be tolerating it well, although I'm not quite sure how we would know if she weren't. Otherwise, all seems to be going well...keep you posted!

Better

It''s amazing how much relief I get from just typing out my frustrations. I instantly felt better and requested to see the resident on call. After an hour and a half, the nurses were able to track her down and she made it in to talk with us (good thing it wasn't an emergency =)
I asked my questions and vented my frustrations. They seemed to be well received, I guess. Regardless, I feel much better and hopefully Olivia will be able to get some feeds started this afternoon sometime.
Oh, and I was mistaken. Her fluids she receives does have calories in it, just no nutritional value. She is also going to get some blood this afternoon, so hopefully that will pump her up a bit.

Frustrated.

I'm beyond frustrated today. I know it's because I'm tired. And when I'm tired, I get all emotional. But...the on-call surgeon came in and said there is still too much drainage from Olivia's g-tube. So, she wanted to clamp it off for about 4 hours, come in and unclamp it, and measure the amount of fluid that comes out. If it's a small amount, then the fluid is moving on through the intestine and she can most likely start feeds. I have no clue what it means if there is a large amount of fluid. No one said. In the meantime, they didn't clamp it and no one came in to clamp it, so I went ahead and clamped it myself. If that's what the doctor wanted, why did she not just click the clamp while she was standing there playing with it?
Anyway, we are going on 60 hours with absolutely zero calories. She is getting fluid through her IV to keep her hydrated, but she is starting to wither away, literally. I know she is normally on the "puffy" side, but she is looking so skinny right now. I'm trying to vent this out of my system enough to get the guts to talk to the resident about all of my concerns without being emotional about it. It seems to be helping, so we'll see how it goes from here...

Hungry!

Olivia had a really great night. She seems to be a little off on her sleep schedule, but she was content just watching shows for most of the night. I will say, however, that she is getting hungry! She keeps signing "more" which is usually her way of telling us she wants to eat! I'm hoping she busts that out when the docs are in here this morning and they feel bad enough to let us feed her.
Otherwise, all is well! The big kids are coming this direction tonight and I can't wait to see them!

No feeds today

Well, Olivia didn't get clearance to get feeds through her g-tube today. Maybe tomorrow. She does get to use it to get her medications, though. We've had visits from most of the doctors today. The cardiologist popped by and said that he looked back through all of her echos, records, and other information and did find a note stating she had a double vena cava. Apparently it's just not that big of a deal unless you are putting a central line in. Then the St. Jude doctor came in and said he had spoken with the cardiologist and there is a possibility that they will not be able to administer chemo through her central line because of its placement. Huh? He said it would be better if it were located on the other side. Well, Dr. Pearl tried that. Anyway, he was going to check with a few other people and get their thoughts on that. We're definitely hoping he's confused. Otherwise, Olivia is having a great afternoon She's not in any pain, but you can tell she is a little lethargic. She's not sad, not happy, just content. She doesn't want to sit up at all, but is happy to just lay around and watch movies. It's a good day for that in my opinion!

The next day.

Olivia looks awesome this morning! She slept great last night and didn't require any more pain meds. We should be able to get clearance on using her g-tube today, so she can start getting food! I can honestly say she hasn't looked this good in at least a month. The petechiae on her face is gone (most likely from all of her platelets!) and her skin color is so much better than it has been. She is getting an extra dose of IV diuretics, so that is keeping all the puffiness away. Her tummy had been so huge lately - just full of air. Now that she has the G-tube, we can get that air out whenever we want! I'm thinking we all need one of those! It should be interesting to see the difference in how her clothes start fitting. No more tight jeans!
Otherwise, her numbers are all great. Her heart rate has come down a bit, so we know she is more relaxed. Her breathing has slowed down some, too. Her oxygen saturations are awesome, so her lungs must be keeping up as well. I'm anxious for rounds this morning, so everyone can see how great she looks!

Drugs!

Olivia is doing really well. She's gotten some drugs, so that seems to be helping...alot! It's definitely good to have friends in high places. Her doctor friends from PICU have randomly been checking on her. She's been a little fussy when they swing by, so they immediately order her some Fentanyl. They really like their drugs up there. That's good for Olivia!
She has been able to get off the mask and back to 3L on her nasal cannula. She is sleeping soundly and her numbers are looking great. I think it will be good to just keep her comfortable for tonight and start making some headway tomorrow! Please pray for a peaceful and painless night!

A little more info

Dr. Al just came in from St. Jude. Her bone marrow showed 10% blasts. This is a bit more than her last biopsy showed. 20% is considered Acute Myeloid Leukemia. So, it would seem that we are still in limbo. If she still requires frequent platelet transfusions, he would like to begin treatment immediately. The problem for us: Her platelets were 49,000 on Monday, 51,000 on Tuesday, and 59,000 today without any transfusions. If they continue to improve on their own, it could buy us some time - treat in 6 months to a year. Only time will tell, so what's new!

The waiting game.

We are still waiting for Olivia to come to her room. In the recovery room, the nurses have had to give her some Fentanyl for pain, which requires more time in recovery. Then, when trying to get her from the O2 mask to her cannula, she kept dropping her sats. So, they called us in to consult with the docs and try to determine where to go from here. There isn't a bed available in ICU, so we are going back to Intermediate. The doctors were just trying to determine if she needed to be in ICU. Bottom line is...she is coming back to Intermediate as soon as they get report called in to the nurse. Zac is with Olivia now, so I'm just patiently waiting for them to get back to the room. Here she is...gotta go!

All done.

Dr. Pearl came in with a huge grin on his face. You could tell we should have warned him that Olivia was a little tricky.
The g-tube went in just fine. They he started working on the central line. He went in on her right side between the clavicle and a rib. The catheter went in just fine and when he tried to thread the line, it wouldn't go.
So, he tried her right jugular vein. Same situation.
He went to the left jugular vein and took and ultrasound to see where he wanted to go, dissected the vein, and went in for the kill. It finally went in, but then the x-ray showed it on the wrong side of her heart. Go figure. He and the anesthesiologist looked at each other, did another ultrasound, and found that she has a double vena cava. Who knew? You would have thought someone would have mentioned that along the way. Regardless, the line works great. They were taking another x-ray and then going to let her wake up. We should be able to see her in about 20 minutes or so. Thanks for all those prayers. It sure is good that God helps us keep our sense of humor throughout our journey with Olivia!

3 done

1 to go!
The G-tube is in. The nurse just called and said that it went very smoothly. Dr. Pearl is still working on the central line. He's having trouble finding a spot for it because she doesn't have much of a neck. Once again, we can attribute that to that extra little chromosome of hers! Things are going well, however, and we were told not to worry! They are just trying to find a good spot.

2 done

2 to go.
The bone marrow aspiration is done. Dr. Al was going to try to get a sample from both sides of her hips and an extra amount to do a certain test called the GATA-1. I think it has something to do with checking for transient leukemia, but don't quote me on that. We didn't speak with him after the procedure, but Dr. Uretzky just popped in and said the ear tubes are in. He did say they took a little longer than the average bear because of the size of her ear canals. Down syndrome kids have very small ear canals and have a higher tendency to drain more. So, he put in a special tube called a Titanium - something. The handle the ear drainage better or something like that. He said Dr. Pearl was starting on his 2 procedures, and things were going well. Technically, Olivia is half way done, although these last two things take the longest. Keep you posted...

In the OR...

We just sent Livvy off to the OR. She was sitting up, enjoying the ride, waving to people, and went through the last set of doors with a little giggle and a smile. She's such a trooper. So, now we sit and wait. She is going to be getting some platelets and fresh frozen plasma this morning while the procedures are being done. It should be interesting. In the words of the pediatric surgeon..."It's going to be like a 3 ring circus in there today. 50% chance things will go as planned." Luckily we know that 3-4 hours could very well mean 6-8! Keep you posted...

And the winner is...

The order of appearance for tomorrow morning...
1. Dr. Al - bone marrow biopsy
2. Dr. Uretzky - ear tubes
3. Dr. Pearl - g-tube and central line

She is scheduled for 8:00, but will probably head down to the OR around 7:00. She will get platelets during the whole thing, and possibly some fresh frozen plasma during the procedures. They estimate anywhere from 2-3 hours. Not too bad when you are used to 10-13 hour heart surgeries! We will go to ICU afterwards for monitoring. Thanks for all the prayers...keep you posted!

Things are a go!

Sounds like Olivia is good to go for tomorrow. She is the first case of the day and will be getting her ear tubes, a broviac, g-tube, and a bone marrow biopsy done in the morning. It will be a big day! All of the physicians are on board with the plan and comfortable with the arrangements. She is going to have a Doppler reading done today of her neck and chest to find a good spot for the broviac. We will most likely go up to ICU after the surgeries because of her history. This way she can be monitored more closely.
I would love to be a fly on the wall in the operating room tomorrow. There will be 3 different doctors there to perform the 4 procedures. Do you think they just draw straws to see who goes first? Should be interesting...

Go Livvy!

I tell ya...give a girl some IV Lasix, and life is good. She instantly started "slimming down" and perking up last night. She has also been able to tolerate a nasal cannula for most of the night. She just had to switch back to the mask for a few hours. She did really well throughout the night. Today, we'll wait to see what her counts are and see what the surgeons decide!

Sleepyhead.

I've only seen the whites of Olivia's eyes twice today. She is soooo sleepy. I know she had a big night on Saturday, but she slept quite a bit of yesterday and pretty much all night last night. Hmmmm. She's also starting to get quite puffy from all the fluids she's receiving, so I've requested some IV lasix to get rid of some of the extra fluid (thanks friends =) you know who you are!!) Dr. Smith from St. Jude is doing in-house patients today, so we haven't seen Dr. Al. He said we may have to postpone Wednesday if her blood doesn't level out. With the decreased dose of Lovenox, her Prothrombin time (the amount of time it takes your blood to clot) is low. It was high. So, they are going to tweak her Lovenox again and hope that helps.....
Well - in between that last sentence and this one, Olivia had some visitors! Her PICU doctor and nurse practitioner stopped by to visit and thought she didn't look so hot either, so they are going to keep an eye on her. They also requested that her cardiologist stop by to peek at her. Whew! I feel better already. It's very new for us to be here under the care of St. Jude. Don't get me wrong. They are absolutely amazing at what they do. But, Olivia has so many underlying issues. Her heart. Her respiratory issues. Pulmonary Hypertension. The list goes on... So it's nice to have someone to monitor her overall care. Within the last 30 minutes of getting her IV diuretic, she sat up, ate, smiled, pinched my face, and watched a bit of Barney. Lasix is good, but God is better! Thanks for praying.

Olivia had a "restful" night. She finally cashed out at about 8:30 last night after a good 6 hours of fussing. But only after she had a bit of a respiratory episode. Her night nurse came in and we were talking about how much she disliked the oxygen tent and so we decided to try her back on a nasal cannula. She turned as blue as the midnight sky, started thrashing around, gasping for air, and screaming. Not such a good idea. I have no idea why she did that. Her lungs are clear, so there is no reason she should be having any respiratory issues. Her hemoglobin had dropped to 6.?, so she should require a bit more oxygen, but it shouldn't have caused the "episode." Regardless, it gave me flashbacks to last year when she stopped breathing on me momentarily and I had to call 911. This was definitely a minor case of that, but very similar to how the other one had started. Anyway, she calmed down just as fast as she flipped out all is well. This morning, she is tolerating being on an oxygen mask, so that's at least a step in the right direction. She did get a blood transfusion early this morning. Her platelets are holding at 40,000+ which is pretty good for her these days. Her regular hematologist/oncologist usually rounds about 8:00, so it will be interesting to get his take on all of this. I'm hoping her cardiologist pops in, as well. I've not seen her smile Since Saturday evening, and I'm definitely missing that. And I didn't get to say goodbye to Jack or Brooklyn since this happened so late on Saturday, but luckily I know they don't miss me, so that makes it a little easier ;) I'll let you know if Dr. Al has any insight on all of this...

Feeling better?

Olivia's breathing has gotten much better. They decided to put her under an oxygen tent. She liked it at first, because the nurse covered it with stickers. That wore off quickly and she's been pretty fussy for, oh, about the last 6 hours. She is still able to eat with this and it's giving her poor little nose a nice break from a nasal cannula, so we aren't complaining. It's better in our eyes than the alternative, but she doesn't seem to see it that way.
They did decrease her dose of Lovenox. I didn't hear if it was because it was too much to begin with, or they are just trying to regulate it, but I'll be interested to find out. Her nose has been seeping a little bit, but she looks so nice and clean without dried blood all over the place. Her sweet little face is definitely taking the brunt of all this blood stuff. The plan for tonight is to have no bleeding, draw labs at 10:00 or so to see how all of her counts are doing, and sleep! My mom is staying with her tonight so I can try to get back on schedule a little bit. What would I do without her?!? I'll update in the morning, unless something really exciting happens =)

Wishful thinking.

I left Olivia around 11:00 today to try to get some sleep. I wish I were still young and able to handle this lack of sleep, but such is life. Anyway, she is doing fine. Still on higher amounts of oxygen. The downfall to this, is that they wanted her on a mask. You tell me how they are going to keep a mask on a fussy, active 2 year old? So, we are standing there holding a big blue tube up to her face at all times. She really needs to get switched back over to her regular nasal cannula. Also, they reduced her dose of Lovenox and will re-test the accuracy of the dose tonight at 10:00 or so. Which means...another night in the hospital for us! The attending physician today recommends that she stay through until surgery time. Makes sense, I suppose. But, I had not really planned for that. What's new?

Long night.

Olivia is still having bleeding issues. She started another nosebleed yesterday in the morning so she went over to MDH for a CBC. Her platelets were 33,000. I called St. Jude and the doctor said that was reasonable for her but to keep him posted.
So, by last night she sprung another leak and wouldn't stop, so I took her over to MDH about 11:30 pm in hopes of getting platelets in Macomb. No go. So we left there about 1:30 and got to Peoria about 3:00 and are getting platelets. When we got here, her oxygen sats were only 75, so she is on quite a bit more oxygen than at home. This is mostly due to the fact that she wasn't getting any oxygen through her nose, because it is so clogged with blood clots. Pleasant, I know. There also seems to be a discrepancy with her Lovenox. Hopefully, we can get this all figured out and be on our way home by this afternoon. Keep you posted...

Without a hitch...

sort of.
Olivia had her labwork done this morning and we came home right after. How often has that happened lately? The lab was missing the order and it did take us an hour and a half from arrival to departure, but at least we are home. We did miss preschool today because we didn't get back to Macomb in time, but it was kind of nice to have a lazy afternoon.
Olivia just can't catch a break, though. We got home and within the hour, her Home Health nurse was here to administer her Synagis shot. And since she is so big now, she has to get a shot in both legs. If you count both Lovenox injections, her labwork, and the Synagis, the poor girl was stuck 5 times today. She is bruising so easily these days (due to the low platelets). Her bleeding has pretty much stopped, but she has had a few instances where her nose bleeds a bit, but stops right away. Also, the sites on her tummy where she gets her Lovenox shots are bruised and keep seeping off and on. I can't explain how tired I am of seeing blood! I did, however, get all the blood from the other night out of our carpet! That was definitely a bonus! We'll probably take her in tomorrow morning for a CBC to check on her platelets and see how she's holding up.
Is it bad to be excited about Olivia's procedures next week? I am so ready to find out what is going on inside that little body of hers and get some answers. Plus, when she gets that central line put in - no more pokes for IV's or lab draws! Yippee!

Just another day in paradise.

One of these days, we are just going to have a normal run-of-the-mill day, and people are going to think something is wrong.
Olivia woke up at about 2 this morning with a massive bloody nose. It seemed to stop for a while, but then started trickling again...until about 1:00 this afternoon. Along with this, her eye actually started to bleed. Gross, I know. It was really strange. There was literally blood everywhere. So, to the lab for a CBC this morning. Low platelets. Back to Peoria.
Olivia got a platelet transfusion and slept through the entire thing (besides getting the IV started). Also during her visit, we established a pretty good game plan for next week. It's going to be another big one. First of all, we will most likely go in sometime this weekend for some more platelets since she doesn't seem to be holding on to them for more than 48 hours. Then on Tuesday afternoon, Olivia will be admitted to the hospital, get any transfusions she needs, and get ready for a big day on Wednesday! She will be getting her G-tube (no Nissen necessary - no signs of reflux), a central line put in (no more pokes!), have her bone marrow aspiration done, and possible get tubes put in her ears (if the ENT is available). It will be so nice to get this all done in one shot and get some answers (hopefully) from the biopsy. She will most likely be in for 2-3 days.
The downfall of all of this....we had to stop her coumadin (blood thinner) and start her on Lovenox injections. You may remember way back when I had to give her these shots at home and how hard it was for me. This time around, I gave her the first injection tonight and she didn't even cry! She's such a big girl! Anyway, we switched to prepare her for surgery, but she will most likely continue afterwards for a while as well.
Tonight the girls and I are staying at my parent's house because Olivia has to have a lab drawn in Peoria in the morning. The boys are holding down the fort at home and trying to get some sort of order. We left the house in quite a disarray. We are hoping for a semi-quiet weekend, but aren't getting our hopes up!

Home!

Olivia is so happy to be home. We just picked up Jack and Brooklyn and she's loving getting back to some sense of normal! It's loud. The kids are making messes. I'm going to start thinking about supper. Life is good.

Yippee!

The probe came out a whole lot easier than it went in. Olivia is relieved to have that silly thing out of her nose =) Someone will call sometime with results.
Now, we just wait...
Next post from home!!!!

Counts are up!

Olivia's blood counts are up thanks to all the blood products! Her hemoglobin is up to 12.2 and her platelets are up into the 80's! Woohoo! Now if she can just hold on to those...
She and Zac had a good night. She's very roly poly this morning and it's obvious she's bored with all this hoopla. Hopefully they are in early to remove the probe and we can get out of here at a decent time.

Bedtime!

Well, a little blood goes a long way. Olivia is all tanked up and feeling great! She has had a couple of little naps and been eating pretty well. She's vomited a few times, but is that reflux or irritation from having a probe down her throat? Who knows. Anyway, you could tell when her blood kicked in. She sat up and started babbling and playing like crazy. Zac is staying with her tonight, so they should have a good time. Hopefully, we get out at a decent time tomorrow. I'm going to cancel her eye appointment. It's just a follow-up and it seems like it would be torture to make her sit through another appointment. So, we are going to head on home after we are discharged. I'll be sure to post again in the morning. Have a good night!

Much better.

Sorry about the delay in posting. I was able to get a nap in.
Anyway, they finally came in and pushed the probe down a little bit and that helped tremendously. She hasn't been gagging nearly as much - really only when she eats. Her second round of platelets is done and her blood is going, so we are on a roll.

Miserable

This is awful. They inserted the probe about 2 hours ago and Olivia has not cried for about 10 minutes of that 2 hours. She's miserable. She handled the procedure itself fairly well. You can tell she can feel the probe in there. Every time she swallows, she screams. She's gagging like crazy, which I am diligently recording in her little diary. This has to be in for 16-24 hours. Will we survive?
Oh, and the x-ray showed that the tube may be to high and they'll need to push it down. They were supposed to let the nurses know what to do about it. An hour ago. These last two hours may not even count! Ugh...

Blood stuff

Told you I'd be posting lots today. Did I make it 5 minutes?
Dr. Al just popped in and said we would be going ahead with the impedance test today. She will be getting more platelets and some blood. Her hemoglobin is down to 8.?? I had wondered why only her platelets were dropping and not her other cell lines, but he said it doesn't always happen all at once. He is scheduling another bone marrow biopsy for next Thursday (the 26th, I think). So we are all hoping that gives some more answers to little Miss Olivia's antics. More to come...

Good night and good morning

Olivia had a really good night. The fact that she isn't really sick makes a big difference! She got her platelets and that bumped her up to 55,000. They are going to give her some more during her procedure today just to give her a little extra boost. Gee, maybe we could even make it 4 days without needing a refill this time?!?
Anyway, her INR is down and her platelets are up, so it sounds like it's a go for the impedance test today. Someone from the GI lab should be down around 8:30 to place the tube. Then a quick x-ray to make sure the placement is correct and the test begins...
It will be really interesting to see how she handles this. She's never really been a fan of people sticking tubes down her nose, but who would enjoy that? Any guesses on how long it takes before she yanks it out??? It's going to be a long day, so you'll probably hear from me a lot. I apologize in advance. Have a great morning!

Question/Answer

So, I looked into the whole probe, low platelets, high INR situation and all is true. No probe placement unless Olivia's platelets are above 50,000. What does that mean for us? They admitted her this afternoon after her ENT appointment. This way she can get her platelets tonight, they'll check her counts and give her more if necessary until she reaches the target of 50,000.

Her INR has to come down, as well. If it is still high in the wee hours of the morning they will give her some FFP (Fresh Frozen Plasma) which will bring it down to an acceptable number. It sounds like the impedance test is a go as long as they get all the other stuff under control. They were able to get her IV in with only one shot - woohoo!

ENT report - she'll get tubes whenever they can coordinate a time with the G-tube or central line placement so we can do it all at the same time.

She is completely happy just whipping toys out of her crib. To answer some of the questions...When Olivia gets platelets, it is straight-up platelets - no blood. I believe it's called phoresis when you donate your platelets. They are filtered out of the blood. The platelets are the "clotting factor" in a person's blood. When they are low, the obvious signs are the petechiae and possible bleeding. If a person has really, really low platelets, it is possible to have internal bleeding, although it is very rare. Hopefully, that answers some of your questions and remember...these are Dr. Julie's answers. Take them with a grain of salt =)

Marathon week.

I think a real "running" marathon would be more fun, but unfortunately ours is just a doctor appt. marathon. We started things off this morning with a quick stop to the pediatrician. Olivia's INR is 4.8 (too high) and she has a whole lot more petechiae all over her body. She's crabby and puffy and has all sorts of little things going on. Then on over to the hospital for a CBC. Platelets are back down to 24,000. Ugh! Ugh! Ugh! Hopefully we can hold off until tomorrow to get the platelets so she can get them while we are already there for her impedance test. However, I don't know that they will even put the probe down her esophagus if her platelets are too low. I should probably look into that.
Anyway, we head to the ENT this afternoon. Then a sleepover in Dunlap. Check in at the hospital tomorrow morning is at 6:30 am. Tube placement at 8:30 am. And then we keep track in a little diary every time she eats, positioning, reactions, coughing, sputtering, vomiting, etc... for 24 hours. Should be a grand time. Then off to an eye appointment at 10:20 on Wednesday. Of course, this is all pending no other complications before this afternoon...
No one ever said our life was boring! Stay tuned...

Cute story.

I was looking through Jack's school papers the other day and came across his math paper. He had one marked wrong that was actually correct, it was just sloppy handwriting. So I thought this would be a good opportunity to discuss taking our time with important papers, because when you don't and things are sloppy, it can be marked wrong, etc....
Jack then tells me that it was a timed practice test. He only had two minutes. And besides, they graded it themselves and he had marked it wrong..."there's no way Mrs. Lovejoy would have known that was a 6." I hope he always stays this honest!

Tanked up

Olivia got her platelets this morning and we are praying that they keep her tanked up for the weekend. These trips are definitely starting to wear on her. She's been kind of fussy and grunty with me lately, but the second someone else walks in the room, she gives them the biggest smile you can imagine. I think she's totally bored with me and mad that I keep taking her to places that stick her with needles. I can't blame her. The nurses had to stick her 5 times this morning before they could get an IV started. She has so much scar tissue in her veins and has been stuck so many times lately that there isn't much to choose from. She really needs to have a central line put in sooner than later if this is going to continue.
Once they got her IV in and bribed her with a new toy, she was just as happy as can be. We watched Barney together (her new favorite show), she had some breakfast, and we read some new books all while she got her platelets. It's really not a bad set-up. Just a slow process. So, we are going to try to make it until Tuesday without getting any labs. We'll just watch for any symptoms. She still has so much petechiae (little red dots) all over her face, back, and trunk. It's even started to spread to her arms and legs. It should clear up with all of the platelets she's been getting, but it seems to be getting worse. This is going to make it hard to notice any new symptoms, but she usually has a way of letting us know.
Have a happy heart day tomorrow!

Stinky old platelets

I don't get it. There is something crazy going on inside Olivia's body. Her platelets were 32,000 on Tuesday morning. She received platelets that afternoon and this morning they are back down to 25,000. So she lost all of the goodies they gave her and then some. How annoying. Anyway, they want us to wait until tomorrow to come in and tank up so she will have a better chance of making it through the weekend without another transfusion. When I talked with the nurse this morning and asked why this is happening, she said there is some process going on in her bone marrow that is causing her to use up the platelets she has and that her bone marrow isn't producing any new ones. So, is this the leukemia? I would think her other cell lines would be low also (hemoglobin and white count). Is there something else going on? Who knows. I just hope we can get through the day with no major bleeding issues!
The GI doctor also called and rescheduled the impedance test for next Tuesday. As of now, we have the ENT appointment on Monday afternoon, the 24-hour impedance test on Tuesday/Wednesday, and then to the eye doctor as soon as we get discharged. She be a fun-filled week! Thank goodness for Grandmas and Grandpas! My mom didn't have school today in honor of good old Abe's b'day, so she is here hanging out and entertaining the kids. You would think I would try to be productive, but instead I'm just enjoying the company. I'll be sure to post sometime after we get home tomorrow.

More platelets

We just got home, again. We started out this morning with lab draws, visited with Dr. Al, and then got some platelets. Sounds easy enough, right? That was a 5 1/2 hour process. Granted, the platelets took 2 of those hours, but it still makes for a long day. Dr. Al said the same thing about repeating a bone marrow biopsy within the next month and if things have progressed, Olivia will have a central line put in and will start chemo. If things have improved, we'll continue with this "watch and wait" system. To be honest, I see her starting chemo. I don't remember her having this much trouble with her platelets last time around. She did get frequent blood transfusions, but not so much with the platelets. Maybe I'll be totally wrong and pleasantly surprised, but nonetheless, I think it's good to start preparing my heart and mind.
Brooklyn had an awesome day with Grandpa. They are getting to be pretty tight these days. Jack ended up taking the bus to the high school to hang out in Zac's office again. I'm sure the novelty of that will wear off before too long. Otherwise, it was a beautiful day for a drive and hopefully we don't have to do it again until Monday. We are going to re-check platelets locally on Thursday or Friday, and if they stay above 40,000, we should be able to stay put!

Addictions

I joined Facebook this weekend. Big mistake. It's definitely addicting. I had been warned, but thought I could handle it. Not so sure. I'm hoping that once the initial thrill of it all wears off, I'll be able to control myself. It's really not that different from blogging, I guess. It's sharing the everyday happenings with people out there in cyberspace. It sure makes searching for old friends and foes a whole lot easier;) However, if you see my kids wandering the streets in their underwear, chances are, I'm sitting in here on the computer.
Anyway, we head to Peoria tomorrow for labs at St. Jude. I'm interested to see what her counts are. She has been waking up a bit puffy in the mornings again. Nothing like last week, but still a little noticeable. She also had some bleeding from her mouth this morning, but her gums don't look any worse than last week, so we let it go since we see the doctors tomorrow.
We had a pretty relaxing weekend. Lots of laundry and cleaning. It's so sad how excited and motivated I get when I have new cleaning supplies. Pathetic.
I'll be sure to post when we get home tomorrow. Hopefully it doesn't turn into an all day affair...

56 degrees!

The car just read 56 degrees as I was taking Brooklyn to school! It's amazing how much the weather can change your mood.
Olivia had her 6 month IFSP and transition meeting today. It went very well. Can you believe she is supposed to start school in 6 months?!? We got to meet a couple of people from the school system and were able to see how much she has progressed with her speech, as well as developmentally and physically. She is doing awesome! Developmentally, in most areas, she was at the 24 month level! Go Livvy! She has really made some great strides in the last 6 months. It pays to stay healthy!
We went over to the pediatrician's office today to check her protime and saw the doc. I told her I needed another little pep talk about the G-tube. It worked. So, we are back on board with that, although it is on the back burner until we get some of these other issues worked out. God knew I was hesitant and just needed a little more time with this. When we got home last night, Zac said the GI doctor's office called and cancelled her 24-hours impedance study on Tuesday and said they would call back to re-schedule. We will still go over to St. Jude for labs on Tuesday, and then hopefully come home. We are also scheduled to see the cardiologist on Thursday for an Echo and EKG, but she had both done last week, so I'm hoping we can cancel that, too. It could actually turn out to be a light week. Can you only imagine?!?

Home again!

Well, that was easy enough. If it weren't for the drive, going to get platelets wouldn't be such a bad thing. We walked into St. Jude. Olivia's platelets were there waiting for her. They got an IV in her and let 'em roll! It ran over 2 hours and we came on home.
The first 45 minutes or so were less than desirable. I need to stock up on more entertainment for her if this is going to become routine. She wanted to get down and crawl around, but, well, that would be gross. So, we switched back and forth between my lap and the stroller. The nurses got her a new Dora doll that teaches her to say "Hello" and "Goodbye" in 4 different languages. Personally, I would be happy if she would learn how to say it in English, but I'll take what I can get. Anyway, Dora entertained her until it was time to go.
The doc popped by to see her and said that the platelets should take care of things and we'll get more labs on Tuesday. He thinks she would benefit from having her platelet count above 40,000 since she became symptomatic below 30,000. And just to think...normal is greater than 150,000. We're keeping our fingers crossed for an uneventful weekend involving no blood.

Anticipation.

Well, it's back to reality today. Olivia woke up with dried blood all around her mouth this morning. I assumed it was a tooth breaking through, but her upper gums were all bruised. I called St. Jude and they said to take her over to the hospital here for a CBC, but they anticipated she would need some platelets.
Her platelets are back down to 29,000, where they were on Thursday prior to the transfusion that she received on Friday morning. Transfused platelets stay in your system for 10 days, and today is day 7, so I assume they would be a lot lower if she hadn't had the transfusion last week. We were hoping they would have started producing on their own, but it's not looking like it (that is my opinion, not a medical professionals opinion). We are anticipating a call to come to Peoria for some platelets since they transfused at 29,000 last time. Maybe we'll be pleasantly surprised.

I'm leaving you with a gift: peace of mind and heart! And the peace I give isn't fragile like the peace the world gives. So, don't be troubled or afraid. (John 14:27)

That was quick...we are heading to Peoria. Keep you posted.

Kiddos.

I feel like all the posts lately have been nothing but good old medical jargon and biology lessons. Uck. I'm taking the day off from blogging about Olivia and her latest journey to fill you in on how sweet my two big kids are.
Today happens to be my birthday. The big 3-2. I woke up this morning to breakfast in bed made by Jack. He planned this all last night and could hardly get to sleep he was so excited. He woke up and went straight to the kitchen and made the most delicious Shredded Mini Wheats, oatmeal, a jelly sandwich, toast, chocolate milk, orange juice, and coffee. It was delivered to me on a cookie sheet with a little help from Dad. He was so excited and it was so sweet, but it was 5:15. Huh? So, I look at my dear, dear husband and ask how he could allow this to happen. He claims he tried so hard to stall, but ran out of techniques. I actually do believe that he tried, because the coffee was pretty cold ;)
So then the princess of the house came in with tears rolling down her face (a common occurrence these days) because she didn't make anything. And she only gave me one rock for my birthday and not 4. And she didn't help unwrap my new dishes. And she... You get the idea. So after Olivia's therapy this morning, Brooklyn and I spent at least 2 hours coloring together. We really don't get to spend much time doing fun things like that lately. It's really made my day special and it's amazing to see the difference it made in Brooklyn's day, too. I just wish the day hadn't started so early!

Another long day.

Talk about starting a series. We have had some really long days lately. We just walked in the door, so I may make this short and sweet and give some more details tomorrow, but here it goes...
We arrived at St. Francis at 7:45 this morning. Drew labs. Twice (no luck the first time.) Then to Radiology for the GI study. Olivia screams. 45 minutes later, the study is done. Then to Dr. Pearl's office. Wait. Wait. Dr. Pearl "now why are we doing this G-tube." Apparently there is no evidence of reflux on either study, so we will move on to visit the GI doctor and have a 24-hour impedance study done (more on this later).
Then to St. Jude. Wait. Wait. We meet with Dr. Al. Her counts are better. Hemoglobin 13.3 (because she had a transfusion on Thursday). White count up a little to 5.8 (that's good). Platelets at 40,000 (should be a little better considering she got platelets on Friday morning). The biopsy results from the hospital are back, but we still await the results from St. Jude in Memphis just to confirm these findings. But, we are basically back to where we were over the summer. She has MDS - RAEB (Myelodysplastic syndrome - refractory anemia with excessive blasts) What does that mean, you ask? Well, as far as severity, she's right in the middle. She has about 5% blasts in her bone marrow. 20% blasts is considered a diagnosis of AML (acute myeloid leukemia). Dr. Al can't imagine that this would go away, again, so for now we will watch and wait. She'll have labs drawn once a week for the next couple of weeks and she will get transfusions as needed. In 4-6 weeks, he will repeat the bone marrow biopsy. If everything looks the same as it does now, he wants to put in a line and start chemo. If by some crazy chance, this does resolve itself, he said he would have to make her into a case study and share her story with other medical professionals, because this is unheard of. He's not able to explain why it disappeared last time and then came back. He's pretty much as baffled as we are.
Good news - we don't have to go to Memphis for treatment. Olivia doesn't meet the requirements to be part of cancer research because of her other issues (oxygen, cardiac issues, etc...) I suppose there are blessings in everything.
Next, to meet with the GI doctor. He scheduled us for the 24-hour impedance study for next Tuesday. It doesn't sound pleasant, but it doesn't sound horrible either. We are starting to have a lot more questions regarding the G-tube, which I thought we were good with. More on that later.
All in all, I'd say it was a good day. We felt very comfortable with the information we received at St. Jude, which was our main goal for today. I'm sure there are many more details, but it's getting close to bedtime and we still have homework to do. Thanks so, so much for all the extra t's and p's. They were truly felt all around!

Wow.

I think God is really testing us this time. I'm very anxious about tomorrow's visit. I am hoping we are able to get some answers to our questions, however, we don't even know what questions to ask. I've spent a lot of time today researching MDS (myelodysplastic syndrome or pre-leukemia) and AML (acute myeloid leukemia) and I can honestly say I'm more confused. I'm understanding the biology and process of it all, but I don't feel any more comfortable one way or the other as far as treatment goes. It's so hard not to have a cut and dry answer. You would think she would either have leukemia or she wouldn't. I wish it were that simple.

Here's what I've gathered so far:

Olivia has MDS, however there are 5 types of MDS. We don't know which type Olivia has.

The doctor is saying that Olivia has MDS, and it may go away and then come back again (which is apparently what is happening now. She had it in May and it is back) or it will evolve into AML.

AML is an extremely aggressive form of leukemia, so the faster treatment is started, the better. Understood. But she technically doesn't have it, yet.

MDS can be controlled through frequent blood and platelet transfusions, but those pose certain health risks and it is not necessarily a cure.

Chemo treatments for AML are very aggressive, lasting from 6-9 months. There would be 6 intense cycles of chemo that would be given every 28 days or so depending on her health and her blood counts.

From what I understand, she could undergo chemo treatments now to get rid of the MDS, but there is still a high chance is would come back again.

And the think that gets me the most...an article I read states that "...the majority of patients, roughly 70%, never develop leukemia. In other words, MDS shortens life in some patients but not in others. Eventually 70 to 75% of patients with MDS succumb to either complications or progression to AML."

What?

Anyway, we are holding on to the fact that Olivia is feeling marvelous and looks great. The girls and I are going to stay with my parents tonight since Olivia has to be at the hospital at 7:30 in the morning. The boys are staying back so Zac and get Jack to school in the morning. The day starts with some labs, then to a GI study, then to meet with the general surgeon about the G-tube, and finally to St. Jude to hopefully get some more information. It would be great if the results were back from the biopsy, but we aren't getting our hopes up. I'll try to post as soon as we get home tomorrow night.
So, we are going to pray big tonight. We are going to pray that the doctors are able to give us some much needed information. We are going to pray for the strength and guidance in the decision making we have ahead of us. And we are going to pray for comfort and confidence in the decisions that we do make.

PS - the doorbell just rang and Olivia got the cutest "feel better soon" balloons from a teacher at the high school and her husband. How sweet is that! People are so wonderful. Thank you!