Friday, February 29, 2008

A very scary day...

So if this is the way leap year's go, every four years will be too soon.
Olivia gave us quite a scare this morning. She was working a little hard to breathe, so I was planning on taking her to see the doctor when they opened. She continued to get worse and stopped breathing momentarily and then started gasping for air. I called 911 and we ended up flying to Peoria. She continued to struggle, so they decided to intubate her (she is now on the ventilator). It's so difficult to see her like that, but it's definitely what she needs. She is resting comfortably with her PICU family completely sedated. She continues to be a mystery to all. The original diagnosis was pneumonia, but that may not be the case. They are testing for everything under the sun to find out what may be causing this. She still has a high fever which they are trying to bring down by keeping her room freezing, blowing a fan on her, and wiping her down with cold washcloths. Brrrr....
Her heart is handling this okay. It is causing some distress, but they aren't too concerned - just trying to keep it under control. They have given her lots of blood and plasma. She has more medicine pumps now than during some of her previous heart surgeries. She has 12-13 different things going in her IV's. They did put in a central line and an arterial line to help monitor her more closely.
The hematologist is very confused with everything and would like to go ahead with the bone marrow biopsy next week while we are there just to get all possible information.
We feel so comfortable with Olivia being where she is now. She is very stable tonight and all the machines are doing the work for her so she can get her rest.
A HUGE "Thank You" to Sara for letting us throw Brooklyn at you this morning. Both the big kids are with Grandma and Grandpa C. in Avon and don't even have time to talk to us because they are so busy!
Please pray and we will keep you posted. I'm sure we'll think of more details tomorrow after a good night's sleep.

Wednesday, February 27, 2008

Happy Half Birthday to Olivia!!

That's right! Olivia is 18 months old today! Here are some of the things we've done to celebrate today.

Olivia woke up at 5:00 am with a fever. I related this to her shots from yesterday, but then she started vomiting. So, it looks like we are celebrating with a bit of the stomach flu. Just when the house was starting to smell somewhat "normal" from our last vomiting marathon. Anyway, the poor thing isn't feeling well at all. I don't think I've seen a single smile all day and she's been fussing pretty much nonstop all day. What a way to spend the day!

On the bright side, so far I've caught all the vomit in a towel or blanket, so I haven't had to clean carpets, yet (I'm knocking on wood right now). Probably more than you all wanted to know, but I need to vent somewhere.

Oh well, this too shall pass. As long as it makes it way through the rest of the family and heads on out the door by the end of next week, we'll be good. That's when we get to head to bright and sunny Florida for Uncle Ty & Aunt Jen's wedding! We can't wait! Do you think Spring has forgotten us?

Anyway, I'll leave you with a pic of Olivia from last weekend. You really don't want to see a picture from today - she's not been very photogenic. Have a good day!

That's Uncle Bri avoiding the camera. How rude!

Wednesday, February 20, 2008

It's hard to contain the excitement...

I know you probably all lost sleep last night just wondering what exciting things we've been doing around here to keep us entertained in the evenings while Daddy is out of town. Well, your wait is over! Here's what we've been up to:

Brooklyn had her first experience with foam rollers. She thought she was pretty hot stuff. The curls didn't take, however. Her hair was still too damp. We still had a good time.

Then, we decided to make a new blanket for Brooklyn. Her favorite Tinkerbell blanket has gotten to be too small. It doesn't cover her whole body anymore! So, she loves her new Hannah Montana blanket and Jack has perfected his knots! A two-for-one deal! Olivia really likes the blankie, too!

We've also spent a little time trying to make it look like Jack has four arms. That didn't work so well, but they thought it was fun.

All in all, we are weathering Zac's absence just fine. Luckily, we are used to him being gone, so it hasn't really affected us too much ;) We still miss you, though!

Tuesday, February 19, 2008

Dr.'s appointments

Do you want the good news or the bad news?
I guess I shouldn't say it that way - in the end, I'm sure it's all good.
So, I took the girls to the cardiologist in Peoria today. When Brooklyn was 6 months old, she had a heart murmur and the pediatrician sent us over to the same Cardiology office we use for Olivia. They said to come back in 3 years, which was today. So, they did an EKG and an Echocardiogram on Brooklyn and she still has her murmur, but not one that is concerning - just your normal run-of-the-mill heart murmur.
Olivia had her lab work at St. Jude's again. Her numbers dipped down a little bit, but the doctor said that it was just fine. They stayed "stable" and at "an appropriate level for Olivia," so he seemed pleased. We'll just re-check in a couple of weeks. She also got her Fifth's Disease/Parvovirus results, which happened to be positive. My first comment was that I probably shouldn't have sent Jack to school with those bright red cheeks this morning, huh? However, I do think Jack's is just windburn and it's my understanding that once the rash comes out, the virus is no longer contagious. This diagnosis goes hand in hand with the rash Olivia had and the low blood counts.
The cardiologist did an Echocardiogram and EKG on Olivia and we are looking at another heart surgery. Boo Hoo! I thought we were done with these. Wishful thinking, I suppose. Anyway, she has something along the lines of Sub-Aortic Stenosis. Something is narrowing somewhere, but I haven't had a chance to look it up and learn about it yet. It is apparently more common in people who have had their A/V Canal repaired. Of course, we fit into this category. We seem to fit into all the categories, don't we?
Anyway, the operation would be another open heart surgery, but would be less invasive then her last 2 surgeries - more along the lines of surgery #1. The cardiologist will present her case to all of his collegues and they will help make a decision as to when would be the opportune time to do the operation. He doesn't meet with them until a week from Friday. So, we won't know a definite timeline until then, but he did mention sometime in the coming months. We do need to get her blood problems taken care of before going ahead with the operation.
So, I consider most of Olivia's stuff the "bad news," but when the operation is complete, it may help with her leaky mitral valve, which in turn, may help her pulmonary hypertension. As much as we don't want another open heart surgery and subsequent hospital stay, it could help things in the long run! That's good, right?
We are going to try not to think about it until we have a timeline as to when it might happen. It would be plain silly to dwell on it otherwise!
On a brighter note, we did get to go out to lunch with Grandma. She played hooky from school to help out at the doctor's. Zac is in Atlanta this whole week, so I needed some help. With Zac being gone, I've been trying to find things to keep the kids and I entertained each night. Stay tuned for pictures of our entertainment throughout the week! Ahh, the suspense!

Friday, February 15, 2008

Waterpark weekend

Last weekend we had planned a huge family outing to Great Wolf Lodge in Wisconsin Dells. We usually try to do this once a year and everyone from both sides of the family (Chatterton's and Trent's) go up. This year, the extended Chatterton's couldn't go, but we added my aunt and uncle to the mix. There were originally going to be 14 of us, but obviously Olivia kept a few of us back. I forced Zac to go so I could feel comfortable still sending the kids if there were any problems (no offense, family. I just didn't want you all to feel bad if you lost the kids or something!) Besides, Zac is a lot more fun than me when it comes to that kind of stuff.
Mom decided to stay back with me so we could take shifts with Olivia. If you haven't been to Great Wolf Lodge, I strongly recommend it. It's a great time!

So, here's everybody, minus Uncle Dave. I assume he's taking the picture -probably a good thing. I'm sure everyone appreciates me posting this picture - especially without written consent from everyone! My dad was in charge of pictures, and he only took a few so I don't have any more to share :(

Anyway, we have to do it again in the near future so we can all go. Olivia had gotten a new swimming suit and everything! Oh well - we still had fun once we got back to my parents house after being discharged Saturday night.

Girl's Night In!

FYI - this isn't really a picture of Olivia from that night. She didn't look that good! I just thought it was a cute picture;) Have a good weekend!

Wednesday, February 13, 2008

St. Jude's Appt.

Zac, Olivia and I just got home from our appointment at St. Jude's. Great news! Olivia's hemoglobin is up to 12 - which is right smack dab where it should be. Her retic. test was 3.7, I think. If I have it correct, normal is 1, so her bone marrow has kicked it into high gear and is producing large amounts of new baby red blood cells trying to make up for lost time!
Now, her platelets are still low, actually lower than when we left the hospital on Saturday. Dr. Al thinks it is viral related. It's possible that she has/had Fifth's Disease, but we haven't heard the results from that test yet. Her rash is also back on pretty much all of her body, but this is apparently typical of her diagnosis. It doesn't seem to bother her or the doctors, so we'll just look past that.
So, we go back to St. Jude's on Tuesday and have more labs drawn. If her numbers look good and her platelets start to trend up, they said we won't need to come back! If her platelets are still low, we'll continue to monitor them.
All in all, a good appointment! Thanks so much for all the prayers for her bone marrow to get busy, they obviously worked!

Sunday, February 10, 2008

Our smile is back...

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
Just thought I would post a picture so everyone can see just how Olivia is doing!
So, like I posted last night, Olivia has TEC - Transient Erythroblastopenia of Childhood. I found an article that explains this in my terms, so I thought I would pass some of the info along even though it may be repetitive of previous posts.
TEC is a condition when new red blood cells stop appearing. At first, children with TEC are otherwise well, but will lose about 1% of their red blood cells each day. Very gradually they become tired and pale. TEC is uncommon, but has been seen with increasing frequency over the last few years. It is most common in children between the ages of 1 and 3. It is thought to be triggered by a viral infection occurring 2 weeks to 2 months before the TEC. Our hopes are that Olivia's red blood cell production will recover spontaneously - usually within 30 to 60 days. In some children, transfusions are needed to keep them alive while waiting for this spontaneous recovery. Her reticulocyte count (This tells the amount of new red blood cells that Olivia's bone marrow produces) should rise within a few weeks, which is why we will have labs done weekly to see how her numbers are and see if she needs another transfusion. Her reticulocyte count was .1% on Friday night, or close to zero.
For those good with numbers, I'm including Olivia's counts below to give an idea as to where she was so it will help with updates in the future.

Labs drawn Thursday showed:
The "average" child:
White blood count: 5,000-10,000
Red blood count(platelets):140,000-450,000

White blood count: 4.3 thousand
Red blood count (platelets): 27,000
Hemoglobin: 6.5

I don't remember all of the counts after the transfusion, but I do know her hemoglobin was up to 9.2, which is good, but still on the low side which led to the 2nd transfusion. Her hemoglobin was actually as low as 6.1 on Friday night prior to being transfused. I think her platelets went up to around 55,000.
According to medical science, a person's white count and platelets should not be low when they are suffering from TEC, which is the only mystery here. After talking to all of the doctors who know Olivia well, Dr. Smith from St. Jude's came to the conclusion that she has always been a little on the low side, leading him to this diagnosis.
Now, Dr. Shah, the cardiologist actually thinks Olivia has suffered from TEC twice. Once now, and once when we were in for the RSV in December, which is why she would have needed the transfusion on Dec. 24. If this is the case, there may be other reasons why she continues to suffer from low blood counts.
Basically, we need prayers for Olivia's bone marrow to kick it into high gear and start pumping out those beautiful new little red blood cells! The weekly blood tests at St. Jude will keep us informed on whether or not this is happening so we can decide if further tests need to be done.
We will also see her cardiologist on the 19th, which will tell how her heart is handling all of this. Apparently, low hemoglobin makes the heart pump faster and harder. As of Saturday morning, we had prepared our hearts minds for a diagnosis of leukemia or aplastic anemia, as this was seeming to be the most likely cause. We know we are not out of the woods yet, but have learned that we need to take everything one day at a time with Olivia. We know we are just entering the beginning of the forest on this one, and that God only knows the path ahead, but we are totally okay with that.

Saturday, February 9, 2008

Yet another prayer answered...

We are actually out. Out of the hospital. A mere 36 hour stay. Olivia's getting better each time.
After a long 18 hours waiting for lab results, we were pleased to hear that Olivia has something called Transient Erythroblastopenia of Children (TEC). This is awesome! TEC is a condition where the bone marrow stops producing red blood cells. Olivia's levels were at .1% - her bone marrow was producing close to zero new red blood cells. This can be sparked by a child having a viral infection within a few months prior to the onset of TEC (explained by her RSV in December). It has also been linked to a response to Fifth's Disease, so they ran a test for that, but the results won't be in for a few days. It should correct itself in a month or two. We will come over to St. Jude's on Wednesdays for the next month to check all her levels and make sure she is starting to recover. If not, in about a month, Olivia will have a bone marrow biopsy to find more clues as to why her bone marrow isn't doing it's job. This sounds very unpleasant, but we'll cross that bridge it we come to it.
This is obviously great news! As of this morning, all of her labs showed no signs of cancer!
So, she received another blood transfusion today. She was pretty pale yesterday since she had no red blood cells, low hemoglobin, etc..., but tonight she is as red as a tomato! We were able to be discharged at 8:00 pm after a long day of waiting. Thank you so much for all of the phone calls, thoughts, and prayers!

On another great note - there's a new Chatterton in Pennsylvania today! Zac's cousin Ryan and his wife, Judy, and big brother, Christian, welcomed McKenna Grace into the world this morning!

I'll post more tomorrow as I'm sure I'll remember more details on Olivia!

Friday, February 8, 2008

A quick update....

We made it over to the appointment with Dr. Smith at St. Jude's. What a marvelous place. Everyone was so nice. They asked lots of questions and after assessing her gave us a little info. Apparently having low blood counts in the three areas where she is lacking can be a sign of leukemia or acute anemia. She did not show any physical signs of it being leukemia during her physical exam, which is obviously a bonus. Anyway, they admitted us for a blood transfusion and a whole lot of labwork - most I haven't even heard of, which is surprising. We are up in PICU in 4121 (home away from home - I think they should actually dedicate the room to Olivia since she has spent so much time there;) By the time we got up there and settled and they were able to get an IV in, it was time for me to head out to go see the big kids. Zac and my mom are with her now. She is in good spirits when she is awake, but is totally zapped from the low hemoglobin. She has had a few labs drawn and is getting her blood transfusion as we speak. It will run over 4 hours and they will re-draw labs. The dr. will then compare and hopefully have an answer for us in the morning.
Unfortunately, hematology is not something we are familiar with, yet. We are trying to learn what all the numbers mean, but it's a whole lot of numbers. Basically we are trying to rule out leukemia and then find out why her red blood cells aren't staying in her little body. Once that is determined we can begin treating it. The dr. said we should plan on being in for a couple of days. Little does he know, we are used to months!
We had a pep talk from Olivia's cardiologist, Dr. Shah - love that guy! He rattled off a million things that could be causing this and said he would get her fixed up.
Anyway - I want to play with the kids for a bit before bed. I am pulling the early morning shift and won't have access to a computer, but I will try to get someone to update when we hear anything.
I hope this gives a little insight. It's not much, but it's all we really know right now.
All in all - the kids are good, we are good with all of this, and most importantly, Olivia is in great hands - literally.


They want us to go over to Peoria today so we are meeting with Dr. Al. at St. Jude's at 1:00. We'll let you know if we find anything out.

I might just be losing it...

When I started this blog, it was for the obvious reason of keeping everyone up to date on the happenings in the Chatterton household. A secondary reason was as a mental/emotional outlet for myself. Once I write something down, I can deal with it so much better. So, for those of you who know me well, you will know that once this post is said and done, I will be a new person and be able to put things into perspective. I just need a reality check.
Okay, so Olivia has been "sick" for almost a month. She's either had a cold, been congested, or just not herself. When she's congested and eats, most of the time it results in vomit. I've been up to my elbows in puke for a month now. Our house smells. I smell. She smells. It's not pleasant. Rotten milk is the most disgusting smell in the entire world.
She doesn't sleep well, she doesn't eat well, she doesn't poop like she should, she doesn't play as much, she doesn't smile as much. I am so missing all of these things. We have spurts of normalcy, but they are few and far between.
Zac is going through a "busy season" at school, so is home for about 30 minutes a night if we are lucky.
Yesterday, I took Olivia in for her normal monthly labwork. The purpose of the labs is to check her liver function. One of her previous medications can cause severe liver damage, so we watch it closely. We are totally late on getting this done, but with her not feeling well, I wanted to give her a break from needles if possible. Anyway, I was feeling pretty good about the day. I called some family members and we all came to an agreement that she needed her milk thicker than what it already was. No problem. We were puke free for about 12 hours. Sure, she was drinking milk close to the consistency of pudding, but if she kept it down, who was I to complain?
I also decided to call our pediatrician to have her get me the results of the labwork. The labs are done for the cardiologist, but the pediatrician gets the results and looks at them a lot faster than the cardiologist. I was just curious about any type of infection or dehydration.
So, we are having this good day. I think we have it all figured out. Dr. L calls with the lab results and all her blood counts are really low. It's looking like she needs a blood transfusion. Dr. L will call and consult with the cardiologist. Riiinnnngggg... Dr. L calls back. It's the concensus among the doctors that Olivia see a hematologist to check everything out. Because she had a blood transfusion on Dec. 24, her levels shouldn't be so low and kids with Down syndrome are more likely to contract blood related illnesses, such as leukemia. However, Dr. L said she is NOT showing any signs to lead her believe she would have leukemia.


It's funny how a word can be so scary. Last week I was complaining because she wouldn't let me put her down. Now all I want to do is hold her. We were told Olivia had Down syndrome and didn't blink an eye. We were told she would have open heart surgery and didn't blink an eye. We were told her lungs may slowly shut down if she didn't respond to her medications and didn't blink an eye. How can one little word like that make a person lose it? I'm sure it's just because it's not something we know. There is very little cancer amongst our families.
Now, I realize we are totally jumping the gun on this. There is absolutely NO reason to believe that she may have leukemia. Even if she did, statistics show that Down's kids actually respond better to treatments and once they are in remission, apparently it never comes back. It's still scary.

Psalm 139:13, 14 – “For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”

A welcome reason for all of this would be that she needs a swallow study done or has some sort of gastrointestinal thing going on and all her numbers are low because she throws up so much. I'm going to pray that my mind can stay focused on this possibility until we see the hematologist.
The cardiologist will call today with the appointment date/time. I'll let you all know when that will be.
So, as for me losing it, my mom will say I am entitled, my best friend will say it's about time, and my sister will be thankful for the break. See, she is the emotional basketcase (no offense, sis!) in the family and she usually does all the emotional stuff for everyone.

“And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.”- Philippians 4:7

Update: after reading through this, I am already feeling at peace with all of this. The reason we never blinked an eye is because we put every ounce of Olivia in the Lord's hands from the day we found out she wouldn't make it into this world. I guess we were just doing so well, I had forgotten Who was in complete control here.

"See, I have engraved you on the palms of my hands;"
Isaiah 49:16

Have a GREAT day!

Monday, February 4, 2008

An eventful "Wii"kend

What a big weekend!
It started Friday with a sick kid. Jack woke up with an upset tummy, so he missed school. This was devastating. We were scheduled to host a Bible study group and Jack was the most upset that his friends weren't going to be able to come over. We just didn't want to be responsible for infecting the whole community with a virus, but he just couldn't understand this. By about 10:00 am he was fine, which made me feel awful for not sending him to school. I really did feel like we were playing hooky.
Anyway - the kids and I went to Dunlap for the weekend. Zac had class so he wasn't able to join us:( It's actually my b'day weekend and we still celebrate with birthday parties in my family. Doesn't matter how old you are - there's still cake and presents in the Trent family! It just so happens that my b'day always falls on or around Super Bowl Sunday, so I have to share it with all the greasy football food. No complaints here!

We opened presents early so everyone could enjoy the new Wii! I'd asked for a Wii for Zac and I for our birthdays since they are only a month apart. He doesn't like video games, but I've always been an addict. Jack and I just sit around and play our Gameboys quite often. It really is a sickness. Needless to say, we spent most of the weekend on the Wii. The whole family loves it and I even got some "family" games to go with it. The kids caught on quickly.
Saturday night was a big event. My brother-in-law, Brian, and I took Brooklyn and my niece, Emmy, to see the Hannah Montana concert on the big screen at the movie theater. They were so excited and got all decked out for the occasion. It was entertaining when I took the girls to the bathroom and we came back and Uncle Bri was singing to the Jonas Brothers with his totally cool 3-D glasses on! Good times had by all.
Olivia had her picture taken. I needed a new one of her since her last one was soooo... long ago. She wasn't so thrilled about this. Normally, she smiles whenever she sees a camera. Not so much this time. We didn't get one smile. Oh well, they still turned out okay.

The Super Bowl was fine. I never watch it until the end - which was actually good this year. We always just play with the kids while the football fans watch the game. We had quite a spread and especially enjoyed dessert. Emmy made me a Princess Cake from her Princess cookbook! I thought I had a picture of it, but I guess not.
Everyone weathered the weekend okay. The snowstorm kept us in Dunlap Sunday night, so we got up at 5:00 this morning and drove back to get Jack to school. The girls are both napping, so I should probably spend some time enjoying the peace after a long weekend. Wait until next weekend - There are 14 people from the family going to Wisconsin Dells to the Waterpark - should have some good pics from that so be sure to stay tuned...