Wednesday, April 30, 2008

A free moment

Both girls are napping, so I have a few minutes to update on Olivia's discharge, surgery, etc...
She is so unbelievably happy to be home. I wish the doctors and nurses could see her. The second she hit the floor, she was crawling all over the place, smiling, playing with the kids - just having a good old time. She's eating pretty well. Solid foods are still going better than liquids, but I think she has caught on to the fact that I put her meds in the bottle. She's still doing okay, though. She doesn't have any new medications, so it wasn't as stressful to come home this time. We still haven't gotten our new oxygen set up, but they should be calling today.
We talked with the cardiologist's office yesterday and "the group" decided to wait about 6-8 weeks to take her in for her heart surgery. They are going to concentrate on the subaortic stenosis and possible take a look at the mitral valve again. Dr. S. said he will eventually replace her mitral valve (once it's beyond repair), but not at this time. Once that is done, she would have to continue having surgeries as she grows to keep up with the size of the artificial valve. Obviously, we had hoped to have the mitral valve repaired, not replaced, but if it will keep Olivia's heart pumping away, we'll take it. Like I said, this won't be during the next surgery. They'll hold off as long as possible.
So, basically we are going to make the most of our next 6-8 weeks at home by keeping everyone healthy, healthy, healthy!! There are lots of things to get done before another hospitalization. The kids will get to finish up school, Jack should be able to finish Star Camp at school this summer, we'll get Brooklyn's b'day celebrated, and most of all, enjoy as much family time as possible!

Tuesday, April 29, 2008

Quick update

We're home!
We got home around 12:30 this afternoon. Olivia is super happy to be home. So am I for that matter. This is just a quick update. I have two kids that are begging for attention, one in particular. She informed me that I am never, ever allowed to go anywhere without her again and, for the most part, she hasn't left my lap since we've been home. It could be a long evening.
Anyway, if I'm allowed, I'll update more details later.

Monday, April 28, 2008


The doctors just finished up with rounds this morning. Dr. T. said that if Olivia has a good day and eats well today, she can go home tomorrow!


This totally threw me for a loop. I wasn't expecting that at all. Now, she does have to take her fluids today. She's been eating solids great, but not so much on the milk. We haven't given her a real shot at it though. So, I'm pushing the fluids today and she's already taken 3 1/2 ounces! I'm only letting her have about an ounce and a half at a time. So far, no gagging, coughing, or puking! Yeah!

Anyway, we discussed why Olivia isn't keeping her sats up. Dr. T. thinks that she is occluding her airway. Because of her floppy airway and the fact that she was vented for an extended period of time or just a "sore" throat could cause this in general. I was thinking the exact same thing, so I'm excited that we are on the same page here.

She did wake up with hives this morning. We can't quite figure out where that might be coming from, but they aren't treating it unless it starts to bother her. They talked about doing Benadryl, but the way she is, they are afraid of what kind of reaction she may have. From Benadryl. See how tricky she is?

They are also trying to get us set up with a high flow oxygen system at home. This will allow her to get more pressure from the flow of the oxygen to help keep her airway open. It will, of course, be more for us to learn. She would also have different oxygen (liquid oxygen) that we would travel with.

Regardless, she is doing great. We haven't heard from the cardiologist about what the thoughts on surgery are. Knowing our luck, he'll come in and say "let's do it tomorrow." So, we obviously aren't getting our hopes up that we will be discharged, but it's nice to know she is doing so well.

Sunday, April 27, 2008

Just hangin' out

Olivia is having a really good day. She has been very sleepy, but happy.

She's done with her antibiotic and they have changed her last IV medication to oral. She had to have another IV put in - this time in her foot. The one in her hand went bad, but she is happy to have the use of her hands back! It makes it much easier to eat and play.

She just finished supper - a rubbery cheeseburger, hard carrots, soggy fries, and pears. Not that I'm complaining - I don't have to eat it. It's just that she finished eating well over a half an hour ago and she's still gnawing on some remnants of the burger.

Anyway, we are getting ready to settle in a watch the finale of Big Brother 9 (one of my guilty pleasures). I can't get enough of reality TV. I have no life of my own outside of the hospital, so I become completely engrossed in others' lives. Until tomorrow...

Saturday, April 26, 2008

Food, glorious food

Since Olivia wasn't tolerating her liquids well, we decided to try her on some solids. So her wonderful nurse today ordered some mac 'n cheese, tater tots, peaches, and a roll. Yummy! She loved it! She ate a whole bunch and even had some milk to go with it. She didn't even cough!
Then for dinner, an entree of ravioli, mashed taters, applesauce, green beans, and jello! I never make a balanced meal, so she's in heaven! Another yummy dinner with no problems! We're heading in the right direction.

She did move back over to high flow for the humidity. One second her sats are 80 and the next second they are 98. Who knows? She is something else, that's for sure.
I think she's really getting bored of this place. Nothing a trip to Toys R Us couldn't solve. So, now she has new toys to play with, some clothes to keep her warm, and some new movies! She is super excited!

It's definitely fun to watch her play.

Musical chairs

Olivia's having a really good day so far. She has managed to stay off of high flow for now. She is at 4 liters off the wall. She has gotten as low as 3 which is where they would like to have her. Otherwise she will go back to high flow just to have the extra humidity and avoid having her nasal passages dry out.
She has also been able to keep down some applesauce, jello, and 1 1/2 ounces of milk! This is awesome. We really need her to pick up on the calories so she can get more energy. Her lungs are still looking better. There is a little bit of junk in there, but for the most part, she's getting better. She is still having a little trouble keeping her sats up, which could be related to the junk in her lungs or her pulmonary hypertension.
Regardless, she is feeling much better all around. She was all over her crib this morning. Flipping around, talking, playing, smiling like crazy, etc... It's good to see her moving around so much.

We've moved rooms, again. It's like musical chairs up here. You keep moving and moving, but once you don't have a room, you get booted downstairs or sent home. We'll take the latter of the two if it comes down to it. I'd say that's the winner!
Monday is the day the doctors all have their cath conference. They should be discussing Olivia's case, so hopefully we'll know more then about the surgery plans. I'd love to be able to get the kids out of school and then come back for it, but God will ultimately put his plan into action and pick the right time for all of us! He never gives us more than we can handle, and He definitely helps us handle what we are given.

Kindergarten Student of the Month!

That's right. Jack was the Kindergarten Student of the Month for April! We were able to go to the flag ceremony yesterday and see him get recognized, along with the 1st, 2nd, and 3rd grade nominees, in front of the entire school. He was so proud! His teacher nominated him because he is a very good listener and is very kind to all of his classmates. He will get to go have a free lunch buffet at Larry A's pizza (the sponsors for the Student of the Month) and he will have his picture hung in the school and the pizza place! He's so excited.
Congratulations, Jack! We are so proud of you!

Friday, April 25, 2008

Friday news

It's been a relatively smooth 24 hours for Olivia. She was able to move over to oxygen off the wall at 4 liters. They want her sats above 90 and she's been hanging out around 86-89, so I wouldn't be too surprised if she were to go back to the high flow. Otherwise, her test came back from yesterday and her adrenal glands work just fine. So, that's good news. She isn't eating very well, but we have still avoided a feeding tube so far. Her IV went bad today (I'm surprised it's lasted this long) and she is such a hard stick that I am dreading them putting another one in. They'll probably wait until she wakes up, so I'm trying to talk her into a really long nap.
She was just up and playing a few minutes ago and was just smiling away. She was playing with all of her toys, pointing at all the pictures in her book and talking up a storm. She got a little mad when I took away the stethoscope she was chewing on. Otherwise, claps and high fives all over the place - definitely feeling better. She is still very, very sleepy, but I think it's her coping mechanism. She'll wake up when they say it's time to go home.

No news on the heart stuff. They are still researching, I assume.

So, I was able to go home last night and spent the night playing with the kids. I had a great reason for going home, but you'll have to be in suspense until I have my camera so I can dedicate a whole post to the "event" with pictures!

Thursday, April 24, 2008

Making headway

Olivia had a really good evening and night last night. She got back down to 3 liters on her high flow, so she was able to try eating again. She loved it, but threw it all up afterwards. We finally experimented with the bottle and I made it just like I do at home. She kept down 2 ounces around midnight and we were able to avoid a feeding tube (so far)! Hooray! The nurse fed her throughout the rest of the night and she kept it all down. I gave her another bottle this morning and she did okay - just lost a little bit of it.
We had a fun evening. Eric and Sandy (friends from G-burg) came over and we got to go out to eat and get a break from the boxed lunches at the hospital. Thank goodness - it was egg salad sandwiches. Yuck!
Anyway, they have been slow on the rounding this morning, so I don't know the plans for the day besides checking her adrenal gland function. I always have a hard time deciding whether it would be better to have a good or bad report on things like this. If her adrenal glands aren't working, then at least it would answer a few questions. If it is working, then we are back to square one, yet it does rule something out. Ugh.
All of her numbers look awesome this morning and she is taking a great nap. We'll continue to pray for good eating and peaceful breathing today!!!

Wednesday, April 23, 2008

A whirlwind of a day.

So, I'd love to say we've made a lot of progress. In some ways we have, but in others - not so much. I'll start with yesterday afternoon. Olivia has to be a 3 liters on the high flow oxygen to be able to eat. We were trying everything in our power to avoid another feeding tube. The nurse finally turned her from 6 liters down to 3 just to see how she handled it. Her oxygen saturations hung out in the 80's for most of the afternoon. So, she went back up to 6 liters and up a little on her nitric oxide again. However, they have avoided the feeding tube so far.

Throughout the night, she was able to get to 4.5 liters high flow and down to 1 on her nitric.

This morning, they decided to turn off the nitric, get her to 3 liters and let her eat. This happened all at the same time. She threw her pacifier across the crib and sucked down a couple of ounces. She has a lot of upper airway congestion, so she coughed up a bunch of junk. Afterwards, she looked the most comfortable she has in a long time and fell asleep very peacefully...then, her sats dropped into the 60's. So, back up to 8 liters, chest x-ray, blood work, etc... was done. Once she was done with the lab stick, she sat up, played for a while, and smiled at the nurses. Her sats jumped to 100%. Who knows? She is so confusing. She is still at the 8 liters, and taking a good nap. Her chest x-ray may have looked a little better that this morning.

The cardiologist popped in. He is going to look into how long you have to wait after the flu and pneumonia before putting a child on the heart and lung maching during a surgery. Once he finds this out, he's going to let me know. The whole team of doctors will discuss her on Monday and make a plan for surgery.

She is also going to be getting some tests done tomorrow to check her adrenal gland function. There is a test they did this morning that shows low cortisol (the hormone that her adrenal gland produces, I think) She will be given an IV drug tomorrow and they will then draw a cortisol level after 30 minutes and again at 60 minutes. If her level continues to rise, her adrenal glands work just fine. If not, they'll do some more tests.

That's about all that's going on so far today. A few steps forward and a few steps back!

Tuesday, April 22, 2008

I think I got it.

So, I just visited with Dr. Al from hematology and I really think I understand the blood stuff. So here is the scoop.

They are confident that her bone marrow is healthy. They are confident that it's not an immune disorder. There is definitely red blood cell breakdown. One of the doctors was able to put the possibilities in to my terms. So, picture a jelly doughnut. The jelly doughnut is a red blood cell. The doughnut and the jelly are filled with enzymes. One possibility is that some of her doughnuts may be shaped like a ball instead of flat. Another possibility is that the enzymes in the doughnut are abnormal. The final possibility is that the jelly is abnormal. So, a lab test can be conducted to determine which of these three possibilities Olivia has. However, each of these possibilities branches off into many more possibilities. It's just a matter of breaking it down to the specific thing that causes her hemoglobin to drop. There is no treatment. We will just need to watch for signs of anemia, avoid stress and illnesses (easier said than done, obviously), and then be able to manage her anemia. It may require frequent transfusions, but not necessarily. There is no rush to finding a source. It takes 2-3 months for borrowed blood to completely leave the system. If they do her surgery in a month, we will obviously have to wait a while to do any labs. So, we are going to put the blood situation on the back burner for now and concentrate on her heart and lungs.

Sorry about all the info about the blood. I just wanted to document it before I forgot. It may be rather repetitive.

I got a smile!

Good report and good goals for the day. I came in this morning and Olivia was just waking up. She had a great night. They had to pull her TP (feeding tube). It was causing her to gag and vomit, so the nurse practitioner finally pulled it. Then she ended up sleeping on through the night. Once she woke up a little bit, I sat her up and she clapped and smiled at me!! Woohoo!!
She definitely looks much better and her numbers are reflecting that as well. So, the goals for today are:
1. Get her nitric oxide down to 1 by tomorrow morning.
2. Get her high flow down to 4L by this evening.
3. If goal #2 gets met, then try to feed her and avoid replacing the TPT.
4. Get labs drawn.

So, mom's interpretation of the bone marrow results weren't too far off. There are no signs of abnormalities in the bone marrow itself. The bone marrow is healthy. There may be abnormal red blood cells in the blood itself. So they need to run some labs to determine if this is the case. This can't be done until she has been transfusion-free for a month or two.
It seems to me that everyone is in agreement that Olivia will probably go home for 3-4 weeks and as long as she stays healthy, they will do the heart surgery then, however, this is all just my speculation.
Her chest x-ray looks better and she is still receiving her antibiotic. All cultures have looked good, as well. So, pray for all our goals to be met today and we'll be heading in the right direction!

Monday, April 21, 2008

Bone marrow results

Dr. Al. from hematology came up and shared some of the results from the biopsy. I didn't speak with him personally. My mom talked with him and relayed this info to me.
He is fine with the platelet count, but wants to get to the bottom of the hemoglobin problem. So, here are his thoughts as to what the possibilities are:
1. There is friction on the cells from a surgery.
2. There are some abnormal cells (I was under the impression that her cells were not abnormal, but I'll have to discuss this with them)
3. The inside of some of the cells are abnormal.
It's my understanding that the treatment of any of these would be frequent blood transfusions. Also, there is a test they've been wanting to do, but there has not been enough time between transfusions to do it. The test would be able to give them a bit more information. Hopefully we can go a couple of months without any transfusions, and then they should be able to do this.

Otherwise, it's still up in the air about the cause of her current symptoms and what to do to treat them. Once all the doctors are able to get together and form a game plan, a decision should be made. It will be interesting to see what they all come up with!

Olivia has definitely slowed down on the breathing and is doing a bit better. She was awake for about 5 minutes and actually considered playing and seemed alert and aware of her surroundings. We pray things continue to move in this direction.

Monday, Monday

Olivia had a pretty good night. They were able to wean down her nitric oxide to 20 and will continue to wean it over the next 24-48 hours until it is off. Everything is still up in the air as to what is going on with her. Is it her heart? Is it her lungs? What about her blood? Is it related to the medication mess up? Still effects from the sedation? Who knows.
The intensivist mentioned talking to the cardiologist about doing her next heart surgery sooner than later. He was also going to consult with the hematologist about the biopsy results. They are supposed to be back this afternoon sometime.
They were able to draw her labs yesterday (finally) and again today. Things seem to be hanging around normal for her. The plan is to insert a feeding tube today so she can get some food in her belly. She is still working pretty hard while breathing, but her lungs have sounded clear. So, today we will just hope for some answers. I'll let you know if we learn anything exciting!

Sunday, April 20, 2008

The Bad Day - revisited...

Alright. I think I'm ready to blog about what I am lovingly going to refer to as "The Bad Day." So, I've mentioned the medication problem from yesterday. This was obviously something we weren't really happy about, but at least the cardiologist caught it before something worse happened. Also, it's something that can be fixed.

The big problem of the day started after all of that. Olivia was having trouble keeping her oxygen saturations up. The fact that she has Down syndrome and the fact that she was on a ventilator for 25 days earlier this month both contribute to a floppy/sensitive airway. Anyway, to open her airway, I have always put my hand under her chin and lifted her neck to help her "open up."

So, our nurse came in a told me that Olivia does not have an airway issue and that I should not put my hand under her neck to open her airway. If there were an airway problem, the doctors and nurses would hold her neck up. It's stressful to be up here and we should just support Olivia by loving her and reading her stories. Let the doctors and nurses do their job.

I informed "nurse" that I was instructed from the day she was born to put something under her shoulders or neck to open her airway. That is the only way they were able to keep her sats up Friday night when she was having difficulty. I did find it entertaining when "nurse" said that I should let the doctors and nurses do their job, because the reality is, they hadn't. This was not okay. We have spent so much time up here and have always trusted each and every doctor and 99% of the nurses. They have always respected our thoughts, questions, and opinions. They have asked us to help on many occasions with Olivia's care. It has always been clearly stated that they encourage the parents to take an active role in their child's care. We have always been able to do this. Why not with "nurse." Needless to say, I lost it.

I never lose it. Everyone up here assumed it was because of the medication screw up and that I was stressed. I am not stressed. I'm over the medicine thing. We have always handled every critical moment Olivia has had with the utmost faith in the doctors, nurses, and, of course, the Lord. I apparently am not, however, able to handle someone telling me that I should not care for my child in a certain way.

Anyway, I won't go on. I just needed to get this off my chest. I feel so much better now. Have a great day!

Good mornin'

Olivia did great through the night. She is still very, very sleepy, but when she does wake up, she is much more perky than yesterday. She is peeing like crazy, which is good. It's gets the extra fluid off of her lungs. There have been no changes made, but since she has stayed stable for a good 18 hours or so, I imagine they will plan to try to wean her oxygen down today so she can eat.
The other goal for the day is to get some labs drawn. They were unsuccessful yesterday with getting any blood, so we'll try again today. It's hard to see her being used as a little pin cushion, but if she would just get some better veins, this wouldn't be so difficult! Anyway, we are praying for a better day today. Yesterday was a bad, bad day. So, we are glad it's over and we have a whole new day to look forward to! I'll probably post again after rounds if there are any big plans for the day.

Saturday, April 19, 2008

Afternoon update

Olivia is still hanging in there. There was quite a mishap that was discovered today. Somehow there was a computer/nursing glitch and all of Olivia's medications weren't recorded upon admission. She has missed 3 of her main medications since we've been here and it has caused this setback. This has been very hard to swallow for us, but we totally understand that mistakes happen. It's something that they are working on correcting and she'll be fine once her body gets adjusted. It's always good to have an explanation when things start to go downhill, but to know that we're at a place now that we wouldn't have to be is definitely not fun.
Anyway, she'll be fine and the doctors and nurses will fix her. They always do. Please just pray that we can continue with our patience and understanding that we've always tried to have to help Olivia get through these things. We have always been able to be so strong with everything. Today's just been a hard day with a lack of important communication. I think we are all on the same page with everything now and things should start looking up!

Night shift.

Olivia slept great through the night. They didn't do too much to her. They drew some labs and did a chest xray. The xray was unchanged and some of the labs clotted on the way to the actual lab, so they will try to re-draw today. They just can't find veins on her. She's always been a very hard stick, so they are having trouble drawing again. Anyway, today she is still working a little hard and is acting pretty sick.
So, here's what's on tap for today:
1. Start her on nitric oxide to stint open her lungs and help with her pulmonary hypertension.
2. Find a vein and draw some labs at some point.
3. Do an Echocardiogram to check her cardiac output.
4. Start some stress doses of a steroid. She was on a steroid at home and it was just stopped on Tuesday. This may all relate somehow. We'll cross our fingers that this helps.
5. Hopefully we will be able to wean down her oxygen a little bit. They didn't even attempt it overnight.
6. Get her in a stable position respiratory-wise.
7. Get the sunshine to come back. Where'd you go?

So, we've started attempt #1. The nitric oxide is helping open up her lungs. She is improving her oxygen saturations as I write this.
We'll keep you posted.

Friday, April 18, 2008

Olivia's antics

Olivia was doing great, but then decided she didn't want to do that anymore. Her sats, blood pressure, and heart rate dropped again. The consensus is that she is having a strong reaction to one of the sedatives given for the bone marrow biopsy. She is just now coming out of it and starting to wake up and move around a bit. It was a nasty couple of hours. She is getting a transfusion as we speak and that always makes her feel better.
Dr. Smith called from St. Jude and said so far everything looks good from the bone marrow stand point. There is no cancer and her bone marrow is responding well. So, most likely it's all related to an infection of some sort. They'll have a full report sometime next week.
So, I'm loving this internet access at the hospital. You all are going to get so tired of me bloggin' every 10 minutes!

Be Drug Free.

Well, Olivia handled the bone marrow aspiration like a pro. It took about the same amount of sedation as it would take to knock out a large elephant to get her asleep, but once that was accomplished the procedure went very smoothly. She did drop her sats, heart rate, and blood pressure very quickly when the sedation hit her, but they were able to give her some fluid and increase her oxygen to get her to come back up just as fast.
Right now, she looks like the poster child for a reason to stay drug free. Her eyes are glazed over, she's pretty combative, and she is just wavering her little head around. It's really pretty crazy looking. Anyway, they said her sedation could take a couple of hours to completely wear off.
The hematologist from St. Jude seemed pleased with the samples he was able to get. He was not able to get the actual spongy part of the bone marrow. After two unsuccessful attempts, he said he was comfortable with what he got. He will have some information tonight, and the rest will take a few days to a few weeks. We should be able to find out if the blood cell breakdown is happening within the bone marrow or if it is being caused by something else in her body by tonight. Anyway, she's seems to be doing well and we are anxious to get any results to see if we can figure stuff out. They are stll throwing around the possibility of leukemia, but we'll have to see. It could be anything - this is Olivia, you know!
Anyhow, thanks for always keeping us in your prayers. Things always seem to happen so fast around here.

Hospitals, bone marrow, and earthquakes, oh my?

First off, I'm not updating from home. But, the hospital has gone wireless! Woohoo! My dad was kind enough to run his laptop in to the hospital so I have something to do while Olivia sleeps! This is unbelievable! I'm lovin' it.

Anyway, Olivia is going to stay for the weekend, most likely. The intention was to send her home today, but her blood counts are down again. Her platelets have gone down again as well as her hemoglobin. So, they have decided to go ahead with the bone marrow biopsy that was put on hold during our last hospital stay. They are doing the procedure at 3:00 this afternoon. They will give her lots of sedation through her IV and numb the actual area for the aspiration. It's a bedside procedure, but is supposed to be very painful. Then she will get some packed red blood cells afterwards to boost her hemoglobin up. Hopefully, we will be able to get some answers as to why her blood counts continue to do this. Zac is on his way so he can be here this afternoon.
Otherwise, Olivia is being treated for pneumonia. She is happy and playful - reading tons of her books and just having a great time here in the PICU!

So how about those earthquakes?

Thursday, April 17, 2008

You'll never believe this, but...

We're back in the hospital.
Olivia has had such a great couple of weeks, she didn't want anyone to think she was in the clear or anything. Anyway, this afternoon she was acting just a little funny. To be perfectly honest, I thought she was acting as though she were constipated. Knowing that she had been pretty "regular" lately, (I know - this is too much information) I figured I'd take her in to the pediatrician.
Better safe than sorry.
Of course, I never thought we would be heading to Peoria. Especially by helicopter. Again.
So, we are in the PICU at St. Francis. Again.
She has a slight fever, but other than that she is doing great. Her chest x-ray did show a tiny bit of pneumonia, so she is on an antibiotic. The intensivist said he would keep her overnight just because he doesn't trust her. So, if all goes well, it should just end up being a sleepover. She was completely happy and playful this evening. Her fever was coming down all on its own. They did increase her oxygen a bit, but I don't think that would hold us back. We'll see what tonight and tomorrow brings.
Hopefully the next update will be from home.

Wednesday, April 16, 2008

Check out all the pics!

Well, it's was a big weekend, and has started out as a big week as well. There seems to be lots happening at the Chatterton household, so thought we should share all the news!

Olivia got another tooth in! That leaves only one left to get until she starts to get her two-year old molars! It just so happens that the one missing is one of her top front teeth. Sorry you can's see the teeth in this picture. It's hard to get a toothy-grin from her. One of these days.

Along the same topic - the Tooth Fairy paid us a visit again last night. Jack lost his 4th tooth! It wasn't really all that loose, but he was trying to bite apart a couple of Legos and the thing just flew out. It was pretty traumatic for a while - lots of blood. Once he got over the initial shock, he was proud as can be!
The next bit of exciting news is that it was finally nice out today! Has Spring finally arrived? It reached about 74 today, and we took advantage of the weather.

Olivia hasn't spent much time outside in her life. If you take away trips to and from the car, it has literally been since last fall. She was so excited to breathe the fresh air and take in all the sights.
It was, however, rather windy!

The kids were also excited to have her outside with them.

What's Brooklyn pointing at, you ask?

Why it's none other than our monkey boy.

Can you believe that kid?

Anyway, Olivia had an appointment at St. Jude's today for some lab work. Her numbers looked great, besides a pretty good drop in her platelet count. No one was concerned about it. We'll go back for more labs in about a month!
High-fives for the great news of the day! Enjoy the rest of your week!

Thursday, April 10, 2008


I often wonder if all of Olivia's happenings have damaged the kids. I worry most about Brooklyn. She was just over 2 when Olivia was born and Olivia has spent approximately 178 of her 592 days of life in the Children's Hospital of Illinois. Brooklyn definitely loves her little sister. A lot more than we would like sometimes.

So the reason I question her well-being through all of this is because of her response when we have gotten the mail over the last few days. We get mail from the hospital quite often. When she got the mail today, she knew exactly who this envelope was from: Her response: Look, we got mail from Olivia's hospital! Now I know she can't read, yet. Most children do recognize signs and symbols and can technically "read" them according to Jack's kindergarten teacher. Most kids, however, know McDonalds, Burger King, Subway, HyVee, WalMart and so on.

Yesterday, Olivia got a package from her Life Flight crew. She received her 2nd postcard wishing her well and another Life Flight T-shirt that may fit her when she's 6 or so. Anyway, Brooklyn opened it and instantly knew it was from "Olivia's helicopter."

Granted, Brooklyn had seen the shirt once before, and she did get "exchanged" between people at the hospital every once in a while, but does it really constitute these being her first "reading" experiences - "Life Flight" and "Children's Hospital of Illinois"?

Anyway, I'm sure she'll be fine in the end. Who knows, maybe she'll end up going into the medical field someday and be able to support the rest of us. For the most part, she's a happy child. I suppose that's all that matters. I do worry about the fact that she has such horrible mood swings at the age of 3. We need to start searching for some long lost relative that thinks she's super cute, so we can send her there during her teen years. Then again, maybe she's just getting it all out now.
It never hurts to think positive, right?

Monday, April 7, 2008

My apologies...

First and foremost, I apologize for my lack of blogging over the last week. Now that we are home, you would think I'd have all the time in the world! So, here is a brief recap of the days since Olivia has been home:

Thursday - we had a good day. Olivia's days and nights were totally messed up and all of her new medications were totally throwing things off. It would take about 45 minutes total to prepare her medications, make her bottle, and get her to actually take it. By the time we would finish, it would be about time to start over again.

Friday - we went to Peoria to get her PICC line removed. Everyone was excited to see her. The intensivist said she still sounded absolutely horrible, but we were still free to go. We spent a little time visiting with the doctors and nurses and got out before any germs found her! We return home to professionally cleaned carpets compliments of Stanley Steamer and my in-laws. This was better than going to Disney World!

Saturday - nights are going much better. We are figuring out the meds and how she prefers to take them. Grandma T. (my mom) comes for a sleepover. Zac leaves for his marathon in St. Louis. Grandma plays with the kids while I organize the house.

Sunday - Jack, Brooklyn, and I head to church. It was nice to go since it had been over a month since I had been. The big kids and I then head to my nephew Alais' 3rd birthday. The kids had a blast and I enjoyed some adult interaction. When we got home, Zac was back from the marathon (which he said went well). Grandma left and we had a nice family carry-out dinner.
That brings us today! Olivia saw the pediatrician and she said she sounds great! She does have thrush, so we'll start another medication for the next 10 days. She has made HUGE progress over the last few days. When we got home she couldn't sit up, crawl, and couldn't hold her head up for more than a few minutes. She's already got those skills back and seems more interested in her surroundings than even before her hospitalization.

I've gotten her medications all figured out and she is sleeping much better. We are getting things back to normal (whatever normal is around here). Brooklyn is starting to leave my side and doesn't seem to be constantly attached to my leg. It's nice to have a little of my personal space back.
As strange as it sounds, it's always hard to leave the hospital after these long stays. For one, it's so quiet and peaceful. I do a lot of reading, which is so unlike me, but I actually miss that now. There is also someone else that takes the night shift, so it's quite an adjustment to have to get up every 3 hours. I find it very hard to throw away the diapers and not weigh them first. I've had to start cooking again, but I'll take that over the infamous boxed lunches and dinners from the PICU. Anyway, we miss you all up in the PICU, but are so, so glad to be home!!! Wouldn't trade it if we could!
All in all - Olivia is doing awesome! She is one amazing little girl that couldn't get through any of this without the support and prayers from all of you! Thank you so much!

Wednesday, April 2, 2008

Guess what?

We're home!!!! Olivia and I came back to Macomb around 4:00 this afternoon. She obviously had a good night and ate well this morning! It did take some persuasion on our part. They wanted us to stay one more night, but I personally didn't see a reason for that. We did have to come home withher PICC line still in (the long term IV access) "just in case." So, I'll get to play nurse for the next couple of days to keep that from clotting.
Anyway, I left my camera in Dunlap, so I don't have any pictures, but this is a totally different child! She is so happy to be home and see her brother and sister. She is rolling around all over the place. She has totally forgotten how to sit up, but I'm sure it won't take long to get that back. She remembers how to crawl, but isn't quite strong enough.
It takes me a good 10-15 minutes to get a bottle ready for her now. She gets some sort of medication every 3 hours (which I put in her bottle). We went in to the hospital on 5 medications and we've come home on 13. It's going to take some serious time to get used to the new ones. Hopefully they are short term.
Anyway, just wanted to drop a quick line to let everyone know the good news. I'll update more tomorrow!

Tuesday, April 1, 2008

Hungry, hungry Livvy!

Olivia got to eat today! She was also able to get off the high flow oxygen onto 1 liter off the wall! This is so great that there has been talk of us going home in the next couple of days.

How awesome is that! We are looking forward to getting to be back together as a family. It's definitely time. Jack and Brooklyn are starting to turn into totally different kids and it's time to get some normalcy back into their lives! So, keep your fingers crossed and say a few extra prayers that we get to head back to Macomb soon!