Thursday, September 24, 2009

Adjusting

Life in the Kiefer household has been crazy with me trying to get adjusted to being back at work. I love my job and have a great group of students, but it’s still stressful trying to adjust. Olivia is doing great though! We started her on a natural remedy right around the time school started. It seems to be helping her eat and sleep better. She has been sleeping better both at night and naps. She has also started enjoying playing with food more and trying to eat some things. On top of that she has been taking a lot more from her bottle! He weight had tapered off, but seems to be picking up again now that we increased her calorie intake again.

We have two nurses that come in to care for Olivia while we’re at work. She is adjusting really well to that. She even gets sad some days when the one nurse leaves. She is crawling all over and getting into everything. She recently figured out how to climb the stairs. She is also starting to cruise along furniture. I think it’s only a matter of time before she starts walking.


Olivia really enjoyed playing with her food one night. She more in her hair than her mouth and then daddy decided to do her hair!

Look at me!


Olivia has enough hair to do ponytails now!

Olivia loves Oreos!

GROSS! Olivia has discovered the toilet, which happens to be the perfect height for her to stand at! EEW!

Saturday, August 8, 2009

New Things

Olivia has been a champ this week! She has been eating way more than normal, and been willing to trying new things. Yesterday was a different story though. She didn’t really want to eat at all. We are thinking that her appetite was from the steroids, and that now that we’re tapering them, she’s losing that appetite. The Erythromycin seems to be working, so hopefully in time she’ll eat more again.

Another of Olivia’s new tricks is pulling up to stand. Lately she wants to pull herself up to stand on anything possible. We had been keeping her stool upside down except when we were playing with her. She has now figured out how to flip it over so she can stand at it. She’s not cruising along anything, but I think that’s only a matter of time. Then I think we’re in big trouble!

We also found a nurse to care for Olivia when I go back to work in a few weeks. We’re hoping that we can get everything set-up before that. We just interviewed her this week, but decided right away that we really liked her. She got down on the floor with Olivia as soon as she’d introduced herself to us. Olivia is usually timid and sometimes just scared around people she isn’t familiar with, but she took right to Melissa. That was a huge plus! It definitely makes me feel more comfortable going back to school knowing that Olivia will be well cared for in her own environment!

Enjoy some new pics of the cutie pie!


Olivia's new toy at the hospital was a paper cup and a plastic spoon in a wrapper.


Sharing with her baby!


Look at that sweet face!



Food Face!

Saturday, August 1, 2009

YAY!

YAY! We made it home this morning! Olivia kept her oxygen saturations up all night with out increased oxygen! That was the requirement for coming home. We're all very happy to be home! Olivia has been all smiles and crawling all over since we got home.

Thursday, July 30, 2009

Family Care Conference

The conference went well this morning. It started off a little negative, but quickly turned positive as the doctors there realized that we weren't attacking them,but rather seeking their input combined with that of her other specialists. Dr. Pauli asked some of the same questions we'd been asking all week, but they suddenly had answers when he asked them. We were able to develop a plan to hopefully help Olivia's reflux and in turn hopefully get her to start eating more. As soon as the meeting was done we went to x-ray to have an upper GI study done to check the malrotation that they thought they saw in the same study in November. While we were there they also did a swallow study, which went really well! We haven't heard anything back from that yet. We are also starting her on Erythromycin to help with the her motility. If that works, then that's the end of the plan. If it doesn't work then we'll have a GJ tube placed. That tube will go in the same place as her G tube but it will have an extra tube on the inside that will do directly into her intestine. That will require her to be on continuous feeds from her pump at all times, a pain in the butt for us, but hopefully helpful to her. If that works then they will schedule her for a Nissen. If it doesn't work they will put a G tube back in and we'll be back at square one, and looking at other causes.

In addition to the meeting today Olivia has shown a lot of improvement. She is back down to ther normal oxygen, and they are working on decreasing the steroids that she's on. We're hoping to be able to go home tomorrow or Saturday.

Wednesday, July 29, 2009

Conference Scheduled!

We finally got the Family Care Conference scheduled for the morning. Olivia's Pulmonologist, Geneticist, GI, Endocrinologist, Speech Therapist, and, via phone, her Primary Doctor will all be at the meeting. We are hoping that it will be a good brainstorming session and we will hopefully get a good plan to work with. There have been many ideas thrown around over the last couple of days, so hopefully at the meeting we can figure out which may be the best for Olivia.

Today was a good day for Olivia. She was put on just oxygen instead of high flow. She started the day at 2 liters and is now down to 0.5 liters. She was much more herself today. The nurse brought in a mat for her to play on the floor. She really loved that, except when we wouldn't let her crawl off of it onto the dirty floor. She was also transfered from PICU service to Pulmonary service today. We'll stay in the same room, but her care will now be managed by the pulmonary team rather than the PICU team. In addition to that, the doctor came in tonight and said that Olivia doesn't have to be on isolation anymore. That means that when the doctors and nurses come in they won't have to wear gowns and masks. Those really scare Olivia so hopefully she'll be even happier tomorrow when she can see people's faces!

Still no idea when we'll be going home, but at least we are on the right track now!

Monday, July 27, 2009

Looking a Little Better!

Olivia seems to be doing a little better today. All of her cultures have been negative so far so they decided to stop the Tamaflu and one of the antibiotics. She also had a bath today, and boy did she need it! She was one stinky little girl! During her bath, she decided she didn’t want her IV anymore and pulled it right out. The good news is that they started feeds so the doctors didn’t think it was necessary to put in another IV at this point! She is so much happier now that she can use both arms! They continue to try to wean her oxygen, but haven’t made a great deal of progress thus far. The GI doctor that Olivia was supposed to see today is hopefully just going to come up to see her since her clinic is just two floors away and Olivia was her last appointment of the day. They are working on getting the Family Care Conference set up, but it probably won’t happen for a couple of days. As long as it actually happens before we go home, we’ll be happy!

Sunday, July 26, 2009

Holding Course

Nothing new to report here. Olivia is still on high flow at a pressure of 7 liters and 50% oxygen. If they can wean the oxygen down to about 30% and have her maintain that, then they will start to wean the pressure. They have had her oxygen down to 40% a couple of times, but then needed to increase it again. It's a SLOW process! They are treating her with two IV antibiotics, an IV steroid, tamaflu, and albuterol. That is on top of her regular medications. She is definitely not herself. She wants to be held all the time, her voice is very hoarse, and she is just generally irritable and uncomfortable. We won't hear anything about the family conference until tomorrow, when all the doctors are back from the weekend. The on-call pulmonologist said that she agreed that it was about time for a meeting to discuss these issues. She thought we had tried about everything she could think of. I will definitely post once we have more information or there are any other changes.

Saturday, July 25, 2009

Really!?!

Here we are again! Sitting in the PICU at the Children's hospital with pneumonia! We are getting very frustrated! It seems like each time is worse than the last! Olivia came down with a cold overnight Wednesday night, which quickly developed into pneumonia by Friday afterrnoon! We took her to see her primary doctor who advised us that it would be in our best interest to take bring Olivia here. We were kind of thinking that, but we're really glad he sent us when he did. She quickly declined on the way here and got even worse after getting here. They have her on high flow, a mix of oxygen and room air forced in at a higher pressure. The pressure on that is 7 liters. Her normal oxygen is 0.3 liters. They also have her on some IV antibiotics and steroids, in addition to an albuterol nebulizer treatment. She finally seems to be sleeping, and will hopefully sleep well for a while.

We're getting very frustrated with spending so much time here. We have been trying to get a family conference, but it's been hard because they usually only do that for inpatient. So I guess that's a good thing coming out of this, now maybe we'll finally get our family conference. We just hope that will provide some answers to finally give Olivia some relief! I think that her vomiting, not eating, and respiratory issues are all related, but we need to get her doctors together to figure things out! We'll continue to keep you posted on how she's doing!

And I promise that crawling video once we're home and feeling better!

Friday, July 17, 2009

Summer Fun!

Sorry it’s been forever since I posted anything! We’ve really been enjoying our summer! We’ve celebrated both of my niece’s 2nd birthdays, went camping, went boating, and spent a lot of time with family and friends.

Olivia has been crawling all over lately. She spider crawls, on her hands and feet. It’s very cute! I am working on getting a video and promise to post it soon!

We’ve had lots of doctor appointments, mainly follow-up appointments. The most major one was with Dr. Pauli. He felt that things were going well. He is concerned about her back, but given her respiratory issues, it is impossible to brace her right now, so we’ll just have to wait. The only other concern he had was her reflux. We spent a good portion of the appointment discussing that.

Olivia is scheduled to see the GI doctor on July 27. We’re hoping to get some resolution at that point since the vomiting is now starting to damage her teeth.

Other than the vomiting, Olivia is very happy. She’s a very chatty little lady, although the only real words she says are mama and dada.

We hope everyone is enjoying your summer! We sure are!



Olivia's cousin Cora loves her!



Out boating! Olivia isn't sure what to think if it!



Cora will be such a great big sister!



Mamoo and her girls!



Chillin' with Great-Grandma Nelson!



Olivia was not a fan of the splash park!

Wednesday, June 17, 2009

This and That

Sorry I’ve been a slacker with the updates again. We’ve been busy with graduations, end of the school year, birthdays, doctor appts, etc. We’ve been having fun though so it’s ok.

Olivia saw the nephrologist and had a renal ultrasound done. The appt with the nephrologist went well. The renal ultrasound showed that her right kidney is growing, but her left is continuing to shrink. The doctor feels it is important to do an MRA as soon as we can. However, Olivia will need sedation for it, and the doctor feels it’s not worth doing it if she will need to be intubated for it. Olivia’s pulmonologist is pretty certain that she would need to be intubated for it to be done anytime soon, so it will probably have to wait until her lungs are better.

Olivia also saw the ENT and had a repeat hearing test. Before getting her tubes the lowest she could hear was 40 decibels. At this hearing test she could hear as low as 20. They would like a kid her age to be between 5-15, but 20 is still a huge improvement. The ENT wants to follow-up with her every 6 months with repeat hearing tests at each of those appointments.

We also saw the pulmonologist. He decided that it was best not to mess with Olivia’s oxygen for right now, because of the vomiting issue we are currently battling. Otherwise he thought Olivia was doing well.

The vomiting continues to be a problem for Olivia, but is slowly getting better. The last couple of days, she has only vomited once or twice. The dietitian gave us a different formula to try. It seems to be working much better for Olivia. Hopefully that will help. Olivia also hadn’t taken anything by mouth in over a month, but on Sunday she decided to eat again! She isn’t eating as much as she had been, but at least she’s starting to try again.

We’ve also been busy with play dates. Olivia loves being around other kids! We have had of my nieces for a couple of days each. It’s been fun to have them and Olivia loves having playmates! We have also been over to our friend’s house a couple of times to play, which Olivia loves, and her kids love Olivia!

The Deerfield Festival was last weekend also. John and Tammy, the DJ’s from 96.6 Star Country who did the Radiothon for the Children’s Hospital were there on Saturday in the evening. We took Olivia over to say hello and got a couple of pictures with them. Olivia and Tammy loved cuddling together.

We plan to take Olivia camping again in a week and a half. I hope she likes it again!



When my niece Ella was here we had a play date with Aiden and Lilly. They all had such a great time together!


Olivia also had a play date with her friend Taylor while their parents did too! Taylor was still a little sleepy in this picture.


Olivia with Mamoo at El Mariachi, our favorite restaurant!


Olivia with John and Tammy from 96.3 Star Country. They are truly Champions for Kids!


Olivia and Tammy snuggling together!

Sunday, May 31, 2009

Fun Times!

Sorry I’ve been a slacker lately! We actually have been really busy…with fun things! YAY! We have had one of my nieces here a few days to play, play dates with friends, two short camping trips, along with our day-to-day craziness!

Since Olivia came home from the hospital on Mother’s Day, she has remained on the higher oxygen. We did an overnight pulse ox study to watch her oxygen levels while she slept. The study didn’t look horrible, but she had some pretty significant dips during the night. With that, the doctor decided that he doesn’t want to monkey with her oxygen just yet. She sees him again on June 12, so we’ll see what he has to say then.

We have also been working on switching Olivia over to a pediatric formula. It’s been a challenge to say the least. We tried one, but she started vomiting and absolutely refused to let the bottle come anywhere near her mouth. It had a strong vanilla sent, so I am sure it had a strong vanilla taste, which apparently she does not like. They have now switched her to a different, more easily digestible, flavorless pediatric formula. She is still vomiting and at this point we think it’s one of her meds because most of the vomiting comes after the feedings with which she gets her medications. No meds have been changed lately, so we’re not sure which one might be the culprit. Hopefully we can figure it out before we end up in the hospital with aspiration pneumonia again!

We have more play dates coming up that I can hopefully remember to take some pictures of. We will also be having each of my nieces over for a few days to play, which Olivia will LOVE! She really loves other kids now!

We also have quite a few doctor appts coming up in the next couple of weeks. I’ll really try not to be such a slacker anymore!

Enjoy a few new pics of our little doll!


Here's Olivia during her last hospital stay. She clearly isn't acting like anything is wrong, and definitely showing her spunk!



Olivia loves my parents' dog Molly. Molly is very old and very tolerant of Olivia and my nieces!


Olivia, her cousin Cora, and Cora's cousin Gavin all playing nicely together!


This was Olivia's idea of sleeping at 10:00 on Saturday night!

Sunday, May 10, 2009

Happy Mother's Day!

Happy Mother's Day! We're home! When I arrived at the hospital today, Joe was talking with the doctor. She turned to me, wished me a Happy Mother's Day, and said we could pack up and go home. Olivia came home on a little more oxygen than she was on before, but is otherwise doing really well!

Friday, May 8, 2009

To the PICU?

Happy Friday! And what a beautiful day it was today! Once Joe got to the hospital I was able to get outside to read for a little while and enjoy some nice, warm fresh air. I only wish Olivia had been able to get outside and enjoy the day! Her oxygen needs have increased more again today. They continue with the breathing treatments that were started yesterday. At this point we are unsure if they are really helping or not. If they don't seem to be helping and her oxygen needs continue to increase, the plan to transfer her into the PICU. The reason for that is that they will want to put her on high flow in hopes that the higher pressure will help open the collapsed air sacs in the lungs. They aren't ready to transfer her yet, but I have a feeling that it's coming. At this point I would be surprised if we go home before Sunday. Aside from the increased oxygen need, Olivia has really been herself the past few days. She scoots around her crib, plays with her toys, interacts with the people who stop in to see, and puts up a good fight for the treatments that she doesn't care for. Continuing to see the spunk in her is a really good sign that things aren't too bad, and we hope things stay that way! We hope you all enjoy your weekend, and we'll be sure to update as we have more information!

Thursday, May 7, 2009

Still Here!

So...We're still here at the hospital. After Olivia's oxygen needs continued to go up and down, they decided to call pulmonary to come see her today. The doctor decided to do a chest x-ray and discovered there was a small amount of collapsing in her lung, most likely an after effect from the surgery. The have started her on a breathing treatment, and the best I can explain it is that it is sort of like a combination bi-pap and nebulizer. It delivers intermittent pressure through a mask like a bi-pap, but like a nebulizer it delivers medication and is given every 4 hours. She LOVES this treatment so much that it takes two people to hold her down to get the treatment! Whether she likes the treatment or not, it does seem to be helping. The doctor's hope is that she'll be much better and able to go home tomorrow(Friday). I am hoping the same, but am know how easily plans can change. As nice as it would be to be at home, I am much more comfortable staying here until we know she is back to her baseline and safe to take home. I will try to update sooner in the day tomorrow when I find out what the plan is. Have a great Friday! And for you locals, don't forget to listen to John and Tammy's Champions for Kids Radiothon benefiting the American Family Children's Hospital on 96.3 from 6am to 7pm on Friday.

Wednesday, May 6, 2009

Out of Surgery

Olivia is out of surgery and recovery.  We're back in the room we started in.  She seems to be in better spirits than in the recovery room, but still isn't quite herself.  She is on a full liter of oxygen.  Her normal amount is only 0.2 liters.  The nurses said that they won't send her home until she is down to her usual oxygen.  If you asked me I would guess that we'll be spending the night tonight, but we'll have to wait and see what Olivia does.  Part of the procedure included looking in her esophagus and airways, and also squirting some saline into her lungs and suctioning it back out to look at the cells that came out with it.  The doctor said it is impossible to get all the saline out which is probably causing her to need the additional support she is requiring now.  I'll be sure to keep posted what ends up happening.  Have a great Wednesday! 

Tuesday, May 5, 2009

Surgery Tomorrow

We received word today that Olivia's surgery will be at 11:20 tomorrow. The procedure is supposed to last only 30 minutes or less. The plan is to send us home tomorrow evening. That will entirely depend on how Olivia is doing after surgery. The doctor told us not to be surprised if they decided to admit her for observation overnight. He said their threshold for admitting is very low and given her other issues, admission is more likely than with most kids. We will be sure to keep everyone posted on how Olivia is doing. For now enjoy some pictures of our little stinker! Her new favorite thing is crawling under the couch. The only problem with that is that she can't get out on her own. Yesterday I couldn't find her when she was whining, so I had to follow her oxygen tubing to find her one leg sticking out from under the couch! What a stinker!



Hmmmmm...What's under here?


Hide and Seek?


Peek-a-boo Mama!

Tuesday, April 28, 2009

Odds N Ends

Olivia has had a busy couple of weeks again. Since the last post Olivia had yet another ear infection. This time the doctor decided to leave Olivia on antibiotics until her tube surgery. The surgery is scheduled for next Wednesday, May 6. Today she had the pre-op appointment, and what a lengthy appointment it was. We started at 2 in the learning center where the nurse talked to us about what to expect the day of surgery, and gave us Olivia’s earplugs that she’ll now have to wear for bath time. Then we went up to the ENT clinic where we met with the nurse practitioner who reviewed Olivia’s medications and medical history. We were then sent to the pre-anesthesia clinic where they reviewed her medical history and made sure we had no additional questions or concerns about the anesthesia. Given what I know about the complications of anesthesia for kids with achondroplasia, I normally would have asked about it. However, at our last visit to Dr. Pauli, he assured me that the anesthesiologists at the Children’s Hospital are all very educated to these issues.

Something very exciting happened while we were waiting between appointments! We met another family with a 17 month old boy named Caden, who also has achondroplasia. While his mom and I sat and talked he climbed up in my lap. It was the sweetest thing, and he is absolutely adorable! It was really nice to meet someone so close by, who sees some of the same doctors that we do.

Some additional tidbits about Olivia . . . She is finally gaining weight again! She now weighs just over 13 ½ lbs., which is up a pound from when she had her shunt surgery three weeks ago. She continues to eat well taking approximately 20% orally daily. She is scooting all over the place getting into everything she’s not supposed to. She also continues to be so happy and giggly!



OOH! These magazines are neat!



I love to read!



Matching cousins!

Wednesday, April 15, 2009

Easter Fun!

We hope everyone had a great Easter! We had a wonderful day! We went to church with my family in the morning. Olivia only made it about half way through the service. After church we went to my grandparents’ house for Easter brunch! It was an awesome meal, as always! The Easter Bunny even made an appearance, and Olivia really enjoyed it. It was like a life-sized stuffed animal, and she enjoyed petting the fur.

Olivia seems to be much more happy and active since her surgery. She is more smiley than ever and loves to babble! She has even been eating better lately. Yesterday she took 29% from the bottle. We are hoping that will continue to get better and better.
She did have another ear infection last week, and her doctor said it was important to get the tubes in as soon as possible because the fluid in her ears is getting worse. I spoke with the ENT nurse yesterday and the surgery scheduler should be calling today to set up her surgery.

Olivia continues to do well with the lower amount of oxygen. She could probably have been turned down at the pulmonologist on Friday, but since we had just turned her oxygen down, he didn’t want to push it. As much as I would like to see the oxygen go, I don’t want to push too hard and cause a setback. They tested her oxygen levels without any oxygen again and she maintained numbers in the 90s. An improvement even from last month!

Enjoy a few pictures of our smiley little lady!



Checking out her Easter Basket!




Olivia was playing with my cousins Elizabeth, Emily and Ashley




Olivia and the Easter Bunny! She loved it!

Sunday, April 5, 2009

Home again!

Sorry it's been so long since I updated last. We've just been exhausted! Olivia was discharged yesterday after her feedings had improved and she had pooped a few times on her own, without a suppository. Her oxygen saturations were so good that they even turned her oxygen down to 0.2. She had been at 0.3 since October. They were going to try 0.1, but then we were able to go home. We didn't think it was a good idea to push it too much when we would bring her home without a way to measure her saturations and make sure they remained high enough.

Unbelievably, when we got home, our basement stunk like gas. We called WE energies, who then called the fire department. It was quite a scene. Fortunately, the smell went away and they didn't find any leaks.

Then this morning Olivia woke up around 6:30 with her bed and pajamas soaked in puke! UGH!!! She continued vomiting this morning. She ate this afternoon with out vomiting, so hopefully that will continue and we won't have to take her back in. Since that was the reason that they kept her in so long, it's a bit concerning that it started back up again already! I am just going to keep hoping that it was just a fluke and the vomiting won't return.


Olivia's head after surgery. You can see the horseshoe shaped incision on top and there is one other small one you can kind of see. She still has all the soap they used in the OR on her head too.


Snoozing in bed after surgery. She still has most of the ink and soap they used in the OR all over her.


Snuggling with Mommy!

Thursday, April 2, 2009

A Little Better

Olivia seemed to recover quite well from the surgery. They began letting her take clear liquids and later let her start taking milk. She took between eight and ten ounces within about eight hours. Far better than she usually eats! She hadn't eaten since Tuesday morning though so she was probably just very hungry!

It's been quite a long day for Miss Olivia! She hasn't taken anything orally and has been quite irritable all day. Her belly has become quite enlarged. Tonight they did a abdominal x-ray to look for problems. At this point they believe it's ileus. The way the doctor explained it was that when kids come out of surgery their brain is ready to eat so they eat a lot, but their belly isn't really ready. What then happens is that the intestines almost shut down for a short period of time, but usually start up again on their own. For the time being they have switched her back to a small amount of pedialyte, but will go back to IV fluid if she doesn't tolerate that.

The plan had been to send her home tomorrow, but that may change depending on her eating and pooping. They said that they won't send her home until her belly goes back down and she is eating and pooping regularly.

On the good side, her head looks much better. She is back to her normal amount of oxygen, and her oxygen saturations have been awesome today. Hopefully this problem with her intestines will take care of itself quickly so we can get Olivia back home where she is more comfortable.

Wednesday, April 1, 2009

Surgery a succcess!

The neurosurgeon came in to talk to us in just under two hours after they took Olivia down to the OR. He said that normal pressure is 8-12, the upper range is 12-18. Olivia's pressure was between 25-26. They placed the shunt right away. The neurosurgeon said the shunt was already draining and within about 2 hours her pressure should be normalized. Most kids go home the day after having a shunt placed, but he said that when she will go home will depend entirely on her and her other medical problems.

Surgery Soon

After a long night of Olivia being just plain inconsolable, they have decided to take her to the OR at 9 instead of noon. They never came in to tell me how her x-ray this morning looked, but said that last night's looked fine. The blood work they did last night didn't give them any information so they had planed to repeat it this morning. Because of her being so upset all night, they never re-did it. At about 4 AM they decided to give Olivia a dose of Morophine. That helped her sleep for a short time, but then she was inconsolable again so they gave her a second dose. The second dose didn't seem to help any. Since she is so obviously in pain they decided to move up the time of surgery. The plan in the OR is still the same. They will put her under and place the probe. If pressures are high right away they will just put the shunt in right away. If not, they will leave the probe in and make a decision about shunting tomorrow. I have been told that surgery could take anywhere from one hour to three or more, but I will be sure to update once she's out and back to her room.

Tuesday, March 31, 2009

PICU - Our home away from home!

Amazingly enough, we're back at our home away from home again! After vomiting all night last night, Olivia was just not herself today. She was cranky and tired, very unusual for our happy little girl. Her fontanel was bulgy and, on and off, was pretty firm. She was also very vainey. I finally decided, against the doctors wishes, to bring her in to the ER. As usual, her breathing has worsened since we've been here, and they are thinking it's possibly pneumonia again. If tonight's blood count and CBC look good along with tomorrow morning's x-ray, then they will go ahead with the monitoring tomorrow. The plan for the pressure monitoring is to take her to the OR. If the pressure is high right off the bat then they will just put the shunt in while she's out. If not, they'll monitor the pressure for at least 24 hours before making a decision regarding the shunt. If this is pneumonia again, then that will have to be put off until she is doing better. She is certainly following the same pattern as the last two times we've been here with pneumonia, so it wouldn't be the least bit surprising if that's what it is again. I feel so bad for her because she is clearly absolutely miserable! At this point all we can do is wait and see what the tests tell us. I will try to keep everyone posted as we get new information. Thanks for keeping up with us all this time! It has certainly been a long road for little Miss Olivia! Hopefully we can get some answers soon!

I have been doing my best to keep up with all of your blogs. I haven't had the time to comment on all of them, as Miss Olivia is keeping me rather busy. I want you to know though that I have been reading them as I get a chance.

Monday, March 30, 2009

Shunt??

Olivia saw the neurosurgeon today. He felt that it would be a good idea for her to have inter cranial pressure monitoring done before making a decision about a shunt. The plan is to have her go in for monitoring on Thursday. Whe have to be there at 11 and they will start the monitoring at 1. They will already have the surgery for the shunt scheduled for Friday. If she needs it, she'll be able to go in right away, and if she doesn't need it, then they'll just cancel it. Since she's supposed to have surgery for tubes also, we are hoping that if she needs the shunt they can just do the tubes at the same time. At this point the neurosurgeon felt that it was about 60/40 that she would need a shunt. We'll keep you posted as we have more information.

Tuesday, March 24, 2009

New Pictures

So I never posted about Olivia's appointment with Dr. Pauli. Most things looked pretty good, and he felt that we were on the right track with the things we are doing. Even though she loves to lay on the floor and on her tummy, her kyphosis is getting worse. He ordered x-rays, and wants to have more done in 4 months before we see him again. He also said that it is likely that she'll eventually need a brace.

Olivia sees the neurosurgeon on Monday since he couldn't see her last Friday while she was in the hospital. We'll see then what he thinks and recommends regarding the mild hydrocephalus.

Here are some new pictures of the cutie!


Olivia loves the cats! This one tolerates her really well and even seems to like her at times.


I thought this shirt was too cute! It says "lil shorty"


"CHEESE!"

Friday, March 20, 2009

YAY! We're Home!

Just wanted to let everyone know that we are home! When the nurse told Olivia she could go home, we saw the first smile we had seen since Sunday morning. I sure missed that all week! The antibiotic was the only additional medication they sent Olivia home on. The doctors want us to continue feeding her as usual, but also give her a couple of ounces of pedialyte each day until she's over this rotavirus so she doesn't get dehydrated. Olivia usually loves her baths. We decided to give her one when we got home because she really stunk. Let's just say she wasn't a fan of bath time tonight! She was in bed sleeping by 9:30 which is a huge improvement from the last time we brought her home from the hospital. That time we had a few nights of midnight or later before we got her back in her routine. I think the rotavirus is still making her feel yucky though so that's probably why she went to sleep by a decent time. We didn't get to see the neurosurgeon today because they got called in to a couple of emergency surgeries, so we'll have to follow up with them out-patient within the next couple of weeks. I will try to post some pictures of the little cutie some time soon.

Home...soon?

Things seem to be improving some. It was confirmed this morning that Olivia has rotavirus. That shouldn't keep her from going home unless she doesn't tolerate her feedings. So far she seems to be tolerating them, but we'll have to see how the rest of the day goes. We also got the results from the MRI today. It showed mild hydrocephalus, which is common with achondroplasia. They did call for a neurosurgery consult today. It's not something they are terribly concerned about at this time, but if this should happen again the doctor wants to have an MRI done right away to see if that is what is causing this. It isn't ideal to have to wait for this to happen again, but at least we now have an idea of what may have been causing this. If all goes well today Olivia should be able to go home tonight, but only time will tell. I'll post more as soon as we know more.

Thursday, March 19, 2009

Today's quick update

Although they had switched Olivia back to milk from the pedialyte, they had to switch her back because she developed a bad case of the diarrhea. They think she may have picked up rotavirus at the hospital, as the kid next door to her has it. This means she won't be coming home today. The are going to do the MRI while she is there. They are going to do a quick scan so that she won't need to be sedated. They said they won't get as much information from this, but should get what they need. They had to remove her IV today because it started leaking and was not functioning properly anymore. Rather than starting a new one they are just going to see how she does without it. Hopefully she'll be on the mend soon and able to come home.

Wednesday, March 18, 2009

Still in the PICU

Sorry I haven't updated in a couple of days. Olivia continues to show improvement. Today they were able to take her off high flow and put her back on just oxygen. It is still more than she is usually on at home, but it's a step in the right direction. They also started feeding Olivia today. They started with just pedialyte, but switched over to her milk tonight. These have just been tube feedings, but at least she is finally getting something in her stomach. She hadn't eaten since about 8:00 Sunday night. Shortly after starting her tube feeds, Olivia's g-tube pulled out. We aren't exactly sure how. My mom was putting her back in bed, and thinks that the tubing may have gotten stuck on the side of the bed. Funny though, the doctor who came in the room a few seconds later thought nothing of it. He said that after they transfered her to another room, they'd call GI to come take care of it. I then informed them that GI told us that if it ever came out we had a window of about 30 minutes to get it back in before the hole closed itself. We did get it taken care of relatively quickly. That added some excitement to an otherwise dull day. Since Olivia is off of high flow and eating again they wanted to transfer her to the general floor. There weren't any rooms available to for now Olivia will stay in her room in the PICU, but her care will be managed by the pulmonary team. I talked to the pulmonary doctor yesterday about doing the CT or MRI. The PICU doctors said that it would have to wait a few weeks. I told the pulmonary doctor that my preference would be to have it done before we go home. That way if she reacts poorly to the sedation we're already there. It would also mean one less trip to Madison for me. She said that would be her preference too, but we'll have to wait and see how Olivia is doing. For now, we have no idea when she'll be coming home. Could be tomorrow, or not until the weekend or after. I'll be sure to keep everyone posted!

Monday, March 16, 2009

Back in the PICU

Olivia is now in the PICU again. At about 6:00 this morning they decided that Olivia would benefit from being on high flow and closer attention. So she is back on the high flow and finally began resting this afternoon. My mom came up this morning so that Joe and I could go to the Ronald McDonald house and get some sleep. We each slept a few hours there, and will probably go back for the night tonght since we are both struggling to function on this extreme lack of sleep. While the other doctors have just blown me off when I have suggested looking further into what caused this same thing again, the pulmonologist came in and told me she agreed with me. She is going to contact Olivia's geneticist and see if he has any suggestions. She thinks there is something more causing the sudden extreme vomiting which then causes the pneumonia. One idea she had was increased pressure on her brain, which can sometimes go along with achondroplasia. She doesn't typically have this additional pressure, but there could be something that causes occasional increased pressure. The pressure could cause vomiting. Since both times she's had pneumonia have been preceded by large amounts of vomiting, she is fairly certain that both were caused by Olivia aspirating some of the vomit. The pulmonologist is hoping to have some ideas as to further testing when she returns to see Olivia tomorrow. This illness means that Olivia's surgery for tubes that was scheduled for April 1 will have to be rescheduled as they prefer that she is healthy for 4-6 weeks before. I will continue to keep you posted as we get more information.

Pneumonia ... AGAIN!

So I had intended on writing over the weekend about Olivia's recent visit to the geneticist. However, Sunday was another rough day for Olivia and by 10:00 we decided it was time to take her in. We were mainly worried that the vomitting and diarhea were dehydrating her. We though it was probably just a stomach bug. In the back of our minds was also the fact that this was exactly how things started before she got pneumonia last time. Sure enough...pneumonia again! They put her on IV fluids in the ER and decided to check a white cell count. Olivia's was 19, while normal is about 7-10. They then decided to do a chest x-ray. The doctor said that this one looked just like the on from the day she was admitted with pneumonia last time. We are now up in a room, with word having been given to the PICU that she may need to go there. Her breathing was fine when we came in, but seems to be getting more labored. That is really how things went last time too. I will update on the visit to the geneticist later in the week, and I will continue to keep you updated on Olivia's progress with this pneumonia. For now, I am going to attempt to get some sleep.

Saturday, March 7, 2009

Medical Updates

First, I would like to say thank you for all of the advice. I am working on trying out all the feeding advice. Unfortunately, Olivia likes everything in her mouth, except food! UGH! With so many of you recommending the Space Saver, I went and got one. A great deal thanks to my aunt! Before I bought ours, Olivia's speech therapist brought hers over with her to see how Olivia would fit in it. She fit so much better in it! Too bad she doesn't eat better in it too!

Olivia had several appointments this week. On Thursday, we saw the speech therapist, audiologist, and ENT. With the speech therapist we discussed Olivia’s recent pneumonia and what may have caused the aspiration. We also talked about Olivia’s eating, or lack of. Then the audiologists checked Olivia’s ears for fluid and did a hearing test. The test showed that Olivia had a small amount of fluid in both ears. That fluid was probably what caused her hearing test to show a mild hearing loss. The ENT decided that it would be a good idea to be proactive and put tubes in Olivia’s ears, since it is quite common for kids with achondroplasia to have ear problems, which can result in hearing loss. Because Olivia just had pneumonia and he wanted to wait until she was healthy for 6 weeks, the surgery won’t be until April 1. While he has her out, he also wants to take a look at her larynx, trachea, and esophagus. Hopefully Olivia can remain healthy until then, so we won’t have to postpone the surgery. Then Olivia saw her pulmonologist on Friday. He was very pleased with the overnight pulse-oximetery study we did at home last Tuesday. He said that her oxygen levels averaged about 95 for the night. Her clinic readings were about the same. He didn’t look into turning down her oxygen, probably because of her recent illness. He always tests her with out her oxygen though. She usually drops very quickly to 80 or below. This time she maintained about 86 for about 10 minutes. The doctor said the goal is to continually see that number increase each month when we are there. She seems to be doing that, so we are making progress! While we were there Olivia also got her RSV shot. One more and we will be done with those for the year! YAY!

Enjoy a few new photos!


Look at all my new teeth!



So happy and flexible!



This little stinker scooted over to the diapers and started pulling them out.



"What?"


"OOH, there's still a few toys left in here for me to toss out!"

Monday, March 2, 2009

Advice?

Thank you so much for all the feeding advice! I am definitely going to try some of that out! I was wondering something else now. Olivia really doesn't sit very well in her high chair. Have any of you found a high chair with better padding for a kiddo with dwarfism, or a better way of padding on to help her sit better? The way she sits right now, she can't even really reach the tray. Any advice you have would be much appreciated!

Friday, February 27, 2009

On the Move

Olivia has had quite a week. She got her first tooth on Tuesday, another on Wednesday, and has two more ready to come through! In addition to that she has started trying to crawl. Yay for me, I finally figured out how to add video! So...here is a short video of Olivia trying to get to the remote control! I didn't get the video camera until she was half way there. Sorry for the incredibly shaky video job! I will try to add some video of her talking in "Olivia language" next week, hopefully less shaky. Enjoy!


video

We also saw Olivia's GI doctor today. He wants us to increase the fortifier so that her feedings are higher calorie. Hopefully this will help her gain weight. She hasn't gained weight since November. Without weight gain we she can't lose the oxygen. The doctor also wants us to try to get her eating other things. We've tried oatmeal and rice cereals, bananas, pears, applesauce, peas, and sweet potatoes. She doesn't like any of them! I am totally open to any suggestions to get her to eat if anyone has any!

Wednesday, February 25, 2009

Finally!

Olivia is back to her usual happy, smiling self these days. She has a new addition to her smile though! Yes, she finally got her first tooth yesterday! You can see in the picture I added that the two next to it look ready to pop through too. There is also one on top that looks ready to come through. Enjoy the photos!



OK, so I guess the tooth looks more like the flash glaring off her gums, but you get the idea!



Olivia loves our cats. I expected Sweetie to be afraid of her and Lily, our other cat to like her. It's quite the opposite! Sweetie comes and lays by Olivia often and is to tolerant of her!




This is what I found when I went to get Olivia from her nap! SO HAPPY!

Thursday, February 19, 2009

Going Home!

WE'RE GOING HOME TODAY! The doctors feel that Olivia is well enough to go home today. She is really back to her old self. She has been playing in her crib all day and has even eaten a little from a bottle. She smiled at me a couple of times too! Boy have I missed that! Hopefully we'll get more of those once we're at home! Olivia will go home on antibiotics, but no other additional medications that she wasn't already on. We met with GI, which seemed like a waste of time because they just told us to continue on the course we're on. We will meet with Olivia's regular GI doctor next week. Next post will be from home! YAY!!!

Wednesday, February 18, 2009

Happy Wednesday!

Today has been a good and productive day for Olivia. Yesterday they discontinued her IV antibiotics, but didn't start any oral. Today the pulmonologist ordered oral antibiotics because she was afraid that she got better so quickly because of the IV antibiotics and didn't want her to have a major setback from just stopping them so suddenly. They have discontinued the steroid so she was able to have her IV removed. This made her very happy as she can now use both hands. She even played a little more today and cracked a small almost-smile. The pulmonologist is fairly certain that this was pneumonia caused by Olivia aspirating her own vomit. The vomiting is an issue that we have been raising since October, so it is nice that it is finally being addressed. A GI doctor is going to stop by tomorrow to take a look at Olivia and discuss some possibilities. There is a test that they can do that will tell them how bad her reflux really is. If it's bad enough they may consider a nissen. This would require surgery, and would make it less likely if not impossible to vomit. It is quite possible that the reflux is why Olivia isn't eating well also. They are also trying to get Olivia back on her regular feeding routine so that it is easier to transition back to home. They currently have her on 0.4 liters of oxygen. At home she is on 0.3 liters so she is almost back to where she was. YAY! As I write this Olivia is laying in her crib playing with a rattle and having a good time! What a big change from just a few days ago!

Tuesday, February 17, 2009

Tuesday Update

So today the urinalysis came back negative. This means that there are no bacterial infections that they can find. They plan to recheck the With that, they discontinued her IV antibiotics today. They also cut Olivia's steroids in half today. She is still just getting feedings from a pump through her G-tube. Her blood pressures have been high from the steriods and being sick so they have had to give Olivia a second blood pressure medication to keep these in check. They have been trying to ween the oxygen and the flow, but Olivia hasn't been tolerating that very well. Tonight they are going to try to just decrease the flow and see how well Olivia tolerates that. One thing that has been concerning Joe and I is that Olivia's heartrate has been dipping down quite low at times. This happens mostly when she is sleeping, but has dipped as low as 58. We have asked about possibly having an echocardiogram done since her heartrate has been dipping and her blood pressure has been so high. The doctor tonight said that if her heartrate keeps dipping they may consider an EKG. We still have no idea when we'll be able to go home, but Olivia definitely seems much better today. She actually showed interest in her toys today, and played a little bit. No smiles yet, but I am sure they are coming back soon.

Monday, February 16, 2009

Good Morning

Good Morning! Olivia is definitely showing signs of improvement. The cultures for RSV and influenza are showing no signs of growth, which is good. The pulmonologist was in today and said she really thinks it's pneumonia. The urine culture showed that she has a urinary tract infection. The urine sample was collected using a collection bag which the doctors agree is fairly unreliable. They put in a catheter today to get a better sample to retest for a UTI. They are going to ween her steroids further today. They started her on 10 mg four times each day. Yesterday they went to three times daily, and today went down to twice daily. They think she is retaining fluids though, so they are starting her on Lasix today, a diuretic to help her get rid of some of the fluid. As far as her breathing is concerned, they are going to keep her right at where she is for right now. She is usually on 0.3 liters of oxygen at home. They have her on a mixture that is 40% oxygen at a pressure of 4 liters today. Still no idea when Olivia will be going home, but Joe and I guess is will be at least a few more days.

Sunday, February 15, 2009

Short Update

Not much new to report. The were able to turn Olivia's oxygen down from 55% to 40% today and then begin reducing the pressure. She has tolerated the feedings well today so they have been able to increase her feeding rate from 6ml per hour to 18ml per hour.
Here are some pics of the poor kiddo all hooked up!
Olivia in the ER sporting the big oxygen mask and wrapped in an adult size gown.
Olivia was so hot she just wanted to sleep naked with no covers!
Snoozing with her pink blankey and nukie!