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


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"


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.


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.


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

Monday, March 2, 2009


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!