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.