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.

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!

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!

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!