Best Appt. Ever!

Olivia had her best pulmonary appointment ever yesterday! Her doctor had talked with her geneticist about her growth because he was concerned that reducing or removing her oxygen would interfere with her growth. Her geneticist thought that the only way to tell would be to try her without her oxygen for a couple of months. Her doctor and I were afraid that if we did that and then she needed to go back on it would be brutal to put her back on. So we decided that she’s doing well enough that we are going to start going to appointments every two months instead of every month. When the dietician came in she was very happy that Olivia had gained almost a pound since her appointment last month. Next came the respiratory therapist. They always check her O2 sats on her oxygen and off her oxygen. Olivia maintained 98% without oxygen for 15-20 minutes! She’s never been that high before!! The doctor stopped back in before we left and said that since her sats were that good we should turn her down from 0.3 to 0.2 and see how she does with that between now and November. YAY Olivia!

Here's some new pics of our little cutie!

Yippee! Yahoo!

They sent us home this morning! Olivia had a great night. She was on slightly lower oxygen than normal, and did better than normal! They sent us home on her normal oxygen though. She already wanted to play outside when we got home this morning!

Surgery Update

Surgery went really well. We are settled in our room in the PICU and Olivia is napping with Joe. She is really crabby, but is at her normal oxygen with oxygen saturations better than normal. YAY!!! I have to go now though because they just said we have to move to the hall because there is a tornado warning. We'll keep you posted!

Surgery Tomorrow

Sorry it's been so long again! Olivia will be having her tonsils and adenoids removed tomorrow. She will be staying in the PICU at least one night after. We'll keep everyone posted as best we can.

Finally Updated!

Sorry it’s been so long since I have posted! Olivia is doing great! She is cruising along furniture and walls, and sits very well on her own. She is more interested in food now, but still doesn’t want to swallow. We are supposed to go see a feeding therapist soon to work on that issue. She is still on the same amount of oxygen that she’s been on for over a year now. The doctor doesn’t want to wean until Olivia is gaining weight more consistently. Her numbers have been great with and without oxygen though, so that is very reassuring! Olivia had a renal ultrasound recently also. We haven’t heard the official report from her renal doctor yet, but the report we got shows that both of her kidneys have grown since last time. That is really good news since the left one had been shrinking each time she had an ultrasound in the past. We also had some blood work done for her endrocine doctor. The results from that were really good, and we will no longer have to give her stress doses of steroids! At last check Olivia’s kyphosis in her back was slightly better than it had been. It wasn’t a huge improvement, but it gives us hope that as she starts walking more, it will improve on it’s own. We still have nurses who come into our house and care for Olivia every day. It is such a huge piece of mind for us knowing that Olivia is getting the best possible care every day. Her nurses love her and she loves them! We are so fortunate to have the two wonderful nurses that we have. Enjoy a few new pictures of out cutie pie! It’s hard to believe that she will be 2 in less than a month!

My Grandma made this apron and hat for Olivia for Christmas!

Just sitting playing with her beads!

Olivia was having a tea party using her stool as a table.

This is just one of the photos we had taken recently.

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!

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!

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.

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.

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!

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!

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!

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!

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!

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!

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.

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!