Background on our Addy

For our upcoming trip to Mayo Clinic, we are planning on keeping everyone updated through this blog. Who knew I even had it? :) I felt like it would be a good idea to give everyone an explanation of why we are headed to Mayo and tell a little of what Addy has been through.

**Disclaimer - this is a long post, so you can skim if you want. This is also so we can show her what a testimony she has when she gets older! **

When Addy was 3 months old, she got sick for the first time. It landed us at Vanderbilt Children's ER. This is where her story starts....

Addy and her Daddy. This is in the middle of a swat call out. He left and came to the hospital to be with us, and we took him back to the call when she was discharged.

 

 

That visit was not as eventful as others to come, although we were pretty scared. She was given a breathing treatment, a shot of Rocephin, had a chest x-ray, and we were sent on our way. Diagnosis : pneumonia.

 

 

Four weeks later, she started getting sick again (high fevers, wheezing in her chest, horrible cough). We went back to our pediatrician, and he sent us straight to Vandy ER again.

 

 

Even though she is all smiles (and cuteness), she was pretty sick again.

 

The details of this visit are not as clear, although we do know they did another chest x-ray. She was also given a shot of Rocephin again. Diagnosis : RSV.

 

 

We were sent home, and guess what? Fever spiked during the night along with labored breathing landed us right back at the Vandy ER the next day.

 

Our brave girl doing her breathing treatment so well :)

 

This visit lasted longer than the day before, although we still felt a little bit like we were rushed out the door. Her diagnosis remained the same, RSV. I have no pictures to document the next event, which was 3 days later (David's birthday!). She was once again sent to the hospital. FINALLY, she was admitted for overnight observation and IV antibiotics (Rocephin again). Although we didn't feel she needed to be sent home the next day, we were discharged to follow up with our pediatrician. Diagnosis : Pneumonia.

 

 

During her follow-up at her pediatrician. She quickly became accustomed to the neb and rarely fought it anymore.

 

 

So here we are, Addy is now 6 months old. That's right! By the time she was 6 months old, she had been diagnosed with pneumonia twice and RSV once. I know for sure there was also a diagnosis of bronchiolitis in there somewhere, too. I don't have any pictures though, so it's hard to remember where it fell.

 

Over the course of the following months, she stayed mostly healthy. We did have one more diagnosis of pneumonia in May of 2012 (10 months old) that I found while going over her medical records. No pictures of that one either.

 

Fast forward to September, 2012...

This one melts my heart <3

 

One morning out of the blue she started running a high fever. We went to her pediatrician's office. We were told she had a virus, and she just needed rest and fluids. Until two days later.....

 

 

Cutest Vanderbilt patient I've ever seen

 



She was admitted for very low pulse ox (and labored breathing), high fever, and after taking a chest x-ray.... Pneumonia.  She was given an IV of antibiotics (Rocephin), and we were kept overnight. They sent us home the next morning on antibiotics and to check up with her dr.

We are getting good at neb treatment selfies, huh?

 

We followed up with her pediatrician a few days later, and she still had a bad case of pneumonia. The antibiotics were not working, so we went back to the ER.  We were not admitted, but the (new) chest x-ray the took showed the pneumonia was not any better from the visit the week before.

 

It was at this point that our pediatrician said she had a lung issue that needed to be treated by a specialist at Vanderbilt. We were so happy to finally feel like we were on the right track to getting her healthy. We had to wait a few weeks to be seen, and in the meantime her pediatrician scheduled a sweat chloride test. I had no clue what that meant, but off to Vandy we went. It was a weird procedure, but as we were walking in the door the sign said CF testing room. Cystic Fibrosis?! I couldn't even think straight. Again, thankfully the test came back clear. She was not even close to being borderline for additional testing.

 

The first visit with her pulmonologist had a diagnosis : Broncheotracheomalaycia (spelling??). We were told she had a floppy airway, and she was aspirating liquids. They scheduled a swallow study, and she failed. This confirmed the diagnosis, and the pulmonologist scheduled a surgery to go in and fix it (if he could). He also brought in an ENT to see if there were any noticeable issues he could find while they were in surgery.

 

Surgery day! Yes, she wore her bow to surgery!

 

Lovin' on Nana after coming out of anesthesia :)

 

She did great in the surgery, but they didn't find anything to fix. For about four months, we thickened her liquids to the consistency of honey. This would prevent her from aspirating again and hopefully allow her lungs to heal. She passed a swallow study about 4 moths after her surgery, so we were told to stop thickening after weaning her off of it for about 2 weeks.

 

During the thickening stage, her pulmonologist ordered a brain CT to show if she had a mass on her brain or a deformity that was misfiring the signals in her brain on how to swallow. Thank the Lord, her CT came back clear...

Waiting on the anesthesiologist to come in to get her....

 

Post CT scan and waking up grumpy!

 

At this point, Addy went about 4 1/2 months without any sickness. Until April, she started running a fever again.

Notice her rosy little cheeks... Bless it.

 

Once again, I can't remember the exact details of this one, as they all run together. But I do remember this. Diagnosis: pneumonia. It was confirmed through a chest x-ray at Vanderbilt. We did all the follow ups with our pediatrician and about a week or two later, he said she was great. Her lungs were clear with no pneumonia.

 

 

We are now in June 2013 and Addy is 23 months old. We went to a family reunion for my Mom's side of the family (Owens family). That morning she didn't feel good. We could tell, but we thought we would try to make it to the reunion and see how she did. Being the uber-prepared momma that I am (haha), I brought our thermometer, pulse ox meter, and meds with us. When we got there, she was not breathing great. She had obviously gotten worse over the ride there. We didn't see a need to go straight to Vandy at that point. We gave her motrin, albuterol, and flovent (both are steroid-inhalers). She perked up a little bit, so we felt ok to go home. On the way home, I knew something was not right. I leaned over the seat, checked her pulse ox, and it was 77 (normal is 93 and above...anything below 92 is dangerous, especially for her). We were pulling in the driveway when that happened. We ran inside, grabbed a few things for Ella, and flew out the driveway. Mom and Dad met us and got Ella, and we hauled it to Vandy.

 

This was our view of her in the ER.... Such a sick baby :(

(This picture is still hard for me to look at)

 





After being in the ER a few hours, they began a constant breathing treatment of saline called a hypertonic breathing treatment. While doing this, we asked if we were being admitted. The nurse laughed and said, "We are trying to decide if she is stable enough to go to a normal room. Right now we are leaning towards the ICU." Holy moly......... I am pretty sure it was around midnight when we heard that. We were exhausted, emotional, and scared to death. I literally broke down... It was the hardest night of my life. Thank goodness she improved enough to be put in a normal room. (Yes, diagnosis was pneumonia).

The next morning...worn out, on oxygen, and beautiful.

 

 

Paging Dr. Addy :)

Uncle J came to see her while we were there

 

She had lots of visitors! Such a loved girl!

Probably her favorite visitor, her sissy.

 

We were in patient for 8 days... I have never been so worried. She had a lot of trouble regulating her oxygen at night, which is why we were there so long. During the day she was ok, so in the pictures above you can see the little circle things on her face but no oxygen hooked to them. During naps and at bedtime, her oxygen would fall to the low 80's and she would require the support of oxygen throughout the night. At one point, we were told we were being discharged with oxygen tanks to use at home. Overwhelmed. David and I stood there listening to them going over the instructions and requirements, and I am 99% sure I didn't hear one single word they said. All I could think was that she was not going home on oxygen. I knew we were being sent home too soon (this was about day 5). Her pulmonologist found out the drs in the hospital were planning on discharging her, and he stopped the discharge papers. We stayed three more days, the meds were changed, more x-rays were taken, another swallow study performed (passed), and then we were sent home with no oxygen support.

 

We knew at that point that whatever we thought we were doing right in regards to keeping her from getting sick again was not working (clearly). So back to the drawing board. We had more visits with the pulmonologist, and his next step was blood work. They drew quite a bit of blood, and our little trooper took it really well. It was sent to immunology, and it came back clear, too. No answers there. So we were waiting to hear the next step when.....

 

In the ER, fever of 104

 

September came and back in the ER we went. Chest x-ray, rocephin shot, and lots of fluids later we were discharged. Diagnosis: bilateral pneumonia. Ugh. Major frustration started setting in at this point (more than usual). 

 

On to October where we found ourselves with a sick little one once again....

Weak eyes and feverish cheeks :(

 



 



 



This time we did not end up in Vanderbilt, but she stayed sick for a couple of weeks. We met with pulmonary and ENT again. They scheduled an MRI of her lungs that was 3-dimensional. She had to be put to sleep again for this so they could fully manipulate her lungs. This was done in October.

 Vanderbilt lets you color on your sheets while you wait to be taken to your procedure. They both loved it!

 

The MRI showed quite a bit of scar tissue built up in both lungs. There was a big concern about it, but then we were later told there was not nearly as much as they had thought.

 

 

From here, they scheduled us with a GI Dr. to look at the possibility that she may have reflux. She was already taking Zantac 2xday and they added Prilosec in September. After meeting with GI, he, the pulmonary dr. and the ENT decided to do another surgery to see what they could find. It was done in December.

She is the cutest doctor I have ever seen!

 

During the surgery, GI put an impedence probe in that she had to wear for 24 hours. She was supposed to eat and drink like normal, which is hard with a wire running up your nose and down your throat. She did great with it though.

She really didn't want her picture made, and she was furious after waking up from anesthesia. But it was too cute to pass up.

 

 The probe showed traces of reflex even while she was on the meds twice a day. So we were told she had reflux and to keep her on the medicine indefinitely. It was the key to keeping her healthy.

 

For 6 months, she stayed healthy! We thought we had figured out the puzzle, and we were past the worst of it. At the end of March, my brother got married in Gatlinburg. While we were there, she started getting sick: high fever, wheezing, labored breathing, etc. We had all the supplies with us, so we started the sick regimen we have. We got home and took her to the pediatrician. She was diagnosed with a chest cold. She got a shot and oral antibiotics to try to ward off pneumonia setting in. Three days later, I got home from work and her fever was near 105. Her pulse ox was 80. David was at work, so I grabbed the girls and ran out the door after motrin and an albuterol puff. I dropped Ella off with my friend and we drove like crazy to the drs office. They got her back and watched her breathe, and they felt like the albuterol opened her up enough that we were safe to drive to Vandy and not go by ambulance. We got to the ER, another chest x-ray was done, and guess what? Diagnosis: Pneumonia. :(

Nana makes it all better :)

She had just gotten her IV in (after two attempts)

 





After being admitted Saturday, they sent us home Sunday. The ER doctors refused to communicate with her pulmonologist. They told us Sunday she sounded much better, so we could leave. Although, we never saw the same dr twice so I am still unsure what they were comparing it to. Overall, Vanderbilt has done a great job of treating her symptoms and getting her over it again and again. But we need to know WHY.

 

 

We have been completely overwhelmed by the outpouring of love and support we have received. There are no words to adequately thank you all for loving our girl and helping her get to Mayo. We didn't know how we would get her there, but you all have made it possible. David and I asked God to show us if this is what we needed to do. Over and over again He has shown this is where she needs to go. We fly out on Monday, April 14. Her first appointments are on Tuesday the 15th. Please pray that Mayo can find the cause and we can get this taken care of.

 

 

We will keep you all updated on this blog every day to let you know what we are finding out while in the clinic.

 

 

We love you all,

 

 

David and Laura