Day 5....The Diagnosis

Well, after a week here with lots of tests, consultations, blood work, procedures, etc etc etc.....

We have a diagnosis.

Bronchiectasis

(brong-ke-EK-tah-sis)

What is it?

Basically, it is a lung disease that causes the airways and lungs to become inflamed and widened. Some of them become misshapen. Once this happens, the airways and lining of the lungs begin to form pockets where mucus can settle. Air pollutants also settle in there.

This causes the airways and lungs to become weakened. As they weaken, they lose the ability to clear the mucus out on their own. This causes the body to recognize that a foreign object is in the lungs which should not be there. It begins to try to attack it. But it can't, because over time the immune system has become lowered to the point it cannot kill the bacteria. Then, it becomes an infection and you guessed it - pnuemonia.

 How did she get it?

Right now, we are still not 100% sure. Her (amazing) doctors here do not believe she has congenital bronchiectasis, but acquired bronchiectasis. This means they don't think she was born with it. Although at this point, it's hard to know for sure. Their best guess is she at some point was not treated appropriately for a pneumonia, leading to the bacteria remaining in the lungs. This caused the airways to become inflamed and weakened.

How serious is it?

It is pretty serious. Left untreated, it can lead to respiratory distress, pulmonary hypertension, loss of oxygen to vital organs...... 

BUT, we have a very aggressive treatment plan to beat it.

How do you treat it?

We have a game plan that is 2 parts: Healthy days and Sick days.

 Healthy:

She will have to do a hypertonic saline nebulizer treatment twice a day. After the treatment is done, we will do chest percussions on her for 20-30 minutes each time. We have little cup-like things that we use for this, and we use them on her chest, under each arm, and on her back. The entire time we rotate her position to try to get her lungs from every angle. She is also being placed on antibiotics for the next 3-6 months that she will take every Monday - Wednesday - Friday. The antibiotic they have prescribed her has an anti-inflammatory aspect to it that we are hoping will help the inflammation in her lungs and airway.

Sick: 

We will increase the nebulizer treatments to 4 times a day with manual chest percussions each time. She will be seen by her pediatrician at the first sign of sickness, who then will call her pulmonologist here at Mayo. She will decide which antibiotic to proceed with. 

Is it reversible / curable?

Yes and no. When you are diagnosed with bronchiectasis as an adult or when it is congenital, the answer is no. It is not curable or reversible. You have to work hard to maintain your health. 

As a child, when you develop acquired bronchiectasis, the hope and goal is that you can try to reverse the diagnosis - not the damage.

Meaning: Her lungs have 'significant' damage already. There was a stark difference in the CT scan taken here on Wednesday and the one taken at Vanderbilt in October. This is very concerning to both us and the doctors, especially considering there was only one diagnosis of pneumonia during that time frame.

This damage is permanent. There is no reversing what is already done.

However, we are praying and hoping that through the course of the aggressive treatments we are beginning, that we can reverse the diagnosis. Her doctors are hoping that as she continues to grow and develop, we will alleviate the build up of mucus and bacteria in her lungs. This should help the pockets to close and the inflammation to go down. It should also help her immune system to be given a break to finally be able to create some sort of a strength against air pollutants and viruses.

What did the sleep study tell you?

We discovered during the sleep study that during 9% of her sleep, she was breathing at a dangerous level... her pulse ox was WAY too low. A good level is 93+. Anything below that is bad, anything in the 80's is really, really bad (especially for her). She was remaining in the low 80's for 9% of the night. That may not seem like much, but the continued effect of this night after night can be detrimental to other organs. They are comfortable with a child being that low 2-3% of the night. So we will be getting oxygen at home for use at night. 

We will also be having a heart ultrasound done at home to make sure that her heart has not already been damaged by all of this

. If it has, the hope is that by having her on oxygen now it will repair itself.

What did the impedance probe tell you?

We have found that she in fact does NOT have reflux. There was no evidence in the airways or the lungs of reflux. During the probe, they did see reflux but not a significant amount that would be treated. They said that basically we all have a small amount of reflux. No one would have a completely negative probe, especially after having the procedure done that she went through. They have taken her off the meds she was on, because long term these can cause recurrent infections in the lungs (ummmm....WHAT??). Imagine our surprise to hear that we have never been told of the long term risks of the combination of the medicines they had her on. The risk is the EXACT thing we are fighting. Here again we just thanked God to be here at Mayo with her.

Other findings:

Cystic fibrosis: negative!!!! Thank you, Lord. A large percentage of children with this condition also have CF, so we are so, so thankful to not be traveling that road.

She is also anemic and Vitamin D deficient. We are putting her on supplements for both. Although they don't feel this has contributed to her condition, it does explain some other issues we have noticed. And it's also just not good for her overall health to be anemic. 

Do you have to go back to Mayo?

Yes, we do. We will be back in 3 months to follow up with immunology and pulmonology.  They will repeat blood work, and we will try to see if we are progressing in the right direction. At some point in the next year, they will repeat the procedures done Wednesday in the OR to make sure no more damage is being done to her lungs. 

It's a lot. It's hard. It's scary. 

But, it is FINALLY an answer. We cannot even explain the peace we have just knowing what is wrong. We have always said we didn't care what it is, just having the knowledge to know how to accurately treat her is all we want. We feel prepared to go home for now, thankful to be able to have been here because of all of you.

Without our amazing family and friends, we could not have gotten here twice. We couldn't have missed work and been able to still pay the bills at home while paying to stay here. We cannot thank you guys enough for your roles in all of this - you have prayed us through the hardest time in our lives. Addy is an amazing little girl. She is going to have an unbelievable testimony one day. She is blessed to be loved so much by so many. 

I will still be blogging here and there! I will keep you all posted on how treatments are going at home and also of the next travel dates to get back up to (the hopefully much warmer next time) Minnesota once we get them.

We fly out tomorrow morning! We can't wait to hug some necks (Ella!!) and love on our family. 

See you soon!

 David and Laura (and Addy Brynn)

Days 3 & 4

Wednesday / Day 3:

We got up and headed to St. Mary's Hospital for Addy's procedures. She was having a triple scope (pulmonary, ENT, GI), a chest CT, lab work done, and two biopsies.

We were told to be there at 8:15, and the procedure would start at 9:15. So we got Addy changed into her super-cool Dr. gear to get the show started.

They took this picture of us before we headed downstairs to CT waiting. I love it. So thankful they do things like this.

Dr. Addy is ready to go! 

Unfortunately, the procedure before hers hit some snags, which left us waiting and waiting and waiting... Like 1 1/2 hours waiting. And she was hungry. Everyone knows

Addy LOVES to eat. She wakes up 'so hungy' and asking for food. So waiting until 10:40 to get started was HARD.

Finally, they got her back. They asked which one of us wanted to walk her into the CT room and stay with her while she went to sleep. Obviously, I can't stand not

 being with her (sorry Daddy) so I went. 

Oh. my. goodness. 

That was so hard. Watching her be so scared while they held the mask on her face was 

hard and extremely emotional for me. She held my hand really tight until she was asleep.

They let me kiss her before I was escorted out, a blubbering mess.

David wasn't sure what happened when I got back to the waiting room, because he couldn't understand what I was saying. Mostly, I never want to have to do that again.

We waited for about 2 hours before we got to meet with the Drs. They placed the impedance probe in and told us that they would feel more comfortable with us staying overnight for observation rather than staying in our hotel. Then we returned to the waiting room for about 30 more minutes until she was in recovery and we could go back.

 The top two pictures are recovery room pictures.

The bottom two are in the room we stayed in for the night. She did not move for a good 6-7 hours. We tried everything to wake her up.

At one point, she sat straight up and said "I wanna get up!!!!" and then flopped back down. It was about 4 more hours until she actually got up.

Overall, she did great with the probe. She woke up finally around 9 pm and went back to bed at 11:30. They woke us up around 8 to get some vitals. So we did get a decent night of sleep, although sleeping on cots and a couch that feels like concrete are not great for comfort :)

Watching Frozen for the 1,0000,0000,000 time

 

 

 

On Thursday, we were discharged from the hospital right at noon. We had to go straight to the other main building for a 12:30 sweat chloride test (Cystic Fibrosis).

During the CF test - they had sterile gauze under all that wrapping to collect her sweat. She HATED it.

 That test took an hour and a half, so we were finishing up right at 2. We had a 2:00 appt with an allergist/immunologist so David left the testing room early and went to check us in for that appt. When we got there, they were calling us back. That appointment took 2 hours!

 Whew, we were exhausted. 

By the time we got back to the hotel, we had about an hour and a half to eat, repack a bag, and leave for the sleep study. Addy and I headed back downtown leaving David at the hotel with a nice, comfy bed with big fluffy pillows sad and alone. :) 

When we got there, they were playing classical music and Addy decided to do a ballet performance for the other people waiting for their sleep study. 

Hilarious. Words cannot express how funny it was. I think at this point she had hit delirium?! She would usually get really embarrassed, but she just kept going even when she noticed people watching her.

Part of her performance :)

My little robot

It was another long night, but we got a lot of information from her sleep study. So it was worth it! The next post will have the diagnosis and info we were given today!

Day 2

Have I mentioned we love this place?

I mean, every single thing that makes a child feel more comfortable, less afraid, and keeps them occupied has been done. 

Like the waiting rooms....

They have tvs on the floor. Seems simple, but she loved it! She can actually see the tv while she plays and colors. They had a stage, which was perfect for our performer extraordinaire.

When they call you back into the rooms, there are no hard back chairs to be found.

Every room has a couch with a tv that has a video on demand service. There is just about every Disney movie ever created available. She got the pillow that was offered, turned on Monsters University, and snuggled up. It is the perfect exam room. 

They also have stuff on the walls, like this heat sensor. You press your hand against it and it shows the heat from your hands. She loved it 

{so did her daddy, for those of you who saw his facebook picture earlier. Yes, that really happened, yes I am embarrassed, yes he is just as bad as she is!!}

Now, onto the good stuff :)

Her first appointment was with the ENT and speech pathologist. They wanted to do a swallow study to re-confirm that she is no longer aspirating. It was done differently than at Vanderbilt. Instead of it being an active x-ray, it was done with a tube run up her nose, into her throat. It had a camera at the end so we got to watch as she drank, ate soft food, and had regular food. 

She was a champ!! 

She hated it, but she did everything they asked. They were shocked. They told us they get kids her age to cooperate around 30% of the time. 

We took her and got a prize when we were done :)

Result: no aspirations!! 

We kinda figured that would be the result, but it's nice to hear it again. They did say that from the angle the camera is placed we should not have been able to see her tonsils, and they were very visible. David and I even noticed them without them being pointed out to us. 

The drs. all agreed that because of this, they are so interested to see her sleep study.

Next appointment: GI. This was quite interesting. 

The dr was so kind, and she really listened to our concerns about the possibility of reflux and medication for life {this is what we have been told from her specialist at home}.

She said that she honestly doubts she even has reflux, from her symptoms and 

tests that they received from Vanderbilt. She even said that being on the medication she is on for as long as she has been could lead to increased infections in the lungs....

Really?

Again, can I just say that we are SOOO thankful to be here. 

We have never been told of the risks of these medicines long term, and we feel so thankful that she was willing to hear our concerns about it. 

She will be doing a part in her exploratory surgery tomorrow and then placing an impedence probe that will stay in 24 hours. There is a very good chance we will have to stay in-patient over night because of this. The probe will show reflux. We are conducting the study off of medication. She said she would be absolutely shocked if she does have reflux, because to her, she has no signs or symptoms of the type of reflux she is being treated for.

Last appointment: Pulmonary / Sleep Specialist

We met with Dr. Baughn who is the primary pulmonologist assigned to Addy's case. She is also a sleep specialist and will be conducting her sleep study Thursday night.

We reviewed everything with her, both sleep and lungs. 

She decided to add a biopsy of the lung tissue to the surgery tomorrow.

She mentioned how interested she was in the results of the sleep study, too. So now we are! Even though we really don't know what they are looking for and how it contributes to her lungs. All we know is, it does. So we are thankful they are running every test they can. 

Overall, today went very well. It was longggg and bless it, Addy was over it. 

It was nothing a little ice cream couldn't cure :) 

 We are anxious and excited for tomorrow.

We have to be at the hospital at 8:15. 

The chest CT is first, which she will be completely sedated for.

After that is completed, she will be moved to the OR. 

They said it should start around 9:30-9:45 and last approximately

 2 hours as far as anesthesia goes.

Please pray for Addy and her doctors tomorrow! We are praying for good results, and also a diagnosis to come on Friday. We are so blessed to have such a great support system while we are here. We will keep you all posted throughout the day on Facebook of her progress, so check there if nothing has been posted here. 

Thanks again for the love and support. 

We love you all!

Laura

 

On the Road Again...And Day 1

Hello sweet friends and family! 

Well, here we are again in the beautiful, not-so-warm and sunny Rochester, MN. We had a great trip here with two perfect flights!

Getting very sleepy!

The Arch and Busch Stadium ~ Go Cards!!

 

Sweet princess couldn't make it to Minneapolis!

 Once we arrived in Minneapolis, we had a few hours before we could check in to our hotel. So we figured we were only 2 miles from the Mall of America so we headed to check it out. 

It. Is. Amazing.

You could spend all day in there for days and days and not get bored.

Addy got to meet Sharky the Shark from the Aquarium - she was only mildly petrified :)

After spending, well, not enough time in there, we headed to Rochester. Bright and early wake up time to make it to the clinic at 8:30. She had three appointments Monday morning : 8:30, 9:30, and 10:15. I was really wondering how in the world they could schedule three appointments so close together.... We actually got done early! We were taken to a room where we saw all three people we needed to see, without ever leaving that room. They come to you instead of moving you 3 times. It was so nice!

First appointment: we met with the nurse who is in charge of the aerodigestive clinic. She is the one we met with last time we were here. She is wonderful. She was very interested to see the difference in how Addy sounded last time and this time. 

Completely different.

Three weeks ago - completely clear, no rattle. Today - very loud, rattly chest.

Next, we saw the pediatrician who will be following Addy this week.

We love her! 

She spent a good amount of time with us, covering all the basics of Addy's history and care. 

She did an exam, and she said Addy's lungs were so loud and junky 

she had a hard time hearing her heart.

 {So thankful we are here}

 She asked a lot of immunological questions. She scheduled a repeat sweat chloride test to just be sure the one taken at Vanderbilt is correct. This tests for Cystic Fibrosis. Obviously, we need this test to be negative. But so many of her symptoms are aligned with this disease. So to be certain, they are repeating it. 

She also added in a large amount of bloodwork to be taken while Addy is in the OR. This will be sent to the immunologist/allergist we are meeting with Thursday. 

This dr. will already have everything she needs when she sees Addy!

 Have I mentioned we love this place? 

Next, we met with the aerodigestive clinic social worker. He basically wanted to make sure we had all the resources we need while we are here. He got us $15 off our hotel room every night and free parking passes just in case we have an appointment that the shuttle can't get us to. 

Checking out the helicopter pad on the other building

Oh ya know, just the normal hotel room activities - dance party!!

Bedtime FaceTime session with sissy

 

We feel this a great start to our trip! We are getting things accomplished that would have taken weeks and weeks at home. We so appreciate the love and support

 we are receiving from home.

 It is hard to be away {especially from our sweet Ella} 

but we know Addy is getting what she needs here. 

We will update again tonight when we return from our next two appointments :)

Lots of love,

Laura

Coming Home

When we found out on Tuesday afternoon we would be leaving, we got back to the hotel and called Southwest. Again, we had to explain the situation because being SO last minute the flights were much more expensive. We were trying to fly home sometime on Wednesday. The rep at Southwest was so kind and he was able to adjust the airfare on one flight.

The catch? It took off at 5:35 AM. We were an hour and 10 minutes away from the airport, and we had to return a rental car when we got there.  Needless to say, we tried to get as much sleep as possible, got up at 2:15, and hit the road at 3. We plugged the address of the airport into my phone and it said it would take us 1 hour and 30 minutes to get there.... Not good. Mom drove fast and got us there in record time.

I wish I had gotten a picture of what we had to do when we got to the airport. It was CRAZY. The rental car counters were not yet opened, so we had to park the car ourselves. We had 3 suitcases, one backpack, a 2 yr old in a stroller, and a car seat in a backpack carrier. Only two of us. Oh my word, I cannot imagine how we looked. We were sprinting across the parking lot, weaving through construction zones, and trying not to collapse. I had the backpack, a suitcase, and was pushing the stroller. Mom had two suitcases and the carseat strapped on her back! We had to go at least a mile before we reached the rental car counter. We got there, then had to continue into the airport with the luggage. Another 1/2 mile at least.

When we reached the Southwest counter, I tried to walk away after the rep had weighed our bags. She said, "No ma'am, you have to take your suitcases to those security guys over there so they can run them through the machine". Mom and I just died laughing because we were so tired I am sure we both thought about abandoning our luggage and just leaving it there.

We then had to go through security ourselves. At this point it was probably 4:30. We both had water bottles in our purses, which we completely forgot about. We also had packed apple sauce in the backpack for Addy in those squeezy containers. Apparently, those are frowned upon as are water bottles. We got pulled aside and they dumped every. single. thing. out of our purses and backpack. They patted us down, and they even squeezed my ponytail! Again, we just laughed. We were too tired to care.

We finally made it to our gate and sat down for about 5 minutes before we had to board.

 See ya in a few weeks, Minneapolis!

 Sweet silly girl at 5:30 am!

                                                                            

It was actually a pretty bumpy ride from Minneapolis to Chicago. When we got up in the clouds it started snowing and icing pretty bad. It was really pretty to look at, but it was also pretty rough flying in it.

Back in Chicago!

 

 We got back in Nashville at 9am! What a whirlwind of a morning. My dad picked us up at the airport while David was in court. I realized that I didn't have my keys to get in our house, but luckily he made it out of court and home about 5 minutes after we got there. I had started unloading our luggage and setting it at the front door. When he got there, Addy and I went straight to my bed. We laid down and did not move for almost 5 hours. He said by the time he had the luggage in the house we were both out. I guess that's what happens when you experience the worse exhaustion you've ever felt!

Yesterday, we went and got our sweet girl Ella from Alabama! Oh, how we missed her.

We are so happy to be home and back together for 2 weeks before we hit the road again. Mayo called today and we fly back out on May 4th. We will be there until Saturday the 10th. David is making the next trip with us. We are anxious to get there and hear what they can figure out about her! 

We will keep you posted on our next trip!

Laura

*Days 1 and 2*

When flying with a 2 year old, you never really know what you're going to experience. Luckily for us, she was PERFECT. Like did-not-make-a-peep, sat-completely-still, is-she-breathing perfect. It made traveling so easy.

 

Right after boarding her first flight! She was so excited :)

  

It was stormy on the way to Chicago.... dark clouds the whole way there.

 

Perfect weather from Chicago to Minneapolis!

 Just too cute not to share!

We landed in Minneapolis and headed straight to Rochester. It took right at an hour, and our hotel was wonderful to let us check in two hours early. (Plug - if you are ever in Rochester, the Hampton Inn North is SO nice! It's clean, comfy, and they have such a friendly staff. We will definitely stay here again!)  After checking in, we hit the road to tour downtown Rochester. We were trying to figure out how to get to the clinic, but it is confusing!! Thankfully, our wonderful hotel offers a shuttle to and from the clinic.

Mayo Clinic - this is the main clinic, but there are MANY others around downtown. Mayo employs 40,000 people!

 

Nana taught Addy how to do a stink eye! It is pretty cute!

We went to bed early to get ready for a busy Tuesday, and we are thankful for that now. We had to be at the clinic at 11:15 for a chest x-ray. We got there early because we still felt lost, and they had us in and out before the appointment was scheduled. Seriously, love this place! Our next appointment was with Addy's primary pulmonologist here, Dr. Baughn. She is amazing. The appointment with her lasted almost 1 1/2 hours. We reviewed and discussed every aspect of Addy's health. 

She decided Addy needs to be seen by the Aerodigestive Clinic. This is a 5 day clinic that is done by 6 specialists. It starts on a Monday and you are done on Friday afternoon. There are lots of appointments, meetings, and Wednesday of that week is the OR day. She will be put to sleep for a few procedures, and she will be admitted overnight for observation for a couple other things. It is intense, and I am sure it will be exhausting. But it gives us hope - hope for an answer, a diagnosis, and hope for a healthy future for Addy. 

BUT - we are here on a Tuesday, the clinic started yesterday, and it is full for a few weeks. So, we are going home tomorrow! But we are coming back in a few weeks. We don't know exactly when yet. We will find out tomorrow for sure, but it looks like it will be in May. We will start the process then. We met with the nurse today and did the pre-admission for that. While it's not great that we flew here only to go home and then come back again, we are thankful because her doctor already got to see her healthy. She knows what she looks like on a good day. She was happy she got to see her, and the team will already begin looking at medical records and diagnostic images from her past. They will know every thing about her history when we come back. So it's all good. 

We are so thankful to each one of you that have covered Addy in your prayers. Please don't stop. There is still a ways to go. And now another trip to plan. And we cannot thank you enough to those who made this trip possible. It means so much, and we are sincerely blown away by you guys. We fly out (very) early tomorrow morning and land in Nashville when some people are still sleeping! 

See y'all soon!

Laura

T-Minus 5 Days to Mayo

photo by JMcKnight Photography

 

8 days ago, we made the decision to call Mayo Clinic. We had no clue how we would get there, much less be able to afford the hotel, food, rental car, and missing work. But we knew God would work out the details.

My mom sent an email to our wonderful church family, and she created a YouCaring page so people

could help if they wanted. Immediately, donations started coming in. Every day since, we check the website and our mail to find another gift of love that has been sent. Two words sum up how we feel -

 

loved & overwhelmed

 

Airline tickets were provided the day after we posted about our trip. Over and over again God has confirmed to us that we are supposed to be taking her to Mayo. This trip has His hand all over it. Only God could have gotten her in so quickly with the doctors there.

 

 

A couple days after booking the airline tickets, my request to create Addy an online patient portal through Mayo was accepted. It was a little bit tricky since she is 2. I had to create a fake patient portal for myself, and then send in a request to be her proxy. It took a day or so to get through that system. When I got the email telling me I could access her account, which includes upcoming appointments, I decided to double check her appointment. The first thing I noticed was they had added an appointment before her initial visit for a chest x-ray. (THIS is why I already love Mayo. The x-ray will be read and sent to the pulmonologist before he ever sees Addy.) There was only one problem. We are flying into Minneapolis and then driving to Rochester. It's about an hour drive. The plan was to fly in on Tuesday morning, the 15th. Our flight landed at 11:05, and her first appointment was supposed to be at 1:30 pm. But the chest x-ray was scheduled after the flights were booked. Time of the x-ray: 11:15. Exactly 10 minutes after we land.

 

Cue: panic mode. I immediately called Southwest and explained our situation. The rep said she understood, but unfortunately no exceptions could be made to the rate. The rate to fly in on Monday was 3x the price it was to fly on Tuesday - times 3 flights. I had to call our friend who donated the flights to get some information so I could change the flights. We had no choice to change them. Flying in on Tuesday was just not an option. We were just going to pay the difference. I called back to Southwest and spoke to a different rep who after hearing our story adjusted the fare to reflect Tuesday's price. She saved us $600. I am not going to lie, I cried.

 

We decided to open a separate bank account for the money that has been generously given to us to help with these expenses so it does not get mixed in with our day to day money. While sitting at the bank, we had about 100 other places we needed to be. We were called into a lady's office, and we explained to her why we were opening a separate account. She said her nephew was seen very recently at Mayo in Minnesota. He had a heart issue that no other dr would touch. Mayo accepted him, and he is healed. She looked me right in the eyes and said she would be covering Addy in prayer. I had tears in my eyes when we left, because God put her in my path. It has given us such a peace about everything.

 

We have been told of Addy being added to church prayer lists all over the place. It is unbelievable to know that so many people are praying for your child. Thank you is just not enough, but it's the only words I have. We fly out of Nashville Monday morning, and we will be at Mayo on Tuesday for our first appointment. Every day the blog will be updated, so keep checking back to get updates on our sweet girl! Keep praying, because the prayers are working :)

 

photo by JMcKnight Photography

 

 

Laura