Test Results

Testing in progress

Laityn had her sweat chloride test in order to get a definite answer regarding her inconclusive Cystic Fibrosis screenings. So if you are wondering what a sweat test is, its where they collect sweat and the look at the sodium content to determine whether you have Cystic Fibrosis or not.

Slept through the whole thing!

 First, they apply electrode like things to the arm in order to stimulate the sweat. Then, they put a piece of gauze on the arm and wrap it with plastic wrap. Then they put some super warm blankets on her and left her like that for 1/2 hour. They do this to both arms in order to get enough sweat collected. They didn't get enough the first time around, so they did it again. Fortunately, they collected enough the second time so we didn't have to try again a different day. Whew! We were happy when the test was over - I couldn't stand staying in that 80 degree room any longer!

After the test we met with the pediatric pulminologist where they asked a whole bunch of questions regarding symptoms, family history, and what steps would be taken if the test came back positive. It would involve DNA testing for both Josh and myself and treatments for her. They didn't have the results back yet at the appointment, but about an hour later they called and said she passed! No Cystic Fibrosis! We were very thankful and relieved that no other actions had to be taken. We have for sure one more doctors appointment for Kamryn - the pediatric cardiologist to do an EKG and Echo to check her hypertrophy. This will take place the end of July. We are naturally a little nervous for this upcoming appointment too, but we are praying everything turns out okay.

Surgery Day

We had in inkling this day would come, and unfortunately, it did. Macyn was scheduled to have her ear tubes redone and her adenoids taken out. This is her 3rd set of tubes, so we are used to the procedure. However, adenoids meant a little more anesthesia, IV's, being intubated, and a longer recovery time in the hospital. Our day started bright and early, and we all didn't eat breakfast since she couldn't have anything after midnight. We just couldn't bring ourselves to eat in front of her. Her surgery was scheduled at 9:00 so, its hard to tell a three year old no drinks and no food. I needed a little something since I'm hungry most the time, so I hid in the bathroom and drank some Mountain Dew :)

We let Macyn pick out her jammies for the surgery and her shoes. She chose her stompees and all the nurses loved them! She also wanted to bring her blankie and her teddy bear that Great Grandpa Stan had given her when she was a baby.

Rock'n the gown

 We did some paperwork, they went over the risks and what to expect, and then we waited in the room until it was time to go down to the surgery.

About 15 minutes before the surgery, they give them sometime called, Versed to make them calm. Its a drug that pretty much makes them loopy. They can often have double vision and have a hard time standing up. It didn't take long for this to kick in - check out the video of her laughing hysterically at basically nothing:

Shortly afer that she chose to be brought to surgery in a wagon instead of a wheelchair.

Then she was off to surgery. The surgery itself took about 15 minutes longer than expected. Everything went mostly well, except in one ear, the hole in the drum was 2x larger than normal. I guess this is just something that happens sometimes. The Dr. told us that 90% of the time the hole will close on it's own - we just have to wait and see. Adenoid surgery went well too, she just had a scratchy throat from being intubated. They said her adenoids did look infected, so it could have been contributing to the recurring ear infections and fluid.

Sleeping during recovery

From when we went to recovery until we left, was about 4 hours. There were sad times, and lots of sleepy times. She did eventually perk up after some tylenol was given and wanted to eat. She thought it was pretty cool to have ice cream, popsicles, a bed that moved, AND a TV all to herself. Once she ate and drank and was acting normal we were discharged. She rode in a wheelchair down to the main floor and we headed home.

Once home, she was still tired. We have to follow up with ear drops, nasal spray, and an antibiotic. She hates the ear drops, and once we convinced her to do the nasal spray she liked it, and the antibiotic she likes too. Her sleep schedule was a little off, so we had a 2:00 am wake up call with her thinking its time to be up for the day. But so far everything is going well and hopefully it continues!

Some "quotes" from the day:
When describing why she has an IV: "My hand is really thirsty. It needs a drink"
While going to the bathroom on the tall potty in our room: "Mom! My pee sounds like music!"

In the Clear!

We had Macyn's 2 month post-op checkup today and we have received some good news - we should be in the clear! 

The bumps we found on her incision site were thought to be stitches that were under the skin, coming up to the surface.

Also, we have 100 percent certainty that what Macyn had is Atypical Mycobacterium Avium (ATB). What happens is, once they removed her lump, they test it for both Tuberculosis and ATB. Once they narrow it down to one or the other (in this case, ATB), they send it off again to try and grow it. We have received results that they were successful in growing this strain that she had and there had 100 percent proof that she had what was suspected all along. 

It was a good relief to have all this positive information. The only thing that would ever come from this would be her incision - about 1.5" on her neck. I am willing to take that in exchange for a healthy, normal, kid. 

Its a great feeling to close this chapter in our lives and move on. I am so thankful for the wonderful doctors who took care of her so well, and treated her like one of their own. We are so thankful for the support of friends and families who prayed for us and had encouraging words during this stressful time, and are just so thankful how the Lord took care of us and completely healed her. So many blessings!

Final Answers

Hiding in the corner eating Chex Mix she hid in her bike trunk

We had our post-op appointment today. It would consist of going over the pathology and cultures reports as well as other symptoms to look for, going forward. At the appointment the Dr. first went over the pathology. The cells that were making up the mass in her neck were consistent with the atypical mycobacterium (ATB) that she had. They also were able to pinpoint the exact bacterium that she had. He said there are different kinds of ATB, and the exact one she had was very rare. So it pretty much meant that her getting ATB is rare - and the actual bacteria that caused hers was rarer than the most common ATB's.

So going forward, we just have to watch the incision on her neck and make sure no other masses begin to grow. If a little bit was left in her tissues, it could come back. We also have to watch and see if any bacterium made it to the outside of her skin. He doesn't think either of these things will happen, but it is possible and we have to watch for that. Other than besides information on how to care for her incision, he was very confident in the surgery and that it shouldn't come back. He said it is rare to get an ATB, and would be even rarer for her to get it again. Hopefully we won't ever have to deal with this again.

We were in and out of our appointment within 15 minutes, so we decided to run a few errands around town, which included me exchanging a gift for a swivel store. You may have seen the infomercials advertising this product. Its pretty much a spice rack that takes up only 4" of space in your cupboards. Here is before and after:

After some gift returns, we went out to eat at Valentinos. It was nice spending the night together as a family. I know I have said this many times, but we really appreciate all the thoughts and prayers people have been sending our way. We have even received a couple of cards in the mail from people in our church saying they were praying for us and will continue to pray. We don't even know these people. Its amazing to me how many people remembered Macyn during this time. We will continue to pray that this is the end of the ATB, and it won't come back. Again, thank you everything. It truly is appreciated.

Doctor Present

During our stay in the hospital, we had the opportunity to pick out a present from a room where people have donated (including a truckload of toys from Mattel!) toys, games, books, and other gifts. We chose the Little People Camping Set, and the Fisher Price Doctor Kit. Some lady also donated all her holiday bears to the Children's hospital for the kids, so we brought one of those home, too. They also had a wrapping station where we could wrap the presents. It was nice to get a break and lighten the mood a little bit to pick out something and wrap it for Macyn. When we got home she kept asking about the, "present from the doctor!" so we let her open the camping set. She LOVES it! Its pretty cool - the camper actually folds up like a pop up camper, and it comes with chairs, a fire, sleeping bags, cooler, car, and even a fishing pole. It is now one of her favorite toys to play with. We are thankful for the generosity of people donating to the Children's hospital. It really did lighten the mood and its nice to see people helping out families and the kids who do have to spend Christmas at the hospital.

The Surgery

Wednesday was the day of surgery to have her neck dissection done. It was originally scheduled for 12:30 in the afternoon, which I was pretty worried about. How do you tell a two year old they cannot eat for 12+ hours?! (no food after midnight). However, on Tuesday afternoon they called and said she would then be scheduled for 9:30 A.M. Whew! That we could handle. It takes about 1.5 hours from our house to get to the hospital, so we had to leave by 6:30 to get there by 8:00. We explained to Macyn what was going on, and she kept on saying, "Doctor take out my bump?" The morning after the surgery she exclaimed, "bump all gone!" :) Anyways, here is how the day went.

Macyn had to change out of her clothes and into her "ninja suit"

Macyn with Mommy before surgery

In the meantime, we talked to the anesthesiologist along with the doctor performing the surgery and various nurses. They told us she would be intubated, an IV started, and explained how long the procedure would be. They also had a child life specialist that came in an played with Macyn to make her feel comfortable. She had toys, bubbles, and pictures of what the operating room would look like, and showed her a breathing mask that was first tried onto a bear, and then her. She also showed the beds through pictures. I really think this put Macyn at ease, and not to be scared.

Looking at the different pictures of where she would be

Blowing bubbles and playing with a light up Minnie doll

Shorty after she was content, they brought in a wagon and wheeled her off to surgery. I think this was harder on me than it was on her. I couldn't stop the tears from flowing when they wheeled her off...that was by far the hardest part.

Macyn being wheeled off to surgery. You can see the mass that is going to be removed on her neck.

They took her away from me at 9:30. They started the procedure at 10:02, and it was finished around 11:15. The doctor then came in and spoke with us explaining they removed the mass, along with 5-10 other surround lymph nodes that could have possibly been infected as well. They cut the mass in half and sent part to pathology, and the other half to cultures to get tested. We have an appointment Thursday to get the final results of the mass on her neck. He also said she has a 2"-3" incision on her neck. They also explained that she was waking up from the anesthesia, and we could see her as soon as she's awake. We finally got to see her at 11:45. Seriously, one of the longest 2+ hours of my life!

Macyn and Mommy in the recovery room

After she woke up a little bit, and her pain was being handled, we were brought to our room at the Castle. She pretty much slept and cried the entire day. A couple of times she would sit up and attempt to play with some toys, but she was zoned out most the time.

She wouldn't eat or drink anything, and we were worried we wouldn't be dismissed the following day. She had an IV pumping her with fluids, but she still needed to start having wet diapers and getting nourishment. Well, she started once we tried putting her at 8:30. It seemed she was going to sleep, until she suddenly started asking questions and talking and smiling! We did get her to eat some pudding about 9:30 PM.

First smile after surgery - complete with chocolate pudding!

The night was pretty rough. She was up from 1:00am to 3:00am, and woke up again at 5:30 am. Through the night she was crabby, but in the morning she really started to perk up, and had a few more bites of pudding, and 1 bite of a muffin.

Starting to feel better!

I am happy she was feeling well, I decided we would only give her tylenol to help subdue the pain, and it seemed to be working. To be honest, I didn't think we would be dismissed with how much pain she had the previous day and night before. Its amazing what 24 hours does. We then met with the doctor, gave us instructions, and dismissed us. He also removed the dressing and a drainage band around her incision. I think Macyn was pretty happy to go home - and that she could finally sit on, "Mommy's hopsital bed."

Ready to go home!

She is doing well at home, sometimes acting like a normal 2 year old and other times more tired and a little out of it. We are thankful this recovery has been good so far, and extremely thankful for all the thoughts and prayers. We are still praying they got the entire infection and we will be completely out of the woods soon!