Coughing + Trach = ER Visit

Coughing is uncomfortable, but not usually serious. Trachs are serious, but not usually uncomfortable. Together, coughing and a trach mean serious discomfort and TROUBLE.

Serious trouble showed up at our house at about 10:00 on Sunday night. This trouble had not visited for several months, and our poor memories were quickly reminded of how demanding this uninvited guest can be. Each cough causes the trach tube to rub against the inside of the windpipe. After several coughs, this rubbing causes soreness. After even more coughing, the rubbing leads to a raw windpipe and eventually blood. Oh, yes and uncontrollable coughing also results in lots of vomiting.

After a night of constant coughing and suctioning and a day of more coughing, lots of vomiting, no fluids and a fever that spiked 105, I took Crewe to the ER at Phoenix Children's. I was hoping to make it at least a year since we last visited that place together, but we only made it 11 months.

The ER was completely slammed and we waited hours for someone from the IV team to come give Crewe an IV for fluids. In the meantime the doctor gave him a dose of steroids that significantly reduced his coughing and let him fall asleep. After drifting in and out of sleeping for a few hours, he woke up happy, drank 4 ounces and handed the doctor a book he wanted read to him. Those 4 ounces got him off the IV list and we made it home by 2:00 am this morning.

Crewe is clingy, but happy to be home. He hasn't spiked a fever at all today and is coughing less and less.

Home Sweet Home on Valentine's Day

Gotta LOVE being home in the sunshine! We were lucky to get out of Dallas on time after the record snowfall on Thursday and before the ice storm and fog on Sunday. We made it back just in time to celebrate Valentine's Day. Cal got into it this year and loved making valentines and (eating) cupcakes. We celebrated with a special valentine breakfast before church.

On a related note, there's so much to report about what we learned while in Dallas. More to come soon on that.

Oh the Weather Outside is Frightful

But the fire is so delightful.

Who would have thought that the first time the boys would see and feel snow they would be in Dallas Texas? Crazy! And the snow is still coming down (photo from 9 am).

The doctor's office closed at noon today because of the weather so we were only able to do one treatment. We're scheduled to fly back to Phoenix tomorrow morning and we're crossing our fingers that the weather with cooperate.

More Progress

Crewe's treatments seem to be especially effective on his hypotonia. Yesterday morning we caught him taking steps on his own around the coffee table. He even rounded the corner without falling!

Just two more days of therapy here in Dallas and then we're headed home to continue treatments with the biomodulator.

Sunshine in the Cold

We whimpy Arizonans have been starved for sunshine since we arrived here in Dallas almost a week ago. The weather has been cold, overcast and wet. While the temperatures haven't improved, we had some beautiful rays of "sunshine" this weekend.

First, Grammy arrived on Thursday night. She came to help with the boys while I was in a two-day training for a medical device and Chris took Crewe in for his twice daily treatments. She was such a great help and the boys especially loved having her around. Crewe cried when she left for the airport earlier this evening.


Second, Chris and I got to go out with the Clawsons on Saturday night. Carrie is a former college roommate of mine and a long time friend who lives in Dallas. We went out for Texas style BBQ and enjoyed catching up.

Third, the smiles that come from visiting the clearance aisle in the Walmart toy section. Chris picked up this little drum set there for $5. The boys have had a blast banging on it and we aren't going to feel a bit bad when we leave it here.

Early Progress

Just 36 hours after Crewe's first treatment with Dr. Tennant, we are seeing results. Yesterday morning he pulled himself into a standing position for the first time ever!

He has repeated it a few times since and it still surprises him when it happens. He's so excited to be standing that he temporarily forgets how to sit back down.

On to another day of therapy...

Hello Texas!

Monday was a very long day, but we and all of our bags made it to Dallas safely and in time for our 2:30 appointment with Dr. Tennant. We underestimated how taxing the traveling and change of schedule would be on the boys and poor Crewe ended up in complete meltdown mode during his appointment.

Even though Crewe hit the wall at the doctor's office, the appointment was very productive. We are very impressed with Dr. Tennant and appreciate his gift for explaining complex concepts in simple terms. His assessment of Crewe revealed a few things:

• Crewe's overall energy level is only about 50% of where it should be
  
• His thyroid is not healthy and is the primary cause of his low energy
• Soy (formula and milk) and all of the abnormal activity going on around is thyroid are the likely cause of his thyroid issues
• Crewe's food allergies are directly related to his lymphatic malformation (cystic hygroma) and will only improve as his lymphatic system improves
  
• As long as his energy is low, hypotonia and the associated delays in his motor skills will continue to be a problem

Crewe's treatment plan includes taking supplements, sitting next to a special light twice daily and receiving biomodular therapies. We make two visits daily to the office and continue treatments nightly at the hotel.

More to come later.