Inside HBC

Albuterol treatments for the first time-a milestone

Albuterol, Miralax, Steroids, Antibiotics

On Monday 11/23 I took Valentino in to see his specialist. Val had been coughing, having trouble sleeping, and he was getting more and more lethargic. The biggest red flag for me was swelling and a reddish blue hue below his eyes. It seemed to me to all add up to a lack of oxygen.

I learned that he had gotten an cold/flu bug and couldn’t get rid of it the same way a non CF-er could. The doc listened to his lungs. They were a mess. Val was wheezing and coughing. His lungs were very tight.

I learned how to give him Albuterol through the nebulizer. His lungs immediately softened, his wheezing stopped and he started cruising around the office–crawling like a madman! It was beautiful.

I left the office with instructions to use the nebulizer 4x daily for 10 minutes. I also had to give Val steriods for 4 days and antibiotics for 2 weeks.

I was told by the specialist that it would be, from here on out, very difficult….sometimes depressing, scary and overwhelming.

I am on day 12 of his new treatment regimine and it’s been great so far! He does squirm a bit during the nebulizer treatments but I’ve got the best team in the world–a whole clinic full of loving people coming and going who keep me motivated. THere’s always somebody around to help me with nebulizer treatments by distracting Val with funny faces and tickles. I lean on my roommates to help take the trash out, do dishes and laundry and help with the tasks that take time away from focusing on Val’s treatments.

Val is breathing better, has tons of energy and I feel pretty hopeful about the future.

Success with new diffused oils

Last night Valentino, Romeo and I took our regular 7:30pm dead sea salt mineral bath (Romeo always reminds me to add salts for valentino) and then tried out the new oils to diffuse from Marlene. I set the diffuser to work for 5 minutes every 45 minutes throughout the night.

We only woke at 12:30 and then again at 4:30am. Valentino coughed a few times throughout the night. Little coughs. It was a relief compared to the coughing from the previous nights that would result in him gagging and then vomiting.

I was so excited with the results that I ran the diffuser again this morning while I dressed Val nearby and then did an extended reflexology treatment. (Yesterday Marlene and I did a training on working on the whole foot instead of just lungs and digestion…but that’s a whole different post…..)

Throughout the day today Val has pushed out little coughs here and there with good force. I am thinking that it’s not cold/flu related–this is CF coughs. So, I think at our next visit to the specialist we will end up with a new treatment plan that maybe includes nebulizers or some other treatment that I don’t even know about yet.

For now I think he’s breathing easy again.

Valentino’s cough- 7 months old

The past three nights have been completely sleepless with Valentino waking up 8-10 times a night coughing himself awake. When I hear him coughing away in his crib I run to the crib and pick him up to help him clear the mucus. During the day he coughs 5-6 times. I presume that when he lays down at night, the mucus is building up and causing him to cough more.

Because he also has weepy eyes and a runny nose…I can’t tell if this cough is a normal baby cold/flu or if it is CF related. Either way, Marlene has put together a new essential oil plan for us to try out.

We will be using a sonic diffuser set to time on and off periodically through the night (only running 5 minutes at a time) to diffuse the following oils:

inula- to break up the mucus

german chamomile- get rid of the waste from the bacteria in the mucus

tea tree oil- anti viral

lemon- immune boost (and it just smells so good!)

eucalyptus- break up mucus

This is a strong blend of oils. The german chamomile in particular comes through and is very strong. I am adding this to the current regimine of running a salinizer next to his crib throughout the night.

I hope this clears up his cough and he can get some sleep and keep breathing easy.

About Valentino

Using Essential Oils to Clear Lungs and Sinuses

Valentino is still fighting a runny nose and a little bit of a cough. For today’s nap Dr. Ana (Valentino’s acupuncturist) and I put him next to an essential oil diffuser to sleep. We used 4 drops of  Australian Eucalyptus Oil in the diffuser to help clear his sinuses and get rid of the last bits of stubborn phlem that chest PT isn’t completely clearing.

sleeping next to essential oil diffuser

Post Bath Mohawk

A picture of our healthy baby after a warm bath. I love his natural mohawk.

21 weeks old. 14lbs. Healthy lung function.

1st Day at the Pool

After a few extra lung PT sessions, Valentino’s snizzley nose is cleared and he’s breathing a lot easier. We picked Romeo and Kiara up from summer camp yesterday and hit the pool afterwards. Valentino was a star sitting poolside in his American flag swimtrunks, big sunhat and sunglasses.

We sat in the shallow end and let the water tickle his feet. He was back to big smiles and lots of bursts of giggles when Romeo and Kiara would swim over and splash his feet and legs with water.

I had one of those “good life” moments wash over me. Everything just seemed so entirely perfect that I had to stop for a moment and appreciate such a good life!

Valentino’s snizzles

Last night was a long night of waking up with Valentino snizzling and fussing. It scares me a little bit because I wonder if mucus is building up already in his lungs. But, it’s probably just a normal baby cold with runny nose and labored breathing (snizzles). Every time we heard a little rustling around in the crib, both of us would jump out of bed and be crib-side to check Valentino. Piero finally fell sound asleep and at 3:30 I woke up and sat in the rocking chair with Valentino and suctioned his nose (eeeewwww). Valentino hates it.

I also break out his eucalyptus essential oils for his back and do a short reflexology treatment and lung PT. He sneezes out two pretty big hunks of phlem and then seems exhausted but also calm and probably relieved to be able to breathe easier.

We hang out in the rocking chair for a little while as Valentino settles down from his night of activity and general frustration over being so snizzley. He usually has such a silly grin but tonight he just looks up at me very quietly and I ask him if he could please stay with us for a long long time.

4 month check-up. Learning about a g tube

At today’s visit to the pulmonologist we meet Luis in the waiting room. He is a gangly little guy with thick glasses slipping down his nose and a bag of potato chips clasped in each fist.

He munches away and informs us that soon he’ll be getting a g tube for night feeding. He’s had one before, he tells us, to assist with weight gain. 

When we meet with the lung therapist, social worker, and pulmonologist one of my first questions is, “What is a g tube?!”

We learn that it is something that perhaps Valentino will need later in life if he has trouble gaining weight. It is a gastronomy tube. A g tube is placed under the skin of the upper abdomen and into the stomach. A person can then hook themselves up to high calorie formula and take in calories while sleeping. It sounds like something out of a sci-fi movie. I can’t even begin to picture it and am considering “google-ing” it when we get home. But, I know better.

We ask if it’s possible to do without a g tube. The social worker tells us probably yes. Here’s how…

add extra cream to mashed potatoes, extra cheese to pizza, extra eggs for breakfast, etc. 

Sounds okay so far. We already begin our day with high test fuel:

protein shake with omega oils, eggs and bacon, toast with cream cheese, handful of berries (we’ll just add a lot of whipped cream to Valentino’s-lucky little guy)

We ask, “So why don’t people do that instead of a g tube?”

Response, “Because some parents and CFers find it easier to have a g tube.” 

We hope that we can teach Valentino how to add calories in a healthful way to his diet–coconut oil, avocado, steak, protein shakes, lots of eggs with mayo (YUM)–so that he can avoid a g tube AND have beautiful hair, skin, and nails too!

A Surprise Diagnosis

Valentino’s was an uncomplicated birth…then the newborn tests started coming back with, at first, “questionable” results.

We were first made aware of the abnormal test result just days after going home with our newborn, Valentino.

5 days after leaving the hospital with our baby boy,  I received a call from a doctor requesting that we return to the hospital immediately due to an abnormality on Valentino’s newborn screening.

I tried to respond, but my mouth went dry and words escaped me. I’m certain I looked like a fish out of water, gasping for a breath.

I passed the phone to my husband, Piero. The doctor was less than thrilled to be passed along to another person and was very short with Piero.

Piero explained that I was very upset and tried to soothe the doctor and obtain more information from her. She, of course, was not allowed to disclose any information over the phone.

We raced to the hospital and were told that Valentino’s newborn screening came back positive for something called adrenal hyperplasia.

We were told not to panic. Sometimes newborn screenings show false positives.

We panicked.

Then we went home and Googled the genetic disorder. We became more upset and were given no support or direction from the doctor who delivered the potential diagnosis.

A few days later we received a letter in the mail notifying us that Valentino’s newborn screeing came back positive for Cystic Fibrosis. I dissolved into tears. Piero stayed solid and logical. He said, “Nothing is conclusive yet. We have to be strong. You are the strength in the family.” But I felt spent. Now our baby not only had adrenal hyperplasia, but also had cystic fibrosis?

We worried our way through the next several days until we took Valentino for a sweat test–the test which confirms Cystic Fibrosis.

We left the test center and headed straight for the pediatrician’s office for a regular check-up. As we were in her office, the Cystic Fibrosis sweat test results came back–positive.

We were, however, told that he did not have adrenal hyperplasia. There had been a mistake in filling out forms and an employee accidentally checked the box for adrenal hyperplasia instead of cystic fibrosis.

The young pediatrician who delivered the cystic fibrosis results stared blankly at us after she delivered the diagnosis. We choked back tears.

What stands out in my mind most and will probably always,  is the image of the pediatrician standing awkwardly with pale skinny arms hanging at her sides like a gangly wooden puppet.

I think if she had hugged me, I may have punched her. But, I wish she would have at least tried.