This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

Today marked Eli’s appointment at the cystic fibrosis clinic. He sees his pulmonologist every three months.

Eli has developed strong opinions on just about everything. He says just a few words these days, but I’ll let the pictures show what one little boy had to say about his experience at the doctor’s office:

Laila got the day started in her doctor gear to let Eli know it was time to go to his appointment.

Our day begins

Our day begins

Pose together kids…oh forget it. Here they are getting along-ish:

sibs

Off to Children’s we go. For once, not late. We checked out the bubbles. “Bubbles” is Eli’s favorite word these days. I get tense in the hospital. There is no place better to pick up hospital bugs, super bugs and various other sorts of bugs. I tried to put Eli in a mask the second we stepped inside, but he threw it on the ground. I just keep him in his stroller.

Children's

Funny/not funny thing about CF. You have to stay away from other people with the disease. When I get to the hospital and board the elevator, I make sure no one else is going to the CF clinic floor. I press the buttons with my elbow. In the waiting room, I will get up and move us across the room if anyone else appears. In the hallway of the clinic, I hold a mask over Eli’s face. I sanitize our hands any time a surface is touched. I’m really on edge. This is how it is when your child has a deadly lung disease, for me any way.

Keeping our distance

Vitals are first – weight, height, and a measurement of the oxygen saturation levels in the blood with a pulse oximeter. The ‘pulse ox’ always fell off when Eli was in the NICU. Beeping. Beeping. Beeping. Idea: screw water boarding, let’s root out terrorists by hooking them up to hospital equipment that falls off and beeps every 10 minutes. Eli was not having it today with his pulse ox. Flashback?

Not having it:

Vitals

Still not having it:

I hate this. - Eli

I hate this. – Eli

Here I am trying to calm him down with snacks. This didn’t work. Look at his face!

Snacks? I don't think so mommy, not at a time like this.

Snacks? I don’t think so mommy, not at a time like this.

We switched to try a toe. This all took two nurses, nursery rhymes, and lots of happy babbling on all of our parts to get him to stop kicking. He is really strong. And opinionated. And really not having this today. This is the most fuss he’s ever put up at an appointment.

Well, now Eli was hoppin’ mad. Poor little buddy. We snuggled it out later.

No no, bad mommy

No no, bad mommy

Throat swab was not pretty. Myself and a nurse held Eli down while a third took a swab to check for alarmingly-named bacteria that could hurt his lungs. The results usually take a few days. We all had a little laugh after our tense time restraining a kicking, screaming Eli. The swab came back with a piece of raisin on the tip. Not sure how that’s going to read in the test!

OK, this is better.

OK, this is better.

With some cuddling and coaxing, he calmed down. A very nice resident checked his ears, nose and throat. Whew. I took a breath. Thank God I remembered to wear deo today. Mommy was a sweatin’. Today I had no time to eat lunch, no time to shower, no time to put on make-up. Not trying to perpetuate the ‘frazzled mom’ image here. We are more together than you think, ppl. Just sometimes, days like today, not. Don’t judge us. At one point I looked down and saw my shirt was crusted with mystery crumbs and applesauce. Yaaaay.

Look at my sweet patient baby:

Mommy is so proud of you, buddy!

Mommy is so proud of you, buddy!

We bring our own toys to the CF clinic to guard against cross-infection. Eli loves the book ‘Peek a Who?’ We read it while we waited to see Dr. James Royall.

Happy now

After reading 'Peek a Who?' -- peekaboo

After reading ‘Peek a Who?’ — peekaboo

Great to see the doc and ask a few questions today. I’ve always got questions.

Eli’s been having a lot of poo poos and mushy as well. Doc increased his enzyme dosage from 24,000 to 32,000 units of lipase, the enzyme that helps him absorb fat. Eli takes Pertzye, a type of enzyme coated in bicarbonate. He has an acidic gut system, and this helps with the enzyme absorption. We also agreed to keep giving buddy boy Axid, an antacid, twice a day. Without this type of help Eli would poo out fat, which would hurt his growth and ability to ward off infection.

I was really happy, and the doc and staff were happy, to see that Eli is growing well. Looks like adding heavy whipping cream, butter, Nutella, smothering things in Ranch dressing, etc. etc. is paying off. We feel lucky for his appetite every day. It might not last when his condition and medication schedule gets more complicated.

Doc gave some good suggestions for research. I want to catch up on some of the latest CF studies. To do so I need to utilize the biomedical lit site PubMed.

Eli weighs 26.2 pounds, which puts him solidly in the middle. Here is his growth over time:

Eli's growth

Eli’s growth

I understand that studies show that at 2 years old, CFers lungs begin to differentiate from the healthy normal lungs of their peers. With the CF, Eli essentially has chronic bronchitis. His lung plumbing is inflamed all the time. The OKC CF clinic puts 2-year-olds on Pulmozyme
, an inhaled medication that seeks to reduce the risk of lung infection. This deviates from the CF Foundation care guidelines, under which kids start taking Pulmozyme at 5. I’ll have to do my own research on the topic to better understand risks and benefits. However, if it’s safe and will help keep Eli healthy, I will definitely say ‘yes.’ It’s hard to believe that at his next CF visit, he’ll be one month shy of 2. Where has the time gone?

Confession: By the end of today, I felt like a ball of tension and stress. This happens every time I get close to his disease, medically speaking. It’s getting easier. I knew I had to write so I cycle that all out of me. This helps me a great deal. Thanks for reading and Cure CF.

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