Decorations & A Poem

 With a lot of help from Grandma and the craft store, and a little glue here and there, we have successfully turned the IV pole (G-tube pole) into something that looks a bit more ... interesting.

I think it's got to be the first ever baseball themed IV pole.

I'd also like to post a poem I wrote, and I won first place on Mary Beth's poetry contest!
http://patientpress.blogspot.com/

First Place: He's Not Gaining Weight

by Lydia Samad

Lydia Samad is the mother of a 7 year old boy with Cystic Fibrosis. She lives in Texas, and her website can be found at AzersCFWebsite.com

He’s not gaining weight.

Feed him more frequently,

more calories, more glasses of milk.

I’m sick of this. What do they expect me to?

Watching him sit at the table.

Chewing each bite for ages.

Frustration.

Why can’t he eat faster!

He’s not gaining weight.

Pushing, forcing, coaxing, convincing, lectures.

Just one more bite.

He’s not gaining weight.

Try these milkshakes. Lots of fat. Surely this will work.

Blenders running all day long.

Countless tubs of ice cream.

Millions of gallons of milk.

He’s not gaining weight.

Doctors and dieticians. We’ve tried these options, you’re not a failure.

He’s not gaining weight.

Facing surgery. Feel like blaming my child.

Feel like blaming myself.

Pointing fingers at self.

If only I had given him two more bites.

Just forced and prodded a bite more.

No, it wouldn’t have worked.

He’s just never hungry.

Doctors and surgeons talk to me.

Day of surgery.

Feeling like this is my fault.

My heart is in my throat.

Trying not to throw up.

What will my life be like next week.

My son is mad at me. “I don’t need a G-tube.”

“Please Mommy. I’ll drink my milkshakes faster. I don’t want this thing in my body.”

He’s being sedated.

Try to be strong for him.

Tell him things will get better.

It’s my son’s turn.

The sedation medication is going through his veins.

He’s not nervous anymore.

One more sweet kiss with my son before he’s wheeled through green double doors.

Telling myself not to break down.

It’s a minor procedure.

Waiting, pacing, nervous.

Texting family and friends.

Finally the surgeon comes out.

Everything was fine.

He was in capable hands.

Feeling grateful.

Time to see him. Nurse warns us it will be noisy.

What does that mean?

Walking through strange hallways.

Bracing myself for what I will see.

Curtains hanging around each child.

Countless children waking.

They are crying and moaning. Are they in pain?

One child is crying and trying to get out of the bed.

One girl moans, and looks like she had surgery on her head.

God, why must these children suffer?

My ears are filled with the sounds of children crying.

Oh God, what will my son look like?

Will he be crying?

Will he be in tremendous pain?

Nurse points, there he is.

The familiar face I know and love.

His stomach is covered with blankets. I want to see what it looks like.

My son’s eyes meet mine and he starts to cry.

What’s wrong, honey? Does it hurt?

More morphine. It still hurts.

His cries join with the cries of the children in the room like a chorus.

Be strong for him.

“I’ve done this to him. I’ve caused him to suffer.”

Back to our hospital room. He’s sleeping, moaning.

The day goes by at an agonizing pace.

Too slow.

Afraid to touch him, to move him, afraid of hurting him.

Nurse explains information.

Too much information. My head is spinning.

It’s too overwhelming. I don’t understand what she’s saying.

Giving me phone numbers, numbers of sizes,

numbers of milliliters per hour.

Why is she talking so fast?

“Call me if anything goes wrong”.

What?

Fear.

Trying to hold back tears.

A sleepless night.

He’s crying in his sleep.

I finally drift off.

Metal clangs in our room and I startle awake.

A nurse is removing tubes from his stomach.

I can see the button now.

It’s not so bad.

Shouldn’t there be bleeding? That looks pretty clean.

My son looks down at the button.

He looks up at me and smiles.

“Wait till my buddies see this! They will think it’s cool!”

Making jokes.

“You have a balloon inside of you. I knew you were always full of hot air.”

Time goes by faster.

He’s walking across the room.

Another day and it’s time to go home.

New fears.

Can I do this myself?

A metal pole with a machine in my child’s bedroom.

That doesn’t belong here.

More medical equipment to decorate our home.

Cans of formula, plastic tubes and syringes.

I can’t do this.

It’s too difficult to manage.

I sleep on the floor next to him.

Afraid to leave his side.

I drift off to sleep.

Morning sun hurts my eyes.

I look at my son’s bed. He’s not there.

The metal pole is missing.

I hear noises coming from the kitchen.

My son is rolling on the metal pole like a scooter.

He is happy.

The next week rolls by as fast as his new scooter.

Doctors and dieticians, waiting to find out the news.

He has gained weight.

No Vomiting!

So far, there has been no vomiting, and no loose stools. He is tolerating the Bethanechol well so far.

The prednisone is done, and he sounds great. Much less coughing than last week, and his stamina has been fantastic.

We're on Week 4 of the running plan. I'm making it. Azer is flying through it this week. He is running way ahead of me and doesn't have coughing fits during it. I really think the two puffs of Flovent is helping a lot.


I noticed his allergy test came back from last week, and I can look at it online, but I'm not sure what it means exactly. I guess I'll have to wait until next week at his appointment and see what the doctor says. But, I feel good about it. It makes sense that all this time he's been on antibiotics and his cough hasn't gotten better, that his wet cough has been due to an allergic response to mold in the air.

Since baseball season has started, he's started to have leg cramps, just like last year. The doctors don't seem to have much to say about it. His vitamin levels are all totally normal, and he is staying hydrated. I've been putting Gatorade through is G-tube, as he just won't drink enough of it on his own. It seems that is the only thing that makes the leg cramps go away. I'm just glad he can run the bases and not have a major coughing fit that not even Albuterol can stop.

What's a Wife for?

When Azer watches Spongebob for the 100 trillion, quadrillion, quintillion, sextillion, septillion (I could go on, you know) time, I wonder at times if he actually does have a brain inside that's not yellow and squishy. But he does.

So, Azer and I were talking about the reason I'm trying to get him to do more of his CF care himself. That someday, he will be responsible for the treatments and all the meds when he lives on his own.
Azer said, "Well, I won't have to do it ALL by myself."
Me: "Hmmm.... why won't you have to do all of it by yourself?"
Azer: "Well, my wife is going to help me do it!"

And yesterday while doing our run, Azer started laughing out loud to himself (this happens a lot). He said that he thought it was funny that everyone in the world is trying to lose weight and he's the only one trying to gain weight and that it's really easy for him to lose weight. Losing weight easily is not something to be envied!

CF GI appointment

We woke up extra early today because he had a early appointment this morning. He threw up his morning bolus within minutes of getting it down, unfortunately. 

Well, there are good things and not so good things.

Bad thing: His FEV1 is only 73%. His cough is not entirely clear. The doctor heard sort of an asthmatic wheezing when she listened to him. He had a very high result on an allergy test last month. They did another blood test today to test for specific allergies to aspergius. Apparently, this will help them treat the allergy/asthmatic component he has.

Good news: We're back to 52 lbs!! He grew a little bit. His vitamin levels they took last month were all fantastic. They are really happy with how he looks as far as weight gain and growth.

The treatment: Since the Erythromycin (for GI motility) did NOT work out at all, we are trying a gentler kind, bethanechol, on a low dose to see if we can stop the vomiting. We are starting Prednisone to help his lungs, and we are also increasing the Flovent.

Doctor said if there is not much improvement in his lungs, we might be facing a hospital admission soon. I don't want that for him right now, because baseball practice has started! And he's doing awesome at it so far! So, I'm hoping the steriods will help improve things quickly!

Sort of Better?

Tuesday morning, I rushed Azer to the pediatrician because I was nearly in a blind panic because his cough just wasn't getting better. I hate it when I hear that deep, mucusy cough, and I just get a terrified feeling when I hear it. After being stuck in a tiny room for three hours, and doing another X-ray, I was basically told to just continue doing what I'm doing.

His X-ray showed some improvement. The CF doctors never mentioned this term before, but the pediatrician said there was "atelectasis". The doctor said not to think that it was about lung collapse, but that it was more like mucus plugs in the lower left lobe. So, I've been trying to focus CPT in that area to try to clear that out. Otherwise, his X-ray is improvement since Saturday. I am continuing the Clindomycin. His diarrhea has improved since I changed the type of probiotics he's taking. He is coughing and spitting up mucus during CPT. I don't notice him coughing up mucus during the Vest.


This morning, he threw up again. Later on this afternoon, he was bringing groceries and he ended up getting something that was like an asthma attack, and he had a terrible coughing fit, and his face started looking slightly gray. So, a quick nebulized Albuterol and a 15 minute Vest treatment ended it quickly.

So, sometimes it is obvious he's getting better, and other times I just don't know. But, we'll keep pounding away at him. :)

How to Cure CF

From a 7 year old's mind:

Azer: "I wish the doctors could make time go backwards and fix your's and Daddy's genes. And then I would be born without CF. That would cool".

ER and Home

I took Azer to the ER yesterday afternoon. I kept hearing that weird wheezing noise every now and then when he coughed. It just totally terrified me, and I was afraid of what his lungs would look like. So, I called the CF doctor, and he said for peace of mind I could take him into the ER.

We were only there for a few hours, but we got X-rays done. The first nurse who listened to him said she heard wheezing in his lungs. About an hour later, the doctor who listened to him said he sounded clear. Azer says, "You know those doors to the hospital? Their like magical doors. As soon as you walk through them, all your sickness just disappears." It seems this was kinda true yesterday. His X-ray was mostly clear, but another doctor said it looked the same as the last one. The last one showed pneumonia, so I'm not exactly sure what it looked like.

I was then given a choice to admit him, or to try the antibiotics at home like previously planned. I chose home! Anything to not be there at the hospital. I really hate it when the doctors ask me what I want to do. I don't want it to be up to me. Their the doctors!

So, I'm praying the antibiotics clear up this wet, mucus. But, I'm also praying that he doesn't get C-diff issues again and have constant diarrhea like last time. That was not fun. I want this kid all cleared out in time for baseball! We might (weather permitting) have our first try-out/practice next week!

Worse Coughing

About an hour ago, Azer coughed, and when he inhaled, he made a weird wheezing noise, as if it was hard to get the air in. There just seems to be so much mucus in there.

So a call to the doctor, and we're going to try another oral antibiotic. Doctor said if there is no improvement in 48 hours, we will be admitted. So, hopefully things get better. I'm tired of the antibiotics, and the improvement for a week, and then things go downhill again. Frustrating.

Last night, three hours into his night feed, he threw up his formula. So, I stopped the feed, and gave up with it. Things seem to be just fine GI wise today.

Sliding In Snow Can Be a Treatment Too!

After we had more than a few inches of snow, we decided to enjoy it while it lasted. It only happens once a year year, if we're lucky.

So they slid down the hill, ran up, slid down, ran up. For hours, and hours. And Azer coughed up a lot of mucus!

He threw up about an hour after his bolus feeding this morning. I just don't understand what brings it on. Everything is the same, and nothing changes, but one day everything is fine, and the next day, we lose a feed. He says he feels goopy and yucky before it happens (I'm thinking that's his words describing "nauseous"), and then he can feel the formula shooting up, and he said it can be really painful. Like his stomach really hurts during those episodes. :( It's so frustrating not being able to fix it, even after seeing a GI doctor.

Junky Cough = More Treatments

He most definitly has a productive cough today. In other words, his cough is definitely junky today. Very wet and mucusy. The doctor wants to wait for antibiotics since Azer was just on them like last week.

So, we are being aggressive with treatments. I have added a few CPT sessions in between the vest treatments. I notice he coughs up mucus during CPT, and he really doesn't cough up nearly anything during the vest.

The Acapella worked very nicely this afternoon. Yeah, he's going out of the shot to spit out the mucus. Might be gross to some, but to me it's great to see it come out! He is doing albuterol along with the Acapella.