December 4, 2005

Doctor Visit .. Loooong day

I had to take a cab to the doctors. Well, the cab guy showed up a half an hour late. I didn't think too much of it.

I had to deal with the kids with a single stroller all day, because my double stroller is broken. Not a fun thing, because 2 year olds tend to walk very very slowly. However, toddlers only walk slowly when you need to go somewhere quickly, because they don't see a reason to hurry up. Sort of reminds me of the same attitude cats have. (I love cats and toddlers regardless).

Anyway ... so, we do the routine visit, see the social worker, dietician, doctor, and then respiratory therapist. He didn't gain any weight or grow either. So, they decided to try out a new diet on him .. More baby food instead of baby cereal. Hey, whatever works at getting him to eat more, right? The doc says to put him back on antibiotics because it looks like the Staph is growing enough to cause Azer to cough and he also wants to start Azer on steroids administered by nebulizer. No big deal I guess, just one more medication to add into nebulizer time. The only worrisome thing about it is I have to make sure to wash his mouth out after the treatment because if I don't, Azer might get thrush. I've only heard of babies getting thrush.

Anyhow... so, when I was about ready to leave, I called the same cab driver back to come and pick me up. He says that it will be about 30 minutes. I say, ok, no problem. I cram the stroller into the elevator and wait for Azer to hurry up and get in (by the time he gets in, the elevator starts beeping ...) and we go get something to eat at this little cafe thing they have. Azer gags down a few bites of egg and Reema begs like a dog for every mouthful, but I manage to eat.

It had now been over 30 minutes, so we go wait by the door and watch people and children walk in and out. Most of the children have casts on legs or arms. Cute little babies, and screaming ones. I saw a lot of grandparents too. I notice its been about an hour, so I call the guy back again. He said, "Oh yeah, I'll be there in ... about ... 45 minutes ok?" sigh .... Yeah, ok. By then, both of my children are tired of running around like monkeys loose from a cage. So, again .. single stroller, only enough space for one child to sleep. So, Azer was in the stroller sleeping, and Reema asleep on a chair. Shall I continue? Long story short, it took two more hours until I was home. The guy said he had had a hard day. Maybe I should give the guy a break hu?

November 26, 2005

Got sick and recovered

Azer ended up catching a cold from someone last week. You could tell he wasn't feeling well at all, so we thought it would be wise to go to the pediatrician. That was like a whirlwind. They checked his oxygen levels which were at 92%, then they sent us down for a chest X-ray. When we came back up, his oxygen levels were 99-100%. That always seems to happen. They were talking about admitting him but thank God they didn't. The doctor called the CF doctor and they only prescribed oral antibiotics. He seemed to be feeling much the next day.

So NOW, he's been having chest pain when he's been eating. So, instead of Zantac, they switched him to Prevacid. I'm not sure if its helping yet. He still has a little pain, but not as much. It was scary seeing him have pain in his chest. I was thinking the worst, but apparently its nothing more than some reflux.

Anyway! Well, Reema has just been a handful these days. She cries if you don't give her some of the food from your plate. I'm trying to get her out of that, but geez, every time I sit down to eat she starts crying. So, now its come to giving her a plate of her own every time somebody in this house needs to eat. If we keep doing this, I don't know how big she's going to be next month. At least we don't have to worry about how much she eats.

She's not a petite little girly girl at all! If she sees something she wants, she just takes it. She seems to prefer blocks and trucks over her dolls. If she's pushing a truck in your direction, you had better move because your getting run down if you don't. She's like a tornado with a pink bow on top. Azer will just be sitting nicely on the floor building something, when BAM here she comes tearing everything down. Oh well, we love her anyway. We can always pick up the pieces of destruction she leaves behind her.

November 15, 2005

You know You've Been Dealing with CF too long when ...

Azer is off of the antibiotics and seems to be doing ok!

I received this from a CF parents messenging group. I thought ya'll might like to read it. Some of it is really funny.

You Know You've Been Dealing With CF Too Long When ....

- You've used puppets, toys, sung, danced, pleaded and generally made a fool out of yourself all in an effort to get your child to eat.

- You've stockpiled enough applesauce to start your own factory

- You find loose enzyme beads literally everywhere, the car, your clothes, -the ceiling (not joking)

- You count more calories than sheep

- You add salt to everything and use butter as a general cooking base even when a recipe doesn't call for it

- You panic when your child sneezes

- Your child coughs and you immediately chant "Xopenex four times a day!"

- You check websites daily for news about a cure

- Your house has more medications than the pharmacy

- You've actually found yourself explaining a medication to the pharmacist instead of the other way around

- You've considered dying all your child's clothes yellow to hide the vitamin stains

- Your medical bills are looking more and more like the national debt

-You've prayed for your child to be fat

-You have a strong urge to smack whiny parents of "normal" kids

-You've actually found yourself exclaiming angrily in the grocery store upon discovering extra-cheesy mac doesn't have more calories than regular (sadly true)

-You know what the poopie dance is, and you've done it

-You've had long involved discussions with other parents about poo

-You've started referring to everything in acronyms (CPT, PA, MRSA...)

-You're seriously considering a medical degree, cause at this point you know more than most doctors

-You've reduced a complete stranger to tears by yelling at them not to touch the baby

-You can describe the hospital's daily menu in exact detail

-Purel and Lysol are your new best friends

-You've considered life-long quarantine for your child

-You've told someone off for coughing near you or your child

-You have multiple doctors on speed dial

-You refer to CPT as your child's nightly beating

-You've bought a fancy baby scale for peace of mind

-The pediatrician sees you more often than their own staff

-You tend to refer to life AD & BD, After Diagnosis and Before Diagnosis

-You've cried over half a pound

-Your child comes with an instruction manual if you leave them with a sitter

-You've forgotten what normal is

-You find empty enzyme capsules in your pockets

-Your child wears a neb mask more easily than they do a hat

-Your child has started trying to do their own CPT

-You own every Baby Einstein video made and are eagerly awaiting more just for something different

-You've forgotten to put meds in the nebulizer and actually let it run several minutes before discovering the problem

-Your after clinic routine at home looks like a hazmat excercise

October 27, 2005

Doc Visit after a cold

We went to the pediatrician last week to do the evil deeds to my children - vaccinations. Azer seems to have more fear of the shots. I think its from getting IV's. Anyway, both of them ended up picking up colds that day. Reema had sniffles for one day. But Azer had really bad sniffles for about 3 days and then he ended up getting a wet cough. So, he's on antibiotics now.

For the first time, he actually shook hands with the doctor and even waved bye-bye. He's never done that to a person in a white coat before. I guess he's got to become friends with them sometime!

And guess what else ... I've been so busy I didn't have time to post this. We had a swallow study done about two weeks ago, and they found he was aspirating liquids, so now they want us to make all his liquids thick. The speech therapist gave me a can of some stuff called Thicken-up ... so GROSS! I mixed it up with water and it turned into a lumpy glass of cream of wheat... yuckiness. Poor Azer already has issues with textured things, and now all his liquid was textured? He wasn't going to go along with it so we ordered some other brand of thick stuff. It doesn't make it lumpy ... but now his liquids are like jello. I think it still looks pretty gross. I can't believe we didn't know this before.

despite all of this, he's a pretty happy little guy.

***This is a fair warning. The following is a very disgusting story of what happened to me a couple days ago. Do not read if you are easily grossed out.***

This is what happens when a child with CF wearing a diaper does not absorb fat.

We were about ready to leave the Children's Hospital. Azer was apparently having a BM. So, I pick him off of the stroller to change his diaper. I notice there is BM on the seat of the stroller. And I do not mean a smudge. I mean ... like a handful. I carry him down the hallway holding him as far from my body as possible, pleading with someone to help me. If there is anyone reading this that was there that day, I apologize for you having seen that much poop stuck to the back of a child. A very very nice nurse assistant opened up an examining room for me. I will spare you the details, but it took a full container of baby wipes to clean the BM that had worked its way up Azer's back and down his legs. The nice nurse assistant came back with a gown for him to wear since his clothes were way beyond cleaning. She looked happy ... perhaps happy that she wasn't the one in this situation. I cleaned the stroller has best I could, but Azer had to walk until we got to the car. May God bless that nurse assistant.

August 23, 2005

Azer came home!!!

Yes, the great news has arrived, Azer is home. His cough was getting much better, so they didn't need to put in the PICC line. They sent him home with some oral antibiotics. I know what we're going to do tomorrow, go to the park, and try to spend as little time indoors as possible.

August 20, 2005

How long is Azer going to be here?

Well, their talking about keeping him for the renowned "10 Days". Yep. The doctors never say, well 11 days, or 13, just 10. There must be a "10" in their "How to be a Doctor" handbook.

Ok, well anyways, since he's going to be here 10 days, they said their probably going to put in a PICC line. This will be his first one, and it sounds scary to me. PICC stands for "peripherally inserted central catheter". Hey, when you say that fast, you sound like a doctor.

IV's only go in the vein a short ways and they only last a few days. PICC lines start at the middle of your arm, they thread the catheter up through the vein all the way into one of the main veins go to your heart. Yikes! It sounds like a big deal, but the social worker said the older CF kids say they would prefer having a PICC line. Besides, if they actually do go ahead and put the PICC line in, he would be sedated, so he wouldn't really feel anything, and that makes me feel a lot better. And the good thing is, it doesn't go bad. In fact, it could stay in for 6 months if needed.

August 18, 2005

Admitting him to the hospital

Well, my nerves are a little frazzled today. His dry cough is still there and the doc decided its time for him to get it cleared out with some IV antibiotics. So, he's all hooked up. The X-ray they took showed that he had some cloudiness in his chest, which means there's just some extra mucus in there. That should go away pretty quickly since the people here are taking very good care of him.

August 9, 2005

A dry cough

Azer has had a dry cough for the past few days so we took him today to the Children's Hospital. The doctor said he sounded clear. Azer is going to be on antibiotics for 10 days. By then, his cough should be cleared up. Despite his cough, he's got plenty of energy. They say its a good thing that he's driving me up the wall. So, on one hand I'm glad he has lots of energy. On the other hand ... moderation would be a great word for him to learn.

July 7, 2005

Doctor's Visit at CF Center

Azer went to the Children's Hospital again today. He gained some weight, so he's up to 11.3 kilos. He grew some too. The last time we went, they took some blood, and the results came back good. They did a chest X-ray, and the doc said it looks good.ECI is going to come again soon, and hopefully they'll have some suggestions. Azer's now eating stage 3 baby food, which has some textures to it, and he's eating it well! He's also eating bananas and some noodles. But only a few bites of it.

May 26, 2005

Doctor Visit

Azer had a routine visit at the CF Care center. He lost some weight, unfortunately. He's now 10.9 kilos. All we have to do is try to make him eat more solid foods! He just doesn't seem to want to eat a whole lot. He is only eating baby food still. The doctors say he has a problem with eating textured food. Apparently it's not that uncommon. He still is doing pretty well seeing that he survives on milk and baby food. ECI will start to work with him soon, hopefully. I can't believe we've gotten this far with only formula and baby food.The doctor said his lungs sounded clear. He had a drippy nose but that cleared up on its own without any antibiotics, thankfully.