Yay for Picc lines!

Well, yesterday it was looking like Azer wasn't going to get his PICC line again, but some strings were pulled (I guess), and Azer was called down to get a PICC line. The last time Azer got a PICC line, he was put on different sedatives, and when he was waking up from the sedation, it was a strange experience. The doctors had told me at that time not to talk to him in recovery because he wasn't really awake, and that it would make him upset. They said that one type of sedative they had given kind of distorts reality (freaky!).


This time, we saw an anesthesiologist, who explained that Azer would be put under general anesthesia. The way I understood it, it was the same type they use during surgery, but they didn't use as much of the medication. Azer was nervous when the doctor was talking about what would happen, but I think he was just afraid of the unknown. They gave him a sedative that made him sleepy and goofy, and Azer doesn't remember anything after that. Everything went well, and he came out with a nice, clean looking PICC line.



In recovery, he was really quiet, and it took him a few hours to act "normal". They gave him the cutest teddy bear while he was waking up.



After a few hours, he was bouncing off the walls like usual. He said he was feeling much better and that he was "noxious" again (short for obnoxious). So, I think maybe he wasn't feeling as good as he could have, and he just didn't know it.

He hasn't been eating very much here, even though he can eat anything he wants. I hope he starts eating more soon.

Oh, and one more thing. Azer's FEV1 was 71% when he was admitted on Friday, and they tested it a few days ago, and it is up to 76% now. Good news!

Now we wait...

So, we are all settled in the hospital. A very kind person offered to watch Reema, so that was a big relief for us. Azer has had about 5 IV's (I think) so far. Whenever it starts hurting him to have them flushed they change it. We were supposed to get a PICC line in today, so he didn't have any food or water since last night, but there were too many other children scheduled ahead of him for a PICC line, so we are going to have to wait until tomorrow.



Azer is in good spirits, and is happy and comfortable. He is a little bored from being stuck in the room. Because of the MRSA and Pseudomonas, he cannot leave the room because of the risk of other children getting it.

Counting down the days!

Hospitalization :(

Well, I made an appointment with the CF Clinic yesterday, because Azer has had a wet cough for the past week. I just thought he would need the normal oral antibiotics.

He lost a pound, and he cultured Pseudomonas and MRSA for the first time. The first doctor that came in said to seriously start thinking about the G-tube. Fortunately they are not going to put it right now, but we might be looking at it a few months down the road if he doesn't start gaining weight again.

He also did a PFT (Pulmonary Function Test) today, and his lung function went down about 15%. It's a big drop, so we want to treat this aggressively and quickly.

Azer took the news hard this time. It's been about 3 years since his last admission. He started bawling when he heard the words "G-tube". Luckily we don't have to deal with that right now. I'm kind of bummed out right now. He will miss his Valentine's Day Party at school and he has been looking forward to that. It's really hard to get all this coordinated as I don't have family close by to watch Reema and get her from school. I hope this all works out. The hospital staff is very supportive in all this.

I hope they put the PICC line in as soon as possible. The last time he was admitted, it took like almost 4 days.

Well, keep us in your thoughts!

Happy New Year!

We had a "major" snow storm (for Dallas, that is) the day before Christmas. It was beautiful and movie like. Azer started to cough when he was running around in the cold, dry air, but eventually stopped coughing and was mostly laughing.



It has been a beautiful holiday.


I hope everyone has a happy and healthy new year!

Ear Infection and Coughing

Azer came down with an ear infection last week. I think the attending pediatrician was trying to show a resident doctor what an ear infection looks like. He said, "This is a classic, perfect example of an ear infection" while looking in Azer's ears. I'm glad to provide teaching examples ... but Azer was so miserable all day. They took his oxygen saturation levels, and he was 92%, when he is usually about 98%. I was afraid they were going to admit him. Azer also had more mucus in his cough than it should have. They prescribed a 10 day course of antibiotics and Prednisone. The side effects of Prednisone are kind of frightening, especially the risk of infections.

A few days after the pediatirician visit, we had CF clinic visit as well. The doctor there seemed pleased with how Azer sounded and appeared. So, I suppose all is well for now.

Good news... both children have gotten half of the Swine Flu vaccination. The kids didn't seem to be as relieved about receiving them as I was. A few tears were shed ... I think the child screaming bloody murder in the next room made things more dramatic than they really were.

Another "wonderful" thing happened last week. Right around the time when the doctor gave the word to increase his treatments during the day, Azer's vest ... the machine that does CPT for me, gave out. I only had to live without it for a few days, but those days were very long and tiring. I don't know how I ever lived without it. Thank you Electromed!

I hope everyone has a healthy and safe holiday!

Looking Inside

Azer recently got a letter from a CF Organization that provides grants towards recreational activities. They had a set of questions that they sent along to be answered by the CF child. I think some of the questions applied to older children, but I asked him in a way he would understand.

Some of the questions were kind of touchy, such as, "Do you feel you are too thin, do you feel you are too short, do you feel you are physically different from others?" It gave me a look into how he feels about having CF, especially now that he is around other children his age, besides his sister.

He felt like he had to stop doing things he enjoys to do treatments, and he feels pressured at meals to eat.

He gave me an answer to one question that I did not expect. The question was if he enjoys eating. And he said no, not at all. He said he only enjoys the taste of food, but not the actual eating experience.




Another question was answered unexpectedly. The question was if he had trouble breathing. He said not usually, but he said he was worried about the cold weather coming. He said he has a difficult time breathing outside during cold weather, and that he was worried he wouldn't be able to run around with other kids during recess in the next few months.

While I am not one to let pity take over the situation, I feel a bit taken back by how he feels CF is affecting him.

If anyone is interested in applying for the recreational grant, it is called the Cystic Fibrosis Lifestyle Foundation. Their email address is: info@cflf.org
http://www.CFLF.org

Pledge of Allegiance

According to Azer:

I pledge Allegiance to the Flag,


of the United Steaks of America.

And to the public, which it stands



All Nations Under God



Invisible




With Liberty, Justice, for all.

Azer: "That means we all get the same stuff and we're all treated the same way."

Me: "Is that right?"
Azer: "Yeah, but I don't think Reema has got the idea yet. Look what she drew."
Me: "I think she's pretty close, though. Reema, is that what you think Liberty and Justice means? "
Reema: "Yep!"

The Happy Flag, by Reema

Sentences and Lice ... Yikes!

Our pediatrician and CF Clinic have not received their swine flu vaccines in yet. So, we're still waiting. I feel apprehensive about giving them the vaccine because of all the concerns of safety over them. I know I'll have a sense of peace after we get these vaccines over with.



Both of the children have begun writing sentences in school! It's very exciting seeing how far they have already come. They are reading small, short books as well.

And, finally: lice. I think Azer is the one who got them first, somehow, from somewhere. I don't know if I'll ever figure out the source, but I suspect it comes from school somewhere. I pulled quite a few bugs out of him, and only a few out of Reema. Just in case anybody wants to know, I used coconut oil. After leaving it on their heads for a few minutes, I brushed my hand through their hair, and found dead lice on my hand. That's how easy it was. Note that I did comb through tediously for a long time. And I am still combing through daily. It's been a week now, and I haven't found any lice, dead or alive (knock on wood). Dang bugs. I feel like a monkey combing and picking through their hair. Only I don't get to eat them.

6 Years Old!

Happy Birthday Azer!

Now We Are Six

Author: A.A. Milne

When I was one,
I had just begun.
When I was two,
I was nearly new.
When I was three,
I was hardly me.
When I was four,
I was not much more.
When I was five,
I was just alive.
But now I am six,
I'm as clever as clever.
So I think I'll be six
now and forever.

Forever is fine with me.

Here is the earliest pictures of both of the kiddos together.

*Cough*

It was bound to happen. Azer said about 4 of his classmates were absent from being sick, and two of them said they had the flu.



Reema came down with it first, feeling nauseous and feverish. She was out of school for a day, the next day she felt better, but come the weekend, they were both suffering from fevers, headaches, and just feeling overall miserable. If they fight and argue a lot feeling great, imagine how lovely they were to each other when they felt terrible? Felt like calling Dr. Phil.

To my relief, they both got their flu shots last week. Reema cried (screamed) like someone was coming in to kill her. She even cried the next morning worrying about any other shots that might be planned for the future. It's mildly humorous, but I'm not going to tell her that.

Azer seemed slightly dehydrated through the feverish weekend. He had no respiratory symptoms at the onset of this, but his cough started to get wet yesterday. The doctor prescribed a general antibiotic to offset any infection that might try to stick around in his lungs. I'll be sending Azer to school with a good supply of Gatorade (although I actually feel like going to school with him and doing treatments every half an hour, and pour Gatorade down his throat like there is no tomorrow).

I'm not worrying.

Another Clinic Visit & School Children!

Azer had a CF visit in the middle of a school day (that was fun.) Both Azer and Reema missed almost the whole day. I took Reema out of school expecting the hospital to have the flu shot in, but they hadn't received them yet. So ... no flu shots yet. We are scheduled to get them next week. I've been nervous about the flu and the swine flu scares, especially now that they are in school. Obviously I can't keep Azer in a bubble. I don't think he'd like that. He doesn't look like the "live in a bubble" type child... right?




On the news there is a story about a girl somewhere in North Texas that died from the swine flu within a few days. That is very frightening.

Anyway ... the updates of Azer: His lungs are the same, clear and pretty much healthy. His weight, they say he didn't gain any. I didn't get my usual print out of his weight and height, as the whole clinic was in a chaos putting medical records into a new computer system.

School has been going well for them. Everyday they come home with new knowledge, and I am impressed with how much they have learned in less than month. Kindergarten is very intense, though. They are learning so many things, even so early on in the year, that I didn't learn until second grade, if that. It's both amazing and shocking, in my opinion.

First Day of School

Today marks one of the giant milestones in my kids', and my life.

The day went off without a hitch. They seemed to automatically know what to do. They got on the school bus without a hint of fear or apprehension. I met them at school a few minutes later, and they seemed to be much more occupied with their pencils, and "projects" and the fact that I was standing there saying goodbye. While it is difficult to "let them go", I'm proud to see that they were so well prepared for that day, that they didn't feel nervous about facing new challenges.




Still, after being with them almost every single day ever since they were born, I really do miss them. It's a good thing to have them back at home at the end of the day.

Happy Birthday Reema!

It's those odd few months in my life, where both of my children are the same age. I have two five year olds right now.

Happy Birthday Princess!