No Tobi

The doctor said, "No Tobi" ... for right now anyway. One of the nurses mentioned that the other medications that treat Pseudomonas also carry a risk of hearing loss as well. So, it seems the doctors are taking the "wait until it causes problems" approach. At least for now we don't have to wake up a full 30 minutes earlier. That Tobi really takes forever to run.

What else is new.... oh yeah.


Milkshakes, milkshakes, milkshakes, milkshakes...



Scandishakes, Scandishakes, Scandishakes, Scandishakes.



Seems like a lot to drink, but he says he's "cool" with it.

I'm "cool" with it too. He actually has a little bit of cheeks on his face. The last time I saw actual cheeks was...

Well, I just had to show that picture.

One more ... just because it's so stinkin' cute.

Ring ... Ring...

So, yesterday morning was the second time we did the inhaled Tobi. The night before, we did his first dose of Tobi, which seemed to run fine, and we had no problems.

Well, at 5:00 the morning I go in and start his Albuterol and I run his vest. About halfway through his treatment, he says one of his ears is ringing. I think nothing of it, and start the Tobi after his Vest is done. A few minutes into the Tobi treatment, he starts crying and saying his left ear is ringing very loudly. I stop the treatment and email the Respiratory Therapist right away. The ringing apparently stopped, and we went on with our day, and I took the kids to school. A few hours later, the therapist calls and says the doctor wants us to stop using the Tobi immediately and to schedule a hearing test ASAP with the audiology department. We manage to get an appointment in the afternoon that day. We take Azer out of school and drive all the way to the hospital (I'm telling you, we need to start paying rent there, if we are going to be there once a week). They tested his inner ear, middle ear, and outer ear, and everything came back perfectly normal. There were no signs of any hearing damage.


So, today we are waiting to hear back from the doctor to find out if they want us to continue the Tobi, or if they want to put us on a different medication to control the Pseudomonas. There is a medication that just finished it's trial runs, and it's being approved by the FDA right now. Kind of cool that it's being approved right around the time when we might need it.

Well, I'll let ya'll know what happens!

A Welcome Surprise

As I was putting a belt on Azer this morning (his pants are always falling down, that dude has no butt whatsoever) I discovered that I couldn't tighten it to it's usual hole. In fact, the belt fit snugly about 3 belt holes down! And this was before eating breakfast, so there was no stomach bloating involved. I was amazed. I hope to see weight gain at his next CF appointment. :D

I moved Azer to the bottom bunk of the bunk bed yesterday in preparation for the Tobi. Since we can't run Tobi during his vest, treatments are going to be a bunch longer. This is difficult in the morning. So, we are trying to do treatments in the morning before he has to get up. I'm hoping he can fall back asleep while it runs. We're giving it a trial run and see if it works.



I hope I will get the Tobi and Scandi-shakes tomorrow. I'm apprehensive about the Tobi. The respiratory technichan told me he may appear to be getting a cough during Tobi treatments, but that this was normal. Other CF people online told me they feel "ill" in a sort of way when they are on Tobi. It seems to defeat the purpose, in a weird way I guess.

Azer had T-ball practice last Friday and Saturday. He did very well for being only a few days out of the hospital. The coach was impressed with the accuracy and distance of his throws, so Azer may be put on 1st base, or short stop. I heard some dads behind me making comments about his throwing skills when it was Azer's turn to throw a ball to the coach like, "Huh ... looks a short stop right there." Yeah ... I'm a boasting, proud mama.

Tweaking his treatments

So, because Azer cultured Pseudomonas, he will be on inhaled Tobi for the first time. He will be on it for 30 days, and off for 30 days. They do this to prevent the bacteria from developing a resistance. I was surprised that they wouldn't treat the MRSA unless it was causing symptoms.

I am a bit worried about the hearing loss risk, so if anyone has advice about that, I would really appreciate it. We are going to need to start waking up earlier to do treatments before school, because you're not supposed to do Tobi during the vest treatment. We want the medication to stay in his lungs, not get shaken out. I looked up the price of Tobi, and wow. It is even more expensive than the Pulmozyme (dornase alfa). CF kids are expensive!

Azer had a great day at school. Everyone gave him a hug when he got in his classroom.

In the hospital, Azer was drinking milkshakes everyday. I think that was partly due to the milkshakes he was drinking during every meal. So, we are doing the same thing at home. He doesn't really care for the milkshakes with Carnation Instant Breakfast mixed in. That stuff does taste like liquid vitamins, but I thought he wouldn't be able to taste it through the chocolate ice cream. Oh well. He is drinking a milkshake at school for a snack instead of slowly chewing through like 5 potato chips for an hour. Everyone at school is very supportive of everything. The school nurse is like a champ in getting him to drink his milkshake!

We all will continue to work hard .... phew...

We are OUT!

Of the hospital, that is. Like the tooth he lost last night...



His PFT levels were 81% today. I think the doctors will probably say that is his baseline even though he got a 91% the other day.

We are going to do milkshakes with every meal, since he was doing so well with them in the hospital. Hopefully insurance will cover the Scandi-shakes and we can start those as well!

It is SO good to be home! He will go to school tomorrow, and he's never been happier about it!

Clubbing ... and you don't even need a date

I knew it was going to happen eventually: clubbing of the finger nails. A nurse pointed it out tonight, that Azer had some beginning clubbing on his fingers. I feel very positive about his weight gain, and the improvement in his PFT's, but just looking at his fingers makes me feel like the disease is just progressing like it should, and there is nothing I can do about it. It's like I fool myself thinking that if I do all his treatments, and force food down his throat, whatever comes next won't happen.



Finger clubbing can happen in someone who might have low oxygen, or in people with lung or heart disease.



Someone told me a few days ago that if Azer wants to play baseball, we can put him in the outfield so he won't have to run around so much. It's almost like they expect him not to be able to run as hard or as fast as other kids, and I feel like I need to defend the fact that he can do anything any other child can do. It's like I say it because I want it to stay that way, forever.

And the results from his lung function test are...

This morning the doctor came in and mentioned that if the results of Azer's PFT result was still low, we might be looking at 14 days. Ugh....

So, Azer did very well on his PFT today ... he made it to 91%. I don't think we have ever seen numbers as good as that before. I think it is partly due to the fact that he is still learning how to do the test, but it is a big relief to see that his baseline is probably not in the 70's like we were thinking. Another respiratory technician was telling me the other night that PFT's in young children are not entirely accurate because it depends on their ability to perform correctly.

Basically, you have to put your mouth around this device that you blow into, which is connected to a computer. The brick house is the hardest to blow out. You have to take a huge breath in, take in as much air as you possibly can, and then blow HARD out, and keep blowing until there is no air left in your lungs. It can be tricky. On the computers here, there are a few different graphics that display on the screen as you are blowing out. You can try to blow all the candles out, which is usually what Azer gets. Today he chose to try to blow the 3 little pig's houses down. On his best try, he blew the brick house down. Kind of goes against the story though, right? Somebody had a major bacon craving I guess.

So, I hope the doctor is pleased with the results when he sees them tomorrow. Hopefully we can get out of here on the 10th day!

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!