Today is a good day

Arianna did great last night. She was satting in the low 90's so I decided to keep the oxygen off. I didn't even monitor her through the night cause she was doing so well.

I ended up having a "blonde" moment while jumping up to check on Arianna this morning and fell right off the bed, my hips broke the fall, then my head slammed into the wall. I can laugh about it now but it hurt SO bad. Poor Arianna was just sitting in my bed looking at me like I was crazy. So now I have the worst headache all day and my back isn't feeling so good.

Arianna on the other hand is doing great today. She is playing, eating, and getting on my nerves. Oh wait....probably shouldn't say that....LOL! No seriously, she is doing amazing. She's satting in the mid-to-low 90's and doesn't have a fever. We will keep the Albuterol going all day.

I did get a phone call from her pediatrician first thing this morning, along with an email from her. She got my email this morning and felt horrible that she didn't get to me until this morning. She told me I probably did the best thing buy keeping her home and NOT going into the ER. We are to keep the Albuterol going throughout the day and spot check her saturations all day. Since I was concerned about the heart rate last night I asked when should I be concerned. She said if Arianna's heart rate with a fever is higher than 190 or with out a fever at 170 to take her in the ER immediatly. Her heart rate is about 120-135 today so we're doing good. She also told me she will give me her personal pager number and home number tomorrow when I see her. She knows I would never abuse the privilage of having that and knows how cautious I am about taking Arianna into the hospital. Isn't she the greatest?!?! I guess tomorrows appointment is to make sure she doesn't have pneuomia or any underlining issues.

I'll update from that when we get home.

What a way to bring in the new year....

The yuckies have striked again. :(

New Years eve I started feeling like I was getting the head cold again. By morning both me and Arianna sounded congested but not too bad. Then as the day progressed she started coughing.

So much for staying home being isolated if we are still getting sick. :(

I decided to pull out the pulse ox machine, which is finally a nice smaller version instead of the huge thing I used to have, and she was satting in the mid-to-low 90's. So out came the Albuterol inhaler. Then out of no where she started throwing up, and throwing up, and throwing up. Poor baby. She feel fast asleep after that.

I decided to monitor her for a few hours when she feel asleep and she was satting at around 90 with only one dip into the 80's...so no O2 last night. :)

She did fine all morning but the cough is still there. I noticed a bluish tint to her face after a little crying episode, which is normal for most kids, but you know with a heart kid it makes you wonder. So I checked her sats and she was at 88% so out came the Albuterol again. She has pretty much been satting in the low 90's all day despite the albuterol treatments.

I'm just happy she is still playing like normal. Oh and this girl has an appetite on her today. I think she gained a pound today alone. :)

I just put her to sleep and her sats were 87% so out came the oxygen. I'm amazed she didn't even wake up when I put the cannula on, which she normally wakes up and FREAKS out.

So I'll be monitor watching all night...yipee (notice the sarcasm).

Oh yeah...we took her to the park yesterday and had a little picnic with Grams! It was SO much fun. Here are some pictures from yesterday.

Ready to play ball...

The leaves were falling off the trees as she played...

After our picnic and playing with the leaves we went for a walk around the park. We saw alot of kids out playing soccer and of course we stopped to watch them. Arianna loves watching kids play. I have to admit I was really sad watching them. It breaks my heart to think Arianna may not get the chance to play those types of sports. I know the docs can't tell me what her limitations will be but, if any, but it still breaks my heart that we have to even think about that kind of stuff. I hate to get her involved in a sport for a few years just to be told she maybe have to quit when she's older. I don't know, I guess I've been dealing with some emotional issues lately concerning the health of my daughter. But....I have to remember I have the Lord on our side and He will get us through anything.

After the park we went back to my parents house where Ari got to jam out with her Grams and Bepa. Man this kid sure loves music. She already has a guitar, keyboard, harmonica, and saxophone.

And this one's for you Sarah. She is finally coming around to the Wubbzy doll. :)

In agreement...well sort of

After talking things over with Robert we both agree that the CT scans and bronchoscopy need to be done. We don’t know what put her in the hospital and if there is some underlining problem then we need to know about it to prevent another episode.

I did hear from the pulmonologists office today telling me the first available slot in on April 8th which is the same day as her appointment with the pulmo doctor. I told her the doctor wanted it done before we saw him and if we had to reschedule the April 8th appointment that would put us probably another month out which I don’t want to do. I rather get it over and done with so I don’t have to stress about it anymore. She did mention that they have an availability next Tuesday but she is still pending the bronchoscopy referral, so she will be giving the insurance company a call tomorrow. She also said we will have to stay the night in the hospital because they want to do a pH probe on her. I didn’t understand why he wanted this test done when the doctors in the hospital decided not to do it. She seemed confused herself and asked a lot of questions about the hospitalization. I explained that Arianna had an upper GI study along with a swallow study to rule out aspiration and silent reflux. The pulmonologist did mention possibly doing a pH probe but after the GI studies came back normal it was never mentioned again. (But then again they pulmonologist only saw us once so it’s possible the attending never knew about his plans) We don’t think they need to do this test because she has already had numerous tests showing she does not have reflux but maybe there is another reason for doing this test. If they do decide to do the pH probe I will be requesting a cosult with the doctor before subjecting Arianna to all these tests. So....the pulmo nurse will be emailing the doctor since he is out of town and see what he wants to do. I am having some issues with the times they do the tests since Arianna would have to fast. I’m praying they will have an early morning appointment become available. Don’t want to mess with her eating since she is doing so well with it right now.

Well I better go to bed since we have an early morning appointment with the immunologist. Ugh…probably be heading to the lab after that appointment. Poor baby…seems like she is always getting stuck with needles. ☹

Just when life starts to feel normal...

Isn’t it crazy how things can go from completely boring to having me in panic mode. I just got a call back from Arianna’s pediatrician and she received a response back from the pulmonologist regarding Arianna. He wants to have a CT of her lungs and heart along with a bronchoscopy (scope of her lungs) before April 8th appointment. So…here I am freaking out once again that she has to go under general anesthetia. Why can’t things stay calm for more than a week. We won’t know when these tests will be done, but we know they will all be done at the same time. When we were at the peds office last week I told her I did notice a slight change in Arianna’s energy and eating habits since being off the O2. She mentioned this to the pulmo and he suggested putting her back on 1-1.5 liters of O2 at night. But of course since we’ve seen the peds last week Arianna’s eating and energy has seemed to get a lot better. So basically its up to me, if I feel she is having a sluggish day then I am to put her on O2 at night. I have been checking her sats every other day and she remains in the mid-high 90’s which is right where she needs to be.

So my feelings right now…well I guess I’m wondering why they still want to do the CT and scope since she is doing so well. But then again I know there could possibly be something going on that we cannot see on the outside. We still don’t know why she went into respiratory distress and was hospitalized, requiring her to be on oxygen for 3 weeks. Its just so hard to put your child through something like this when they are doing so well.