Arianna's battle with atypical pneumonia

Arianna got really sick at the end of winter. I knew something was really wrong but when we took her to the ER they did a chest x-ray and said she was fine and sent us home. Three days later at her follow-up peds appointment they told us she was diagnosed with pneumonia in the hospital which wasn't true. Apparently, her initial radiographs were read normal but the final results showed pneumonia. Needless to say for 3 days she was just sitting at home getting worse. This is how sick she was..

She was on 4 liters of oxygen and still barely holding sats at 90.

Right after taking this next picture her heart rate begin to drop into the 30's and she almost coded on me. SCARY!

Thankful for an amazing pulmonologist who spoke with me constantly via email and phone we were able to keep her out of the hospital and cared for her ourselves. It was 24 hour care and it was very exhausting..
but I wouldn't of done it any other way. She is my life, my love and I am so thankful God gave her to me.

First smile after 10 days!!!

I thought we were finally rounding the corner..

Then she got worse.

Thank God for my mom. She would come work from my house so she could help us with Devin. Even with the 3 of us there we had our hands full. If it wasn't for her I don't think I could of gotten through those 2 week. She cooked dinner, cleaned, took care of kids, let me shower and cry on her shoulder. Thank you Mom for all that you do for us.

FINALLY she was doing slightly better and wanted to color. It lasted a few minutes but it was a start.

My hands were a little full. :)

My mom and Arianna in the kitchen baking cookies. Yes..she's in the highchair. Only way we could get her to sit up. Man, her color was pretty bad now that I look back at her pictures.

She even asked to do some scrapbooking! That's my girl!

Just when we thought we were going to fall over from exhaustion...

That's right..my little boy decided to get in on the action. Devin's very first breathing treatment.

Road to recovery

Arianna took her last dose of the Tamiflu on Friday. She still has a runny nose which shows no sign of letting up. Thankfully the benadryl really helps with that.

I lost my voice for a few days, which I'm sure Robert wasn't too upset about. lol! I'm almost 100% back to my healthy self! :)

My family left last Thursday and it's been a quite house ever since. I SO miss having my cousin here but she promised to come back for Thanksgiving! :)

Today I let Arianna spend a few hours at my girlfriends house while I went to an appointment. Arianna had a blast! Not once did she ask for me. :(

She came home about 3pm and played for another 2 hours before she started acting extremely tired. By 5:15 she was falling asleep so I stuck her in the bath. That wasn't the best idea, she just sleep through the entire bath. Normally I don't let her nap during the day because she will stay up till midnight. Well there was no keeping this little one up. I thought she would get up about 7pm ready to party but she stayed asleep.

About 8pm she woke up saying she was hungry so I fed her some yogurt. The entire time I was feeding her her eyes were closed. I got a little worried because this is not her norm but when I checked her satsthey were running in the high 90's. Guess she just needed some extra sleep.

She is still getting blue hands and feet every now and then. The last time was yesterday during her therapy session. It wasn't even that cold in my house and she was standing up. Normally it happens after the pool but she was bone dry. Hmmm...not sure what to think of that. I have her scheduled to see her pediatrician next Friday at the new clinic so I'll see what she thinks.

So all this thinking about her heart made me realize we see the cardiologist next month. Every time we get closer to that appointment I get butterflies in my stomach. I'll try to forget about it for the next few weeks. Besdies we have to get through the pulmonology appointment first which is on July 16th.

Well I guess thats about it. I know this is a pictureless post so I'll take some pictures soon.

Mother knows best

That's all I can say. Sometimes I wish people would just listen to me.

I put a call into the pulmonary clinic and spoke with the triage nurse today (well guess it's technically yesterday). I asked about getting a nebulizer and I heard, yet again, how inhalers work just fine if used correctly. They asked if Arianna does 6 deep breaths in with the inhaler. Okay, come on, she is only 2 1/2 years old. I just got the kid to quit screaming when she sees me pull it out. After talking about why I think we should try the nebulizer, they called it into our home health people and 2 hours later it was delivered. I have to give them credit because the doctor said it would take a few days. The delivery man said when it comes to nebulizers they know its because people are having respiratory issues and no one should wait to get that kind of relief. How sweet!

Once Robert picked up her medication from the pharmacy and got home Arianna already cried herself to sleep because I had to pull the oxygen back out. I gave her the 1st nebulizer treatment and she started that wonderful coughing, which is a good thing to get all that nasty junk out her lungs. Her sats jumped up and the oxygen was put away. I know Arianna is happy about that. I just checked her sats right now and my princess is satting at 93 and sleeping like an angel.

I am just so relieved we have finally found something that works for her. I feel a huge weight taken off my shoulders.

The pulmonary nurse wants us to schedule the first available appointment for Arianna to see the doctor. She just didn't feel comfortable having her wait till August for a follow up. I'm sure they are scheduled weeks out so we'll see what we can get.

Our morning so far

Arianna has been one unhappy little girl today. She made it throughout the night without oxygen, but this morning I had her on 2 liters for 2 1/2 hours. I just took her off and she is holding her own. I did put a call into the pediatrician to ask about getting a nebulizer machine. Right now she just has the albuterol inhaler and sometime I wonder if the nebulizer would work better.

I had to cancel OT and early intervention this week because she hasn't been feeling that great. I did talk to the EI specialist today and she said they are planning a graduation picnic in 2 weeks for all the kids that will be graduating out of Early Intervention this year. Since Arianna will be graduating in November we are going to try and make it out. I guess they do the whole cap and gown thing. Too cute!

Well it's time to try and get her to eat. That has become our challenge lately again.

We got a wonderful report from the cardiologist today! They did an echo and everything looked the same. We will go back in August to see our cardiologist. At this point, they are ruling out her low sats as being a heart issue and throwing it back on those lungs. We see pulmonary in August so we will talk more about it then unless she gets worse. As of now her sats are back in the high 90's and she is doing well. She does have a fever that we are able to control with Tylenol but that is her only symptom.

I just have to brag about how wonderful Arianna did during her echo. This time I actually practiced the echo yesterday with her so I was able to explain to her what was going to happen. It was kind of sad because the whole time she kept saying, "no boo boo" and gave us a worried look. That breaks my heart that she is at the age to understand what tests hurt.

Since we are talking about Arianna's understanding I just have to comment about something else real quick. Last night we were laying in bed trying to wind down and I put the tv on Discovery Health. It was about a little girl with a genetic condition and she was going to see her doctor. I noticed Arianna got really still and was actually watching the tv. I decided to take this as an opportunity to show her that other little girls have to go see the doctors too and get all the same measurements (height, weight, etc). Normally she is shy about getting her weight and height checked, well not today. I was reminding her about the little girl we saw on tv that did all the same things and she just shook her head yes with a big smile on her face, but she still freaked out about the blood pressure cuff so they didn't do that one on her.

This afternoon we did some running around and by the time we got home Arianna's fever was creeping back up so we gave her some Tylenol and she took an hour nap. Of course that hour nap meant she was up till midnight. That is the reason I don't let her nap but my baby wasn't feeling all that great so I couldn't deny her some beauty sleep.

We did go out to eat for dinner tonight for the first time since October. I was very hesitant about it since we just had a confirmed case of the swine flu here in Arizona, but there was hardly any people at the restaurant and they stuck us in the back corner.

Sorry if I'm all over the place in this post. It's pretty late and my brain is only partially functioning.

Ramblings of a mother

I received the strangest message today from another clinic (one we have seen other specialists at including cardiology before surgery) saying Arianna has a cardiology appointment at their clinic on Thursday. I'm hoping this is because HER cardiologist is working their but I'll give them a call first thing in the morning to figure this out. If not, then we are headed to the other clinic to see a different cardiologist.

I wish I can say I'm not concerned anymore but I just layed Arianna down to sleep and checked her sats and she was in the mid to low 80's. Definitely not what my girl should be at. I put her on 1 liter of oxygen and will keep an eye on her very closely through the night. She had been fine all day, sats in the high 90's and actually eating a little bit ....so what gives?

Here's she is making blueberry pancakes for breakfast.

I will see what cardiologist says and then be putting a call into the pulmonologist. It's so frustrating because these two specialists always put everything off on each other. The heart guy will say its a lung problem, and the lung guy will say its a heart problem. It's so frustrating!!!

Who knows, maybe she really needs to get that next lung CT done that we've been putting off. Her last scan was already a year ago. Wow...time sure flys by.

I will let you all know if we go see cardiology. Have a good night!

What's going on?

This is the question that has all of us stumped right now.



In my last post I mentioned Arianna having lower than normal oxygen saturations. Well I've kept a close eye on her and decided yesterday she needed to be seen by the pediatrician.



Our wonderful pediatrician wasn't there so we had to see someone else. :( I was a little unsure about seeing this doctor because he was our pediatrician before we switched and the reason I switched was because he didn't take things very seriously before when she had low sats which ultimately landed her in the ER for respiratory distress.



Let me start out with the good news. Arianna gained 1 pound in just 1 month! I don't think she has every gained weight like that. So she is officially 25 pounds! :)



I gave her recent history to the doctor and he listened to her heart and lungs. Lungs were clear so there isn't any pneumonia or chest infection to be concerned about. However, he said her murmur sounded a little harsher than what was dictated last month. Okay, now I'm trying not to get too worked up about that because he hasn't listened to her murmur in about a year.



He is concerned about her lower saturation's and thinks this she needs to be seen by cardiology next week. Unfortunately, our cardiologist will not be doing clinic for another 3 weeks so we will have to see someone else. We are scheduled to go in Wednesday morning so please keep Arianna in your prayers.



He also said we can give her oxygen if she is satting in the low 90's or 80's. So last night I gave her some O2 for a few hours. Right now she is borderline needing oxygen as well. She even has a slightly elevated temp at 99.7. What is going on?!?!

I've noticed she is a little more mellow today and sitting down more. I know I shouldn't get all worked up but as I'm typing all this out I'm realizing I am kind of freaking out. I'm not ready for her next heart surgery yet. Okay, I better not even go down that road of thinking.



I will leave you all with this cute bath picture of Arianna my mom was able to capture the other night.

***UPDATE 5pm***

After I posted Ari needed some O2 and she decided to take a 2 hour nap, which I happily joined her. :)

When she woke up I took the O2 off and she was satting at 87. I decided despite what the pediatrician said, to go ahead and give her the Albuterol inhaler and sure enough her sats jumped up to the high 90's. So I guess this is a lung thing. I'll keep up the Albuterol and hopefully that will keep her satting high. We will still go see the cardiologist next week just to be on the safe side.

Well I am not feeling in the mood to cook at all so looks like it's pizza night!!!

Yesterday was not a fun day for us. Arianna was on and off oxygen all day. She at one point needed 3 liters which is high for her. She had a fever all day and night. We've been keeping the Albuterol going and I think that is helping. I did a really good tape job with the cannula last night cause it stayed on all night.

Today was a much better day and I know a good night sleep with some good ol' oxygen helped out. She was actually playing and running around today. The fever is gone and the runny nose is going away. The cough is alot better and not as frequent.

My mom and grandparents came over this afternoon for a little bit and she loved having the attention.

Since Arianna's oxygen tank was almost empty we had the home health people deliver a new oxygen concentrator today. We have never used a concentrator before but I asked for something that is easier to move around. The tank we had was 4 feet tall and I wasn't able to move it around if I needed. This one is smaller and on wheels. The nice thing about this is we don't have to refill it since it gets the oxygen from the air. :) One less thing to think about for me.

I cannot believe it but she stayed up till 11:30pm. I am so tired and ready for a good nights sleep. I have her on the monitor and she is border line with her sats right now. Thank you for all the thoughts and prayers. I'm finally coming to terms that this is our "normal" when Arianna gets a cold. It's just so frustrating because I don't know what is wrong with her lungs. I'm just asking God for a miracle.

Sick

Arianna is officially sick. :( She was up majority of the night coughing and crying. We started her Albuterol last night and she is finally starting to warm up to using the inhaler.

I gave her some tea and cereal this morning and she threw that all back up. I just hate seeing her this way. I just got her down for a nap and her sats are in the mid 80's so out came the oxygen. She freaked out again the second I put the cannula on but I can tell her breathing is much better with the oxygen so I'm hoping she wakes up feeling better.

It was a LONG night last night. She was not happy at all about putting the cannula on so we fought about it all night. I thought as she got older it would get easier....not so. She has only been up a few hours and was not very active. She was satting in the low 90's awake. She just feel asleep so I know she isn't feeling good cause this is a girl who never naps. I'll go fight to put the cannula back on her. :( Hopefully a nice nap with some good O2 will make her feel better.

I just wanted to give a quick update while I had the chance.

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. :)

Phone call from the pulmo

Finally I got the call from the pulmonologist. He told me they compared Arianna's chest x-rays to those in Dec. 07' and Jan 08'. He believes there is improvement from Dec 07' but not much from Jan 08', which is the time she was in the hospital with her respiratory episode.

There is clear signs of cardiomegaly, which means her heart is enlarged. Something she has always had and will have until she gets a valve placed.

There is also pulmonary edema (swelling) present, which is due to her heart function. Because she has no pulmonary valve that makes more blood go to her lungs, therefore causing the swelling. This will not go away until she has a pulmonary valve placed. He asked when her next heart surgery will be and of course I didn't like talking about that. I try not to think about those things. I told him what the cardiologists have said and he didn't say too much. Just that it will be up to the cardiologists when the surgery will be needed but we have to consider her lung function as well. If there begins to get increased pulmonary edema then we will have to start talking about surgery.

She also has hyperinflation in her lungs. He explained this to be something seen in people with asthma. This is the first concrete evidence to prove that Arianna indeed has asthma. We are to keep the albuterol inhaler for when she is sick but he does not want to put her on anything else at this time.

They also saw some high density in her right lung base which they cannot exclude the possibilty of a previous lung infection. Remember this x-ray was done with she was 100% healthy so that wasn't great news. We have always been told her right lower lobe is diseased and no one can tell us why or what is really going on there. :(

So with all of this news the doctors says Arianna is a child we really do not want to see get a chest cold/infection. He explained the need to keep her away from large crowds, sick people, and lots of hand washing. I told him how we stay at home and only go to family and friends houses that are healthy. We only take Arianna to small stores for quick trips but even that is kept to a minimum. He want to do everything we can to keep this little girl as healthy as possible. Even just the little head cold she had caused her sats to drop to 89 while sleeping. I am happy to say she did not need any oxygen with this cold, just a few puffs from her albuterol inhaler and she was good for the night.

Unfortunatly with the cold/flu/RSV season this means I can no longer do my hospital visiting. I'm really bummed about that because I've received a few calls the past week with little ones having heart surgery in the upcoming weeks. I love offering that kind of support to these families and I've been the only one visiting withing our support group. This is the hard part about running a support group when you have a child with so many illnesses. But Arianna is #1 in my life and this is what I have to do to ensure she is healthy and well. I'm hoping over the next year to get more people visiting at the hospital so it can continue year round.

Well I'm off to bed at 2:40am. Thats what happens when your daugher stays up till 1am the night before and actually sleeps in till 11:45am. It was nice sleeping in that late but not making it easy to fall asleep tonight.

Good report

Dancing around the living room...

Kathy, I decided this will be her halloween costume!

Cheese!


Mom, do you need any help?

(This kid LOVES playing with the dishwasher)

This is the face she does every time I say cheese..

So the doctor checked her lungs, ears, and throat and everything looked good. Thank God!!! At first she thought there was some decreased sounds in her right lung, she said it's really hard to hear over her murmur, but after 4 attempts everything sounded good. I've been wanting to buy a stethescope for some time and I'm sure some of you heart moms already have one, so do you have a preference? I figured I'll look on Ebay and see what they got.

The doctor felt that Arianna is just dealing with a normal virus and because of her lung disease we need to monitor her sats throughout the day. If she drops below 87 while she sleeping, or 90 while awake, then we are to put the give her some oxygen.

Get this...we are in the parkin lot of the doctors office and Arianna was falling asleep so I checked her sats and she was 92%. We get in the doctors office, they check her her sats and she's pulling 97%. Doesn't that always happen....your child is sick until the second they step into the doctors office. She did do a little cough when the doctor walked in the room so at least they know I'm not a crazy mom...wait...they already know I'm a crazy mom. :)

Our pediatrician is so great, the second she walked in the room she handed me Arianna's last two reports in her chart. She knows how organized I am with her medical records and always gives me copies. Seriously...I love this woman!

Right now we are waiting for Robert to get back with gas for the grill and we are going to grill up some hamburgers. YUMMY!

Won't be getting rid of the O2 quite yet

So the eating still is back to what I would like it to be but she is at least eating a little bit. This morning I checked her pulse ox when eating – cause she was not eating well and hardly willing to put food in her mouth – and she was running in the low 90’s. I decided to give her a little O2 and immediately she calmed down and stayed in her chair for 10 more minutes and ate a bit more. It seems to me that she gets irritable and does not want to eat when her sats drop below 94. It’s almost impossible to get her sats when she is playing so I just took her off the O2 and continued our day. We went to see Aunt Lissa, which was nice to get out of the house for awhile. She seemed fine, ate a little bit of macaroni and cheese while we were out, then on the way home she refused to drink her milk. She cried herself to sleep in the car (this is still SO hard for me to see, but I can not give in every time and stop the care like I used to) and when I got home I checked her sats while sleeping and they were at her usual 91. After 30 minutes I heard her alarms going off and she dropped to 87 but came back up to 90 after a minute. The weirdest thing I’ve noticed is when she lays on her right side her sats are lower than when she is on her back and when she is on the right side they get even better. I’m no doctor but I’m curious why this is. I was beginning to second guess myself about having these tests done but to be honest I really want to know what is going on and finally put my mind to rest.

I did speak with the pediatric nurse at our primary clinic and she is going to bat for us with the insurance company to get us approved for on more synagis shot. Thank God! The fact that she is going to be having tests done in the hospital is enough reason to make her want Arianna to have these shots. She is supposed to call me next week and let me know what the insurance company decides. I’m so happy…not like I want my daughter to have shots but its for the best.

Well…let’s see…that’s pretty much it I think. I’ve been staying pretty busy with the support group stuff. I’m meeting with UMC’s NICU manager on Monday and will provide them with material about the group to have available for families in the NICU. I’m still working on the other wards. I remember how scary of an experience it was to have just given birth to my daughter who had several heart defects and not know what the future would hold. I want to make sure these families have the resources available to them when they need it the most. I really wish there was something in place for us when Arianna was born. I have built such wonderful relationships with all you heart moms in cyperspace and want to offer the same kind of support to the local heart families.

Weekend Update

I just love watching her eat! She has come so far with her eating!

And yes...that is a cannula you see on her face.

Starting on Friday Arianna started acting a little different. Nothing drastic or anything, but just wasn’t eating much and seemed very irritable. Last night I decided to check her sats and she was running at 94, which is a little lower than what she was the week before. I decided to monitor her when she went to bed and sure enough she was dropping to 90 and even a dip into the 80’s so we put the oxygen back on. Then this morning I took her off the O2 and she was staying at 94 so I decided to keep it off. I started feeding her breakfast and she immediately started dropping so back came the O2. It seemed immediately after eating her sats would rise and stay steady so I took the O2 back off. It’s amazing the significant difference in her eating from the 2 days before. She seems to be playing fine so we’re only doing the oxygen when sleeping and eating to give her the extra help. This was exactly what the pulmonologist said to do if we noticed her acting different during the day. Regarding the pulmo, I still don’t have a date for the tests but I’m thinking I might hear something tomorrow.

We will be heading to the lab first thing in the morning then off for her hearing test. I’ll let you know of we have the clapping monkeys Krista! You kind of have me a little scared now…LOL!