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.

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!!!

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.

Let's pretend

Since we had such a rough time with the cannula last night I decided to put one on her baby doll since she has really been into playing with her today. At first she was not sure what to think, then she warmed right up. The cutest part was when the cannula fell off the baby's nose she said "uh oh" and went and put it back on her. She is the most compassionate little girl! Here are some pictures with her baby.

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. :)

Pulmonology appointment today

Today was our appointment with the pulmonologist. I have to brag on how good my little girl was. Normally she cries through the measuring process but not today. She was a total angel. She weighed in at 21 pounds 13 ounces, which is up 13 ounces in 2 months. Not too big of a gain but it's a gain so I'm taking it. :) Her height was 33 inches, which is up 1.1 cm in 2 months.

Then the resident doctor came in to get a history....normally I don't mind when I have to talk to them but today was just irritating. I understand everyone needs to learn but sometimes I just wish they would read the patient history before assuming what was done/or wasn't done. This was our conversation:


Resident: So when is she having heart surgery?
Me: She had surgery when she was 6 months old.
Resident: So she's done? (seriously I thought it was only non medical people who asked this.)
Me: No...she will need a pulmonary valve in the future.
Resident: So when will that be?
Me: Not sure. Cardiologists don't give you a timeline.
Resident: So she had like a shunt put in? (her exact words)
Me: This is where I explain she had the full repair but she needed me to go in further details to explain everything they did to her pulmonary valve. Guess for curiosity sake.
Resident: Just looked at me with this "WOW" look on her face.

Not sure if she gave me that look because of everything I knew or if it's because I'm just a heart mom and she's the freakin resident and I had to explain everything when all she needed to do was take a few minutes to review the chart. Sorry it just really irritated me today.

So after our brief conversation she did her physical exam on Arianna and I was so proud of my little girl. She did everything the doctor asked, including opening her mouth which she never does.

The pulmonologist comes in and he was so sweet and pleasant to her. He picks her up and puts her on the table and starts his exam. The entire time she is all smiles and lets him do whatever he wants to her which including making her lay down and she normally cries when they do that. The resident kept saying she's amazed that shes only 23 months old cause she is so well behaved. Yup...that's my little girl. YEAH RIGHT...only for them. LOL!

So the doctor said she sounds good but wanted to get a chest x-ray to compare to the previous 2 films which had some changes on them. Since Arianna is healthy at the moment (crossing my fingers it stays that way) I took her immediately to the other clinic for x-rays. The doctor should be calling me next week with the results.

We are to follow up with him in 3 months, earlier if she gets sick. He is a little concerned about the fact that her August cold caused her sats to drop in the 80's and be put on O2 at night. He really doesn't want to see what a winter cold will be like for her so he told us to be cautious and not take her anywhere populated like the mall, stores, etcs. They did check her O2 sats when we were there and she was satting at 96% which is what I've been getting at home.

I did ask about taking her up to the mountains and possibly on an airplane (not sure if we can even afford it, but in June is the Mended Little Hearts convention in Florida and I really want Robert and Arianna to come with me). He said we can take her for a trial run up the mountain but we have to bring the pulse ox and oxygen. He just stop at the first rest stop and check her sats, if she's good then we can go to the next one, so and so forth. If she can hold her own at 7,000 feet then she is good to go on a plane. He said if she does require oxygen at that level it's okay cause we could always arrange for oxygen on the plane. (Kathy your the first person I thought of when he said this.) He also suggested maybe taking a train ride to Florida but I'm not so sure about that. He did say even though her sats may be borderline at a higher elevation while resting we have to take into consideration that physical activity will make it worse.

As for me....I've just been busy studying. I'm hoping to take my final in two weeks. I'll be so happy to have this course over with and look forward to working as a medical transcriptionist starting next year!

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!

The lady came out to check our equipment today and everything checked out fine. We got a new lead for the pulse oximeter but she didn't bring extras. UGH!! We can only get 2 a month per our insurance which is SO stupid. So basically the reading we were getting yesterday were probably correct which means something is going on with her little lungs.

I did talk to the pediatrician that was working yesterday, not our doctor, and she told me to do the Albuterol treatments every 4 hours if she was wheezing. Of course she is no longer wheezing but be is still satting on the low side. I checked her when she was taking a nap this afternoon and she was at 87% so I hooked up the O2. Then when she was eating dinner I checked her again, since this is the only time she is sitting still and she was satting at 90%. She normally sats around 94% so this is a little concerning. I would understand if she was coughing and showing symptoms of a cold but she is not. So we'll keep up with the O2 during naps and at night. I have completely misplaced the cloth tape I need for her face so I'll be running out to get some more.

Our pediatrician is in tomorrow so I'll put a call into her first thing in the morning and see what she wants me to do.

Thanks for checking in on my girl. I finally bought some batteries so I'll post some pictures later!

Had to bring out the oxygen

I don't think I even mentioned in my last post that Arianna's sats at the doctors office was 96! I even told the pediatrician that her sats have been in normal range ever since the bronch. Since we have so many unknowns right now I decided I would monitor her sats more often so I have some data to give the doc's.

So tonight she was just fighting her sleep like crazy for about 2 hours. She would just lay around the house, which is totally not like her. I checked her sats and she was at 95 so I didn't worry about it and left her alone. She finally fell asleep at 10:30 and I plug her up to the pulse ox and she was reading at 90. Lately for whatever reason she seems to be lower when she first falls asleep then jumps up a bit. Well not tonight...she did the opposite. I'm sitting in the living room and hear her alarm beeping. I have it set to alarm under 88 so I immediatly go in and check to see if 1.) She's breathing and 2.) What position she is in. It seems to be totally positional with her and I can just move her around and her numbers will jump up. To my surprise she was on her belly, which is her best position and can normally get a 94 out of her. I got a little concerned, since I am totally on edge after all the events from today. I wait...and wait...and she jumps up to 90...then dips back into the 80's. So out came the oxygen.

Oh man was she not happy. I thought I had the cannula on her pretty good but a few minutes later I hear a beep and her cannula was out of the nose. I decided to tape it on and that was even more traumatic. She is such a grouch if you mess with her while sleeping..but then again most of us are. :) I can't seem to sleep even though I'm extremely tired so I decided to turn off the O2 and see where she was at. While she was on oxygen her heart rate was about 75, which was so nice to know her heart didn't have to work as hard. Immediatly after taking her off the oxygen her heart rate jumped up and her sats dropped to 92, which isn't bad but since she was having a difficult night I decided to keep it on her tonight and let her heart have a little bit of a break from pumping so hard. It truely breaks MY heart to know my baby's heart has to work so hard just to sleep.

So I'll get a good nights rest knowing she is enjoying some nice pure O2 and who knows maybe it will help with her eating tomorrow. You better believe I'll be calling some docs tomorrow if I don't hear anything in the morning.

Good Night!

Good Report

Arianna did really good during her hearing test. She passed all the tests with flying colors. (And yes Krista…we had monkeys!) She wants to follow Arianna annually and was able to give us a recommendation for a speech therapist.

Then we were off for the blood draw which she screamed her head off the entire time. I noticed her getting a little blue before we went in for the blood draw so I hooked her up to some oxygen, which was a good thing because her eye lids were totally blue when they were drawing blood. Then we went out to the courtyard and she enjoyed a sucker the nurse gave her.



Then she walked around the grass for awhile and got mad when I picked her up to leave.
I don’t think I’ve ever seen grass like this in Tucson.

She hasn’t had much of an appetite all day so I’m praying she start eating again. We see the nutritionist and OT tomorrow so we’ll see how much she weighs. Right now she is sleeping and maintaining decend numbers so we haven’t had to put the O2. We’ll just keep an eye on her and give her the oxygen when needed.

Well its late and I need to get to bed. Hope you all have a wonderful week. Please keep Emma in your prayers she has her 2nd surgery this Friday.

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.

Number's Game

What a great day we had today! Arianna is just blossoming into such a beautiful little girl. It’s kind of sad because she’s not that little baby anymore, but a rambunctious toddler. Her walking is improving and she is starting to do the cutest little dance when she hears music. I have even been thinking about when to have another baby because Arianna fills my life with so much joy. But right now is not the time to be having another baby so we’ll hold off for a few more years. I think I give Robert grey hairs just talking about it. Oh well….I can’t help it.

So yesterday I kept her on oxygen all day like I planned but this afternoon I had to change her tape so I took off the cannula to give her a bath and when I rechecked her sats she was 94! I waited another 15 minutes and she was 93-94 so I left the cannula off. We even took a quick trip to the bank just to get Arianna out of the house for a minute. When we got home she fell right to sleep and during her nap she stayed in the low 90’s so I decided to just keep an eye on her and leave the O2 off. I did notice her heart rate was higher than it normally is with the O2, but that is to be expected since her heart has to work harder to supply her body oxygen. Once she woke up it was no stopping her from there, she was all over the place. Man…oh man…she is getting quick! It was so good to let her run around and not worry about the tube holding her back. She stayed off oxygen for 8 HOURS!!! She didn’t eat much today but I think that’s because she is working on another tooth. When she fell asleep tonight I checked her sats and she was 89 so we hook the O2 back up. Right now she is resting on half a liter and her sats are at 95. It’s such a numbers game with this O2. It really can drive me crazy at times. Sometimes I think I can overanalyze things but I feel like I have to be this way….hello, she’s my daughter.

Tomorrow morning we have an appointment with the geneticist. Last time we saw him Arianna was just diagnosed and I had no idea what DiGeorge Syndrome was about. I really don’t know what this appointment will be like but I’m sure I’ll be telling about all the things we’ve gone through with Arianna. Who knows, maybe he can shine some light on this O2 situation. Then…we are meeting with the speech therapist for our initial consult. She is coming to the house so we just have to make sure we’re back in time for that. Hopefully I get a good vibe from her, since our other therapist has been great. This is the first time working with someone that is apart of an organization, instead of an independent therapist. I have built such a strong relationship with our OT and I’m hoping we can build the same type of relationship with this therapist. They really do become like friends and Arianna really enjoys their visits. I’ll update after we get done with everything and let you all know how things went.

Arianna once again wouldn't sleep in her crib so she slept with mommy and daddy. I have a feeling she will be 15 and stil sleeping in our bed. :)

She definintly needed the oxygen this morning so looks like we will be keeping this nasty thing on her nose. I did take the cannula off her nose for about 30 minutes to give her a bath and let her walk around a bit. When I checked her numbers they were back in the low 90's so I put O2 back on her but the 1/4 liter wasn't doing much help so I had to bump her back up to 1/2 a liter. Maybe she just over did it with all the walking and her body needs more O2 today. I wish I could just leave her at a setting and not mess with it. That was the plan wasn't it? But after seeing her hold such good numbers last night off oxygen I thought we would try it again. Guess she isn't ready for that yet. She's been on oxygen for 2 1/2 weeks, I guess I didnt' think she would require oxygen more than the hospital stay so the longer she's on it the more I want to try to get her off. I feel like if I just give in and not try weaning her then it's like I'm accepting this and I don't want to accept it. Gotta run....

I have been trying to post all day but Arianna is keeping me so busy. Last night she did well and dropped to the mid 80’s only a few times, but still scared the crap out of me me I heard her machine peeping. I guess I was just so scared I would not hear her alarm and something bad would happen. She is back to playing, walking, crawling, and eating! We are trying to get used to the oxygen but for the most part its going pretty well. I feel so bad because she gets all tangled in her cords. We can no longer leave toys scattered throughout the living room because it will get snagged on something and it doesn’t look like that feels too good when her face gets pulled. Poor baby ☹ It’s not like we already had a lot of room with Arianna’s toys taking over the place, now we have a huge oxygen tank in our living room. I think if we just put a lampshade on it, it would blend in! ☺ I don’t know what she did but all of a sudden tonight she let out a huge cry and Daddy said she ripped the cannula out her nose and some tape off her face. Then she looked at me and sure enough she did pull some of the tape of and even took some skin with it. So now she has a boo boo on her face right were the tape is. So much for my good tape job last night. I don’t want to mess with it because it will just get more irritated. I’ll leave it alone until I absolutely have to change the tape.

Tomorrow will be the first time taking her out in public, but it’s just to see her pediatrician. They gave me this handy little portable tank to take with us. They say it should last 3 hours but I’m not trusting anyone, so I’ll take an extra. I don’t know why I’m nervous about taking her out, I know I’ll be fine but I guess it will be different having people stare at her. Its just that so many people have told me how healthy Arianna looks and if it wasn’t for me telling them what is wrong with her no one would no. Now I feel like everyone will look at her like, “Oh poor kid, she must be really sick”, and I don’t like that feeling. I know, who cares what they think, this is my daughter and she is just fine…oxygen and all!

We finished with oral steroids today, just have 3 more doses of the albuterol left and 3 more days on antibiotics. We will continue with the FloVent I guess until we see pulmonolgist, which by the way they have me scheduled for April 8th. Yeah right I’m not going to wait that long. I’m still waiting to get a call back from there office. If I don’t hear something by Friday I swear I’ll go to the office and make sure I get an earlier appointment. Can you tell the week stay in the hospital had gotten to me!!! I’m sick of getting no where being nice, and if I have to start getting more demanding than I will.

Tonight I listened to her chest and I don’t hear any wheezes or anything so we’re hoping for a good report tomorrow. I do know that she needs her O2 still because she rubs her cannula out her nose at night and her sats will immediatly drop. Hopefully this is only a short-term thing and we can get off this O2 soon.

I did get the medical report from our last visit with the pediatrician before our hospital stay and in the assessment and plan section he talks about her poor weight gain and contributes this to her low saturations and feeding difficulty. He mentioned the upcoming swallow study, which we already ruled out anything going on there. He also wants a more in depth look at her cardiac and pulmonary issues. So I think he might be thinking there is more of a cardiac issue going on there. I wish he would be more straightforward with me. I’ll be having a nice little chat with him tomorrow. Our appointment isn’t until early afternoon but I’ll let you all know how it goes.