Appointment with the pediatrician

Today was Arianna's 18 month well-child check up with the pediatrician. It's almost funny calling it a well-child appointment. The pediatrician came into the room and looked at me and asked, "How are you doing?" I thought about it for a second and responded.... "Tired."I am finding myself so emotionally tired lately. Alot of it comes from taking care of child that has a disability but there are other areas of my life that I'm struggling with right now. I wish I could be that perfect girlfriend, mother, friend, etc....but I can't. So when the doctor looked at me and heard my answer she did something that really brightened my day. She said, "Okay...well Arianna is here for a well-child appointment so lets talk about all the normal stuff first." I can't tell you how great that felt. For just a brief moment I got to see what it would be like if I had a normal healthy child. Of course I laughed my way through the questions cause I could of added so much more, which would get into all the medical issues, but instead I chose to give myself a moment of sanity and treat Arianna as if she was normal. Then moments later one of the questions lead into the immunology side of Arianna's care and from there my 'normal' went out the window.

So to sum things up from the appointment. We have decided to try and schedule the consult with the immunologist and our pediatrician some time in July. The pediatrician has to make this appointment so she will let me know when that will be. I'm just so happy she is willing to go with me and help me understand all this a little better. She then told me they were unable to get the MMR shots individually and if I wanted Arianna to get her measles shot she would have to go to the public health department. She highly, in fact out right told me, not to take Arianna there....so we are NOT getting the measles shot until after we talk to the immunologist in July. Arianna was suppose to get her chickenpox vaccine today but since that is a live vaccine as well the pediatrician did not want to give that to her. It just amazes me that she feels so strongly against it when the immunologist said it was okay. I'm just following my gut instinct and something tells me she should have the live vaccines yet....and thankfully our pediatrician agrees. She doesn't feel comfortable putting Arianna at that kind of risk giving her the measles vaccine but stressed to me how catastrophic it would be if she contacted the measles virus. So, in the meantime, she says to keep doing what we've been doing and only taking her to the selective places we feel are okay. She did get her Hep A shot today and did very well.

One thing I brought up to her was something I noticed with her legs several months ago and noticed it again the other night. Arianna's seems to have bowed legs. I asked the pediatrician today and she said Arianna has mild tibial torsion. This is nothing to be concerned about, most children grow out of this, but it makes sense why Arianna walks with such a wide gait. We are seeing the orthopedic doctor in August so I'll talk to him about it then and see if anything needs to be done. We had seen the orthpedic before switching to our new pediatrician so she asked what our followup in August was for and I explained the 1 % scoliosis that was diagnosed. She asked to look at Arianna back and before she did that, I told her I strongly feel the curve has gotten worse. This is something I noticed about a month after our appointment with the orthopedic doctor. As soon as she lifted up Arianna's shirt she said, "Oh yeah, there is definintly a curve doing on. She said not only does she have a "S" curve but also a "back and forth" curve. I thought there was something funny about that because you can see her spine at one point, then the farther up her back you go it gets flat and you can't see the vertebra. So I am now worried about the scoliosis progressing and what the doctor will say when we visit in August. The whole...wait and see stage...which I hate. One thing the orthopedic doctor mentioned at our initial appointment was if the curve had worsened she might need surgery. So once again I'm a little worried but feel better after talking to the pediatrician today. I told her what the orthopedic doc said about surgery and she said we will definintly get a second opinion if that is what happens. I really love this doctor! The pediatrician did say it possible that Arianna would need a back brace when she starts puberty because females have a rapid growth curve when they hit puberty. I know, I know...don't think that far ahead but that is what she said.

So for now I'm just waiting for the immunology appointment and will drive myself nuts trying to figure it out on my own in the meantime.

Thanks for checking up on my baby girl. I have some really cute pictures but for some reason my camera won't download my pictures anymore. UGH!!! So I'll have to work on that....

Much better today

I let Arianna sleep in until 10:30 and she woke up in a great mood. No fever, a slight runny nose, but full of smiles! Glad to see her feeling better. Now we're off to BBQ at my grandparents this afternoon, today is my Papa's birthday! It's always such a treat to spend time with the family!

Miss Cranky Pants

The titles speaks for itself. I have Miss Cranky Pants on my hands today. It started last night when we laid down for bed and Arianna threw up in our bed. After a complete change of clothes and bedding we laid back down and she went right back to sleep. She felt a little warm but doesn't have a fever. She woke up in a good mood but did have a runny nose. Since she wasn't too bad I was able to go to church. Yes, that right, I actually went to church this morning! Instead of going to the normal church I attend I went to Word in Season to hear David Huskey minister. This is the pastor of the church my family attended when I was a child when we lived in Taos, NM. I even went to kindergarten at this church! I have to tell you this is a man of God and if your ever interested in getting some good teaching material check out David Huskey Ministries. I got some teaching CD's and books this morning and already listening to the first CD. Since I can 't attend church every week I think its important to constantly be listening to the Word, whether it's through reading your bible or listening to teaching tapes. I know sometimes I get off track but it should be the most important thing we do in our lives if we want to live in his glory. I'm not perfect by far, believe me I have a long way to go, but if I stay focused on what's important in life than I know I'm going in the right direction. One thing that really bothers me with Christians, and people in general, is that they don't call on God until they are in a crisis. I was that Chrisitian...it touch my daughter being diagnosed with a heart defect to really have to reach out to him and put my life and the life of my daughter in his hands. I have to tell you, I wish I would of done that along time ago. Don't wait until something bad has to happen to get closer to God. We need to wake up every morning and thank God for what we have, instead of complaining about what we don't have! Wow...didn't expect to go off, guess I just needed to get that out!





So after church I was able to go out to eat lunch with my parent and Pastor Huskey and was blessed by the presense of such a wonderful man. When I got home Arianna was sleeping on her Daddy and these are the pictures Robert took right before I got home.

She kicked Daddy out of the recliner! :)

She ended up taking a 20 minute nap after I left for church. Robert gave her some motrin and she went down for a 3 hour nap. She woke up in a good mood but still not 100%. She still has a runny nose, mainly when sneezing, so I'm hoping it's not a cold. No cough or anything else so I'm chaulking it up to teething. She did have a really good dinner tonight, which is always nice to see her eat so well. Hopefully it's just these darn teeth and she will feel better by tomorrow.

**For all that have been praying for Drew I really appreciate it. He is recovering in ICU from his 3rd open heart surgery and still intubated. His body needs to get used to the new anatomy. Please keep him in your prayers as he might be extubated (breathing tube taken out) tonight or tomorrow.**

***UPDATE***

Little stinker..as soon as I'm done typing this post I check her temp and she has a low-grade temp, so I just gave her some tylenol and hopefully that will help.

Prayers for Drew

Please pray for one of our heart buddies, Drew. He is in the operating room right now having his 3rd open heart surgery. I know how strong the power of prayer is....so please stop what your doing and say a quick prayer.

1 year Anniversary

Today marks Arianna's 1 year anniversary since her open heart surgery. I have experienced so many emotions today but mostly I've been grateful. She is such a strong little girl and I am so proud to be her mama. Every day is a gift from God!

Here is Arianna's montage which documented her surgery.

Arianna Marie

And our montage celebrating "Happy Heart Day!"

1 year Anniversary

***I am having trouble adding the montage to the blog directly so I had to do it this way***

Thank you

I just wanted to thank you all for your kind words of encouragement. It's truly a blessing to have you all apart of our lives. Just the fact that I have other people who understand what I'm going through and walking this journey with me is uplifting.

God bless you all!

Consult with doctors (LONG POST)

I have honestly dreaded sitting down and writing this post. It's not that it's bad but that I don't want to deal with the flood of emotions I have going on right now. Well I better start from the beginning...

So we arrive at the hospital for our consult with the pediatrician, pulmonologist, and cardiologist. We meet our pediatrician in her office and she escorts us to the conference room. My mom went with me, like always, cause she's the greatest! I wouldn't of been able to keep up with Arianna and listen to the docs without her. Plus she is a second pair of ears in case I miss something.

So we are the first in the conference room and I start to ask the pediatrician how much she knew about immunology. Last night I was trying to review her most recent labs and have to tell you how frustrating it is. Immunology is one area I absolutely don't understand. Since I don't have much faith in our immunologist it makes it very hard for me to feel she is getting the best of care. Makes it even harder since I'm always told this is the best doc to have and we are honestly thinking of switching back to the original immunologist. (If you can't tell already..I'll be all over the place in this post.) So back to the meeting... The pulmonologist and cardiologist arrive and our pedi starts by introducing us to the pulmo, and surprisingly enough he remembers us from when Arianna had her surgery. I start out by giving him a some what brief history of Arianna. I also expressed my concerns I have with the other pulmonologist, which are the following: not calling with results, doing bronchoscopy before a CT when clearly that is NOT the best thing to do (makes it hard to see what exactly is consolidation in her lungs), leaving it up to me whether to give her the Flovent inhaler, chalks everything up to Arianna's OHS and multiple anesthesia's, and tells me we no longer need to follow up with pulmonary. (This is the doctor who is married to our immunologist...beginning to see the picture! UGH)

The pulmo first asks the cardiologist to explain Arianna's cardiac function. Our AMAZING cardiologist (can you tell I just LOVE this guy!) explains her function: no residual ASD or VSD; trnsannular patch for pulmonary valve; created monocusp valve for PV, which is no longer there which means it is free flowing (pulmonary insufficiency); generous right ventricle hypertrophy with no signs of heart failure. He goes on to explain Arianna has tolerated all her weanings from Lasix...which I interrupt to tell him she has very puffy eyes every morning. He gives me a shocked look...but goes on to explain this is just because her kidneys are trying to get used to the new volume and should balance out soon. From a cardiac standpoint...this is the best news I heard today...Arianna is doing GREAT!!! He said she will need a pulmonary valve placement done sometime but not in the immediate future.

After the pulmo heard this he felt comfortable saying the lung issue is not being caused because of her heart. Good news...but where does that leave us? He reviewed her CT last night and told me it's hard because the CT was done right after the bronchoscopy and since they do a lavage (fill the lungs with liquid, then suck it out) it makes it look consolidated on the CT. This doesn't account for all the consolidation but it didn't help it any. I asked why this was done that way and he said it must of been a scheduling issue. So for anyone going to have both these tests done together...make sure the CT is done BEFORE!! Wish I would of known that beforehand.

He ruled out aspiration. YIPPEE!

I ask what caused her respiratory distress in January and he answers honestly, which means alot to me, that he doesn't know. It could of been the chronic illness she had a month prior but can't be certain if that's the case. He said Arianna has basilar (lower lobes) lung disease. He said of all times this is the best time to have this because she will produce more lung tissue over the next couple of years. His hopes is that the damaged areas will recovery as her new tissue is made. He mentioned the immunologists most recent report showed she has a low lymphocyte count, which he never mentioned to me...so I'm pretty upset about that. He also mentioned his colleague gave Arianna a diagnosis of asthma. This really upsets me because this was NEVER told to me. We are told basically to keep an eye out for wheezing and if she gets a cold to start her albuterol treatments. It may very well be something we just have to treat in the winter months, but once again we're not sure. We were told to consult with him before going on any trip that would require her to go higher in elevation, even Mount Lemon would be a concern. He said her sats would drop and she would probably not be able to walk or eat...so I told him we just won't go anywhere. This is sad for me, because I've been waiting to take her to the Rose Canyon Lake to go fishing ever since she was born. My grandfather even bought her a fishing rod months ago, which has been sitting in the closet. Just another thing we won't be able to do...but we'll find other places to take her! Lets see...anything else...I think that covers most of it from the pulmonologist. Oh yeah...we follow up in 6 months.

When we were wrapping things up I start talking to our cardiologist about something I discovered last week while watching Discovery Health...I'm addicted to that channel. LOL! There was a 9 month old baby girl who had a pulmonary valve placed in the cath lab. For those who don't know...we are hoping that research would get to the point where these valves could be done through the cath lab, which would elevate the need for multiple open heart surgeries. We have been praying that science would get to that level and Arianna wouldn't need to have another invasive surgery. I found the article on the Stanford website to make sure this was correct information. Here is the article if your interested. He told me he was unaware of this happening with children this young and wants me to forward the article to him. He cautioned me about where I get my information, but once I told him it was at Stanford he told me he is friends with on of the doctors in the cath lab. I'll be curious to see what he thinks after reading the article. There is hope for the future!


Then, once all but the pediatrician leaves I begin to discuss my concerns with her about the immunologist. After several minutes of talking she asked if I would mind if she made a consult for all three of us to talk, just like she did today. I thought, "GREAT!" I told her I don't want to step on any toes but I really am thinking of leaving this doctor, but know he is the best and want to try to make this work. She is very interested in learning more about immunology herself...and this will be the way she gets us into this consult without the doctor thinking I'm pulling the pedi in because I don't trust him. She then mentioned Arianna is her first DiGeorge patient and she is wanting to learn all about her sydrome along with me. She has treated DiGeorge kids in the hospital setting but says it is alot different when you follow the child there entire life. I feel so blessed to have her working so diligently with us and being such a great advocate for my daughter and myself.

So...where does that leave us...we are told to still stay away from large groups of children, church, daycare, any who is sick, etc. It would of been beneficial to have the immunologist attend this meeting today but that was thought of too late. Our pediatrician did asked, "When can I start to treat Arianna like a normal child?" And basically the answer was led back to..."keep doing what your doing." We may never know WHEN or IF we can treat Arianna like a normal child, but we can give her the best life possible. It truly breaks my heart that I cannot take her to church and enjoy a Sunday morning service like most people, let her go to the toy store and pick out a toy, attend our support group meetings, and so many other things I would love to do with her. But we will make the best of our situation and remember that God is in control. The doctors made it sound like we should continue this path for, at least, the next year. That is just a small amount of time when your looking at the big picture. I had a vision tonight of Arianna being in her early 20's, sitting down for tea, talking about her life as a child and all that she has been through. She looked at me straight in the eyes, as I cried and explained to her how horrible I felt for never being able to take her places that most children could go....and she looked at me with the sweetest face and said, "Mom...I don't remember those times so don't worry." I guess when it boils down to things, she really won't remember these first years. It's us parents who go through the emotions and struggles of adjusting to our new 'normal'. Then I sit here and look at a beautiful little girl who has the energy to run around the house screaming and I just thank God for all that He has done. I'm so thankful that she is even alive today. So many families lose their children due to CHD's or other medical illnesses. I have to be thankful I even have Arianna here with me today, to love on. Who cares if he have to spend SO much time at home. One day when she is a teenager I'll be looking back wishing she was this little baby who couldn't go anywhere, just to get a few minutes alone with her. I know we all have our areas we struggle with and I thank God that he has shown me the bigger picture. I appreciate SO much but sometimes I just hate MY situation...no matter how big or small it may seem to others. I just wish I had a NORMAL like everyone else. I wish Arianna didn't have a genetic condition that could possible be passed to her children. I wish she could go on play dates, attend Mommy & Me classes, or even play at the playground. I guess I feel like I'm still mourning for losing the 'healthy' child I thought I would have. I know that God has a plan for her and even though it wasn't the plan I was hoping for, I know she will touch many lives along the way.

Pool Time!

The day has finaly came where I was able to take Arianna swimming. I was so upset that I couldn't take her last year. Her surgery was last May and had some issues with the incision so they told me NO swimming. But today....we FINALLY went swimming.

Gotta eat my hot dog first...

More milk please!!

Not liking her floaty too much.

The pool was pretty cold so that probably didn't help.

My mom was taking pictures and when I got home I saw this short video. Don't think she realized she did it either. Our pool experience was short lived...but a wonderful experience. I cherish moments like this. I can't wait for so many more!

New home...

...for our turtle, that is! I just had to share this with you all. If you remember we were given a turtle several months ago. Originally we got her a 20 gallon tank and realized quickly that we would need to upgrade. Well...thanks to my brother-in-law we came across a sick deal and got a 65 gallon tank. We moved Flash (turtle's name) into her new home tonight. I don't know who's happier...me..or Flash! We put some minnow's in and she has been chasing them around all night. Here are some pictures!

Heart Walk Pictures

Finally, I have finished the montage for the Heart Walk. It was such a wonderful day I have to share with everyone. Thanks to all the walkers that came out to join us!

Photo and video editing at www.OneTrueMedia.com

Pictures

Okay Megan...here are your pictures! :)

She's dancing around like a goof!

Getting into EVERYTHING!!!

And my new favorite picture is on the top right corner of the blog. It's total Arianna attitude!

GI appointment

So we get to our appointment on time...which is a first. I know it's horrible but I'm always running late. Last week I even got a speeding ticket. I can't help it...in my little 2 door cavalier I don't feel like I'm going very fast. Well, big mistake and got a ticket...now I get to go to driving school. Yuck!! But it's my fault and I have to do what I have to do. Let me mention I got this on the way to see the cardiologist. I am trying to give myself extra time to get from point A to point B. It actually worked and today I arrived right on time...with no ticket.

So we get there and to my surprise Janet, our OT, was there. We happened to sit right next to those bead toys that are always in the doctor offices. I actually let Arianna play with it for a second but immediately sanitized her hands when she was done. I am trying to let her do more without me being a complete germaphobic. They call us back to do all the measurements and to my surprise she did extremely well. She didn't cry or fuss one bit. She has even got to the point where she will take the stethoscope and place it right on her chest. So cute...but kind of sad that she knows so much about the medical profession and what they want to hear. :( We go to our room and unlike last time the doctor comes in right away. Actually we saw his colleague first and tried to explain Arianna's history, which is kind of ridiculous because it's so confusing. I started back with the respiratory distress issue, which led to GI studies and she asked what the diagnosis was from pulmonary and I gave her the look. Janet stepped in and said it's been a nightmare trying to get this taken care of and the doc asked, "So do you see Dr. Daines?" I tried SO hard not to say, "Yes...and I HATE her." Instead I said, "Yes, but we are getting a second opinion from Dr. Brown on Monday!" You have to realize the all do clinic in the same clinic. Then she mentioned, "Well you know they are both in the same practice" I wanted to say, "Yeah but she has no idea what she is doing." But once again I just shut up. Then Dr. Ghishan came in and the first thing he said was "Man, she is beautiful!" He is so sweet and I really like this man. He said Arianna has gained 1 lb and 1 inch since February and he is perfectly happy with that growth. He said she will not be a big girl but that is fine with him. He is content if she continues to gain 1 pound & 1 inch over a few months period, then discharged us from seeing him. Great to hear since we were so close to a feeding tube. It also feels good to get rid of another doctor. I asked him about the possibility of her aspirating and he said absolutely not. He said he will not do any more GI tests on her because that is completely unnecessary. I am trying to get a copy of this clinic note to take with me to her consult on Monday. This is the appointment with cardiology, pulmonary, and our pediatrician. I did, however, get the clinic report sent to me from cardiology and the PC said he thinks this might be atelectasis. So I'm really glad to be having the consult with both docs.

All in all, things are going well. I did notice some puffiness of Arianna's eyes yesterday morning, which got better by the afternoon. I'm just keeping a close eye on her since she is off her Lasix.

One of our heart buddies had her 3rd open heart surgery today. Nevaeh is doing well and recovering in ICU. Please keep her in your prayers that she gets off the vent within a few days, as she had trouble with that before. Keep the entire family in your prayers.

**Forgot to mention, Arianna weighed 19 lbs 6 ozs and was (I think) 30 inches tall.**

Nothing much

We've just been hanging out with my Nana in the mornings this past week and trying to get things done around the house. It seems like it's going to take me 6 months to finally get everything set up the way I want it. Oh well...at least I love my home and have a roof over my head!

Arianna had her speech therapy yesterday and our therapist was very impressed with all the new sounds and words Arianna is saying. She will be out of town for 2 weeks so we'll see her again next month. In the meantime I'm just to keep doing what I'm doing with her and watch her develop.

I've been staying pretty busy with the support group. I'm getting care packets for the hospital NICU and PICU which I'm really excited about. I'm making alot of contacts within the hospital and trying to get the word out as much as possible. I'm SO excited to be having a 35 year old CHD survivor speak at our next meeting. I have SO many questions and just can't wait to hear all that she has overcome. She has had 5 open heart surgeries and the most recent was 2 years ago...so I'm just excited to hear all she has to say. For us mommies with younger children it gives us ALOT of hope for the future.

That been about it for us. We have Arianna's GI appointment tomorrow and I'm just so amazed how 3 months has already gone by since we've last seen him. I know he will be very pleased with her most recent weight gain. Who knows maybe we won't have to go back...but I have a feeling he won't let us go that easily. I'll ask him what he thinks about the possibility of aspiration and all that just to get a GI's perspective. I'll update more tomorrow

Good night!!

My turn to brag!

I just had to tell everyone how proud I am of my baby girl. The past few days she has been really working on her speech. Today I was telling her what a good girl she was for eating and she looked right at me and said "goo gir"! I was so surprised and though maybe it was a one time thing, but nope she kept saying it all day. She went up to her Daddy tonight and said it and he knew she was trying to say something but couldn't figure it out. I told him what she was trying to say and he was so shocked. Trudy...you were right, all in HER time! She has been trying to say 'down' and is constantly saying 'uh oh' when she drops something or does something mommy wouldn't be to happy about. Well it's late and I hear her crying. Off to bed....

Happy Mother's Day

Hope all you mothers had a wonderful day. I went to the ballet last night and watch the presentation 'Cinderella'....it was beautiful! It was also nice to get out and have some adult time. Today we didn't really do much. I woke up and Robert made us breakfast which was SO nice. Then we went to see my family for an early dinner. We let Arianna play with chalk for the first time today. She wasn't too interested and lost focus easily. She rather eat the chalk then write with it, but it was nice to see her out and playing. I didn't have my camera with me so I used my phone to snap a few shots.

I just love watching the way my nephew is with her. He is so sweet and gentle with her. She had a blast playing with him all afternoon.

Twists & Turns

Where does it stop!

This is how my day went:

1. Leave 2 messages for the immunology nurse.

2. Call Lab Corp and speak to the same manager I spoke with last time. She tells me she'll look into it and call me back.

3. Get a call back from immunology nurse and this is what she says: She is sorry that no one in the office realized it was the labs from last year, however, the immunologist says to still get the MMR vaccine. She goes on to explain that once these labs are checked the levels never change and since Arianna had a moderate response last time, she is fine to get the MMR. I tell her I am not satisfied with this answer and demand to know more information before giving this vaccine. I ask her if this test doesn't change then WHY would he have us do it again. She said, "Well maybe he didn't know she had them done." This is when I lost it. We have met him before and he has the labs in her chart. The only way he wouldn't know was if he didn't look at her chart and if that is the case, then I don't want him taking care of my daughter. I was PISSED!!! I told her I am at the point of taking my daughter out of town to make sure we are getting proper care. (Kathy...I was just talking to Robert today about going to CHOP.) She asked me what I want her to do and I said...nothing. We had an appointment to see the pediatrician this afternoon and I wanted to talk with her first before doing anything.

4. I talk to Robert about the possibility of going to Children's Hospital of Philadelphia (CHOP) because they specialize in 22q Deletion.

5. I decide to call our previous immunologist to see if he would talk to me about our current situation and give us his advice. (It's a long shot but I felt I needed to try) I look at some old labs in my charts and see a fax that he had sent to Lab Corp last year. I called the number, thinking it was his office, and to my surprise Dr. Lahood answers the phone. I quickly realize this is his cell phone I just called. I explain who I am and apologize for calling on his cell but this was a number I had in my charts. I went over everything with him and told him I really value his opinion. He agreed with everything our immunologist said so I felt alot better about getting the MMR today. He tells me to call him any time if I have questions. What a nice man! You may be wondering why I left him...and so am I. (But honestly this immunologist doesn't practice at the hospital we take Arianna to. And our immunologist now is supposedly one of the best...could of fooled me.

6. So I'm on the way to the pediatrician appointment and I get a call back from Lab Corp. Guess what...they found the CORRECT labs that were done in May of 2008. I ask her to fax them to the pediatricians office since we were on are there.

5. We get there and there is no fax.

6. We talk to the pediatrician who is just confused as to why we are having such a hard time with the immunologist. She asked me, "What did you do so wrong in your life to deserve this?" Joking of course, but now I'm beginning to wonder myself. We go over EVERYTHING and she told me she just doesn't feel comfortable giving Arianna the MMR today. I ask her about doing the shots separate so she is looking into that for me. We then talk about the pulmonary appointment she is scheduling for us and it looks like we are going to try for next Thursday. She took the liberty of printing our the emails that have been done between herself and the pulmo. I just LOVE this doc! Last week she asked us to email her a list of questions, which she forwarded to the pulmo to read before our appointment. One of our questions was if we needed to have a pulmonary and cardiology consult together, just because the heart and lungs work so closely together. The cardiologist said he wouldn't mind doing this a few months back. The pulmo replied saying he thinks that would be a great idea. So we are having the cardiologist, pulmonologist, pediatrician, and myself at this meeting next week. So hopefully we can get some answers. Now only if we could find a good immunologist. Highly unlikely :(

7. Next our pediatrician takes a listen to Arianna and comments on her murmur. I ask if I could take a listen with the stethoscope. She said I should listen a normal heart first to hear the difference..since I have a murmur I listen to our pedi's heart then Arianna. Wow...what a difference that is. It's weird because it's a different type of murmur than before her surgery...of course thats because the VSD is patched, but it still brought back some bad memories. Right before Arianna's OHS her murmur was so loud I didn't have to put my ear to her chest to hear it and she sounded like a washing machine. It breaks my heart that my baby doesn't have a normal heart but I'm just so thankful that she is doing well and thriving. That reminds me...are you ready...she weighs 19 pounds 8 ozs!!! I'm so proud of my baby girl. I think we'll have a celebration when she hits the big 2-0 mark!!!

7. So the pedi goes to check the fax and still nothing. UGH! I call Lab Corp and after waiting for 5 minutes I get disconnected. I call back and no answer. I leave a message for them to re fax it and we had to leave the peds office before talking to the pediatrician again (she had to step into another appointment since I was just on the phone and she had patients waiting)

8. We get to my Nana's to check on her and I get a call from the pedi. She received the fax...everything looks within range from what she can tell. There was one thing that was low but she said that is normal...I'll have to find out when I get my copy. She says she feels better having these results and is going to look into the separate vaccines and get back with me. I asked her to send me a copy in the mail which I'll probably get next Tuesday. Once I have the results I'll put a call into the immunologist and see what he thinks.

9. We then had a wonderful evening at my Nana's and we're just so thankful she is doing so well.

10. We drove home, Arianna feel asleep in the car, but woke up after getting home, and the last time I checked Robert was holding her trying to get her to sleep.

I'm done...Ta Da!!!

I know I could of summarized that up better but I guess I'm the technical type of person and like to spell it out for everyone.

Now I am just planning on enjoying my weekend. Tomorrow night I am going to a Ballet with my mom, dad, and sister. It's our mothers day present. I was in ballet as a child (only for one year but LOVED it). I have always wanted to see a real ballet and tomorrow I will! Plus I could really use a break from all this doctor stuff. So tomorrow night it will be Daddy Night for Arianna. They will have a blast as always. I still have a hard time leaving her though. It's not very often I do that.

I want to wish all you mothers a Happy Mother's Day! I plan on getting some more pictures on here soon. I'm still unpacking and been really busy with the support group. Love you all!

WARNING - This is not a nice post

I am so upset tonight and have to fill you in on the most recent news. I received the labs today and was looking over her numbers. This is what it said:

Concanavalin A (Con A) - CD4 Activation Arianna's Results - 574 (Reference range is >136)

Lymphocyte Activation

Unstimulated CD4 - 7
Phytohemaglutinin (PHA) - CD4 Activation Results - 338 (Reference range >225)

The interpretation says:

<226 Low Immune Cell Response
226-524 Moderate Immune Cell Response
>524 Strong or high level of immune Cell Response

So I was happy to see she fell withing the moderate range. I am really clueless when it comes to the immunology part of her care and feel like I am going crazy trying to figure it out. The immunologist finally calls and goes on and on about how he hates Lab Corp and so happy we finally have the results. He said Arianna was good to get the MMR. When I asked about getting out of isolation he wouldn't give me a straight answer. He just said she is a DiGeorge kid therefor she will get sick more often if we have her around other kids. He says she has DiGeorge and there is nothing we can do about that so it's up to me where I want to take her. Well that makes me feel horrible because we've been in isolation for 13 out of the 17 months she's been alive. I don't want her to get sick, and we can't really let her get sick because we still have no idea about her lung function. He told me we just need to follow up in 1 year. I asked about her IgG levels and he said those are her B-cells and they were last checked in January and they were within range, so not to worry. He reassures me that Arianna can have the MMR vaccine and is not at any more of a risk than a normal child.

Okay...so heres where it gets ugly. When I initially looked at the lab work I noticed our old immunologist name on the record, I didn't think twice and just reviewed the results, stuck the paper in her medical book and planned on cross referencing her results to the same labs that were done last year. I finally get some time and decide to go take a look. Mind you we have an appointment tomorrow to go gether MMR vaccine. I start looking more into the fact that the wrong immunologists name is on this report, which is in all caps and righ ton the top of the page. I then look at the date and see...4/18/2007. I look down and see her age: 4 months. I realize these are the reports from last year. WTF?!?!?! I checked her levels from last year and sure enough they were exactly the same. So the stupid doctor didn't realize the wrong date and the fact that a different doctors name was on the record. I'm beginning to wonder if he even looked at the labs. I am SO PISSED!! This is the doctor I tried so hard to see last year. He is supposedly the best immunologist in AZ and to be honest we are thinking about switching back to our initial immunologist. I am just so pissed that we could have potentially given Arianna the MMR tomorrow and what would of happened then? If it wasn't for me keeping records and having NO faith in this doctor (which is a horrible feeling to have) there could of been a bad outcome. I am SO pissed and plan on keeping our pediatrician appointment to discuss everything. Mind you, we are still trying to find out what is going on with her lungs. We are to see a different pulmo for a second opinion. We still have the measeles outbreak and with all the unknowns still, we are still in isolation. UGH!!! I want to scream at someone so bad. I am overwhelmed with all of this and just wish people would get this right. I am so upset that Arianna will have to have a blood draw again and I don't feel confident that they will get it done thistime. This is the 3rd time this lab has screwed up and our hospital has screwed up 1 time as well. I feel like I'm asking for some crazy test that only MY daughter needs. I know there are other DiGeorgekids out there so why is this so difficult?!?!? Please does anyonehave advice? I feel like moving to a new city just to get doctors that actually know how to do their job.

On a good note, my Nana was discharged from the hospital and at home. She is doing well but needs to have around the clock help. Thank goodness for such a great family. So I will be spending my morning with her but it will be nice to get out the house and be with my Nana.

I am so exhausted and just wish I could sleep through tomorrow and act like everything is fine.

Whats been happening

I know I've neglected to post on the blog lately so I'm going to bring you all up to speed.

Speech

This Tuesday Arianna had speech therapy and completely impressed her therapist. Arianna's new words are 'up' and 'wow.' It's so good to hear her vocalizing more. She is saying things like 'ash' for crash, 'fff' for fish, and a few more I can't think of at the moment. She is mimicking ALOT so that is great cause the next thing will be putting those sounds together!!! During our ST session I received a phone call, which leads me to my next subject....

Nana

My mom was calling to let me know my Nana (my grandma on my moms side) was having a stroke. This news was devestating and I was crying so hard the ST got her things and left. She feelt bad but we were done anyways and I couldn't think straight. The hardest part was that I couldn't go to the hospital. They took her to the ER by ambulance and immedialty got her in to CT to check for a bleed. They have a strong blood thinner they can administer ONLY if there is NO bleed and there is only a 3 hour window of giving this medication after the first signs of a stroke. So the prayers started and the waiting began. As they raced against time they got the results...no brain bleed...so they gave her the medication. My mother said the meds helped and she started to improve. Her speech was slowly coming back and her mouth function was returning. THANK GOD! They ended up giving the medication, I believe 20 minutes before the 3 hour window was up. That was a miracle from God! I was able to get down at 5:15pm to see her once they got her settled into ICU. It is always hard to see someone you love so much sitting in ICU. She looked good and from I'm told I probably would of had a hard time if I saw her earlier. I am so emotional when it comes to my family and this really was a hard thing for me to deal with. But I was happy to see my Nana give her a kiss and tell her I love her. Then I had to rush to the other hospital because it was our first support group meeting....

Support Group - Mended Little Hearts

I was late and felt horrible but after explaining what happened to my Nana everyone understood. I think our first meeting went very well. We had 6 heart families, one was our 34 year old survivor, and Alicia a friend from my moms work went to help me since my mother had to stay with my Nana. I got alot of great feedback and people are already volunteering for positions. We will have our meetings the first Tuesday of every month at 6pm at UMC. I'm trying to get a different room for our meetings so I'll let you all know the room number once I have it. I'm so excited about whats going on and I constantly meet new ways to get our local hospital involved. There is never be a family in Tucson that has to go through the CHD world alone. It's not a group I wanted to be apart of but I'm meeting some wonderful people along the way! Including all you great online friends!

Cardiology Appointment

Yesterday was Arianna's follow up with cardiology. I was nervous as always but happy to see our cardiologist. He took a listen to Arianna, asked how things were going with pulmonary, and got pretty irritated to hear we haven't even had a pulmonary visit. He works at their clinic tomorrow so he is going to make sure they know he is concerned that no one has taken the time to have a clinic visit. I told him what the first pulmonologist said about this just being trauma and that we don't need followup. He laughed and say, "Are you serious?!?!" He went on and explained that they do thousands of heart surgeries and they can't say it's just cause she had OHS and anesthesia, so that makes me feel better knowing we're getting a second opinion. Then we talked about her weight and I'm not sure if I'm right but I think she was 19 pounds 2 ozs, but that is with all her clothes, a diaper, and shoes...so probably haven't gained anything. He was pleased to see a significant weigh gain since February, but once again I don't remember what he said she weighed then. I'm just going to wait until our appt with the pediatrician tomorrow since we will get a more accurate weight. So...the PC says she sounds great, looks great, energy seems good, and the CT scan didn't show anything that they didn't already know. He said her right ventricle is generous, so enlarged but not more than it should be, and he is not concerned about her heart function at this time. He did remind me he will want to do more baseline testing around 7-8 years old but until then he is comfortable taking her off the Lasix! I am so excited...my baby is drug free! She has been on Lasix for almost a year so I'm a little nervous but have such confidence in our PC that he wouldn't take her off it he didn't feel comfortable.

Immunology

I got a call from the immunolgy nurse a few days ago telling me they have the results and the doc feels comfortable giving the MMR to Arianna. I was busy and said okay then hung up. Then a few minutes later I realized the doc told me HE would call and go over these results in detail, fax me a copy, then tell me when to schedule our next followup. I called back and told the nurse I would like to talk to him after I told her I felt like he has been blowing me off. She reassures me that isn't the case and she will have him call me. Here we are 3 days later and no return phone call. I am beginning to not like this doc. Andrea...I feel your pain about constantly having to bug people to take care of you child. So I am going to get Arianna's labs myself today and try to understand what they say. We are scheduled to see the pediatrician tomorrow for the MMR vaccine so I'll talk to her more about my issues with the immunologist and maybe our pedi will help answer some of my questions.

I think that pretty much covers everything. I need to get off here and get ready to take Arianna to her Aunt Lissa's while mommy has her own doctors appointment. It will be good for Arianna to get out today!

Here are some pictures I took last night. This is Arianna's play room off of the living room. We put our pet turtle in there and she has a little stool to stand on when she wants to see him. TOO CUTE!

My heart is broken

I have been extremely busy and tonight was able to catch up on some of my friends on Care Pages. I went to check on sweet baby Bailey Reynolds and read some really bad news. Bailey ended up having an infection that caused her heart to work extra hard over the last few days. Because of the infection, extra work load on the heart, and damage that was caused she went home with Jesus on May 1st. I am in tears and heart broken right now. I literally got sick to my stomach and honestly have a hard time sitting here writing. This is the same way I felt when Baby Kate went home with Jesus. Krista I hope you don't mind, I gave Amy (Bailey's Mom) your blog in case she needed someone to talk to. You have helped so many people get through some hard times and what your doing through Kate's Kart is an inspiration to us all.

I don't know who all reads my blog. I know there are many people who do, but don't leave messages. Just remember life is precious. It's not something we should not take for granted. Sweet Bailey just caught the nasty bug that was going around the family. (This is why I am so adamant that we don't have sick people around Arianna.) So tonight just say a prayer for Bailey's family to get through this rough time.

Thank you for reading. I needed to get this off my chest.

I love you Bailey...and you will always be in my heart!

Waiting

Still no results on the labs. I left a message for the nurse to call back and of course didn't hear anything back. I can't get mad at her, its' not her fault. I'm just so frustrated that the results have been available sine March...UGH!!! I'll keep at it tomorrow.

On another note...I got my titers for the measels, since we are having an outbreak and to no surprise I'm still immune!!! This is good news because we have our first support group meeting tomorrow at the hospital...yes the same hospital that started the outbreak. We're not even on the same ward or even near the ER so I'm not too worried. I'm just so excited to be getting Mended Little Hearts going here in Tucson. I got a call from a nurse at one of the local pediatric cardiologists office today and she will be coming along with a 34 year old CHD survivor. I'll let you all know how it goes.

I'm still trying to put together a slidshow from the Heart Walk. My mom got some great pictures and I can't wait to show them off!

Finally some good news

So I called Lab Corp this morning and spoke with the manager. She said she would look into it and call the outside lab that the blood was suppose to be sent to and call me back. About 2 hours later I get a call and she tells me they have the results!?!?! I was SO happy but SO upset at the same time. I asked why they told the nurse they had lost the blood and she had no idea. She even has a confirmation that the blood was received at the outside lab. They were suppose to fax the results to the immunolgist today.

So I get on the phone with the nurse and tell her the story. Man, was she pissed! We spent 5 minutes going over the story they told her and what they told me. She is going to call and talk to the manager I spoke with and make sure something happens. I love this nurse! I then told her to fax me the results when she gets them so I can have a copy. The immunologist is out of the office until Tuesday but she is going to email him and let him know when the results come in....so hopefully I'll get a call by Monday.

So I have been waiting for the pediatrician to call and finally she just did. She was calling to tell me the bad news about needing more blood but I was able to give her the good news. She was just as upset but happy to know we don't have to poke Arianna again. She commented that she spoke with our occupational therapist (Janet) who is also trying to help figure all of this out and Janet informed her that I had already spoke with the pulmonologist. I told her (ped) that I was not happy with what the pulmonologist said. Don't get me wrong I'm glad they didn't find anything wrong with Arianna but the fact that she is satting too low while sleeping and she (pulmo) doesn't see a problem with that, just irritates me. The pediatrician tried so hard not to talk bad about the pulmonologist but said she wants me to see a different pulmonologist. She asked who I wanted to see and I told her Dr. Brown, who was the pulmo we saw when Arianna had her surgery. She will call him personally and schedule a meeting for all 3 of us to meet. THANK GOD! I honestly LOVE our new pedi!! I'm not sure when that meeting will be since it's hard to schedule 2 busy docs to be in one place at a specific time but our ped will make it happen.

So that is where we are at right now and I'm happy to have a pedi that actually cares. I hope I said everything I wanted to and hope it all makes sense. I have to run to and deliver more shirts to family so I better go. I'll keep you updated as I know more. I am happy that we will be seeing the cardiologist tomorrow and get his take on all of this.

More bloodwork needed...

So I just got off the phone with the immunology nurse and this time they didn't lose the blood but they forgot to get a CBC drawn. I'm not sure how all this works and the immunologist is out of town so I'll have to wait to ask questions until he gets back. UGH!! I am thankful for the nurse who is trying to help me get things figured out. This still doesn't take away the fact that my baby will need to have ANOTHER blood draw. I am literally in tears over this. I can't stand that she has to have repeat blood draws because they keep messing up. :( I'm waiting to hear back from our pediatrician because she is the one who will coordinate with the labs on which tubes and such need to be drawn.

I also put a call into Lab Corp and spoke with the manager about this and she is going to look into it herself and get back with me. I really feel like no one cares and that is an awful feeling.

Oh I almost forgot....the nurse told me the immunologist said if I wanted to give Arianna the MMR vaccine, it was up to me but there is a risk. CAN YOU BELIEVE THIS GUY!!! Yeah, like I'll take that kind of risk. I have seriously had it with these doctors. I told this nurse that was ridiculous for him to say that and NO I won't take that kind of risk. I will wait another 2 weeks in hope that they get it right this time.

On a good note...I just got the shirts delivered for our Heart Walk tomorrow. So if you in Tucson and want to join us just meet me at the Tucson Mall at 7:45am (I know it's really early, but be glad you don't have to be there at 7am like me) You can park by American Home Furniture and you will see the tent from there. If you have any problems finding the place just give me a call at 520-406-5655. I will be speaking sometime around 7:30am and I'm so exciting to be taking Arianna on stage with me!!! I will post with pictures after we get home.

Pulmonary update

I can finally tell you all about my talk with the pulmonologist. I got a call on Monday and after making her feel awful for not calling sooner she told me exactly what the bronchoscopy results were. I won't go into detail but basically everyone was within normal range. The only thing is her eosinopils were at 4%, which is good because normal is <5% but she said almost ALL kids come back with a 0%. So basically this means she is more prone to developing allergies and/or asthma. She is not giving her a diagnosis but it's something to be aware of if we notice more symptoms. This also concurns with the previous lab works that was done that showed a high number of IgE's and eosinphils. Arianna is not aspirating and does not have sequestration!!! THANK GOD!! Since we haven't had a clinic visit I had to give her a full history over the phone to bring this doc up to speed. She explained that Arianna's saturations should never be below 95%, whether she is awake or asleep. She agreed with our pediatrician and said if she is below 92% while awake or below 87% while sleeping then we need to put her on oxygen, or if we notice she is having a difficult time breathing. This was good to finally have a number to go off of. This being said she can't explain why she is sating so low while sleeping. She said the CT doesn't give us a good enough picture but she is chalking it up to trauma. Arianna has been though open-heart surgery and had multiple anesthesia's done for tests that she thinks it's possible scaring and trauma. This was sad to hear but at least it isn't something worse. I asked what, if anything, needed to be done and she said just time. Over time she will develope good lung tissue which should replace the bad. The biggest thing is that Arianna not get any colds. This will set her recovery back even farther.

So as you all know we are staying just as precautious. If you are sick, or even have a sniffle or cough, DON'T COME OVER!! I can't stress this enough. I don't know how many times I could get upset when people think it's nothing and still proceed to come to my house and act like everything is okay. I want you to know it's not okay. Please respect my wishes and just wait until you are symptom free. We love are daughter and are trying to do the best to keep her healthy.

With all of this being said, we still don't have her immunology studies so have no idea how well her immune system is functioning. NO ONE will talk to me from that office so I'm beginning to think they have lost her blood again. I am furious and making a call to the lab today. Until we get these results we are not taking Arianna out in public but are going to try and open up a little more and start seeing more family. We will however be taking he to the Heart Walk on Saturday because I will be speaking and they have asked if Arianna can attend. I will be very protective of her that day so if you go and I don' t let you hold her please don't take offense.

I think that covers everything but I'm sure I'll think of something else later. I have some errands to run so I better go. I still haven't had a chance to check on all my heart babies but I will soon!