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.