Quick update

I just typed a quick message and poof off it went into cyberspace. UGH!!!

I just wanted you to know we are all moved in and living out of boxes. I hope everyone is doing well. I haven't had the chance to check on my heart babies...so you all better be behaving yourself!!! I'll update more tomorrow. I did talk to the pulmonologist finally but don't have the energy to write about it tonight.

Well better go cause I'm nodding off as I'm typing.

Done Packing!!

We are finally done packing! Man, it was a long day but I'm really excited about moving into our new house. I have last minute stuff to pack in the morning then we're loading up the truck and heading over at 2pm for our walk through of the new house. We're suppose to have internet back up on Tuesday if all goes well. I just wanted to jump on here and let you all know tomorrow is moving day.

I'm going to start making phone calls again in the morning to see if I can get ahold of the pulmonologist and immunologist. I'm going to be PISSED if her labs were lost again. I'll update again when we get our internet back up.

Take Care!!!

Kate's Kart

When you have a minute please check out Kate's Kart. This is an organization started by the Layman's in honor of their daughter Kate. Kate was just 18 months old when she was called to heaven. She was born with the same heart defect and chromosone deletion as Arianna. Kate's Kart will be handing out free books to children while in the hospital.

Make an on-line slideshow at www.OneTrueMedia.com

SOME MOTHERS GET BABIES WITH SOMETHING MORE...

Someone shared this with me today and I had to post it on here.

____________________________________________________________________

SOME MOTHERS GET BABIES WITH SOMETHING MORE...

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Lori Borgman is a newspaper columnist and author. You can find her at: www.loriborgman. com

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Talk with pediatrician

I spoke with the pediatrician today and was able to express my frustrations even more. I still haven't heard back from the pulmonologist or immunologist . She sent the email to both of them today in hopes to hear something soon.

I have found this great support system on www.parent-2-parent.com and the pulmonary disorder group has really helped me understand these results a little bit. Arianna's bronchoscopy lavage showed some findings of lipod-laden machrophages, which are signs of aspirations. After talking with the pediatrician she confirmed that this finding and told me after they reviewed her CT again the sequestration is ruled out. THANK GOD!! This still isn't good but at least we're not looking at removing parts of her lungs. I won't know the next step until I talk to the pulmo but at least our pediatrician is on top of things.

I have been on such a roller coaster of emotions and feeling very exhausted. I'm still nervous because I asked our pediatrician if aspiration can damage the lungs and she said yes. I asked what the treatment option is and she mentioned a trach (but she feels this isn't the case for Arianna) and the Nissen fundoplication. I didn't ask anything more because this isn't her area of expertise. I'll worry about the treatment opnion after we get the final diagnosis.

Thank you all for your continued support as we have been on this road for a few months. I'm just so happy to finally be getting this figured out. When I get more news I'll let you all know. In the meantime I need to really get to packing this house cause we're moving on Monday!!!

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!

Finally on to something

I'm going to warn you all, I'm in a very upsetting mood. This morning I took Arianna for her check up with the pediatrician. When we got there they weighed her and she was at 19 lbs 1 oz with all her clothes and diaper on...but at least she isn't loosing any weight! Then we go to the room to wait and already I can feel my blood boiling cause I didn't want to deal with another clueless doctor, then all of a sudden OUR pediatrician walked! I was SO releived and a little unprepared. I told her I thought Arianna might have an ear infection, which she looked and she doesn't..THANK GOD! Just a little bit of fluid but not enough to even treat. Then I told her we just had the bronch and CT's done and I had some questions. This is where it all begins...


I explained the entire story I posted about in yesterdays post and she looked in the chart to see if Arianna has ever been diagnosed with pneumonia. I knew she wouldnt find anything and she seemed a little concerned at this point. She didnt' understand why no one has called me back if they thought she had pneumonia in multiple areas of her lungs. I told her that is exactly what I was wondering. She walked out and went to go see if she could pull up the CT scan herself. A few minutes later she asked me to go in her office and she proceeded to show me the CT scan of Arianna's lungs. You can clearly see the upper lobes are non-affected and look normal. As you get to the mid-lower lobes you start to see white patches across the lungs, which get worse as you get lower. She explained this is all suppose to be black but in Arianna's case it is not. She told me she thinks she has pulmonary sequestration. I have never heard of this before so I provided a link that give you some information about it. The pediatrician has dealt with this issue before and told me the only treatment option is to removed the affected lung tissue. She isn't sure if they will want to do a biopsy or not. She told me this diagnosis isn't set in stone that she will contact the pulmo and discuss this together then give me a call.

So I was at my cardiology appointment and received a call back from the pediatrician. She said she spoke with the pulmonologist and asked if she reviewed the CT scan yet. Of course she hadn't so they sat on the phone and reviewed it over the phone together. The pulmo said SOME of the cloudiness can be due to the bronchoscopy lavage that was done prior but it does not account for all of it. The pulmo thinks it is micro aspiration. UGH...hello, we already rulled that out. The pediatrician wasn't completely sure if we had the swallow study yet so told the pulmo that she would look in the records and get back to her. That is when the pediatrician called me. I explained to her that Arianna had a complete GI workup while in the hospital and ruled out aspiration as a source of the problem. That was why the initial pulmo wanted the CT and bronch done. I asked if we needed to get Arianna's GI docter involved at this time and she said no not yet. I'm beginning to wonder if they will want to do the pH probe to check her acid levels. We'll just have to wait and see.

The other thing the pulmonologist mentioned was that the bronch showed high levels of eosinophils in her lungs. This means she has allergies, but we don't know what her allergies are to. The pulmo, however, wants to put her back on the Flovent inhaler to help with inflammation for the meantime.


So after discussing all of this with the pediatrician I completely forgot to mention to her about the CT scan saying she has normal thymic tissue. We should be getting her immunology results this week so it will be interesting to see those results as well. She took notes of everything we talked about and will be composing an email to both the pulmo and immunologist to see what the next steps will be. She is being so kind and cc'ing me on that email. I told her I am completly overwhelmed trying to get all Arianna's doctors together about her issues and could really use some help with the communication. She is taking into her hands now (which should of been done a long time ago) and getting things going in the right direction.

I did ask about whether we need to keep Arianna in isolation and she said yes. The first and biggest concern is the measeles outbreak and there have been 10 reported cases. Because Arianan cannot be immunized this could be a deadly disease if Arianna gets it. Also the fact that we don't know how serious this lung issue is, we can't afford to have her get sick. So my hopes for being out of isolation soon were just crushed. It's okay...cause the most important thing is my daughters health. I'm just so thankful I don't have any other kids and can focus fully on Arianna's health right now.

One other thing I wanted to tell you all was...THANK YOU...without you guys I would feel totally alone. If you have ever been in isolation you know how lonely it can be. You spend all your days at home with only a few outting to get necessary items for the house and occasional doctor appointments and tests. I am so grateful for the internet, which allows me to stay connected with such wonderful friends like you all. I know you have alot going on in your day but you take the time to stop by and check up on us. You leave messages to let us know you care. You will never understand how much that helps me get through my days. So once again...THANK YOU!!

Still no results...UGH!!

I haven't wanted to post lately cause I've been in a little upset. I would sit down and start writing and realize I am being so negative so I just delete the message and walk away. Now that I'm not as angry I'll let you guys know whats been going on.

As you can tell from the title of this post, we still don't have the results from the bronchoscopy and CT's. I called the pulmonologists office last Wednesday to see if the results were in. I got no call so I called back on Thursday. I told the nurse (who is really nice) that I wanted to talk with someone about the test results.

Okay....here's the thing, we have yet to have a pulmonary consult with any of these docs. The pulmonologist that we saw when Arianna was in the hospital is the one that told us to have these tests done when she recovered. If you don't recall we had the pulmo consult scheduled for April 8th, which I complained about because it was 2 months after Arianna was discharged from the hospital and I thought that was ridiculous to have to wait that long to see someone for a consult. So awhile back I called and asked to talk with Dr. Brown, who is a diferent pulmonologist, but the one we were going to do our follow up with. I have yet to speak with this doctor which makes me a little frustrated. The nurses were the ones who spoke with him and asked if we should schedule the bronch and CT before our appt on April 8th. Dr. Brown agreed and went ahead and had us scheduled for April 8th, which was the day of our initial appointment. We had to canel that appointment but they said it wouldn't matter cause when we see Dr. Brown the day of her test he will make sure to schedule us for a follow up.

Are you still with me? :)

So...we get to the hospital for her tests and there was a different pulmo there to do her bronch, but we were happy cause she is married to our immunologist and was able to coordinate Arianna's labs that were recently lost. Plus I felt better having a woman perform this test anyways. She talked to us after the broch and tells us what she saw and says she will call me that Friday or the beginning of the following week. I asked if I needed to schedule a follow up and she said no, that she needed to see what the bronch results were to determine the next step. So Wednesday rolls around and nothing. So I call and leave a message for someone to call back. Thursday comes and still nothing so I call and finally get Addy on the phone, who is a wonderful nurse by the way. (We've only talked on the phone but she is great!) I explain to her that I haven't heard back from anyone and we are literally keeping Arianna isolated because we don't want to expose her to anything until we get the results. It's the logical thing to do...right?!? We've kept her isolated for these tests why would we stop until we find out the results. I tell her that I am the kind of mom that has ALL my daughters records and since I didn't hear back from the pulmo I went ahead and got the results myself. That normally wakes people up a bit. She explained that Dr. Daines, the pulmo who did the bronch, was out till Monday but Dr. Brown (the doctor we were originally suppose to see) was in and would give the message to him. I told her I was a little confused because on the CT scan it clearly states "normal thymic tissue seen" WHAT!!! She has a thymus! Dr. Copeland, Arianna's surgeon, clearly stated to us that he did not see any thymus went they opened her chest, which confirmed the DiGeorge diagnosis. I do recall our initially immunologist stating you can have thymic tissue in other areas of the body but they aren't as large as the actual organ and don't produce as many T-cells. But in the CT scan it clearly states the thymic tissue is in the anterior mediastinum, which means it would be right in front of her heart...HELLO - don't you think the surgeon would have seen this?!?! I don't know, so my mind is swirling and I'm beginning to wonder what is really going on inside my daughters little body. I'll be really curious to get the immunolgy results back this week.

And the second thing that just ticks me off is the medical records states she has a history of recurrent pneumonias...WHAT?!?! She has NEVER been diagnosed with pneumonia. So who is saying she has. I have a feeling it's the pulmonoglist, who we've never seen, because she has never had this on any medical record before. Well except for the initialy ER visit when she was in respiratory distress but that changed after the pulmo saw her. I may not be a doctor but I know that our medical records are vital in our medical treatment. If someone writes a wrong diagnosis, like the pneumonia in Arianna's case, then later she has more respiratory problems, the docs will pull her medical records and see that she had pneumonia before and probably assume this is whats going on. What if there is something else going on inside her little lungs and because one idiot decided to say the wrong thing, it gets overlooked. I explained to the nurse I left the message with, that I just want a doctor to take care of my daughter and make sure she is okay. She didn't have these test done for no reason.

See...now you know why I haven't posted in the past few days. I do feel better getting that out of my head though. For those that read that and have absolutely no idea what I meant, I'm sorry.

Now I think Arianna might have an ear infection so we're going in tomorrow to the pediatrician. She is pulling at her ear and been very irritable. If I don't keep up the motrin she is miserable. You think I would be happy to be seeing our ped but we actually will be seeing someone else. Our ped is only there on Wednesdays and Fridays, another reason why I really want to switch offices. I think I might look into that after we move.

Then I have my own cardiology appointment tomorrow afternoon. It's nothing major but I have this wonderful friend who told me I have to get it checked out because if I don't go, she'll come pick me up and make me go. Gotta love those friends that actually care! :)

Wow...just realized I typed quit a bit. For those that made it through my mess of thoughts...I aplaud you! LOL! Hopefully I will have some good news to share with you all tomorrow! Wishful thinking....

Outside please!

This is what Arianna signs to me at least 15 times a day. She LOVES being outside. She even tried to open the door herself. I can't believe that she didn't even take a nap today. She was up at 8am and went to bed at 7:45pm! That is a first...and I'm hoping a last.


Well, here are some cute pictures I took of her today.

Yes...that is a slim jim she is eating. I was totally shocked myself :)

If anyone has some ideas on how to get her to sleep by herself, please let me know. I don't know if you remember a few weeks back I moved her crib right next to our bed...well I'm beginning to think that wasn't such a good idea. She will not stay asleep by herself for the life of me. It's not like she has ever really sleep well unless she is being held or if someone is sleeping in bed with her, but this is getting a little ridiculous. I can't get anything done when she goes to bed cause she is constantly up crying until one of us go to bed with her. I forgot to mention that we got approved for the house...yipee! So we will be moving in 2 weeks. I'm so excited because Arianna can finally have her own room...but what good does that do if she can't even sleep in her crib by herself. UGH! Help someone!!!

Party time!

We actually got out of the house today and enjoyed a nice BBQ at my sisters. Today is my brother-in-laws birthday so it was nice to spend some time with the family. Arianna was such a nut today just running around the house. There was a few moments today that I felt overwhelmed with joy as I watched Arianna play.

I know I sounded kind of down in my last post but I'm feeling much better. I think today is just what I needed. I even made a point yesterday to just sit and watch a movie while Arianna took her afternoon nap. Sometimes I think I get so caught up in life I forget to just relax.

I was able to get some pictures today and wanted to share them with you all. I have to tell you before you watch this little montage that Arianna and her uncle Dougie have not spent alot of time together, so I was really blessed when I saw them together today.

Make photo slide shows at www.OneTrueMedia.com

Blue Spell

Okay...so let me start with the past few nights. Since Arianna had her bronchoscopy on Tuesday I've decided to monitor her sats more closely, since the hospital pulse ox said she was at 97 while sleeping. (and coming off anesthesia to add to that). I checked her sats during meal times and she has been at 95-97, which is great! We haven't seen numbers like that since November.

Then on Wednesday night she was satting at 90 while sleeping, dipping into the 80's 3-4 times. I had the oxygen ready to put on her but I decided I would hold off and she what she did. By the time I went to bed at midnight she went 30 minutes without dipping into the 80's. Since I still don't have a number that they (doctors) what her to stay at, I've decided I will only put on the oxygen if she goes under 90. Hopefully the pulmonologist will give me a more concreate number to start keeping her at. So anyways...then last night she was sleeping and satting between 90-94, depending on her position. During a 2 hour period she desatted as low as 86, about 8 times, but quickly rebounded back to 90. I almost put the oxygen on last night but since she kept rebounding I figured I wouldn't. (Wouldn't it be nice if someone would just tell me when I need to put the O2 on her, instead of me just trying to figure it out myself)

She wakes up fine this morning, a little earlier than usual, so I give her a bottle and she drinks 4 ounces and goes back to bed for another hour. We wake up like normal and begin our routine. She still isn't eating very well but I decide to offer her french toast with syrup, and to my surprise she ate the syrup and maybe two bites of french toast. (This is a huge step for her) Then at noon she was ready for a nap, which was a little earlier than normal, but who's complaining! I plugged her up to the pulse ox and she was satting between 92-94. She wakes up from her 2 1/2 hour nap, which I don't really understand why she took such a long nap cause she was only up for 4 hours, but her pulse ox was okay so I didn't think twice about it.

Okay, so she wakes from her nap, eats a HUGE lunch and begins to run around the house playing. I go in my room to get dressed, cause we just got done taking a shower and there she is standing next to me and I notice her lips are blue. Not just slightly blue....but blue. I look at her fingers and they're blue too! I quickly try to plug her up to the pulse ox to get a reading, which is almost impossible to do when she is awake, and she it was a bad reading at 92, so I know she was at least above that. This lasted about 1 minute then her color came back. So here I am thinking.....WHAT is that all about? WHY is thing happening? And all the feelings of why I HATE being a heart mom started coming to mind. I hate the fact that my daughter was born with a CHD. I hate the fact that I know what to medically look for when this happens. I hate the fact that NO ONE can tell me whats wrong with her...and is there really anything wrong with her. I may not be making sense right now, but this is all that is going through my head and I feel better when I get it out.

I still haven't heard from the pulmo or cardiologist about the CT's and bronch results but I'll be mentioning this blue spell to them when we talk next week. I'm not about to take her into the ER since we are having a measles outbreak going on and Arianna cannot be vaccinated against that due to her immune system. So I'll just keep an extra eye on her...not like I don't already.


On another note...please keep our heart buddy Elijah in your prayers. He has been giving his mommy and daddy quite the scare lately. He is scheduled for his next open-heart surgery next week.

**I don't have time to proof this so hopefully it all makes sense.**

Great article for families struggling with medical exspenses

Greetings!

This information was just released.


New Grants Available for Families Struggling with Child Health-Related Expenses


* UnitedHealthcare Children's Foundation accepting applicants for 2008 grant program
* Families can apply for assistance grants online at www.uhccf.org

MINNEAPOLIS--(BUSINESS WIRE)--UnitedHealthcare Children's Foundation (UHCCF) announced that new grants are available to help children who need critical health care treatment, services or equipment not covered or not fully covered by their parents' health benefit plans.

UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics and eyeglasses.

Parents and legal guardians may apply for grants of up to $5,000 for child medical services and equipment by completing an online application at www.uhccf.org. Tax-deductible donations can also be made online.

To be eligible for grants, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States and be covered by a commercial health benefit plan.

"We are taking action to improve access to health care in America and are dedicated to helping more children and families this year and beyond," said Matt Peterson, UHCCF president. "We encourage families who need assistance paying for their child's medical needs to visit the UnitedHealthcare Children's Foundation Web site and apply today."

"My son Bryson was born with Down syndrome and a heart defect, which would require open heart surgery," said Jane Baker. "With the stress of knowing that our precious son was going to need major surgery, along came the worry of medical bills. Our caseworker told us about the UnitedHealthcare Children's Foundation. We were given a generous grant to help with our medical expenses. What a blessing UnitedHealthcare Children's Foundation has been for us. I am so thankful that there are people out there willing to help and give in times of need."

The foundation aims to help more children by increasing awareness of the foundation through fund-raising events, partnerships, newspaper and Web advertising, and a revamped multimedia Web site, www.uhccf.org.

About UnitedHealthcare Children's Foundation

The UnitedHealthcare Children's Foundation is a nonprofit 501(c)(3) organization that strives to enhance either the clinical condition or quality of life of children who have health care needs not fully covered by commercial health insurance. The Foundation provides grants of up to $5,000 for costs associated with medical services and equipment. Foundation funding is provided by contributions from employees of UnitedHealth Group as well as individuals and corporations. While UHCCF receives contributions from UnitedHealth Group and its employees, individual and corporate donations to help provide assistance are deeply appreciated. To donate or learn more, please visit www.uhccf.org.

Germaphobic

Anyone that really knows me, knows I'm a germaphobic. After watching this video I thought I would have to share it with you all. I think I'll be buying some gloves for my laundry room...you'll see what I'm talking about. YUCK!!

We're Home!

I can't believe it....we're already home! We've been home for almost 2 hours. Everything went really well today. We got to the hospital around 12:15pm and they took us back about 1pm. We spent 20 minutes just talking to the anesthesiologist, pulmonologist, and nurses. They were trying to coordinate the blood draw at the same time so that is what took the longest. Since we already know this is a special test, we were just hoping the hospital would get it right so we wouldn't have to deal with Lab Corp again. It was kind of cool because the pulmonologist is married to our immunologist. The pulmo got on the phone with her husband and made sure were were doing the right tests and see if he could come pick up the blood to personally deliver it to the courier by 2pm. They ended up getting the wrong vile and we almost missed the dead line for the courier....but thankfully they drew Arianna's blood again while she was having the CT done. So thank goodness...no Lab Corp for awhile!

I had the chance to explain to the anesthesiologist about Arianna's last experience with Versed. He was very hesitant about using it and decided to just use the gas instead. I told him we had the CT's to follow so he went down to the CT lab and explained the situation with the radiologists. I asked him about intubation and he said as long as she stays asleep and her numbers look good then he won't intubate. I was SO happy to hear this. He went on to explain that he is a pediatrician as well and is very familiar with DiGeorge Syndrome. I can't tell you what a huge relief that was to hear.

I felt very confident in the group of people that were going to care for Arianna. I have to say I was less nervous this time than any other time we have taken Arianna in for tests. I know that God placed the right people in our path today so we could have peace about this procedure. Don't every underestimate the power of prayer. This morning I was praying for peace and we were all definitely at peace with everything.

The pulmonologist came out after the bronchoscopy and explained what she saw: normal airways; normal secretions; some lumpy bumpies (yes...that is what she said) in her right (I think..now I'm not sure if it was the right) lung, which we don't know what that is from. One thing she found very interesting was that her nasal passage down to her throat were red and irritated. Arianna doesn't have a runny nose or cough so this is a little confusing. She said this is sometimes a sign of aspiration but Arianna has already had a full GI workup which didn't show aspiration. So at this point were waiting for the samples she took and for the CT's to be dictated. I should hear something either the end of this week or beginning of next week.

About 20 minutes later they called us back to see Arianna and she was still sleeping. We talked to the anesthesiologist and they said they didn't have to intubate her and instead of using Versed they used Propofal. This is a shorter lasting medication and has less side effects. She woke up really groggy and they discharged us right away. So far she has done really well. She kept her juice and milk down so I gave her a bowl of spaghetti. She is so hungry and already asking for more food so I'm cooking sausage. She is finally able to walk without falling down every few steps. We're just planning on hanging out and enjoying our evening together as a family! It's Tueday night so we'll be watching The Biggest Loser...the only show I look forward to watching!


Here are some once we got home. I forgot to take my camera to the hospital so this is all I could get. She was SO buzzed in the first picture.

Re-Growing Organs

Medicine's Cutting Edge: Re-Growing Organs

Check out this article! It just amazes me at what these scientists can do. I find this very interesting since this is something that can benefit children with CHD's.

Synagis Approved

I just got the call from our pediatricians office and they were able to get the Synagis (RSV) shots approved. THANK GOD! I was so worried Arianna wouldn't be protected before going in tomorrow. So, I let her take an hour nap and now I have to wake her up to go get shots. I hate making her get shots, but it's for her own good. Well better run...

Good Appointment

The appointment with the neurosurgeon went really good. He reviewed Arianna's MRI and said everything looked good. He evaluated her while she was walking around the room and even commented on how well her head development looked. (For those who don't know, last year we thought she had craniosynostosis and met with the same neurosurgeon about this.) He said we only need to come back if we have further issues arise. I walked out of there feeling overwhelmed with joy! I just love hearing good reports!

I have a call into the pediatricians office about her RSV shots. They are still waiting for an approval from the insurance company. UGH!! We need this shot TODAY and noone seems to care. I think I'll call the office again when I get done typing. I have to call the pre-anestesia clinic after 2pm to get the instructions for tomorrows CT and bronchoscopy. I am really dreading doing this but I will be so happy to have this behind us. Oh yeah...they checked Arianna's pulse ox in the hospital today and she was at 95%! We are finally seeing some good numbers during the day but she still drops to about 89-92 when sleeping. Who knows...maybe that's just the way she is and there is nothing wrong with it. She is starting to pick up on her eating which is a huge relief. She even took a bit of my english muffin this morning!

I'll let you all know how things go tomorrow when I get the chance. Last time she had Versed it took a toll on her body and she was out for awhile. I'm sure it will be a long afternoon at the hospital so I'll update tomorrow evening.

How I like to spend my Sundays

Sometimes I like to take Arianna to the airfield where Robert flys his RC planes. Arianna LOVES to go out there. Check out the pictures from today.

I just love those two!

Check her out...working on Daddy's plane!

She was signing "airplane".

Okay Daddy, it's ready for you to fly!

After the airfield we had to head over to drop off our application for a new house. No, we're not buying, but we are trying to get out of our current house. We have completely out grown this house in the 12 months we've been here. It's kind of hard to sit here and think back to what was happening this time last year. I was a complete wreck as we approached Arianna's surgery date. I tried so hard to be strong for her and didn't want her to see me cry. I would do pretty good then I would go to bed and cry myself to sleep just thinking about what my daughter would have to go through in the weeks to come. I am SO happy to be on the other side of surgery. Today I sit here staring at my beautiful daughter and thank God for all that he has done for us. I have such a wonderful life and wonderful family. I know every day is a blessing from God. I may not know what the future holds but I know someone who does and I rather leave it in His hands!

So all week I've really been wanting to go out for ice cream. For those of you that don't know, I've been doing Weight Watchers to get back to my pre-pregnancy weight. We'll I've lost 32 pounds and very excited about that. I look at food in a whole new way. I want to set a good example for my family and provide them with healthy, nutritious meals. So.....when I say, "Hey, lets go to Baskin-Robbins!" You better believe I get some strange looks. I know we need to treat ourselves from time to time and that is exactly what we did tonight. My mom has given Arianna ice cream before and she seemed to like it so I thought this would be a good treat. We got her chocolate chip ice cream and you can tell from the next picture that she liked it! I think she ate 1 tablespoon and I was SO excited! Anything to get my baby to put some weight on...right!

I didn't have my camera but thanks to my camera phone we were able to get a picture of Arianna enjoying some ice cream! She was SO tired. She only had a 30 minute nap today so she was ready to pass out while eating her ice cream. She was so out of it that she ended up falling asleep on the way home.

Tomorrow we are going to see the neurosurgeon to have him review Arianna's MRI that was done of her brain and spine. Our pediatrician told us he is qualified enough to review her MRI and if he feels confident that nothing is wrong than I don't need to go any further. I was really hoping to get a pediatric neurosurgeon to read this but we don't have one here in Tucson. I've sent a letter to a pediatric neurosurgeon in Phoenix, but yet to hear back from him. I have one more option, thanks to an online support group, so I'll try that one next. I'm not looking forward to seeing this guy tomorrow. He has a really horrible bedside manner but everyone says he is an excellent surgeon. Guess I don't have a choice in the matter so I'll just stick it out and try not to let him get to me too much. I'll let you all know how that appointment goes when I get home.

Are you serious?!?!

Okay, I know hate is a strong word but I really do hate Lab Corp. I talked to the immunology nurse again today and she spoke with the manager at Lab Corp who said Arianna's labs are no where to be found. How do you draw 3 viles of blood from a child, or anyone for that matter, and LOSE the viles. If you can't tell...I am pissed!!! I told her I was sick of Lab Corp and asked if we could go somewhere else. I talked to my insurance company and they said all I need is a prior authorization to have them drawn at the hospital. So the wonderful immunology nurse is putting that together and we're hoping this means we can go to the hospital from now on. I'm hoping we can have this approved before next Tuesday since Arianna will be there for her CT's and scope. It's just not right having to subject a child to numberous blood draws. UGH!