GI appointment

Just a cute snap shot from this afternoon. I LOVE her new outfit!

We had a good meeting with the GI doctor today. He was very pleased with Arianna’s growth. She weighed 18 pounds 6 ozs, which is a 2 oz increase since the nutritionist a few weeks ago. The GI doctor last saw Arianna in Nov and since then she has had almost a 2 pound increase and significant growth in her length. He reviewed the results of the upper GI and swallow study and was happy to hear these were negative. He said she is doing well for her age and at this point we will only need to do followup. We will go back in 3 months just to make sure she is progressing nicely. It was so nice of Janet, our OT, to accompany us to this visit. Even though it was short and sweet, just knowing she cares that much to go means the world to me.

**Forgot to tell you…the doctor checked her umbilical hernia and said that she for sure won’t need surgery. It should close up completely without any intervention needed. Yeah..we are so excited!**

Pony Ride

Arianna got to ride a pony at the clinic today. They are there a lot but never before has she rode one. She did so good, sat up all by herself with only minimal balance from us. I didn’t have my camera but thanks again to my camera phone I was able to capture the moment.

Cardiolgy and peds appointment

The cardiology appointment went well. We reviewed everything that's happed over the past few weeks and he reassured me that her low saturations had nothing to do with her heart. He didn't feel we needed an echo since once was done at the hospital. Then after listening to her heart and lungs we were told to come back in 2 months. I was really bummed that they didn't do an echo but I guess I need to learn how to relax and enjoy the fact that her heart really is okay.

Then we went upstairs and met with our new pediatrician. Arianna's fever has stayed away but the rash has gotten worse and spread to her arms and legs. After the doc took one look at her she confirmed this is roseola and told us there is nothing we can do and it should go away in a few days. Who knows how she got it but once you have it you can't get it again.

We had a resident who was doing all the leg work for the doc and told us we were okay to leave. I told him I was here for a consult, not just a sick child visit. The new doc came in and I told her I wanted to start seeing her on a regular basis and she said that was fine. I proceeded to explain how I was previously treated and did not want the same treatment. I told her I need a pediatrician who will listen to me and not push my concerns aside. I went on to tell her about our previous hospital stay and the frustrations with not knowing what had caused Arianna's low sats and respiratory distress and she seemed to understand. I told her we still haven't seen the pulmonologist and there has been no one following up on this. She was very understanding and told me she was going to email both the pulmonologist we saw in the hospital and the one we're scheduled to see and find out what they think should be done next. I told her I needed to feel comfortable with our pediatrician and know that I can call with any questions without getting the brush off. Even though our time was cut short I fell like she really wants to help and be an active role in Arianna's care. She said she will read through Arianna's chart about the recent hospital stay and get up to speed with what has been going on. Finally...I think we got the right pediatrician. This is going on number 3.

They wanted to give Arianna 2 shots but I told them no because she always gets a fever for 48 hours and since she is already fighting off a virus I felt it was best to hold off. We will go in at 18 months for another check and she can get her shots then.

Tomorrow is our appointment with GI, which I'm sure won't be much of anything. Our OT is planning on being there which is something she likes to do with her clients. (She's a doll!) I know he'll tell me she is small and he would like to see her grow but we're already doing what we can to get her to eat. I'm content with her being small as long as she isn't losing weight.

For some reason I am extremly exhausted and could really use a nap but Arianna is full of energy without any signs of slowing down. She is outside with Daddy right now which is the only way I could get a chance to update. I hear her crying so I better go get her....

We might know whats wrong

Okay…we think Arianna has roseola, which would explain the high fevers and sudden rash once the fever broke. (Thanks to Mina and Grams) I never heard of it before and after researching I found out its pretty common with kids under 2 years of age. We’ll talk to the ped tomorrow and see what she thinks as well. There is no treatment just the Tylenol/Motrin for the fever. Some people with compromised immune systems need to be on antibiotics so we’ll just double check on that, but since her immunology studies came back normal I doubt she’ll need to be on anything.

Tonight was so much better than the past 3 nights. She was more active and less fussy…notice I just said less fussy. She even went to bed earlier than midnight…YEAH! We have our appointment with the cardiologist at 8:15am then the peds at 10:15. Its so nice that they are in the same building.

Orthopedic Appointment

NO FEVER! We have been fever free all morning, although I gave her some Tylenol anyways to keep it at bay. However, she did wake up with little red bumps all over her torso, chest, neck, and back. She even slept in her pajama gown so it's not like she was sweating last night. It got a little worse while we were at the orthopedic's office so I put a call into the peds, since they are right down the road, and asked if I could just bring her in but they said they only had a 1:30 appt. Unfortunatly both my cars aren't running so my mom gave us a ride to our appt this morning so I told them to forget about it and I'll just see the new ped tomorrow. UGH! Mina I wish you could be our doctor!

So the ortho was SO nice. He asked why we were there and I began telling him about her sacral dimple, DiGeorge Syndrome, and the MRI results. He looked at her and said, "Wow, I would have never thought she had DiGeorge Syndrome." He has 5 other patients under the age of 6 that have DiGeorge and he say by far Arianna was the best DiGeorge kid he knows. He said, "She must be slightly affected?", I told him yeah if you consider a heart defect being slightly affected. But we all know that with DiGeorge there are SO many anomalies that your child could have so I have to be thankful that Arianna is doing as well as she is. He commented on how amazed he was that she was already walking considering she had open-heart surgery and DiGeorge. He was glad we already had the MRI done, because he would have ordered one if we didn't already have one. He said even though the MRI looked good, surprisingly x-rays will give us a better look at her spine. So we did 2 x-rays of her spine. They got a really good view and I was able to see the butterfly vertebra perfectly. Basicaly like it sounds, her vertebra is underdeveloped and in the shape of a butterfly. He said he can seen this before and he alot of the time it doesn't get worse, however there is still the possiblity that is can. He then went on to tell me Arianna has scoliosis. I immediatly felt sad but I know alot of people can have scoliosis and never need intervention. You could clearly see the curve, even though it is only a 1 degree curve. I just feel like it's never going to end, it's been one thing after another with this girl. I asked him if she has all her vertebra and he started counting and realized she has an extra lumbar vertebra. I kind of got a laugh out of that....she either is missing something or has an extra....just how it seems to go with her. He said it won't cause any problems but she should not smoke because it would cause her back pain. I never heard that before, but I'll use that to make sure I scare the crap out of her so she doesn't smoke. I'm an ex-smoker myself and I can't believe I used to put that nasty crap in my body. Here you have a child that fights to live a healthy life and there I was putting toxins into my body, taking for granted my health. I sure have a better way at looking at things...thanks to Arianna! The ortho said he really can't tell me if this will get worse but he hopes it doesn't. He said the only intevention for this would be surgery, but since she is so young they wouldn't use rods but do a reconstruction. I don't even want to think about that. I am standing in the Word and believing that God will heal her from this scoliosis and she will not require surgery. We go back in 6 months to do another set of x-rays to make sure we don't let things get worse. Please believe with me that Arianna will be healed from this and we can add this to her list of miracles that God has done for her.

As for the rest of the day, we have our OT coming...actually she just called and is running late so I was able to jump on here and update. Arianna always gets so excited to see Janet. Well better go she is stumbling all over the living room and getting upset.

Miss Cranky

Well not much to report here. Sorry ladies for keeping you on edge all day. Arianna broke her fever this morning and finally was at a normal temperature for a little while this afternoon. I really have to stay on top of her motrin/Tylenol or it will spike right up. I laid her down at 3pm for a nap and apparently I was tired too cause we both didn’t wake up till 5pm. Good thing I had a roast in the crockpot so dinner wasn’t too late. She spiked another fever this evening and was a total crab. I mean…fussy, fussy, fussy. I feel so bad for her. I did get a call back from the peds office and explained to the nurse Arianna’s symptoms and she told me the fluenza virus has been going around bad. They have a lot of kids in with fevers and cold symptoms I did tell her about my concerns with her recent respiratory illness and being on oxygen but she didn’t seemed concerned….I swear no one at that office ever seems concerned. She didn't think the teething was causing the fever since it wasn't a low-grade fever. I told her I had an appointment on Wednesday to met the new pediatrician and she didn’t think we needed to come in before then. As long as the Tylenol/motrin is helping the fever and she is still drinking liquids, there is not much else they can do. I forgot to mention to her that Arianna had puffy eyes today and it was even a Lasix day. You heart moms know how those puffy eyes can freak us out. I’m glad we are seeing our cardiologist Wednesday to make sure her heart is thouroughly checked out. So in the meantime we’re just gonna keep doing what we’re doing and hope it goes away.

Tomorrow is our appointment with the orthopedic doctor to discuss the finding in Arianna’s MRI, which she had done in December. They found what is called a butterfly vertebra on her T-10 which I’ve heard can be related to scoliosis. Her spine was in total alignment right now, which was great, but we need to get in to a doctor and establish a relationship so he can follow up on this. He’ll be reviewing the MRI tomorrow so I’m anxious to hear what he has to say.

I’m hoping Arianna doesn’t spike another fever tonight while sleeping. I just gave her some motrin which I’m hoping does the job. She has been really sluggish and grumpy in the morning and we have to be up in 6 hours to get ready. Poor baby is going to be tired. Then we have our OT coming over around 11am. I’m not expecting Arianna to eat much but it will still be nice to touch base with her and get any new ideas she may have. I’ll update as soon as I can tomorrow.

I don’t know what is up with all these kiddos being sick. Arianna is still battling a fever. This morning she was 103 and really cranky so we had to cancel our hearing test. I gave her a bath then put her back to bed. Her sats are staying in the 90’s except for a few dips last night when sleeping, but nothing that would require me to put the oxygen back on. I really hope this is just the teeth causing this and nothing else. The good thing is she is still drinking liquids so I don’t have to worry about dehydration…always something we worry about when our babies don’t feel good. Well I better get a few things done while she’s sleeping cause she won’t let me put her down when she’s awake. I’ll let you know if anything changes.

Still feeling yucky

Arianna had a really rough night but surprisingly she woke up in a good mood. I knew she wasn’t feeling totally herself because she laid in bed watching cartoons for about 45 minutes. I didn’t mind the extra rest but I hate seeing her like this. Then as she started moving around more you could just see it in her eyes that she still was under the weather. I gave her a nice bath then we went out to watch Daddy fly his radio controlled airplane. Arianna had a good time and really enjoyed being outside but after an hour she started feeling warm and sure enough her temperature was rising so we headed home. She does not want to be put down again so I ended up laying in bed with her for an hour to make sure she got some good rest. Right now she is laying on my chest and still has a temperature of 100.1. Looks like I need to give her some motrin.

Tomorrow Arianna is getting her second hearing test. She had one while in the NICU which she passed but because of the DiGeorge Syndrome and delayed speech they want another one done after 1 years of age. This is an early morning appointment and all the way across town so hopefully she will be feeling better to tolerate the long car ride. She cried the entire time we were in the car today. This is so hard for me to hear because we never let her cry as a baby. I still notice her lips getting blue when crying and that really freaks me out. The docs say all babies get like this when crying but when you’ve seen your childs entire body look like that it brings back some not-so-good memories.

While I was laying down with Arianna I was just watching the show, “Mystery Diagnosis” on discovery health…I’m addicted to that show! And it was about a child born with a CHD (narrowing of the aorta). She was having trouble gaining weight and didn’t have any weight gain from the age of 1 to 2. They started naming all these signs and symptoms this little girl had and all of it sounded like DiGeorge Syndrome and I was almost 100% sure they would diagnose her with it when they started talking chromosone disorders….but instead she was diagnosed with Turner Syndrome. I was watching this show and listening to the parents talk and I swear it could have been me on the television. It’s amazing to think how you can have so many of the same emotions as someone you have never met before. Even though this is a different syndrome it is still very important to me. Before Arianna I never knew how important genetics was…I’ll be honest I didn’t even know what a chromosone was. It is very important to get awareness out about all types of genetic disorders not just DiGeorge Syndrome. As the logo says on the VCFS website “Knowledge is Hope”.

Bad Day

Arianna is not having a good day. She had a rough night last night, up a lot, crying, tossing, and turning. Finally at 5 am she wanted mommy to get up and rock her. Her little body was burning up so I checked her temperature and sure enough she was 101. We’ve been giving her Motrin and Tylenol today which breaks the fever but only for 2-3 hours between doses. She won’t sleep lying down so it looks like I might be camping out on the rocker tonight. I feel so bad for her, she is just miserable when she has a fever. Everyone tells me its because she is cutting teeth. She just cut her 5th tooth yesterday and I think she might be working on another one. I just think it’s weird because she never got a fever with her other teeth. Who knows….I just pray it isn’t anything worse. Her sats are remaining in the mid 90’s, which is a good thing. She hasn’t been in the mood to eat or drink much the past few days but tonight while we were sitting eating dinner I had her on my lap and tried to feed her some of mac & cheese (baby food), since she seems to be back in the baby food stage. She didn’t want ME to feed her but when I gave her the spoon she went to town trying to feed herself. It was so amazing to see her determination in feeding herself with a sppon. We have never seen her do this before. I think we’ll try and get some better equiped spoons for her to use since she had such a good time. She was a total mess by the end but who cares. Then for dessert she fed herself half a serving of pudding. It was so good to see her eat like that. Hopefully this will continue. We weighed her when she got her RSV shots and she had lost an ounce since the week prior. I know my heart mommas know how hard it is to just put 1 ounce on our kiddos. So hopefully this feeling yucky won’t be accompanied by weight loss.

Right now she is running a temperature of 101 and Daddy is on his way out to buy more Tylenol. Hopefully she will start feeling better soon.

Shots, swings, and new things!

Arianna got her RSV shots this morning. She was such a trooper and only cried for a minute. There is this huge stuffed monkey and as soon as she seems him she stops crying and sits on his lap. When we were leaving she walked up to him and waved bye, it was the cutest thing!

When we got home I decided to take her for a quick walk around the neighborhood. I knew we had a park nearby but have never been there so we walked to the park. Its just a lot of grass and trees but to my surprise there was a few swings. Arianna has never been on a swing so I was so excited. I didn’t have my camera, since I wasn’t planning on doing anything but walking but thanks to my handy camera phone I got a snap shot of her. She was SO excited and wanted me to push her higher and higher. Great…looks like I have a brave one on my hands


Then this evening we went out and got Arianna's new carseat. Check her out...she is finally in a big girl seat!! Still has to face backwards but she will be alot happier in this upright position, instead of that old infant seat. (Don't' mind the crazy hair, we're having a rough night)

Notice still no oxygen!

Birthday Verse

I got this from another heart mom’s site. Did you know there is such a thing as a birthday verse. Here is Arianna’s:

John 11:26 NIV
and whoever lives and believes in me will never die.


AMEN….I love this verse. I am always speaking life over Arianna. She WILL live and never die!

Check out your birthday verse: http://www.birthverse.com/mybirthverse.cfm

Holding steady

I am so excited….no oxygen all day!!!! I hope whatever was going on inside Arianna’s body is finally on the mend.

We had our appointment with the geneticist this morning, which wasn’t much of anything. He told me he looked through her chart and commented on her recent respiratory illnesses. I told him about the hospitalization and the oxygen. He wasn’t able to shine any light on that area but told us Arianna is within normal limits and doing great! He said she is developing better than the other DiGeorge kids he’s seen, which was good to hear. We’ll see him again in 1 year than probably stop seeing him after that, unless needed.

The meeting with the speech therapist was great. The company is Talk Tools and they have a new approach to oral-motor therapy. We will be meeting twice a month with Pam, our ST, and I’ll be getting some items so I can work with Arianna on a daily basis. I’m actually very excited about their techniques. This therapist was very good with Arianna and picked up on her cues very well. They are really big on NOT giving the sippy cup but using straws instead, so good thing I haven’t been pushing the sippy cup this whole time. Arianna loves drinking from a straw anyways so I think this will work out. This company uses a hierarchical approach for oral-motor therapy, such as horns and straws.They gave us the first level straw, which Arianna does just fine with so she’ll probably advance to the next stage at our next visit. If your interested in there services you can check out there website for more information.

Other than that things are pretty calm this afternoon. I’m going to try and get some study time in before Arianna wakes up so I better get off here and get to work. Thanks for checking up on Arianna, we always appreciate your comments. It’s nice to know you all care about our baby girl.

Number's Game

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

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

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

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

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

Cannula is back

We had 4 great hours tonight with Arianna only needing oxygen when eating. But like I suspected as soon as she fell asleep her numbers dropped, so we’re back on oxygen. We’ll see how she does in the morning and go from there.

Those 4 hours were great though! She was walking all over the place and didn’t have to worry about that darn cord dragging her down.

No cannula!!

This is the first time Arianna has held good numbers off oxygen since we’ve been home. I was changing her shirt and had the oxygen disconnected and thought I would check to see what her sats were and she was at 96! I waited 15 minutes and rechecked and she is at 95 so we took off the cannula in hopes that these numbers stay. I’m sure she’ll still need oxygen when sleeping but hopefully that’s it. I’m so happy she can walk around the house right now without being attached to something. She wasn’t walking this good before the hospital so it’s crazy to see how well she is walking…tube free!!!

More Valenitine's

Thank you so much Krista! Once again you bring tears to my eyes. We love you!

Arianna was SO excited! She just LOVES the book. That is the cutest book I've ever seen. Oh and she had her very first piece of chocolate and LOVED it! Hey..there's an idea, I can fatten her up with chocolate. Check her out...

PT Evaluation

Yesterday we had our 3 month evaluation with the physical therpaist. Last time she was here was right before Arianna's 1st birthday. At that time Arianna was scoring between 9-10 months in her gross motor. After the evaluation yesterday she is scoring in the 13-15 month range. She is right on target!

I did tell the PT about my concerns with her over all low tone. She said that we might see a stall in her development over the next few months because it will take her longer to get the strength needed for certain activities. The PT is not at all concerned with her at this point and will come back in May for another evaluation. She gave us some activities to do with Arianna to help build the muscles in her legs. Pretty much alot of knee bending to pick up toys and trying to get her to pull/push toys while walking. She is still very wobbly but can definintly walk from room to room if no one bumps her. Of course having her connected to the oxygen doesn't help this at all, but she is learning to deal with it.

Speaking of oxygen I am no longer trying to wean her, at least not for another week. The PC told me it would be reasonable to have her sats as low as 92%, but when we allow her to be that low she doesn't eat well and seems more tired. She needs her O2 so we aren't going to deprive her of it anymore. She has gone without it for way too long. It's amazing cause she is signing more words and even TRYING to say "more" when singing. I think this O2 is helping with alot more than giving us good numbers. Hopefully we can get to the bottom of this soon, cause it really is driving me crazy that we don't have an answer.

Make an on-line slide show at www.OneTrueMedia.com

Congential Heart Defect Awareness Day!

Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...

Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...
I too... know just how this feels...
For one day...this was me.

Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.

Somewhere...someplace...today...
A child's growing fast...
Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost easy...to forget...
That anything is wrong...
Somewhere...someplace..today...
Her child seems so strong.

Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
Somewhere...someplace...today...
A family says goodbye...

Somwhere...someplace...each year..
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.

Today...for just a moment...
Stop...remember...reflect...
Make time to tell someone you know...
"I've been changed by a heart defect".

Author - Stephanie Husted


Today is a special day to acknowledge those born with congential heart defects. Take the time today to honor those who have lost there fight against CHD's and those still fighting everyday.

Arianna, I love you so much and Mommy is so happy to have you in my life. I never knew I could love someone as much as I love you. I am a better person today because of you. No matter what come your way, just know that I'll be fighting this fight with you. I love you baby girl!

Quick Update

I have rescheduled Arianna’s cardiology appointment for Feb. 27th. I also got a consult for one of the other peds in our office. I’m hoping she is more helpful then our current pediatrician. Please keep our dear friend Emma in your prayers that day. She is having her 2nd open heart surgery.


Our next appointment is on the 20th with the geneticist. Don’t know how helpful this appointment will be but at least he’ll have some information for the next DiGeorge kid that comes along.

Chunky Monkey

This morning we met with the dietician, occupational therapist, and feeding specialist. We have met once before with the feeding specialist who seems to be a very educated and helpful lady. I told her all about our past few weeks and she asked tons of questions. She too feels I should seek another pediatrician, which made me feel better to think I wasn’t just overreacting.

Arianna weighed in today at 18 pounds 4 ounces, which is a weight gain of 1 pound 4 ounces in 1 month. They were all very pleased and shocked at the increase in weight. We did some feeding time with Arianna to show them how well she was eating and they were just in awe at how much she ate. The OT and dietician are going to write a letter to the pediatrician and GI doc explaining to them that the eating has been a significant problem and ever since putting Arianna on the oxygen it has helped dramatically with this. I feel like these women are really trying to help me advocate for Arianna. To be honest with you they seem like the only ones that think this is a big deal.

I have put a call into the peds office to schedule a consult visit with a different doctor. I’m hoping this doctor will be more involved in Arianna’s care and not push things off like our current one does. I am so upset right now and irritated with the care of our current ped I was in tears just talking about it today.

Oh yeah, then to top it off I get an email from our cardiologist telling me he is not scheduled at the clinic on the 20th, which is the day we are scheduled to see him. I called to reschedule for the 27th and they are totally booked. I am waiting on a call back from the cardiology nurse to explain my situation and see if there is anyway they can fit us in. I do not feel comfortable having any other doctor see Arianna with all that is going on.

So today I am completely irritated with the medical profession and really wanting some answers. I have taken Arianna off oxygen at different times today to get an idea of how she does off oxygen and her sats are running at the same numbers they were when we first got this darn pulse ox 3 weeks ago. So what does this tell me….NOTHING!!! We still don’t know why she would be low to begin with. No one has answer and I’m getting more irritated as the day goes by. I just can not stand this darn oxygen on her anymore. She is walking all over the place, or should I say trying to walk but constantly tripping over some kind of cord. I really pray this doesn’t turn into a permanent thing. I know a lot of people have it a lot harder. I should be happy at least we didn’t get the feeding tube but I’m just in that kind of mood today that everything seems to be bothering me. Thanks for listening to me vent and hopefully my next post won’t be so down.

What happened to my day?

This morning Robert got off work early, which was a nice surprise for me since I have a lot of house work to do. Since it’s a nice warm day Robert was outside working on his radio control airplane and told me to set Arianna in her playpen outside with him. So this is how the morning went for Arianna.

She really had a blast outside with Daddy

I never get the chance to clean without Arianna around so I was happy to think this might be a good productive start to my day. I started a load of laundry, picked up the kitchen, took snacks outside for Arianna, proceeded to finish cleaning the kitchen when Daddy brought lil’ one back inside. By this time it was already time to get lunch ready. So I got lunch for all of us, which wasn’t hard to do with a frozen pizza. ☺ Tried to feed Arianna pizza and French fries which she didn’t want anything to do with, so I attempted baby food which turned into a big mess. She kept putting her hands in her mouth so I figured she was just teething, since she just cut another tooth this week, and gave up trying to feed her lunch. I gave her some Tylenol and she faked me out by laying down on me for 5 minutes and allowed me to rock her, which NEVER happens anymore. Then out of nowhere she got a burst of energy and wanted to keep playing. I figured we both needed to take a shower so we jumped in the shower…WITHOUT oxygen!!! Her numbers have been good so I decided a 10 minutes shower without O2 wouldn't hurt.

LOOK..No cannula!

I checked her pulse ox levels and she was in the low 90’s so we had to put a new cannula back on. She wasn’t too thrilled about that but I did try to make some little hearts instead of those big old squares.

This one's for you Kathy. I know they are HUGE, I'll just keep trying!

Now its 4 pm and I’m still trying to finish cleaning my kitchen (which I started at 10am), fold and put away 3 loads of laundry, attempt to do some studying before Arianna wakes up (doubt that will happen), and figure out what’s for dinner. Seriously. what happened to my day?

Day at the Park

Arianna has been doing great since we've been home. One of the many things that suck about having a hospital stay is your schedule gets totally messed up. She is back to staying up late and never giving mommy time to get anything done. My house is a mess, laudry needs to be done, and my school has come to a hault, but thats okay. It will take a week or so to get back on track.

The most important thing is Arianna is doing great and as of 20 minutes ago she is down to 1/4 liter while sleeping and her numbers are looking good!! I wasn't planning on lowering her oxygen until tomorrow but her numbers have been so good and steady the past few days I knew she could do it. Who knows, she may even tolerate a 1/8 of a liter when awake, but no rush. I just keep praying this was a nasty virus which required Arianna too need a little bit of oxygen to get over.

This afternoon we took Arianna to the park to feed the ducks. We have taken her once before but she wasn't that interested then, but today she was totally into it. She was even throwing bread in the water. I am trying to get Daddy to download the video so I can show you how cute she was today. Hopefully we'll get this video camera thing straightened out. Here are some cute pictures of Arianna with her Daddy. Go figure, as soon as we were going to take some pictures with Mommy the batteries died. Oh well, we got some really cute pictures with her Daddy!

Enjoying the outdoors

I can finally bite into an apple!!

My Daddy is the coolest!

Dr. Mom

That’s right, I’m officially Dr. Mom! I am just so tired of getting no where with these doctors. The first thing the pediatrician said today was how great Arianna looked. I told him I was upset that we don’t have any answers to whats going on and why Arianna needs oxygen. He said some kids with issues like Arianna (but would not explain what issues) tend to have a hard time with respiratory viruses and will need the extra help if they get sick. This is coming from the man that told me 6 months ago that my daughter was not immunocompromised and should not worry about anything. I told him I thought waiting 2 months to see a pulmonologist was ridiculous but he thinks its just fine. He said as long as she looks good then not to worry. Yeah, this is coming from the guy who saw her the day before she was hospitalized and didn’t think any thing was wrong with her. I am so sick of this doctor. He told me I can stop her antibiotics since she only has 2 more days and she has already been on antibiotics for a week. He then went on to say he knows I won’t stop but its totally up to me. I’m thinking hell yeah I’m going to finish her antibiotics, why wouldn’t I. He goes on to tell me I can take her off oxygen for an hour or two if we needed to go do something that the oxygen would make difficult to do. Okay, I don’t understand why the hospital would say to keep her on it 24/7 and he thinks she can be off of it. Isn’t that the point of weaning someone off oxygen, so their bodies get used to the lower levels not just completely shutting it off all at once. Besides she didn’t tolerate that very well in the hospital. So he said to give her 4 more days on half a liter of O2 then after that I can adjust as needed. I just can not stand this man anymore and will start scheduling our followups with the female doctor instead. Hopefully we will get along better. I did tell him that I fell he just blows off the things I’m concerned regarding Arianna, but didn’t get any response to that. I am not going to just sit here and act like everything is fine. I know she needs time to recover but I will not just sit here and wait 2 months to see a specialist.

So I tried to get our appointment with the pulmonologist moved up but they are totally booked. She said if I had our pediatrician call then they could get us in sooner. Well we know he won’t do that so we are screwed. I told her I will be seeing my daughters cardiologist in 2 weeks and she said if our PC is concerned to have him call and get us in sooner. I really feel like the only doctor that truly cares is our cardiolgoist so I’m anxious to see what he says at our appointment on the 20th.

For the meantime we are hanging out at home and keeping Arianna away from children or anyone that is sick. We don’t want her to catch something and wind up back in the ER, since we all know that is a horrible place to be. I am emotionally exhausted but I know that everything will work out . For the meantime, I am Dr. Mom and will take care of Arianna the way I feel fit. I am so exhausted I think I’m going to go lay down with Arianna.

Congenital Heart Defect Awareness Week

Blogger wont allow me to attached a pdf file so I can't show you the document but I wanted to share with you all anyways.

I sent a proclamation to the Governer a few weeks ago and while in the hospital I recieved the signed proclamation declaring Feb. 7-14th Congenital Heart Defect Awareness Week!!!

This is so exciting and I wish we weren't on isolation or we'd be out doing something to promote awareness. This week we need to bring awareness to those who don't know about CHD's. I have decided to start a support group in Tucson which will help with fellow CHD families but you can do something to. Give a donation to the Children's Heart Foundation. You can find there link at the side of this page. This organization gives 100% of its proceeds to CHD research. This is the type of things we need to get involved with and this week would be a good time to start. This research is going to save thousands of childrens lifes. I pray that they find a way to do valve replacements through the cath lab so Arianna won't need to endure another open heart surgery. So whatever amount you feel led to give will be helping thousands of children, including Arianna.

Thank you,
Vanessa

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

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

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

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

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

Home Sweet Home

We were discharged at 2pm and I can't tell you how good it feels to be home. We are stilling doing the albuterol treatments, but through an inhaler instead of a nebulizer, antibiotics, 2 more days of oral steroids, and FloVent. We got our oxygen delivered at home and trying to get things organized again. I'm so tired so I'm keeping this short but I'll update more tomorrow.

We're Going Home!!

The doctor just came in and feels we are ok to go home since she has stayed on half a liter all night. I'm a little nervous about taking her home with no answers but at least she will be on oxygen, which is also kind of scary. Hopefully my next post will be from home!!!

Good Night!

Arianna's number weren't looking so good when she first fell asleep last night but after an hour she seemed to stabilize in the 90's. I know I wasn't up all night but most the night cause we have a new roommate who is a few weeks old and wasn't doing too well last night. But who said you can get sleep in the hospital anyways. We will definintly catch up on some rest when we get home.
We were both in a deep sleep and they just came in woke me up so I can give her the antibiotic. She is now up and watching Curious George on tv. I figured I better stay awake cause the docs normally stop by in the next hour and sometimes that is the ONLY time they stop by. I am really hoping to go home. We had good numbers so I don't see why we couldn't. I'll let you know what the docs say.

The Plan....I think

Check it out...my own doctor kit!

Getting a well needed bath.

Don't I look so fresh and clean!

So this morning Arianna had the upper GI study and the even though the report isn't final, the doctor who did the test said everything looked good, no reflux or aspiration. THANK GOD! So what is it?

This afternoon the attending showed us the first chest x-ray taken in the ER and the one from today. You can definintly see the hazziness on the x-rays but todays looked worse, but will get the report tomorrow. It could very well be because in the ER x-ray Arianna's body was slightly twisted and the one from today was straight. Oh yeah, speaking of that, they put her in this contraption that looks like a torture chamber for the Saw movie. I could go into detail but honestly its just too sad to relive that memory. :(

They have decided to give her steroids for the next 3 days to help with the inflammation. We gave the first dose tonight and about 1 hour later she was bouncing off the walls. Guess they failed to mention this as a possible side effect. She finally got so tired from playing with Grams and Bepa that she fell asleep at 9:30pm. Just two more days of this thank God.

I did put a call into Arianna's GI doctor's office this morning just so he would be aware of what is going on. I didn't hear back from him so maybe we'll just see him at our next appointment which is in a few weeks. Are you ready for this.....Arianna weighs 18 pounds 8 ozs!!! Thats right, she has gained 1 pound 8 ozs since being in the hospital. At this rate we will be able to buy her a forward facing car seat by the end of the month. I am so excited and pray that she keeps the weight on.

So the plan as of tonight is, if Arianna can keep her saturations above 92 when awake and above 88 when sleeping then we can take her home on oxygen. She is currently at half a liter and they feel anything less than this won't work for her. So even though they wanted her on a lower amount of oxygen before they have come to terms that she just cannot tolerate a lower amount.

She did very well this afternoon with her nap and stayed between 88-93, but at bedtime she struggled to stay above 88 for awhile. She is currently satting at 93% once we did some repositioning and elevated her head. I was a little worried with the lower saturations earlier but I kept telling the nurse to give her time cause I KNOW she can do this.

We also talked to the attending and the immunoglobulin results were in. Her levels have increased in all areas which is great except for her IgE which is way too high. The IgE is the antibody found in the lungs, skin, and mucous membranes. The IgE levels can often be high in people with allergies. We were told by her immunologist that her eosinphils were high which can mean she would have allergies. But besides that her immunoglobulin levels were great! I'll be contacting him to find out what this all means.

I don't know why God chose me to be a mother to a special needs child and believe me sometimes I wish he didn't. But every time I look into my daughters eyes I couldn't imagine my life without her. Yes, I wish she didn't have to deal with these medical issues but that is what makes her so special. Through all she goes through she just puts that smile on her face and keeps on going. I can't give up on her and I won't. She has taught me to take each struggle head on and never let it get the best of me. I am putting her in Gods hands and believe that whatever is going on with her lungs will clear up and she will get off this oxygen. For now I know she needs it and we will work on it one day at a time. But the bible says, "Ask and it shall be given unto you"....we'll Lord I'm asking for healing over Arianna's body. Please continue to be in agreement with me over this.
Since I've been typing this post her saturations have dropped twice. I am in constant prayer about this and I know God knows the ultimate plan.

Frustrations

Okay where do I begin, I have so much on my mind. We don't know why but Arianna seems to be needing more oxygen. She has stayed on the low side all night then after her 3am breathing treatment she dropped to 85% and they upped her oxygen to 2 liters. I am worried why this is happening to her. Is she getting worse? She is on 2 liters and still has drops into the 80's.

Ok...here is where my blood begins to boil. At 5am they tell me that we are being moved into another room. I can't believe they are moving us again. They need to put someone in isolation and since we are were in 1 of the private rooms and the other private room is already being used for isolation, they need to move us into another room. I told them how I wasn't happy with this. That they stuck us with an RSV kid the other day and I am not happy with there services. I told them for some reason Arianna needs more oxygen and it happens to be after we got the RSV kid in our room....praying she didn't pick it up. I am just a ball of emotions so I was crying and getting upset about all that they have, or have not, done since we have been here. They reassured me the roommate we are getting is only here for isolation and is not contagious. I told them that is great but what about the next kid you bring in, what kind of sick kid will you stick us with then. So after all the advocating for my daughter yesterday I feel stuck in a position that I have no say so in. I told them we still don't know what is wrong with her, we haven't got her immune function tests back so I'm worried about having a roommate again. So anyways, they asked if I wanted to talk to the charge nurse, so I did, then the charge nurse asked if I wanted to talk to the clinical liason for the hospital and I said yes. So hopefully sometime tomorrow I'll have a nice chat about our horrible ER experience, the RSV kid, and the fact that no one bothered to take chest x-rays yesterday when it should of been done. I am so upset right now and just getting to the point were I don't want to be the nice mom anymore. I don't want them to think they can just walk all over me and I'll be okay about it, cause I won't. This is my daughters life and if they don't find it important to them, then I'll find someone else who does. Okay...thanks for listening.

So it's 6:30am and the newborn in the room keeps crying so Arianna isn't getting good sleep. It will be another long day. We are going to have her upper GI done today, and hopefully get another chest x-ray. Originally the doctors said they would contact her GI doctor and tell him about the ability to eat while on oxygen, then they say they aren't goign to. So here is what I will do. We will have the GI study this morning, then I will call her GI doc and let him know we are here and ask him to review her test. Somethings you just have to do yourself if you want it done. I'm sure there are 5 other things I wanted to tell you all but I'm so upset to even think about them right now.

Please continue to pray for Arianna and believe for a complete healing. Thank you for checking on us and I will update when I get another chance.

Eating!!

Signing 'Dad", while wearing his hat.

Thanks Trudy for my wish heart bear!

This is how I pass my time!

So we have noticed that Arianna eats alot better when she is on a higher amount of oxygen. The doctors have decided to stop trying to wean her oxygen, which is currently at 1 liter, and give her GI doctor a call tomorrow. I'll be curious to see what he says tomorrow.

When she was sleeping earlier her sats were dropping when laying on her left side then stabilized when we put her on the ride side. I asked about getting another chest x-ray and once again I got pushed aside. They have now changed shifts and I'll be talking to the night docs about getting another x-ray. I am just worried about her developing pleural effusion since this is something she had after surgery and once you have it then you are more prone to get it again. She doesn't seem in pain though....so I don't know. I'm sick of trying to diagnose my daughter, I wish they could give me some answers.

Girl likes her oxygen

I lost my first post to cyberspace, so heres the second entry...

Arianna did good last night, I didn't have to mess with her but once. At about 3:30 I just couldn't keep my eyes open anymore so Daddy got up with her. When she woke up this morning she layed in bed with me and watched a movie. I gave her the morning breathing and inhaler treatments and she began to drop her sats. Don't know why that would be, normally these treatments help her. They have been upping her oxygen slowly all morning. She is sleeping now and is up to 0.7 liters and still in between 88-90%. I just talked to the nurse and she is a little confused by all of this so she is getting the doctor to come in. We definintly won't be going anywhere today. We will watch the super bowl this afternoon and just make the best of this situation.

Well I'm going to try and rest until she wakes up or the docs come in. I'll update later.

Long night

First of all I have to brag on Arianna, she spent 7 hours with NO oxygen. I couldn't believe it myself either.

So here is my venting session for the night. We have gone through two roommates. The first was a little girl who had asthma, the second was a little girl with pneumonia and developed pleural effusion so went in for surgery today. So we enjoyed a few hours of alone time in our room but that was short lived. They were prepping the room for a new patient and I didn't even think of asking what this paitent was coming in for because they said they will pair up the kids according to whats wrong with them. So me and Robert figured it would be another child with pneumonia. So they bring this little boy in who looked really bad. You can hear the parents giving the description of his symptoms, i.e vomiting, high temp, etc. I immediatly told Robert I didn't feel comfortable with sharing a room with this kid, he is definintly sick with some kind of virus. So I'm sitting there while Arianna is napping and I was trying not to pay too close attention when they were talking to the nurses and doctors but I kept hearing the word RSV being said. I looked at Robert and told him we need to get out of here, they think he has RSV. Well it takes time to get the RSV test results back so they wouldn't know for sure until tomorrow but they are taking precautions and gowning and masking up when coming on contact with him. I couldn't believe they stuck this boy in our room!! I immediatly asked the nurse if he had RSV and she said probably. So I told her that we were told they wouldn't pair us with a sick kid because of her CHD and DiGeorge Syndrome this could be really bad if she caught RSV. I told her we needed out of that room and I was going to take Arianna out in the hall until they figured it out. They said they could put us in a private room but it would take 1 hour to get the current patient discharged and clean the room. So me and Robert took Arianna to the playroom, which was empty, thank God and waited until our room was ready. Then when we get in the room one of the nurses tells us that the boy is on 15 liters of oxygen, which is the highest they can give before having to intubate him. I am just so pissed off that they didn't take the time to look at our chart and see if we could be paired with a RSV child. ARE THEY STUPID!!! Okay...sorry just had to get that out. UUUGGHHH!!!

So here we are in our own room which is so nice to not have to worry about her picking something up from a roommate. I still feel freaked out cause this is the 2nd child on the floor that I know for sure has RSV. The longer we are hear the more Arianna is exposed to these germs. So please pray we get out of here soon. When we got in our room I asked the nurse to change her cannula cause it just looked nasty and she said we could just take it out since she had been off oxygen for so long. I told her I'm sure she will need it when she falls asleep but she didn't listen. Sure enough as soon as she feel asleep and we laid her down her sats dropped to 86 and stayed. They put another cannula on her and started with just 0.2 liters which didn't do anything. She is now on 0.7, which was what she was on last night and is doing well. She occasionally drops and they just want us to rub her chest when this happens, because we think she just breaths too shallow and stimulating the chest helps her breath deeper. So, Daddy has decided to stay the night and do shifts so one of us keeps an eye on her all night. The nurse thinks that would be a good idea. So that is why its going to be a long night. I'll give Daddy 4 hours of sleep then I'll try to get a few hours before Arianna wakes up. We were able to get a quick picture of her without her cannula on and she was so happy. My baby girl just knows how to make her mommy so happy. I am so proud of her and couldn't imagine my life without her.




Oh yeah, one more thing, they have stopped her IV, but are still going to keep the IV site because her antibiotics are given through the IV, but that is one less wire we have to deal with.

I am hoping we get to go home tomorrow, but I also thought we would go hom today so we'll just see what tomorrow bring us.

More Cuteness!

Where are we going?

Oh my...this place is cool!

It's Elmo!!!

This is how I looked when I woke up. Rough night..

I look better after my sponge bath.

And check it out. My Daddy is here!!!

My girl is coming back

Arianna is doing great today. She is up and playing and even had some soup for lunch. Are you ready for this....she has gained 1 pound since being at the hospital. She can easily take an 8 ounce bottle when before she could only do 3-4 ounces at a time. Maybe this oxygen this isn't so bad after all :)

We took her yesterday for a walk around the floor to get her out and about. She loved the walk and getting out of the room. She is taking a nap right now and they have her on 0.2 liters and satting at 90. This is a huge step for her. I know she will just get better as the days go on. It's pretty quite around here. Our roommate when into surgery so we are all along for a now, but that will change shortly I'm sure. I think I might even try to lay down myslef before Arianna wakes up. I'm can't get the pictures on this post so I have to do a seperate post for pictures.

Friday Night

When Arianna fell asleep she was on half a liter and sating in the low 90's. She started dropping to the 80's so the nurse bumped her up to .08 liters, which seemed to help, but not enough. They suctioned her nose twice because this evening she started with major post-nasal drip. I was pooring my heart out to the nurse, who was Daddy's old friend, when Arianna started desating again. She put herback on 1 liter, which seems to be doing the trick. I spent some time talking to this nurse and she got the impression that we were going home tomorrow but she said since Arianna cannot tolerate the same O2 levels when sleeping then we won't be going anywhere. I think I just had alot on my heart and this nurse was kind enough to sit and talk with me. I think since she knows Robert she was more interested in knowing more about Arianna's condition, or maybe I just talked her ear off....who knows. :-)

Anyways, I am sitting here and wanted to let you all know how our night is going so far. I'm a nervous wreck but trying not to let my mind wonder too far. I keep telling myself to take it one day at a time. Well gotta get my baby, she is coughing.....

We're down again

We are down to half a liter and have done great with sats in the mid-to-high 90's. We'll just have to see how she does when she goes to sleep tonight.
We did have the consult with the immunologist and he put in orders for labs. We are going to check her T cell levels, antibody levels, autoimmune studies, and I think that is it. We are waiting to see if they can pull her blood from the IV site or will have to draw from a new site. I hate to have them pock her any more but its for her own good.
I guess we just will get through tonight and see how she tolerates the lower oxygen levels. I am kind of not thinking straight right now so I'm going to get off of her and enjoy my baby girl before she goes to bed.

Thank you again for all the messages. I look forward to reading your messages, it really lifts my spirits.

Good Night!

Another day...

Arianna had a good night last night and got some well needed sleep. She slept in till 9am and the only reason she woke up was because we were taking her to do the swallow study. That test came back normal, which was a good start. They put in orders to do the upper GI but the person that does that test is not here today so we have to wait until Monday. They tried to decrease her oxygen to 1/4 liter, and she did well at first but when she fell asleep they dropped alot more so they had to up her to 1.5 liter then dropped her back to 1 liter. Anyways, with all that said it doesn't look like she will be leaving today. At first they though maybe tomorrow but at this rate I think we won't be going anywhere.

They have added an inhaler twice a day. I can't remember the name of it but its an asthma treatment. I don't know why they are putting her on this, but I'm assuming the pulmonologist ordered it. I'm still waiting to see him today so I'll hopefully have more information later.

The immunologist should be coming by this afternoon. Hopefully he will order some labs so we can see where her IGG levels are running.

She just woke up from a nap so I'm going to get off but I'll update more later.