More tests

Two months after she was discharged we are FINALLY getting her pulmonary function tests and swallow study. Tomorrow is the swallow study and next Monday is the pulmonary tests. We are still trying to get her holter monitor approved to check her heart rhythm. Her cardiology appointment in February was good except showed some PVC's on her EKG so we want to follow up on that. The QRS wave was actually showing a lower number than 2 years ago..THANK YOU GOD! So we are not even talking surgery at all this year.

DEAR REFLUX...YOU SUCK!!!

I know this blog has been about Arianna but it has truely become a place for me to come and put my thoughts down.

As you can tell from my title...we are dealing with reflux and IT SUCKS!!!

As I'm typing this Devin is SCREAMING his head off in the living room. Feeding has now become a challenge. He will start to eat and then he refluxes and arches his back, cries and then refuses to eat. Of course that just leaves him hungry so he is miserable.

On a positive note, we have started him on ranitidine (Zantac) for his reflux. We are giving it till Monday to see if it helps. If not then we will put him on Prilosec. I'm so relieved to finally be able to give him something.

I'm just completely overwhelmed with emotions when I can't calm my poor baby down and know he is in pain. I dealt with a little reflux (nasal regurgitation) with Arianna but it was nothing like this.

I did talk to the pediatrician today and the x-ray results were in and they said he has viral pneumonia. His peditrician doesn't believe that and says if it was the case he would be having fevers, which he is not. Which brings me to our lately diagnosis for Devin....Pectus Excavatum.

Pectus Excavatum is a depression or hollow caused when the sternum (breastbone) is abnormally pushed inward. The depression in the chest is due to abnormal growth of the cartilage that attaches the sternum to the ribs. This condition can give an inaccurate diagnosis of lung infections on x-ray....OR...he is possibly aspirating and we need to figure out which one it is.

We are going next Tuesday to see the pulmonologist. Nice thing is we already have wonderful doctors that have taken care of Arianna so we are going to see the same doctors for Devin. We are waiting for the hospital to call and schedule his upper GI test and appointment to see the GI doctor.

Well I have to get off now but I wanted to write a few things down while I had the chance. Thanks for checking on us.

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.

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.

In agreement...well sort of

After talking things over with Robert we both agree that the CT scans and bronchoscopy need to be done. We don’t know what put her in the hospital and if there is some underlining problem then we need to know about it to prevent another episode.

I did hear from the pulmonologists office today telling me the first available slot in on April 8th which is the same day as her appointment with the pulmo doctor. I told her the doctor wanted it done before we saw him and if we had to reschedule the April 8th appointment that would put us probably another month out which I don’t want to do. I rather get it over and done with so I don’t have to stress about it anymore. She did mention that they have an availability next Tuesday but she is still pending the bronchoscopy referral, so she will be giving the insurance company a call tomorrow. She also said we will have to stay the night in the hospital because they want to do a pH probe on her. I didn’t understand why he wanted this test done when the doctors in the hospital decided not to do it. She seemed confused herself and asked a lot of questions about the hospitalization. I explained that Arianna had an upper GI study along with a swallow study to rule out aspiration and silent reflux. The pulmonologist did mention possibly doing a pH probe but after the GI studies came back normal it was never mentioned again. (But then again they pulmonologist only saw us once so it’s possible the attending never knew about his plans) We don’t think they need to do this test because she has already had numerous tests showing she does not have reflux but maybe there is another reason for doing this test. If they do decide to do the pH probe I will be requesting a cosult with the doctor before subjecting Arianna to all these tests. So....the pulmo nurse will be emailing the doctor since he is out of town and see what he wants to do. I am having some issues with the times they do the tests since Arianna would have to fast. I’m praying they will have an early morning appointment become available. Don’t want to mess with her eating since she is doing so well with it right now.

Well I better go to bed since we have an early morning appointment with the immunologist. Ugh…probably be heading to the lab after that appointment. Poor baby…seems like she is always getting stuck with needles. ☹