So things have been rather boring on our end, which isn't such a bad thing. We have pulled Arianna from school and all group activities to keep her healthy for her upcoming heart cath which is scheduled for Oct. 31st.
This was the suggestion from her pulmonologist who knows how hard it is for Arianna to recovery from upper respiratory colds. We did go in for an appointment a few weeks ago and he performed another lung perfusion scan BEFORE having Xopenex and AFTER doing a Xopenex neb and we could see that there is inflammation in her small airways. She's been put on a daily dose of steroid inhalent to help with that and to keep her healthy for her cath. We will reevaluate after the cath to see if the blood flow changes anything.
So for now we just stay home, keep her healthy and wait for the next part of her journey...
Showing posts with label pulmonology. Show all posts
Showing posts with label pulmonology. Show all posts
Tuesday, October 18, 2011
Monday, July 27, 2009
On July 11th we had our 1st Annual Mended Little Hearts Bowling Fundraiser and raised $550! Here are some pictures from that day. It was great to see all the heart kids and friends and family out supporting our heart kids.
Aspen, Chloe (heart healthy), Arianna, Sydney
Arianna trying to help Jacob walk
Ari playing games with Bepa!
Then Arianna got to spend alot of time with her friend Alyssa. Here they are loving on the kitty.
Last week we saw the pulmonologist and he said Arianna's lungs sound like they are healing! YAY! We talked alot about how wonderful she was doing and then he went on to say he thinks we don't need to come back unless needed. Then I reminded him that this winter will be the first time she does NOT get the synagis shots (RSV shots). He decided to have her come back in November and we will discuss doing a preventative inhaler. As far as her asthma goes, she will use the albuterol as needed. I told him about her coughing with running and he said if we plan on going to the park or where she will run around alot to just give her the inhaler before we go. If thats all I have to worry about I'm happy! :)
This afternoon Arianna fell face first on the tile floor and got a huge bump on her forehead. Honestly, I was really freaked out but Robert calmed me down. You can see the bump right above her left eye.
So the past 2 days Arianna has been crying badly about right hip pain and not putting weight on it for several minutes so I am taking her in on Wednesday to see the pediatrician. I just want to make sure its nothing serious.
Well I have to run. I'll post more pictures later.
Wednesday, May 6, 2009
Mother knows best
That's all I can say. Sometimes I wish people would just listen to me.
I put a call into the pulmonary clinic and spoke with the triage nurse today (well guess it's technically yesterday). I asked about getting a nebulizer and I heard, yet again, how inhalers work just fine if used correctly. They asked if Arianna does 6 deep breaths in with the inhaler. Okay, come on, she is only 2 1/2 years old. I just got the kid to quit screaming when she sees me pull it out. After talking about why I think we should try the nebulizer, they called it into our home health people and 2 hours later it was delivered. I have to give them credit because the doctor said it would take a few days. The delivery man said when it comes to nebulizers they know its because people are having respiratory issues and no one should wait to get that kind of relief. How sweet!
Once Robert picked up her medication from the pharmacy and got home Arianna already cried herself to sleep because I had to pull the oxygen back out. I gave her the 1st nebulizer treatment and she started that wonderful coughing, which is a good thing to get all that nasty junk out her lungs. Her sats jumped up and the oxygen was put away. I know Arianna is happy about that. I just checked her sats right now and my princess is satting at 93 and sleeping like an angel.
I am just so relieved we have finally found something that works for her. I feel a huge weight taken off my shoulders.
The pulmonary nurse wants us to schedule the first available appointment for Arianna to see the doctor. She just didn't feel comfortable having her wait till August for a follow up. I'm sure they are scheduled weeks out so we'll see what we can get.
I put a call into the pulmonary clinic and spoke with the triage nurse today (well guess it's technically yesterday). I asked about getting a nebulizer and I heard, yet again, how inhalers work just fine if used correctly. They asked if Arianna does 6 deep breaths in with the inhaler. Okay, come on, she is only 2 1/2 years old. I just got the kid to quit screaming when she sees me pull it out. After talking about why I think we should try the nebulizer, they called it into our home health people and 2 hours later it was delivered. I have to give them credit because the doctor said it would take a few days. The delivery man said when it comes to nebulizers they know its because people are having respiratory issues and no one should wait to get that kind of relief. How sweet!
Once Robert picked up her medication from the pharmacy and got home Arianna already cried herself to sleep because I had to pull the oxygen back out. I gave her the 1st nebulizer treatment and she started that wonderful coughing, which is a good thing to get all that nasty junk out her lungs. Her sats jumped up and the oxygen was put away. I know Arianna is happy about that. I just checked her sats right now and my princess is satting at 93 and sleeping like an angel.
I am just so relieved we have finally found something that works for her. I feel a huge weight taken off my shoulders.
The pulmonary nurse wants us to schedule the first available appointment for Arianna to see the doctor. She just didn't feel comfortable having her wait till August for a follow up. I'm sure they are scheduled weeks out so we'll see what we can get.
Tuesday, April 28, 2009
Ramblings of a mother
I received the strangest message today from another clinic (one we have seen other specialists at including cardiology before surgery) saying Arianna has a cardiology appointment at their clinic on Thursday. I'm hoping this is because HER cardiologist is working their but I'll give them a call first thing in the morning to figure this out. If not, then we are headed to the other clinic to see a different cardiologist.
I wish I can say I'm not concerned anymore but I just layed Arianna down to sleep and checked her sats and she was in the mid to low 80's. Definitely not what my girl should be at. I put her on 1 liter of oxygen and will keep an eye on her very closely through the night. She had been fine all day, sats in the high 90's and actually eating a little bit ....so what gives?
Here's she is making blueberry pancakes for breakfast.I will see what cardiologist says and then be putting a call into the pulmonologist. It's so frustrating because these two specialists always put everything off on each other. The heart guy will say its a lung problem, and the lung guy will say its a heart problem. It's so frustrating!!!
Who knows, maybe she really needs to get that next lung CT done that we've been putting off. Her last scan was already a year ago. Wow...time sure flys by.
I will let you all know if we go see cardiology. Have a good night!
Friday, February 6, 2009
Pulmonology update
Thursday was our 6 month follow up with our new pulmonologist. :) We absolutely love this new doctor. When I used to visit the PICU I would see him all the time and he is just the kindest doctor.
So....after his examination he said she sounded great! I told him about the croup she had and he wasn't too concerned. We had the oxygen and pulse ox machine at home to manage it so there was no big concerns for recurrent episodes if that happens. (Megan I know you've dealt with your share of this with Elijah)
One thing that shocked me was when he asked if she coughs at night. Well, she actually does. I asked if that is a symptom of asthma and he said it was. Can you believe that? I had NO idea. I know she has been diagnosed with asthma after her bronchoscopy but to me she has never shown symptoms so I rarely think about it. He asked how often this happens and I told him honestly I can't tell you because I never paid much attention to it. He told me from now on if she coughs at night to give her the albuterol inhaler and if that helps get rid of her cough to keep it up as needed. So the past 2 nights I've been paying attention to this and guess what...she coughs before she wakes up. This is a child that has NEVER slept through the night. So now I'm thinking...HELLO it's been her asthma acting up this whole time. Yeah, you should of seen the light bulb going off inside my head. The more I started thinking about the past year the more it makes sense. She likes to be held in an upright position sometimes at night and that has to do with her needing to get more oxygen into those lungs.
So.....I will no longer deprive my child of her much needed asthma medication. I'm not sure about continued use of Albuterol since this is an inhaler. Is there anyone out there that has a child with asthma? If so can you tell me what type of inhaler your child uses on a daily basis. :)
Then I asked about preschool. That's right I said it....PRESCHOOL. No...I do not want her to go to preschool but when she turns 3 she will loose her early intervention program and if she still needs therapy we will have to take her to a public school for that. The Arizona Early Intervention Program likes to start prepping children for preschool about 6 months before they have to go. I know we have a few months before we would have to start anything like that but I've also learned with a DiGeorge child you can't just ask 1 doctor if you can do something, you have to ask several. So this is how I ask....."From a lung (or heart, or immune system, etc.) perspective can she go to preschool?" So the answer is.....yes...if the class is no bigger than 5 children. That will be pretty hard to find in a public school so I'm not banking on her going to preschool when she turns 3. Also, she turns 3 in November during RSV season and she will not be getting her synagis next year so I'm not comfortable with that anyways. So we have decided she just needs to do more playdates. So if anyone lives close and wants to get together just give me a holler! :)
Next week we will be seeing cardiology (my stomach is already in knots) and ortho but I'll post again tomorrow with the pics from our CHD Awareness Party.
So....after his examination he said she sounded great! I told him about the croup she had and he wasn't too concerned. We had the oxygen and pulse ox machine at home to manage it so there was no big concerns for recurrent episodes if that happens. (Megan I know you've dealt with your share of this with Elijah)
One thing that shocked me was when he asked if she coughs at night. Well, she actually does. I asked if that is a symptom of asthma and he said it was. Can you believe that? I had NO idea. I know she has been diagnosed with asthma after her bronchoscopy but to me she has never shown symptoms so I rarely think about it. He asked how often this happens and I told him honestly I can't tell you because I never paid much attention to it. He told me from now on if she coughs at night to give her the albuterol inhaler and if that helps get rid of her cough to keep it up as needed. So the past 2 nights I've been paying attention to this and guess what...she coughs before she wakes up. This is a child that has NEVER slept through the night. So now I'm thinking...HELLO it's been her asthma acting up this whole time. Yeah, you should of seen the light bulb going off inside my head. The more I started thinking about the past year the more it makes sense. She likes to be held in an upright position sometimes at night and that has to do with her needing to get more oxygen into those lungs.
So.....I will no longer deprive my child of her much needed asthma medication. I'm not sure about continued use of Albuterol since this is an inhaler. Is there anyone out there that has a child with asthma? If so can you tell me what type of inhaler your child uses on a daily basis. :)
Then I asked about preschool. That's right I said it....PRESCHOOL. No...I do not want her to go to preschool but when she turns 3 she will loose her early intervention program and if she still needs therapy we will have to take her to a public school for that. The Arizona Early Intervention Program likes to start prepping children for preschool about 6 months before they have to go. I know we have a few months before we would have to start anything like that but I've also learned with a DiGeorge child you can't just ask 1 doctor if you can do something, you have to ask several. So this is how I ask....."From a lung (or heart, or immune system, etc.) perspective can she go to preschool?" So the answer is.....yes...if the class is no bigger than 5 children. That will be pretty hard to find in a public school so I'm not banking on her going to preschool when she turns 3. Also, she turns 3 in November during RSV season and she will not be getting her synagis next year so I'm not comfortable with that anyways. So we have decided she just needs to do more playdates. So if anyone lives close and wants to get together just give me a holler! :)
Next week we will be seeing cardiology (my stomach is already in knots) and ortho but I'll post again tomorrow with the pics from our CHD Awareness Party.
I just had to show you the tattoo I put on Arianna tonight. It says "Mended Little Hearts" the name of our support group. She thought it was SO cool!
Wednesday, December 17, 2008
Phone call from the pulmo
Finally I got the call from the pulmonologist. He told me they compared Arianna's chest x-rays to those in Dec. 07' and Jan 08'. He believes there is improvement from Dec 07' but not much from Jan 08', which is the time she was in the hospital with her respiratory episode.
There is clear signs of cardiomegaly, which means her heart is enlarged. Something she has always had and will have until she gets a valve placed.
There is also pulmonary edema (swelling) present, which is due to her heart function. Because she has no pulmonary valve that makes more blood go to her lungs, therefore causing the swelling. This will not go away until she has a pulmonary valve placed. He asked when her next heart surgery will be and of course I didn't like talking about that. I try not to think about those things. I told him what the cardiologists have said and he didn't say too much. Just that it will be up to the cardiologists when the surgery will be needed but we have to consider her lung function as well. If there begins to get increased pulmonary edema then we will have to start talking about surgery.
She also has hyperinflation in her lungs. He explained this to be something seen in people with asthma. This is the first concrete evidence to prove that Arianna indeed has asthma. We are to keep the albuterol inhaler for when she is sick but he does not want to put her on anything else at this time.
They also saw some high density in her right lung base which they cannot exclude the possibilty of a previous lung infection. Remember this x-ray was done with she was 100% healthy so that wasn't great news. We have always been told her right lower lobe is diseased and no one can tell us why or what is really going on there. :(
So with all of this news the doctors says Arianna is a child we really do not want to see get a chest cold/infection. He explained the need to keep her away from large crowds, sick people, and lots of hand washing. I told him how we stay at home and only go to family and friends houses that are healthy. We only take Arianna to small stores for quick trips but even that is kept to a minimum. He want to do everything we can to keep this little girl as healthy as possible. Even just the little head cold she had caused her sats to drop to 89 while sleeping. I am happy to say she did not need any oxygen with this cold, just a few puffs from her albuterol inhaler and she was good for the night.
Unfortunatly with the cold/flu/RSV season this means I can no longer do my hospital visiting. I'm really bummed about that because I've received a few calls the past week with little ones having heart surgery in the upcoming weeks. I love offering that kind of support to these families and I've been the only one visiting withing our support group. This is the hard part about running a support group when you have a child with so many illnesses. But Arianna is #1 in my life and this is what I have to do to ensure she is healthy and well. I'm hoping over the next year to get more people visiting at the hospital so it can continue year round.
Well I'm off to bed at 2:40am. Thats what happens when your daugher stays up till 1am the night before and actually sleeps in till 11:45am. It was nice sleeping in that late but not making it easy to fall asleep tonight.
There is clear signs of cardiomegaly, which means her heart is enlarged. Something she has always had and will have until she gets a valve placed.
There is also pulmonary edema (swelling) present, which is due to her heart function. Because she has no pulmonary valve that makes more blood go to her lungs, therefore causing the swelling. This will not go away until she has a pulmonary valve placed. He asked when her next heart surgery will be and of course I didn't like talking about that. I try not to think about those things. I told him what the cardiologists have said and he didn't say too much. Just that it will be up to the cardiologists when the surgery will be needed but we have to consider her lung function as well. If there begins to get increased pulmonary edema then we will have to start talking about surgery.
She also has hyperinflation in her lungs. He explained this to be something seen in people with asthma. This is the first concrete evidence to prove that Arianna indeed has asthma. We are to keep the albuterol inhaler for when she is sick but he does not want to put her on anything else at this time.
They also saw some high density in her right lung base which they cannot exclude the possibilty of a previous lung infection. Remember this x-ray was done with she was 100% healthy so that wasn't great news. We have always been told her right lower lobe is diseased and no one can tell us why or what is really going on there. :(
So with all of this news the doctors says Arianna is a child we really do not want to see get a chest cold/infection. He explained the need to keep her away from large crowds, sick people, and lots of hand washing. I told him how we stay at home and only go to family and friends houses that are healthy. We only take Arianna to small stores for quick trips but even that is kept to a minimum. He want to do everything we can to keep this little girl as healthy as possible. Even just the little head cold she had caused her sats to drop to 89 while sleeping. I am happy to say she did not need any oxygen with this cold, just a few puffs from her albuterol inhaler and she was good for the night.
Unfortunatly with the cold/flu/RSV season this means I can no longer do my hospital visiting. I'm really bummed about that because I've received a few calls the past week with little ones having heart surgery in the upcoming weeks. I love offering that kind of support to these families and I've been the only one visiting withing our support group. This is the hard part about running a support group when you have a child with so many illnesses. But Arianna is #1 in my life and this is what I have to do to ensure she is healthy and well. I'm hoping over the next year to get more people visiting at the hospital so it can continue year round.
Well I'm off to bed at 2:40am. Thats what happens when your daugher stays up till 1am the night before and actually sleeps in till 11:45am. It was nice sleeping in that late but not making it easy to fall asleep tonight.
Monday, December 15, 2008
Quick update
We are still trying to get over this nasty cold but I think we're almost rid of it. I, however, have lost my voice. I think Robert is liking it though. Arianna's runny nose is finally clearing up. I am so happy to say she did not need any oxygen with this cold. :) She did start coughing yesterday so I was worried how she would do while she was sleeping. The lowest her sats got was 89 so I just gave her 2 puffs of her albuterol and that helped her out.
I have still not heard from the pulmonologist and it's really beginning to piss me off. I know she is doing fine but it's been 5 weeks since her x-rays and I want to know if there is improvement on her x-rays. But since I can't talk I can't even call to complain again. I'll wait till tomorrow.
I've woke with major back pain and have been laying on the couch all day, with the exception of making Arianna some lunch. I really hate that I am going to have to deal with this for the rest of my life. :(
On a happy note....my grandmother from Oklahoma is in town for the holidays. Hopefully by tomorrow I'll be feeling better and able to go visit with her.
Just wanted to let you all know we are still here.
____________________________________________________________________
Update at 6:30pm:
I received a call about 30 minutes ago from a nurse at the pulmonary clinic. She apoligized for no one getting back to me. She tried to blame the other clinic for them not having the x-ray but I began to explain to her it was HER office not the childrens clinic. Anyways she actually had the dictated report so she faxed that over to my moms work. My mom is so kindly going to pick it up for me tonight and bring it by. However, the nurse read the results over the phone.
They compared the x-ray to the previous x-ray and there is no significant changes. There is perihilar edema but no consolidation.
It's great there is no consolidation since that has always been something we've seen on her x-rays. The perihilar edema is something new to me. I'm doing some research on this and I think I might know what it is and why she has it but I'm hesitant to post about it.
The nurse is leaving a message for the doctor to call me after his clinics tomorrow which is sometime around 1pm. I'll let you all know if I hear from him.
I have still not heard from the pulmonologist and it's really beginning to piss me off. I know she is doing fine but it's been 5 weeks since her x-rays and I want to know if there is improvement on her x-rays. But since I can't talk I can't even call to complain again. I'll wait till tomorrow.
I've woke with major back pain and have been laying on the couch all day, with the exception of making Arianna some lunch. I really hate that I am going to have to deal with this for the rest of my life. :(
On a happy note....my grandmother from Oklahoma is in town for the holidays. Hopefully by tomorrow I'll be feeling better and able to go visit with her.
Just wanted to let you all know we are still here.
____________________________________________________________________
Update at 6:30pm:
I received a call about 30 minutes ago from a nurse at the pulmonary clinic. She apoligized for no one getting back to me. She tried to blame the other clinic for them not having the x-ray but I began to explain to her it was HER office not the childrens clinic. Anyways she actually had the dictated report so she faxed that over to my moms work. My mom is so kindly going to pick it up for me tonight and bring it by. However, the nurse read the results over the phone.
They compared the x-ray to the previous x-ray and there is no significant changes. There is perihilar edema but no consolidation.
It's great there is no consolidation since that has always been something we've seen on her x-rays. The perihilar edema is something new to me. I'm doing some research on this and I think I might know what it is and why she has it but I'm hesitant to post about it.
The nurse is leaving a message for the doctor to call me after his clinics tomorrow which is sometime around 1pm. I'll let you all know if I hear from him.
Thursday, November 6, 2008
Pulmonology appointment today
Today was our appointment with the pulmonologist. I have to brag on how good my little girl was. Normally she cries through the measuring process but not today. She was a total angel. She weighed in at 21 pounds 13 ounces, which is up 13 ounces in 2 months. Not too big of a gain but it's a gain so I'm taking it. :) Her height was 33 inches, which is up 1.1 cm in 2 months.Then the resident doctor came in to get a history....normally I don't mind when I have to talk to them but today was just irritating. I understand everyone needs to learn but sometimes I just wish they would read the patient history before assuming what was done/or wasn't done. This was our conversation:
Resident: So when is she having heart surgery?
Me: She had surgery when she was 6 months old.
Resident: So she's done? (seriously I thought it was only non medical people who asked this.)
Me: No...she will need a pulmonary valve in the future.
Resident: So when will that be?
Me: Not sure. Cardiologists don't give you a timeline.
Resident: So she had like a shunt put in? (her exact words)
Me: This is where I explain she had the full repair but she needed me to go in further details to explain everything they did to her pulmonary valve. Guess for curiosity sake.
Resident: Just looked at me with this "WOW" look on her face.
Not sure if she gave me that look because of everything I knew or if it's because I'm just a heart mom and she's the freakin resident and I had to explain everything when all she needed to do was take a few minutes to review the chart. Sorry it just really irritated me today.
So after our brief conversation she did her physical exam on Arianna and I was so proud of my little girl. She did everything the doctor asked, including opening her mouth which she never does.
The pulmonologist comes in and he was so sweet and pleasant to her. He picks her up and puts her on the table and starts his exam. The entire time she is all smiles and lets him do whatever he wants to her which including making her lay down and she normally cries when they do that. The resident kept saying she's amazed that shes only 23 months old cause she is so well behaved. Yup...that's my little girl. YEAH RIGHT...only for them. LOL!
So the doctor said she sounds good but wanted to get a chest x-ray to compare to the previous 2 films which had some changes on them. Since Arianna is healthy at the moment (crossing my fingers it stays that way) I took her immediately to the other clinic for x-rays. The doctor should be calling me next week with the results.
We are to follow up with him in 3 months, earlier if she gets sick. He is a little concerned about the fact that her August cold caused her sats to drop in the 80's and be put on O2 at night. He really doesn't want to see what a winter cold will be like for her so he told us to be cautious and not take her anywhere populated like the mall, stores, etcs. They did check her O2 sats when we were there and she was satting at 96% which is what I've been getting at home.
I did ask about taking her up to the mountains and possibly on an airplane (not sure if we can even afford it, but in June is the Mended Little Hearts convention in Florida and I really want Robert and Arianna to come with me). He said we can take her for a trial run up the mountain but we have to bring the pulse ox and oxygen. He just stop at the first rest stop and check her sats, if she's good then we can go to the next one, so and so forth. If she can hold her own at 7,000 feet then she is good to go on a plane. He said if she does require oxygen at that level it's okay cause we could always arrange for oxygen on the plane. (Kathy your the first person I thought of when he said this.) He also suggested maybe taking a train ride to Florida but I'm not so sure about that. He did say even though her sats may be borderline at a higher elevation while resting we have to take into consideration that physical activity will make it worse.
As for me....I've just been busy studying. I'm hoping to take my final in two weeks. I'll be so happy to have this course over with and look forward to working as a medical transcriptionist starting next year!
Monday, May 19, 2008
Consult with doctors (LONG POST)
I have honestly dreaded sitting down and writing this post. It's not that it's bad but that I don't want to deal with the flood of emotions I have going on right now. Well I better start from the beginning...
So we arrive at the hospital for our consult with the pediatrician, pulmonologist, and cardiologist. We meet our pediatrician in her office and she escorts us to the conference room. My mom went with me, like always, cause she's the greatest! I wouldn't of been able to keep up with Arianna and listen to the docs without her. Plus she is a second pair of ears in case I miss something.
So we are the first in the conference room and I start to ask the pediatrician how much she knew about immunology. Last night I was trying to review her most recent labs and have to tell you how frustrating it is. Immunology is one area I absolutely don't understand. Since I don't have much faith in our immunologist it makes it very hard for me to feel she is getting the best of care. Makes it even harder since I'm always told this is the best doc to have and we are honestly thinking of switching back to the original immunologist. (If you can't tell already..I'll be all over the place in this post.) So back to the meeting... The pulmonologist and cardiologist arrive and our pedi starts by introducing us to the pulmo, and surprisingly enough he remembers us from when Arianna had her surgery. I start out by giving him a some what brief history of Arianna. I also expressed my concerns I have with the other pulmonologist, which are the following: not calling with results, doing bronchoscopy before a CT when clearly that is NOT the best thing to do (makes it hard to see what exactly is consolidation in her lungs), leaving it up to me whether to give her the Flovent inhaler, chalks everything up to Arianna's OHS and multiple anesthesia's, and tells me we no longer need to follow up with pulmonary. (This is the doctor who is married to our immunologist...beginning to see the picture! UGH)
The pulmo first asks the cardiologist to explain Arianna's cardiac function. Our AMAZING cardiologist (can you tell I just LOVE this guy!) explains her function: no residual ASD or VSD; trnsannular patch for pulmonary valve; created monocusp valve for PV, which is no longer there which means it is free flowing (pulmonary insufficiency); generous right ventricle hypertrophy with no signs of heart failure. He goes on to explain Arianna has tolerated all her weanings from Lasix...which I interrupt to tell him she has very puffy eyes every morning. He gives me a shocked look...but goes on to explain this is just because her kidneys are trying to get used to the new volume and should balance out soon. From a cardiac standpoint...this is the best news I heard today...Arianna is doing GREAT!!! He said she will need a pulmonary valve placement done sometime but not in the immediate future.
After the pulmo heard this he felt comfortable saying the lung issue is not being caused because of her heart. Good news...but where does that leave us? He reviewed her CT last night and told me it's hard because the CT was done right after the bronchoscopy and since they do a lavage (fill the lungs with liquid, then suck it out) it makes it look consolidated on the CT. This doesn't account for all the consolidation but it didn't help it any. I asked why this was done that way and he said it must of been a scheduling issue. So for anyone going to have both these tests done together...make sure the CT is done BEFORE!! Wish I would of known that beforehand.
He ruled out aspiration. YIPPEE!
I ask what caused her respiratory distress in January and he answers honestly, which means alot to me, that he doesn't know. It could of been the chronic illness she had a month prior but can't be certain if that's the case. He said Arianna has basilar (lower lobes) lung disease. He said of all times this is the best time to have this because she will produce more lung tissue over the next couple of years. His hopes is that the damaged areas will recovery as her new tissue is made. He mentioned the immunologists most recent report showed she has a low lymphocyte count, which he never mentioned to me...so I'm pretty upset about that. He also mentioned his colleague gave Arianna a diagnosis of asthma. This really upsets me because this was NEVER told to me. We are told basically to keep an eye out for wheezing and if she gets a cold to start her albuterol treatments. It may very well be something we just have to treat in the winter months, but once again we're not sure. We were told to consult with him before going on any trip that would require her to go higher in elevation, even Mount Lemon would be a concern. He said her sats would drop and she would probably not be able to walk or eat...so I told him we just won't go anywhere. This is sad for me, because I've been waiting to take her to the Rose Canyon Lake to go fishing ever since she was born. My grandfather even bought her a fishing rod months ago, which has been sitting in the closet. Just another thing we won't be able to do...but we'll find other places to take her! Lets see...anything else...I think that covers most of it from the pulmonologist. Oh yeah...we follow up in 6 months.
When we were wrapping things up I start talking to our cardiologist about something I discovered last week while watching Discovery Health...I'm addicted to that channel. LOL! There was a 9 month old baby girl who had a pulmonary valve placed in the cath lab. For those who don't know...we are hoping that research would get to the point where these valves could be done through the cath lab, which would elevate the need for multiple open heart surgeries. We have been praying that science would get to that level and Arianna wouldn't need to have another invasive surgery. I found the article on the Stanford website to make sure this was correct information. Here is the article if your interested. He told me he was unaware of this happening with children this young and wants me to forward the article to him. He cautioned me about where I get my information, but once I told him it was at Stanford he told me he is friends with on of the doctors in the cath lab. I'll be curious to see what he thinks after reading the article. There is hope for the future!
Then, once all but the pediatrician leaves I begin to discuss my concerns with her about the immunologist. After several minutes of talking she asked if I would mind if she made a consult for all three of us to talk, just like she did today. I thought, "GREAT!" I told her I don't want to step on any toes but I really am thinking of leaving this doctor, but know he is the best and want to try to make this work. She is very interested in learning more about immunology herself...and this will be the way she gets us into this consult without the doctor thinking I'm pulling the pedi in because I don't trust him. She then mentioned Arianna is her first DiGeorge patient and she is wanting to learn all about her sydrome along with me. She has treated DiGeorge kids in the hospital setting but says it is alot different when you follow the child there entire life. I feel so blessed to have her working so diligently with us and being such a great advocate for my daughter and myself.
So...where does that leave us...we are told to still stay away from large groups of children, church, daycare, any who is sick, etc. It would of been beneficial to have the immunologist attend this meeting today but that was thought of too late. Our pediatrician did asked, "When can I start to treat Arianna like a normal child?" And basically the answer was led back to..."keep doing what your doing." We may never know WHEN or IF we can treat Arianna like a normal child, but we can give her the best life possible. It truly breaks my heart that I cannot take her to church and enjoy a Sunday morning service like most people, let her go to the toy store and pick out a toy, attend our support group meetings, and so many other things I would love to do with her. But we will make the best of our situation and remember that God is in control. The doctors made it sound like we should continue this path for, at least, the next year. That is just a small amount of time when your looking at the big picture. I had a vision tonight of Arianna being in her early 20's, sitting down for tea, talking about her life as a child and all that she has been through. She looked at me straight in the eyes, as I cried and explained to her how horrible I felt for never being able to take her places that most children could go....and she looked at me with the sweetest face and said, "Mom...I don't remember those times so don't worry." I guess when it boils down to things, she really won't remember these first years. It's us parents who go through the emotions and struggles of adjusting to our new 'normal'. Then I sit here and look at a beautiful little girl who has the energy to run around the house screaming and I just thank God for all that He has done. I'm so thankful that she is even alive today. So many families lose their children due to CHD's or other medical illnesses. I have to be thankful I even have Arianna here with me today, to love on. Who cares if he have to spend SO much time at home. One day when she is a teenager I'll be looking back wishing she was this little baby who couldn't go anywhere, just to get a few minutes alone with her. I know we all have our areas we struggle with and I thank God that he has shown me the bigger picture. I appreciate SO much but sometimes I just hate MY situation...no matter how big or small it may seem to others. I just wish I had a NORMAL like everyone else. I wish Arianna didn't have a genetic condition that could possible be passed to her children. I wish she could go on play dates, attend Mommy & Me classes, or even play at the playground. I guess I feel like I'm still mourning for losing the 'healthy' child I thought I would have. I know that God has a plan for her and even though it wasn't the plan I was hoping for, I know she will touch many lives along the way.
So we arrive at the hospital for our consult with the pediatrician, pulmonologist, and cardiologist. We meet our pediatrician in her office and she escorts us to the conference room. My mom went with me, like always, cause she's the greatest! I wouldn't of been able to keep up with Arianna and listen to the docs without her. Plus she is a second pair of ears in case I miss something.
So we are the first in the conference room and I start to ask the pediatrician how much she knew about immunology. Last night I was trying to review her most recent labs and have to tell you how frustrating it is. Immunology is one area I absolutely don't understand. Since I don't have much faith in our immunologist it makes it very hard for me to feel she is getting the best of care. Makes it even harder since I'm always told this is the best doc to have and we are honestly thinking of switching back to the original immunologist. (If you can't tell already..I'll be all over the place in this post.) So back to the meeting... The pulmonologist and cardiologist arrive and our pedi starts by introducing us to the pulmo, and surprisingly enough he remembers us from when Arianna had her surgery. I start out by giving him a some what brief history of Arianna. I also expressed my concerns I have with the other pulmonologist, which are the following: not calling with results, doing bronchoscopy before a CT when clearly that is NOT the best thing to do (makes it hard to see what exactly is consolidation in her lungs), leaving it up to me whether to give her the Flovent inhaler, chalks everything up to Arianna's OHS and multiple anesthesia's, and tells me we no longer need to follow up with pulmonary. (This is the doctor who is married to our immunologist...beginning to see the picture! UGH)
The pulmo first asks the cardiologist to explain Arianna's cardiac function. Our AMAZING cardiologist (can you tell I just LOVE this guy!) explains her function: no residual ASD or VSD; trnsannular patch for pulmonary valve; created monocusp valve for PV, which is no longer there which means it is free flowing (pulmonary insufficiency); generous right ventricle hypertrophy with no signs of heart failure. He goes on to explain Arianna has tolerated all her weanings from Lasix...which I interrupt to tell him she has very puffy eyes every morning. He gives me a shocked look...but goes on to explain this is just because her kidneys are trying to get used to the new volume and should balance out soon. From a cardiac standpoint...this is the best news I heard today...Arianna is doing GREAT!!! He said she will need a pulmonary valve placement done sometime but not in the immediate future.
After the pulmo heard this he felt comfortable saying the lung issue is not being caused because of her heart. Good news...but where does that leave us? He reviewed her CT last night and told me it's hard because the CT was done right after the bronchoscopy and since they do a lavage (fill the lungs with liquid, then suck it out) it makes it look consolidated on the CT. This doesn't account for all the consolidation but it didn't help it any. I asked why this was done that way and he said it must of been a scheduling issue. So for anyone going to have both these tests done together...make sure the CT is done BEFORE!! Wish I would of known that beforehand.
He ruled out aspiration. YIPPEE!
I ask what caused her respiratory distress in January and he answers honestly, which means alot to me, that he doesn't know. It could of been the chronic illness she had a month prior but can't be certain if that's the case. He said Arianna has basilar (lower lobes) lung disease. He said of all times this is the best time to have this because she will produce more lung tissue over the next couple of years. His hopes is that the damaged areas will recovery as her new tissue is made. He mentioned the immunologists most recent report showed she has a low lymphocyte count, which he never mentioned to me...so I'm pretty upset about that. He also mentioned his colleague gave Arianna a diagnosis of asthma. This really upsets me because this was NEVER told to me. We are told basically to keep an eye out for wheezing and if she gets a cold to start her albuterol treatments. It may very well be something we just have to treat in the winter months, but once again we're not sure. We were told to consult with him before going on any trip that would require her to go higher in elevation, even Mount Lemon would be a concern. He said her sats would drop and she would probably not be able to walk or eat...so I told him we just won't go anywhere. This is sad for me, because I've been waiting to take her to the Rose Canyon Lake to go fishing ever since she was born. My grandfather even bought her a fishing rod months ago, which has been sitting in the closet. Just another thing we won't be able to do...but we'll find other places to take her! Lets see...anything else...I think that covers most of it from the pulmonologist. Oh yeah...we follow up in 6 months.
When we were wrapping things up I start talking to our cardiologist about something I discovered last week while watching Discovery Health...I'm addicted to that channel. LOL! There was a 9 month old baby girl who had a pulmonary valve placed in the cath lab. For those who don't know...we are hoping that research would get to the point where these valves could be done through the cath lab, which would elevate the need for multiple open heart surgeries. We have been praying that science would get to that level and Arianna wouldn't need to have another invasive surgery. I found the article on the Stanford website to make sure this was correct information. Here is the article if your interested. He told me he was unaware of this happening with children this young and wants me to forward the article to him. He cautioned me about where I get my information, but once I told him it was at Stanford he told me he is friends with on of the doctors in the cath lab. I'll be curious to see what he thinks after reading the article. There is hope for the future!
Then, once all but the pediatrician leaves I begin to discuss my concerns with her about the immunologist. After several minutes of talking she asked if I would mind if she made a consult for all three of us to talk, just like she did today. I thought, "GREAT!" I told her I don't want to step on any toes but I really am thinking of leaving this doctor, but know he is the best and want to try to make this work. She is very interested in learning more about immunology herself...and this will be the way she gets us into this consult without the doctor thinking I'm pulling the pedi in because I don't trust him. She then mentioned Arianna is her first DiGeorge patient and she is wanting to learn all about her sydrome along with me. She has treated DiGeorge kids in the hospital setting but says it is alot different when you follow the child there entire life. I feel so blessed to have her working so diligently with us and being such a great advocate for my daughter and myself.
So...where does that leave us...we are told to still stay away from large groups of children, church, daycare, any who is sick, etc. It would of been beneficial to have the immunologist attend this meeting today but that was thought of too late. Our pediatrician did asked, "When can I start to treat Arianna like a normal child?" And basically the answer was led back to..."keep doing what your doing." We may never know WHEN or IF we can treat Arianna like a normal child, but we can give her the best life possible. It truly breaks my heart that I cannot take her to church and enjoy a Sunday morning service like most people, let her go to the toy store and pick out a toy, attend our support group meetings, and so many other things I would love to do with her. But we will make the best of our situation and remember that God is in control. The doctors made it sound like we should continue this path for, at least, the next year. That is just a small amount of time when your looking at the big picture. I had a vision tonight of Arianna being in her early 20's, sitting down for tea, talking about her life as a child and all that she has been through. She looked at me straight in the eyes, as I cried and explained to her how horrible I felt for never being able to take her places that most children could go....and she looked at me with the sweetest face and said, "Mom...I don't remember those times so don't worry." I guess when it boils down to things, she really won't remember these first years. It's us parents who go through the emotions and struggles of adjusting to our new 'normal'. Then I sit here and look at a beautiful little girl who has the energy to run around the house screaming and I just thank God for all that He has done. I'm so thankful that she is even alive today. So many families lose their children due to CHD's or other medical illnesses. I have to be thankful I even have Arianna here with me today, to love on. Who cares if he have to spend SO much time at home. One day when she is a teenager I'll be looking back wishing she was this little baby who couldn't go anywhere, just to get a few minutes alone with her. I know we all have our areas we struggle with and I thank God that he has shown me the bigger picture. I appreciate SO much but sometimes I just hate MY situation...no matter how big or small it may seem to others. I just wish I had a NORMAL like everyone else. I wish Arianna didn't have a genetic condition that could possible be passed to her children. I wish she could go on play dates, attend Mommy & Me classes, or even play at the playground. I guess I feel like I'm still mourning for losing the 'healthy' child I thought I would have. I know that God has a plan for her and even though it wasn't the plan I was hoping for, I know she will touch many lives along the way.
Thursday, May 1, 2008
Pulmonary update
I can finally tell you all about my talk with the pulmonologist. I got a call on Monday and after making her feel awful for not calling sooner she told me exactly what the bronchoscopy results were. I won't go into detail but basically everyone was within normal range. The only thing is her eosinopils were at 4%, which is good because normal is <5% but she said almost ALL kids come back with a 0%. So basically this means she is more prone to developing allergies and/or asthma. She is not giving her a diagnosis but it's something to be aware of if we notice more symptoms. This also concurns with the previous lab works that was done that showed a high number of IgE's and eosinphils. Arianna is not aspirating and does not have sequestration!!! THANK GOD!! Since we haven't had a clinic visit I had to give her a full history over the phone to bring this doc up to speed. She explained that Arianna's saturations should never be below 95%, whether she is awake or asleep. She agreed with our pediatrician and said if she is below 92% while awake or below 87% while sleeping then we need to put her on oxygen, or if we notice she is having a difficult time breathing. This was good to finally have a number to go off of. This being said she can't explain why she is sating so low while sleeping. She said the CT doesn't give us a good enough picture but she is chalking it up to trauma. Arianna has been though open-heart surgery and had multiple anesthesia's done for tests that she thinks it's possible scaring and trauma. This was sad to hear but at least it isn't something worse. I asked what, if anything, needed to be done and she said just time. Over time she will develope good lung tissue which should replace the bad. The biggest thing is that Arianna not get any colds. This will set her recovery back even farther.
So as you all know we are staying just as precautious. If you are sick, or even have a sniffle or cough, DON'T COME OVER!! I can't stress this enough. I don't know how many times I could get upset when people think it's nothing and still proceed to come to my house and act like everything is okay. I want you to know it's not okay. Please respect my wishes and just wait until you are symptom free. We love are daughter and are trying to do the best to keep her healthy.
With all of this being said, we still don't have her immunology studies so have no idea how well her immune system is functioning. NO ONE will talk to me from that office so I'm beginning to think they have lost her blood again. I am furious and making a call to the lab today. Until we get these results we are not taking Arianna out in public but are going to try and open up a little more and start seeing more family. We will however be taking he to the Heart Walk on Saturday because I will be speaking and they have asked if Arianna can attend. I will be very protective of her that day so if you go and I don' t let you hold her please don't take offense.
I think that covers everything but I'm sure I'll think of something else later. I have some errands to run so I better go. I still haven't had a chance to check on all my heart babies but I will soon!
So as you all know we are staying just as precautious. If you are sick, or even have a sniffle or cough, DON'T COME OVER!! I can't stress this enough. I don't know how many times I could get upset when people think it's nothing and still proceed to come to my house and act like everything is okay. I want you to know it's not okay. Please respect my wishes and just wait until you are symptom free. We love are daughter and are trying to do the best to keep her healthy.
With all of this being said, we still don't have her immunology studies so have no idea how well her immune system is functioning. NO ONE will talk to me from that office so I'm beginning to think they have lost her blood again. I am furious and making a call to the lab today. Until we get these results we are not taking Arianna out in public but are going to try and open up a little more and start seeing more family. We will however be taking he to the Heart Walk on Saturday because I will be speaking and they have asked if Arianna can attend. I will be very protective of her that day so if you go and I don' t let you hold her please don't take offense.
I think that covers everything but I'm sure I'll think of something else later. I have some errands to run so I better go. I still haven't had a chance to check on all my heart babies but I will soon!
Sunday, April 20, 2008
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....
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....
Thursday, January 31, 2008
The next step..
The pulmonologist came in a few hours ago and did an examination. He doesn't feel this is pneumonia either but feels there must of been some underlying problem with the lungs to begin with, then possibly catching a viral infection caused her sats to drop and respiratory distress. He said there is nothing different they are going to do as far as treating her symptoms.
The plan, so to speak, will be to get her respiratory issues cleared up and hopefully breathing on room air. He said if she doesn't tolerate room air than he doesn't have a problem sending us home on a 1/8th of oxygen. They have spread her breathing treatments to every 3 hours which she seems to be tolerating just fine. The pulmonologist said if the treatments help then he will send us home with that as well.
The tests he wants done are in chronological order are: Swallow study, pH probe, upper GI study, CT scan of her lungs, and a bronchioscopy. They might do the swallow study and pH probe while we are here. The GI doctor will have to be called for those so we will see what he thinks tomorrow. For the other studies she will need to be fully recovered before doing, so we're probably looking at weeks out.
So we are left with no answers but are definintly in contact with the right doctors. I, of course, am getting nervous and praying that this will just pass and she will come off of oxygen and we can go home and chaulk this up to a bad case of pneumonia. We still haven't met with the immunologist but I'm hoping they get ahold of him tomorrow. I guess its all hit me like a ton of bricks when the doctor said this is an ACUTE problem. When I found out about her having DiGeorge Syndrome I researched the internet and got very scared with all the information I found out. I have never looked at my daughter as a sick child, but tonight I felt reality smacking me in the face. I am still believing and standing in the Word that she will be delivered from whatever she is battling. I know that God will get us through this time and this will be just one more thing we add to thing list of miracles that God has done for us. Right now we are just taking it one day at a time.
The plan, so to speak, will be to get her respiratory issues cleared up and hopefully breathing on room air. He said if she doesn't tolerate room air than he doesn't have a problem sending us home on a 1/8th of oxygen. They have spread her breathing treatments to every 3 hours which she seems to be tolerating just fine. The pulmonologist said if the treatments help then he will send us home with that as well.
The tests he wants done are in chronological order are: Swallow study, pH probe, upper GI study, CT scan of her lungs, and a bronchioscopy. They might do the swallow study and pH probe while we are here. The GI doctor will have to be called for those so we will see what he thinks tomorrow. For the other studies she will need to be fully recovered before doing, so we're probably looking at weeks out.
So we are left with no answers but are definintly in contact with the right doctors. I, of course, am getting nervous and praying that this will just pass and she will come off of oxygen and we can go home and chaulk this up to a bad case of pneumonia. We still haven't met with the immunologist but I'm hoping they get ahold of him tomorrow. I guess its all hit me like a ton of bricks when the doctor said this is an ACUTE problem. When I found out about her having DiGeorge Syndrome I researched the internet and got very scared with all the information I found out. I have never looked at my daughter as a sick child, but tonight I felt reality smacking me in the face. I am still believing and standing in the Word that she will be delivered from whatever she is battling. I know that God will get us through this time and this will be just one more thing we add to thing list of miracles that God has done for us. Right now we are just taking it one day at a time.
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