We take Arianna for her cardiac MRI and lung CT. She has asked MANY questions including, "Mom, are they going to open up my chest?" about one hundred times. I think she remembers me telling her that they had to "put her to sleep" to do surgery so she is scared. She told me she is scared and that breaks my heart. I know its not surgery or anything but the fact that she has to be put under general anesthesia makes me sick to my stomach. The MRI should be about an hour unless the cardiologists needs to look at it more closely and the CT should be 10 mins..its right across the hall so they will wheel her across. I'll update when I get home..
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Monday, August 15, 2011
Tuesday, February 5, 2008
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.
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.
Monday, February 4, 2008
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.
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.
Sunday, February 3, 2008
Eating!!
Signing 'Dad", while wearing his hat. 
Thanks Trudy for my wish heart bear!
This is how I pass my time!
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.
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.
Saturday, February 2, 2008
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.
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.
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.....
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.....
Friday, February 1, 2008
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!
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.
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.
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.
What's wrong?!?!
So we met with the resident pulmonologist and after doing an exam he does not think this is pneumonia. He is going to get the attending involved to due further testing. He mentioned the possibility of doing a pH probe but we won't know until we met with the attending. Right now we are just trying to keep her happy and saturations up.
On a exciting note..we spent the day with Aunt Lissa and its her birthday! We had birthday cupcakes and Arianna actually ate a few bites! Every time we try to get a nap in somone comes in and wakes her up. Right now she is watching her favorite movie, "Little People". These were the same movies she watched over and over when she had her surgery. I'm so glad this is keeping her happy and entertained. Having Aunt Lissa here today has been such a big help.
Well I'm going to get some lunch now and try to relax while she watches her movie. Thank you again for checking up on us.
On a exciting note..we spent the day with Aunt Lissa and its her birthday! We had birthday cupcakes and Arianna actually ate a few bites! Every time we try to get a nap in somone comes in and wakes her up. Right now she is watching her favorite movie, "Little People". These were the same movies she watched over and over when she had her surgery. I'm so glad this is keeping her happy and entertained. Having Aunt Lissa here today has been such a big help.
Well I'm going to get some lunch now and try to relax while she watches her movie. Thank you again for checking up on us.
Peds floor
So last night at 2am they transferred us to the peds floor. By the time we got situated, had a breathing treatment, and calmed down, Arianna slept for 2 hours. It was the best two hours. They let us sleep in a pull out bed together. We are sitting here watching tv. We had no tv in the ER so this is passing some time.
She is still on 4 liters of oxygen but they plan on weaning her today. She is taking her milk and juice but won't eat, which I don't blame her. I feel so bad for her. She still sounds wheezy and breathing hard. Hopefully the antibiotics start taking affect today. I will update when we know more.
She is still on 4 liters of oxygen but they plan on weaning her today. She is taking her milk and juice but won't eat, which I don't blame her. I feel so bad for her. She still sounds wheezy and breathing hard. Hopefully the antibiotics start taking affect today. I will update when we know more.
Wednesday, January 30, 2008
In the ER
Trying to put on a happy face. Wow, where do I begin? Early this morning Arianna woke up very fussy and with labored breathing. I immediately checked her pulse ox and she was at 83%. I stayed up monitoring her and her numbers remained low and even dipped into the high 70's. I put a call into one of the cardiologists from the clinic and he said she was in respiratory distress and I needed to take her immediately to the ER.
When we got there she was satting at 84% and they put her on oxygen. They checked her sats again and was in the high 90's. We waited for 2 hours with a screaming baby just to wait another 2 hours before they did chest x-rays to see if she had pneumonia. The doctor, who by the way is a total ass, told me her x-ray wasn't good and showed some hazziness. She said this can either be pneumonia or signs of heart failure. So at this time we were really freaking out. They started breathing treatments and were going to start antibiotics. The breathing treatments really seem to help but only for a short period of time. She has been so miserable all day long and just cries and cries. By this time they had to up her oxygen to 4 liters to hold her numbers in the high 90's. They said she was going to be admitted but they were waiting for a room. They were going to call pediatric cardiology but they wanted to wait until we got situated in our room on the peds floor. Well hours go by and we were still sitting in the ER so they called the pediatric doctor to come evaluate Arianna. While giving her history Arianna seemed to be getting worse and worse. She was just laying flat on he back, staring at the ceiling with no expression on her face. Her numbers began to drop and she started looking pretty bad, they dropped to 74%....you better believe that got someones attention. I think this doctor, who is a resident, was scared out of her mind. By this time Arianna still hadn't received her antibiotics, no one had bothered to do anything for her. I am so glad this doctor was in the room when this happened. She immediatly had the attending ER doc in the room who was telling her that Arianna had already received her antibiotics. At that point I looked at her and wanted to slap her, I told her that she hadn't recieved anything and the nurses hadn't even started an IV. They told me that peds cardiology was called and Dr. Barber was on his way to do an echo. This was the same cardiologist who took care of her when she was born. So anxiously we sat here praying she wasn't in heart failure. The echo came back good, well good for her condition. Her left ventricle was vigourusly working, the right ventricle had more muscle thickening, and she has severe pulmonary insuffiency, but NO HEART FAILURE!! Thank God!
They are now thinking it has to be pneumonia, but NO ONE will confirm or deny that. They are still still giving her antibiotics. They wanted to check for sepsis because she had some signs of that, just upped her albuterol treatments to q. 2, which means, every 2 hours, and still on 4 liters of oxygen. They are hoping with a few days in the hospital getting fluids and oxygen that this will go away and we can taper her off the oxygen.
To top things off the peds floor is full so we are spending the night in the ER. Thankfully we are in a private room and sharing a bed together. So between the waking up every 2 hours for treatment and the loud ER, it will be a long night. I'm sure I forgot to type something, but its midnight and I need to try and sleep before they come in at 1am for her next treatment. We plan on being her for a few days, but I have the laptop so I'll keep you posted.
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