Today was our annual appointment with the immunologist. Arianna had labs drawn a few weeks ago so we have been waiting to get the results. I knew we were going to get a good report but I wasn't expecting this....we were discharged from immunology!!! Can you believe it?!?! Arianna's immune system is functioning like a typical 2 year old. :) I just about feel out my chair when he told me that. We just have to get an annual CBC done, which her pediatrician can do, and if something looks suspicious we can go in to see him. Othewise...NO MORE IMMUNOLOGIST!
When she was born I was told how sick she was going to be and how she would probably need IVIG therapy every 4 weeks for the rest of her life. A common cold would put her in the hospital and who knows what else would happen. We have come along way since those day.
So I'm sitting here today just overwhelmed with emotions. Arianna WILL go to school and have friends and do all the things a healthy child should do. Yes, we still have to worry about her heart and lungs but we don't have to feel so isolated anymore. No I won't go around you if you have the flu or a cold but I will no longer live in a bubble.
So today was a GOOD day! :)
After that wonderful report we got to take Arianna's Holter monitor back to the hospital. I'm not sure how long it will take to get the results but I'm assuming sometime next week.
I hope everyone has a wonderful weekend...I know mine has started out great!
Showing posts with label immunology. Show all posts
Showing posts with label immunology. Show all posts
Friday, August 28, 2009
Saturday, June 28, 2008
Friday morning Arianna had an appointment with her immunologist. I had alot of questions for him to help me better understand how her immune system functions in general. I asked why I wasn't told she had a low lymphocyete count and he said that is normal for kids with DiGeorge Sydnrome. He did say Arianna has good t-cell function and her recent labs showed she responded well to the diptheria vaccine and making antibodies on it's own. This is HUGE!!! He said because she responded so well to the diptheria vaccine that shows him her immune system is strong enough to handle the live vaccines. I'm still leary about giving them to her but I know how important it is for her to get these. So at this point I'm going to put my faith in God and believe she will do fine so I'm taking her in next week for her MMR then a few weeks later for her chickenpox vaccine. I'm REALLY not wanting to do this but I know she needs it. Please pray that I find peace about this as I really want her to have these vaccines so I can take her out in public a little more.
One thing the intern doctor asked was if she has had any nose bleeds, which she just several weeks ago. I had no idea why they would ask that but apparently DiGeorge kids can develop auto-immune disease, which I was aware of, but the nose bleeds can be signs of this happening. If this happen on a more frequent basis then we'll do a CBC to check her platelet count. I'm really not worried about it at this time because they normally don't see this happening until children are a little older.
All in all the appointment went rather well. The doctor gave me several books to help understand the immune system function and a really cute book for Arianna once she gets older to teach her all about her immune system. We only need to followup with immunology once a year which requires a CBC to check her levels. I asked about rechecking her immunoglobulins and he said once they see she is increasing in numbers they don't recheck them. However, he said if she is dealing with frequent colds to bring her in for a check up. He also recommends Arianna getting the synagis (RSV) shots again this winter, which will be a pain to get the insurance to approve this since children only get this up to age 2. He said with all the added risks of her heart and lung issues he really feels this is a necessity for Arianna, and to be quite honest with you I would feel alot better if they did.
After our appointment we had our first social gathering with our support group at the local zoo. Unfortunatly most of our memebers couldnt' go but we had our faithful father, Jason, show up and a new heart mom and daughter. Her daughter is 8 weeks old and the absolute cutest little thing. It was alot of fun to be around other heart families and watching the kids have a blast. My mom, sister, and nephews went as well which made it a really nice day. Here's a little video of our trip to the zoo.
After the zoo we headed over to Aunt Lissa's house to go swimming. If you don't remember we tried to get Arianna in the pool several weeks ago but the water temperature was very cold and after 2 minutes she wanted out. This time she had a blast!! She stayed in for 45 minutes until she began to shiver. Here are some pictures and a short video clip.
One thing the intern doctor asked was if she has had any nose bleeds, which she just several weeks ago. I had no idea why they would ask that but apparently DiGeorge kids can develop auto-immune disease, which I was aware of, but the nose bleeds can be signs of this happening. If this happen on a more frequent basis then we'll do a CBC to check her platelet count. I'm really not worried about it at this time because they normally don't see this happening until children are a little older.
All in all the appointment went rather well. The doctor gave me several books to help understand the immune system function and a really cute book for Arianna once she gets older to teach her all about her immune system. We only need to followup with immunology once a year which requires a CBC to check her levels. I asked about rechecking her immunoglobulins and he said once they see she is increasing in numbers they don't recheck them. However, he said if she is dealing with frequent colds to bring her in for a check up. He also recommends Arianna getting the synagis (RSV) shots again this winter, which will be a pain to get the insurance to approve this since children only get this up to age 2. He said with all the added risks of her heart and lung issues he really feels this is a necessity for Arianna, and to be quite honest with you I would feel alot better if they did.
After our appointment we had our first social gathering with our support group at the local zoo. Unfortunatly most of our memebers couldnt' go but we had our faithful father, Jason, show up and a new heart mom and daughter. Her daughter is 8 weeks old and the absolute cutest little thing. It was alot of fun to be around other heart families and watching the kids have a blast. My mom, sister, and nephews went as well which made it a really nice day. Here's a little video of our trip to the zoo.
*** Don't forget to scroll to the bottom and pause the music***
After the zoo we headed over to Aunt Lissa's house to go swimming. If you don't remember we tried to get Arianna in the pool several weeks ago but the water temperature was very cold and after 2 minutes she wanted out. This time she had a blast!! She stayed in for 45 minutes until she began to shiver. Here are some pictures and a short video clip.
I can't wait to take her swimming again!
After we were done swimming I took her out of the pool and gave her a quick bath. The water was a little cold at first but I warmed it right up. We've always taken pretty warm baths cause I can't stand the cold water. After the bath I got her out of the bath and dressed my sister was holding her and I looked at her feet and they were BLUE!!! I don't know why this happened since she took a warm bath and the house wasn't that cold. I calmly freaked out, which I was really proud of myself, and got her wrapped up in a blanket. For a child that hates blankets she just stayed wrapped up in the blanket and didn't move. My sister took her outside to warm up and within 5 mintues her color was back. It was a total flash back to the weeks right before her surgery. I know it wasn't anything serious, thank God, but it made me realize, yet again, how fragile her life really is.
Besides that little incident I have to say Friday was one of the best days I've had in a VERY long time. After Arianna gets her shots, and I'm praying she does fine with them, I'm really going to try and start living a little more 'normal'..... if there is even such a thing as 'normal'.
One more thing I forgot to mention. The other night I decided to check Arianna's sats while sleeping and she was pulling a 94!!!! This just tells me her lungs are healing and all this isolation is really paying off!
Hope you all are doing well. I have some good news to report. Our heart friend, Drew, was released from the hospital on Friday but he has to stay at the local hotel. I know they are eager to get home but I'm happy Drew is actually at the hotel with is family instead of the hospital. He still has a PICC line that his parents have to administer IV antibiotics but they are the best parents and have no problem doing that themselves. It's been about 37 days since his open-heart surgery and I know his family is eager to go home. Drew has a few more tests to run next week and hopefully he'll get the okay to go home.
Friday, May 9, 2008
Twists & Turns
Where does it stop!
This is how my day went:
1. Leave 2 messages for the immunology nurse.
2. Call Lab Corp and speak to the same manager I spoke with last time. She tells me she'll look into it and call me back.
3. Get a call back from immunology nurse and this is what she says: She is sorry that no one in the office realized it was the labs from last year, however, the immunologist says to still get the MMR vaccine. She goes on to explain that once these labs are checked the levels never change and since Arianna had a moderate response last time, she is fine to get the MMR. I tell her I am not satisfied with this answer and demand to know more information before giving this vaccine. I ask her if this test doesn't change then WHY would he have us do it again. She said, "Well maybe he didn't know she had them done." This is when I lost it. We have met him before and he has the labs in her chart. The only way he wouldn't know was if he didn't look at her chart and if that is the case, then I don't want him taking care of my daughter. I was PISSED!!! I told her I am at the point of taking my daughter out of town to make sure we are getting proper care. (Kathy...I was just talking to Robert today about going to CHOP.) She asked me what I want her to do and I said...nothing. We had an appointment to see the pediatrician this afternoon and I wanted to talk with her first before doing anything.
4. I talk to Robert about the possibility of going to Children's Hospital of Philadelphia (CHOP) because they specialize in 22q Deletion.
5. I decide to call our previous immunologist to see if he would talk to me about our current situation and give us his advice. (It's a long shot but I felt I needed to try) I look at some old labs in my charts and see a fax that he had sent to Lab Corp last year. I called the number, thinking it was his office, and to my surprise Dr. Lahood answers the phone. I quickly realize this is his cell phone I just called. I explain who I am and apologize for calling on his cell but this was a number I had in my charts. I went over everything with him and told him I really value his opinion. He agreed with everything our immunologist said so I felt alot better about getting the MMR today. He tells me to call him any time if I have questions. What a nice man! You may be wondering why I left him...and so am I. (But honestly this immunologist doesn't practice at the hospital we take Arianna to. And our immunologist now is supposedly one of the best...could of fooled me.
6. So I'm on the way to the pediatrician appointment and I get a call back from Lab Corp. Guess what...they found the CORRECT labs that were done in May of 2008. I ask her to fax them to the pediatricians office since we were on are there.
5. We get there and there is no fax.
6. We talk to the pediatrician who is just confused as to why we are having such a hard time with the immunologist. She asked me, "What did you do so wrong in your life to deserve this?" Joking of course, but now I'm beginning to wonder myself. We go over EVERYTHING and she told me she just doesn't feel comfortable giving Arianna the MMR today. I ask her about doing the shots separate so she is looking into that for me. We then talk about the pulmonary appointment she is scheduling for us and it looks like we are going to try for next Thursday. She took the liberty of printing our the emails that have been done between herself and the pulmo. I just LOVE this doc! Last week she asked us to email her a list of questions, which she forwarded to the pulmo to read before our appointment. One of our questions was if we needed to have a pulmonary and cardiology consult together, just because the heart and lungs work so closely together. The cardiologist said he wouldn't mind doing this a few months back. The pulmo replied saying he thinks that would be a great idea. So we are having the cardiologist, pulmonologist, pediatrician, and myself at this meeting next week. So hopefully we can get some answers. Now only if we could find a good immunologist. Highly unlikely :(
7. Next our pediatrician takes a listen to Arianna and comments on her murmur. I ask if I could take a listen with the stethoscope. She said I should listen a normal heart first to hear the difference..since I have a murmur I listen to our pedi's heart then Arianna. Wow...what a difference that is. It's weird because it's a different type of murmur than before her surgery...of course thats because the VSD is patched, but it still brought back some bad memories. Right before Arianna's OHS her murmur was so loud I didn't have to put my ear to her chest to hear it and she sounded like a washing machine. It breaks my heart that my baby doesn't have a normal heart but I'm just so thankful that she is doing well and thriving. That reminds me...are you ready...she weighs 19 pounds 8 ozs!!! I'm so proud of my baby girl. I think we'll have a celebration when she hits the big 2-0 mark!!!
7. So the pedi goes to check the fax and still nothing. UGH! I call Lab Corp and after waiting for 5 minutes I get disconnected. I call back and no answer. I leave a message for them to re fax it and we had to leave the peds office before talking to the pediatrician again (she had to step into another appointment since I was just on the phone and she had patients waiting)
8. We get to my Nana's to check on her and I get a call from the pedi. She received the fax...everything looks within range from what she can tell. There was one thing that was low but she said that is normal...I'll have to find out when I get my copy. She says she feels better having these results and is going to look into the separate vaccines and get back with me. I asked her to send me a copy in the mail which I'll probably get next Tuesday. Once I have the results I'll put a call into the immunologist and see what he thinks.
9. We then had a wonderful evening at my Nana's and we're just so thankful she is doing so well.
10. We drove home, Arianna feel asleep in the car, but woke up after getting home, and the last time I checked Robert was holding her trying to get her to sleep.
I'm done...Ta Da!!!
I know I could of summarized that up better but I guess I'm the technical type of person and like to spell it out for everyone.
Now I am just planning on enjoying my weekend. Tomorrow night I am going to a Ballet with my mom, dad, and sister. It's our mothers day present. I was in ballet as a child (only for one year but LOVED it). I have always wanted to see a real ballet and tomorrow I will! Plus I could really use a break from all this doctor stuff. So tomorrow night it will be Daddy Night for Arianna. They will have a blast as always. I still have a hard time leaving her though. It's not very often I do that.
I want to wish all you mothers a Happy Mother's Day! I plan on getting some more pictures on here soon. I'm still unpacking and been really busy with the support group. Love you all!
This is how my day went:
1. Leave 2 messages for the immunology nurse.
2. Call Lab Corp and speak to the same manager I spoke with last time. She tells me she'll look into it and call me back.
3. Get a call back from immunology nurse and this is what she says: She is sorry that no one in the office realized it was the labs from last year, however, the immunologist says to still get the MMR vaccine. She goes on to explain that once these labs are checked the levels never change and since Arianna had a moderate response last time, she is fine to get the MMR. I tell her I am not satisfied with this answer and demand to know more information before giving this vaccine. I ask her if this test doesn't change then WHY would he have us do it again. She said, "Well maybe he didn't know she had them done." This is when I lost it. We have met him before and he has the labs in her chart. The only way he wouldn't know was if he didn't look at her chart and if that is the case, then I don't want him taking care of my daughter. I was PISSED!!! I told her I am at the point of taking my daughter out of town to make sure we are getting proper care. (Kathy...I was just talking to Robert today about going to CHOP.) She asked me what I want her to do and I said...nothing. We had an appointment to see the pediatrician this afternoon and I wanted to talk with her first before doing anything.
4. I talk to Robert about the possibility of going to Children's Hospital of Philadelphia (CHOP) because they specialize in 22q Deletion.
5. I decide to call our previous immunologist to see if he would talk to me about our current situation and give us his advice. (It's a long shot but I felt I needed to try) I look at some old labs in my charts and see a fax that he had sent to Lab Corp last year. I called the number, thinking it was his office, and to my surprise Dr. Lahood answers the phone. I quickly realize this is his cell phone I just called. I explain who I am and apologize for calling on his cell but this was a number I had in my charts. I went over everything with him and told him I really value his opinion. He agreed with everything our immunologist said so I felt alot better about getting the MMR today. He tells me to call him any time if I have questions. What a nice man! You may be wondering why I left him...and so am I. (But honestly this immunologist doesn't practice at the hospital we take Arianna to. And our immunologist now is supposedly one of the best...could of fooled me.
6. So I'm on the way to the pediatrician appointment and I get a call back from Lab Corp. Guess what...they found the CORRECT labs that were done in May of 2008. I ask her to fax them to the pediatricians office since we were on are there.
5. We get there and there is no fax.
6. We talk to the pediatrician who is just confused as to why we are having such a hard time with the immunologist. She asked me, "What did you do so wrong in your life to deserve this?" Joking of course, but now I'm beginning to wonder myself. We go over EVERYTHING and she told me she just doesn't feel comfortable giving Arianna the MMR today. I ask her about doing the shots separate so she is looking into that for me. We then talk about the pulmonary appointment she is scheduling for us and it looks like we are going to try for next Thursday. She took the liberty of printing our the emails that have been done between herself and the pulmo. I just LOVE this doc! Last week she asked us to email her a list of questions, which she forwarded to the pulmo to read before our appointment. One of our questions was if we needed to have a pulmonary and cardiology consult together, just because the heart and lungs work so closely together. The cardiologist said he wouldn't mind doing this a few months back. The pulmo replied saying he thinks that would be a great idea. So we are having the cardiologist, pulmonologist, pediatrician, and myself at this meeting next week. So hopefully we can get some answers. Now only if we could find a good immunologist. Highly unlikely :(
7. Next our pediatrician takes a listen to Arianna and comments on her murmur. I ask if I could take a listen with the stethoscope. She said I should listen a normal heart first to hear the difference..since I have a murmur I listen to our pedi's heart then Arianna. Wow...what a difference that is. It's weird because it's a different type of murmur than before her surgery...of course thats because the VSD is patched, but it still brought back some bad memories. Right before Arianna's OHS her murmur was so loud I didn't have to put my ear to her chest to hear it and she sounded like a washing machine. It breaks my heart that my baby doesn't have a normal heart but I'm just so thankful that she is doing well and thriving. That reminds me...are you ready...she weighs 19 pounds 8 ozs!!! I'm so proud of my baby girl. I think we'll have a celebration when she hits the big 2-0 mark!!!
7. So the pedi goes to check the fax and still nothing. UGH! I call Lab Corp and after waiting for 5 minutes I get disconnected. I call back and no answer. I leave a message for them to re fax it and we had to leave the peds office before talking to the pediatrician again (she had to step into another appointment since I was just on the phone and she had patients waiting)
8. We get to my Nana's to check on her and I get a call from the pedi. She received the fax...everything looks within range from what she can tell. There was one thing that was low but she said that is normal...I'll have to find out when I get my copy. She says she feels better having these results and is going to look into the separate vaccines and get back with me. I asked her to send me a copy in the mail which I'll probably get next Tuesday. Once I have the results I'll put a call into the immunologist and see what he thinks.
9. We then had a wonderful evening at my Nana's and we're just so thankful she is doing so well.
10. We drove home, Arianna feel asleep in the car, but woke up after getting home, and the last time I checked Robert was holding her trying to get her to sleep.
I'm done...Ta Da!!!
I know I could of summarized that up better but I guess I'm the technical type of person and like to spell it out for everyone.
Now I am just planning on enjoying my weekend. Tomorrow night I am going to a Ballet with my mom, dad, and sister. It's our mothers day present. I was in ballet as a child (only for one year but LOVED it). I have always wanted to see a real ballet and tomorrow I will! Plus I could really use a break from all this doctor stuff. So tomorrow night it will be Daddy Night for Arianna. They will have a blast as always. I still have a hard time leaving her though. It's not very often I do that.
I want to wish all you mothers a Happy Mother's Day! I plan on getting some more pictures on here soon. I'm still unpacking and been really busy with the support group. Love you all!
Thursday, May 8, 2008
WARNING - This is not a nice post
I am so upset tonight and have to fill you in on the most recent news. I received the labs today and was looking over her numbers. This is what it said:
Concanavalin A (Con A) - CD4 Activation Arianna's Results - 574 (Reference range is >136)
Lymphocyte Activation
Unstimulated CD4 - 7
Phytohemaglutinin (PHA) - CD4 Activation Results - 338 (Reference range >225)
The interpretation says:
<226 Low Immune Cell Response
226-524 Moderate Immune Cell Response
>524 Strong or high level of immune Cell Response
So I was happy to see she fell withing the moderate range. I am really clueless when it comes to the immunology part of her care and feel like I am going crazy trying to figure it out. The immunologist finally calls and goes on and on about how he hates Lab Corp and so happy we finally have the results. He said Arianna was good to get the MMR. When I asked about getting out of isolation he wouldn't give me a straight answer. He just said she is a DiGeorge kid therefor she will get sick more often if we have her around other kids. He says she has DiGeorge and there is nothing we can do about that so it's up to me where I want to take her. Well that makes me feel horrible because we've been in isolation for 13 out of the 17 months she's been alive. I don't want her to get sick, and we can't really let her get sick because we still have no idea about her lung function. He told me we just need to follow up in 1 year. I asked about her IgG levels and he said those are her B-cells and they were last checked in January and they were within range, so not to worry. He reassures me that Arianna can have the MMR vaccine and is not at any more of a risk than a normal child.
Okay...so heres where it gets ugly. When I initially looked at the lab work I noticed our old immunologist name on the record, I didn't think twice and just reviewed the results, stuck the paper in her medical book and planned on cross referencing her results to the same labs that were done last year. I finally get some time and decide to go take a look. Mind you we have an appointment tomorrow to go gether MMR vaccine. I start looking more into the fact that the wrong immunologists name is on this report, which is in all caps and righ ton the top of the page. I then look at the date and see...4/18/2007. I look down and see her age: 4 months. I realize these are the reports from last year. WTF?!?!?! I checked her levels from last year and sure enough they were exactly the same. So the stupid doctor didn't realize the wrong date and the fact that a different doctors name was on the record. I'm beginning to wonder if he even looked at the labs. I am SO PISSED!! This is the doctor I tried so hard to see last year. He is supposedly the best immunologist in AZ and to be honest we are thinking about switching back to our initial immunologist. I am just so pissed that we could have potentially given Arianna the MMR tomorrow and what would of happened then? If it wasn't for me keeping records and having NO faith in this doctor (which is a horrible feeling to have) there could of been a bad outcome. I am SO pissed and plan on keeping our pediatrician appointment to discuss everything. Mind you, we are still trying to find out what is going on with her lungs. We are to see a different pulmo for a second opinion. We still have the measeles outbreak and with all the unknowns still, we are still in isolation. UGH!!! I want to scream at someone so bad. I am overwhelmed with all of this and just wish people would get this right. I am so upset that Arianna will have to have a blood draw again and I don't feel confident that they will get it done thistime. This is the 3rd time this lab has screwed up and our hospital has screwed up 1 time as well. I feel like I'm asking for some crazy test that only MY daughter needs. I know there are other DiGeorgekids out there so why is this so difficult?!?!? Please does anyonehave advice? I feel like moving to a new city just to get doctors that actually know how to do their job.
On a good note, my Nana was discharged from the hospital and at home. She is doing well but needs to have around the clock help. Thank goodness for such a great family. So I will be spending my morning with her but it will be nice to get out the house and be with my Nana.
I am so exhausted and just wish I could sleep through tomorrow and act like everything is fine.
Concanavalin A (Con A) - CD4 Activation Arianna's Results - 574 (Reference range is >136)
Lymphocyte Activation
Unstimulated CD4 - 7
Phytohemaglutinin (PHA) - CD4 Activation Results - 338 (Reference range >225)
The interpretation says:
<226 Low Immune Cell Response
226-524 Moderate Immune Cell Response
>524 Strong or high level of immune Cell Response
So I was happy to see she fell withing the moderate range. I am really clueless when it comes to the immunology part of her care and feel like I am going crazy trying to figure it out. The immunologist finally calls and goes on and on about how he hates Lab Corp and so happy we finally have the results. He said Arianna was good to get the MMR. When I asked about getting out of isolation he wouldn't give me a straight answer. He just said she is a DiGeorge kid therefor she will get sick more often if we have her around other kids. He says she has DiGeorge and there is nothing we can do about that so it's up to me where I want to take her. Well that makes me feel horrible because we've been in isolation for 13 out of the 17 months she's been alive. I don't want her to get sick, and we can't really let her get sick because we still have no idea about her lung function. He told me we just need to follow up in 1 year. I asked about her IgG levels and he said those are her B-cells and they were last checked in January and they were within range, so not to worry. He reassures me that Arianna can have the MMR vaccine and is not at any more of a risk than a normal child.
Okay...so heres where it gets ugly. When I initially looked at the lab work I noticed our old immunologist name on the record, I didn't think twice and just reviewed the results, stuck the paper in her medical book and planned on cross referencing her results to the same labs that were done last year. I finally get some time and decide to go take a look. Mind you we have an appointment tomorrow to go gether MMR vaccine. I start looking more into the fact that the wrong immunologists name is on this report, which is in all caps and righ ton the top of the page. I then look at the date and see...4/18/2007. I look down and see her age: 4 months. I realize these are the reports from last year. WTF?!?!?! I checked her levels from last year and sure enough they were exactly the same. So the stupid doctor didn't realize the wrong date and the fact that a different doctors name was on the record. I'm beginning to wonder if he even looked at the labs. I am SO PISSED!! This is the doctor I tried so hard to see last year. He is supposedly the best immunologist in AZ and to be honest we are thinking about switching back to our initial immunologist. I am just so pissed that we could have potentially given Arianna the MMR tomorrow and what would of happened then? If it wasn't for me keeping records and having NO faith in this doctor (which is a horrible feeling to have) there could of been a bad outcome. I am SO pissed and plan on keeping our pediatrician appointment to discuss everything. Mind you, we are still trying to find out what is going on with her lungs. We are to see a different pulmo for a second opinion. We still have the measeles outbreak and with all the unknowns still, we are still in isolation. UGH!!! I want to scream at someone so bad. I am overwhelmed with all of this and just wish people would get this right. I am so upset that Arianna will have to have a blood draw again and I don't feel confident that they will get it done thistime. This is the 3rd time this lab has screwed up and our hospital has screwed up 1 time as well. I feel like I'm asking for some crazy test that only MY daughter needs. I know there are other DiGeorgekids out there so why is this so difficult?!?!? Please does anyonehave advice? I feel like moving to a new city just to get doctors that actually know how to do their job.
On a good note, my Nana was discharged from the hospital and at home. She is doing well but needs to have around the clock help. Thank goodness for such a great family. So I will be spending my morning with her but it will be nice to get out the house and be with my Nana.
I am so exhausted and just wish I could sleep through tomorrow and act like everything is fine.
Friday, May 2, 2008
More bloodwork needed...
So I just got off the phone with the immunology nurse and this time they didn't lose the blood but they forgot to get a CBC drawn. I'm not sure how all this works and the immunologist is out of town so I'll have to wait to ask questions until he gets back. UGH!! I am thankful for the nurse who is trying to help me get things figured out. This still doesn't take away the fact that my baby will need to have ANOTHER blood draw. I am literally in tears over this. I can't stand that she has to have repeat blood draws because they keep messing up. :( I'm waiting to hear back from our pediatrician because she is the one who will coordinate with the labs on which tubes and such need to be drawn.
I also put a call into Lab Corp and spoke with the manager about this and she is going to look into it herself and get back with me. I really feel like no one cares and that is an awful feeling.
Oh I almost forgot....the nurse told me the immunologist said if I wanted to give Arianna the MMR vaccine, it was up to me but there is a risk. CAN YOU BELIEVE THIS GUY!!! Yeah, like I'll take that kind of risk. I have seriously had it with these doctors. I told this nurse that was ridiculous for him to say that and NO I won't take that kind of risk. I will wait another 2 weeks in hope that they get it right this time.
On a good note...I just got the shirts delivered for our Heart Walk tomorrow. So if you in Tucson and want to join us just meet me at the Tucson Mall at 7:45am (I know it's really early, but be glad you don't have to be there at 7am like me) You can park by American Home Furniture and you will see the tent from there. If you have any problems finding the place just give me a call at 520-406-5655. I will be speaking sometime around 7:30am and I'm so exciting to be taking Arianna on stage with me!!! I will post with pictures after we get home.
I also put a call into Lab Corp and spoke with the manager about this and she is going to look into it herself and get back with me. I really feel like no one cares and that is an awful feeling.
Oh I almost forgot....the nurse told me the immunologist said if I wanted to give Arianna the MMR vaccine, it was up to me but there is a risk. CAN YOU BELIEVE THIS GUY!!! Yeah, like I'll take that kind of risk. I have seriously had it with these doctors. I told this nurse that was ridiculous for him to say that and NO I won't take that kind of risk. I will wait another 2 weeks in hope that they get it right this time.
On a good note...I just got the shirts delivered for our Heart Walk tomorrow. So if you in Tucson and want to join us just meet me at the Tucson Mall at 7:45am (I know it's really early, but be glad you don't have to be there at 7am like me) You can park by American Home Furniture and you will see the tent from there. If you have any problems finding the place just give me a call at 520-406-5655. I will be speaking sometime around 7:30am and I'm so exciting to be taking Arianna on stage with me!!! I will post with pictures after we get home.
Tuesday, April 1, 2008
Are you serious?!?!
Okay, I know hate is a strong word but I really do hate Lab Corp. I talked to the immunology nurse again today and she spoke with the manager at Lab Corp who said Arianna's labs are no where to be found. How do you draw 3 viles of blood from a child, or anyone for that matter, and LOSE the viles. If you can't tell...I am pissed!!! I told her I was sick of Lab Corp and asked if we could go somewhere else. I talked to my insurance company and they said all I need is a prior authorization to have them drawn at the hospital. So the wonderful immunology nurse is putting that together and we're hoping this means we can go to the hospital from now on. I'm hoping we can have this approved before next Tuesday since Arianna will be there for her CT's and scope. It's just not right having to subject a child to numberous blood draws. UGH!
Friday, March 7, 2008
You'll never believe what I did
So our morning started out pretty good. We had to get up early for a doctor appointment. All was going welll - headed out the door, realized I had to put the car seat in my car because the van is not running, get the car seat in, put all the bags in the car, get Arianna strapped in the carseat, shut the door to realize.....I LOCKED MY KEYS IN THE CAR!!! I had no way of getting in the car and there was my precious baby sitting so nicely in her carseat wondering why in the world I was staring at her through the window. Thank goodness I had a spare key to the house hidden somewhere so I was able to get inside and get the house phone (since I locked my purse in the car I had no cell phone). I called my mom, but no answer, and for some reason I couldn't remember Roberts number so the only number my stupid brain knew to call was 911. I was crying and felt like an idiot. 5 minutes later I had the biggest firetruck with 4 firefighters at my house trying to open the car door. Well apparently my car is the safest car in the world and the firemen couldn't even get the door open. I finally got ahold of my mom and she gave me Roberts number so I called him and told him he needed to come home to open the car because I locked Arianna in the car!!! He was 20 minutes away so I was a nervous wreck, trying to calm Arianna but she was scared to death because she could see all these men attacking the vehicle and she had no clue why mommy couldn't open the door and get her. The nice thing was that I was able to use sign to communicate with her. I told her the men were "good" and they were going to "help her". She immediatly calmed down after I told her that and seemed to be less scared. It took them 25 minutes to open the door and they felt pretty dumb cause it took them that long. They said if it was summer they would of already broke the window. Good thing they didn't have to do that. So that was my stupid mommy moment of the day. I still can't believe I did that. I feel bad for the 911 dispatcher...I was crying so bad when I called she calmed me down then told me she too has locked her baby in the car once and not too feel bad. I'm just happy she at least had her paci during this whole ordeal. Oh man...what a morning.
I tried calling the immunologist office to see if we could still make it but no one answered so we decided to just show up anyways and try to be seen. I think after they heard the sob story of how I locked Arianna in the car they felt bad so decided to squeeze us in. LOL! The doctor started telling me how children with DiGeorge Syndrome can develop autoimmune disorders and he will be keeping an eye out for that. I asked him why her IgE levels were found to be abnormally high and he said they really weren't that high and that this is normal in children with DiGeorge. I have a really hard time understanding the immunology stuff so I put alot of trust into this doctor. This can possibly mean she will develop allergies as she gets older but it can also mean nothing. Just wait and see type thing....seems to be the theme for these doctors. He did order some labs to be done which will check her T-cell function and regular labs to make sure there are no red flags. I couldn't get these labs drawn today because the cells would have died before reaching the lab so we will be going on Monday to get labs drawn. We also have her hearing test on Monday so we'll probably get the labs done early so she has time to calm down before going in the afternoon for the hearing test.
Oh yeah, I did ask the immunologist about exposing Arianna to other children and he didn't give me a yes or no answer. I told him it would be nothing like putting her in daycare but maybe letting her go to the church daycare (supervised by myself or my mom, since I'm not ready to just hand her over). He said that church daycares are worse than if I put her in daycare 5 days a week. The best way I can explain this is if there were 10 kids who go to 10 different daycares during the week then they come to church, then technically Arianna is being exposed to 10 different daycares. People don't realize they can be caring a virus without having symptoms. I figured since her levels are good then we wouldn't have to worry about her immunity but that is not the case. He said no matter what, she is a DiGeorge child, which means she was born with some of her thymus missing and therefor means she is missing part of her immune system. No matter what we do she will pick up colds/virus more often than healthy children. It's up to us if we decide to expose her to these things and I for one don't want to. He definintly recommends keeping her away from school age children till RSV season is over. There is a more serious threat with her since we don't know what caused her respiratory distress and low saturations a few weeks ago. So...with this being said we are still in quarantine, which I like to call it, and holding out until the RSV season is over. This is a small price to pay for the health of our child. The last thing we need right now is for her to get sick right before these upcoming tests. So for those of you we haven't been able to see please don't think it's because we don't want to see you all its just what we have to do in order to keep our baby girl well.
I tried calling the immunologist office to see if we could still make it but no one answered so we decided to just show up anyways and try to be seen. I think after they heard the sob story of how I locked Arianna in the car they felt bad so decided to squeeze us in. LOL! The doctor started telling me how children with DiGeorge Syndrome can develop autoimmune disorders and he will be keeping an eye out for that. I asked him why her IgE levels were found to be abnormally high and he said they really weren't that high and that this is normal in children with DiGeorge. I have a really hard time understanding the immunology stuff so I put alot of trust into this doctor. This can possibly mean she will develop allergies as she gets older but it can also mean nothing. Just wait and see type thing....seems to be the theme for these doctors. He did order some labs to be done which will check her T-cell function and regular labs to make sure there are no red flags. I couldn't get these labs drawn today because the cells would have died before reaching the lab so we will be going on Monday to get labs drawn. We also have her hearing test on Monday so we'll probably get the labs done early so she has time to calm down before going in the afternoon for the hearing test.
Oh yeah, I did ask the immunologist about exposing Arianna to other children and he didn't give me a yes or no answer. I told him it would be nothing like putting her in daycare but maybe letting her go to the church daycare (supervised by myself or my mom, since I'm not ready to just hand her over). He said that church daycares are worse than if I put her in daycare 5 days a week. The best way I can explain this is if there were 10 kids who go to 10 different daycares during the week then they come to church, then technically Arianna is being exposed to 10 different daycares. People don't realize they can be caring a virus without having symptoms. I figured since her levels are good then we wouldn't have to worry about her immunity but that is not the case. He said no matter what, she is a DiGeorge child, which means she was born with some of her thymus missing and therefor means she is missing part of her immune system. No matter what we do she will pick up colds/virus more often than healthy children. It's up to us if we decide to expose her to these things and I for one don't want to. He definintly recommends keeping her away from school age children till RSV season is over. There is a more serious threat with her since we don't know what caused her respiratory distress and low saturations a few weeks ago. So...with this being said we are still in quarantine, which I like to call it, and holding out until the RSV season is over. This is a small price to pay for the health of our child. The last thing we need right now is for her to get sick right before these upcoming tests. So for those of you we haven't been able to see please don't think it's because we don't want to see you all its just what we have to do in order to keep our baby girl well.
Wednesday, March 5, 2008
Another day...
Not too much going on around here. I had a rough day yesterday but feeling a lot better today. I guess being a stay at home mom can get to you at times and when your child does not want anyone but you ALL the time you don’t get much of a break. Don’t get me wrong I LOVE being home with Arianna but I think I need to start getting some mommy time so I don’t go nuts.
Arianna did have a little accident yesterday and hit her eye on the computer desk. She got the sharp metal edge and put a nice gash in her eyebrow. Poor baby she was bleeding like crazy and kind of freaked me out. I think this is her first official boo boo..well besides the huge scar across her chest. Here’s a picture of her today, sporting her bandaid and her big smile under that paci!
So for those of you who remember my comment about Arianna sleeping with us till she’s 15, well I decided to try and get her to sleep in her bed….but here’s the catch…it’s really an exstension of our bed. She has one of those 3-1 cribs, which turn into a toddler bed/daybed, then a full-size head/foot board. REALLY NICE! So I decided to ask Robert to convert the crib into a daybed and push it right up against our bed. It’s actually the same height with just a small gap in between beds so I just stuffed a blanket to fill that up. So last night was the first night sleeping this way and she stayed in her bed the whole night. She woke up a few times, rolled over, felt my face then went back to sleep. It was so nice not being kicked in the head or stomach all night. She is a very wild sleeper and normally ends up with her head at the opposite end, which she did last night. I know technically she is still sleeping with us but it’s a step out of our bed.
Today we were suppose to have speech therapy but after careful consideration we have decided to look for a different type of therapy. We still have Janet, Arianna’s OT, which works a lot with her feeding and oral motor and Arianna has shown a huge improvement in these areas. She has had 5 days of excellent eating. She is totally into feeding her self with utensils...it's the cutest/messiest thing ever! They are still looking for a new therapist and don’t know how long it will take to find another one. Even with Arianna’s signing the communication barrier is becoming more of an issue for us. I am trying my best to learn as many signs as I can so we don’t have the frustrations. Guess I need to start buying the Signing Time videos for her since she knows all the signs from the Baby Signing Time videos. It was so cute she signed “baby doll” today. This is good to see her putting the two signs together. (Hey Pam, how did Madison become so good with her signing? I’m open to suggestions!)
I guess that’s it for us. She just laid down for her afternoon nap and I’m seriously thinking about joining, her but I have way too much to do. The only thing going on this week is our appointment with the immunologist…yuck..we’re always given a lab slip when we leave his office. ☹ To be honest, I forgot which tests need to be done. Oh well I’ll find out on Friday. Hey Kathy…ever get Isaac’s labs drawn? Welll better get off of here. Thanks for checking up on us!
Arianna did have a little accident yesterday and hit her eye on the computer desk. She got the sharp metal edge and put a nice gash in her eyebrow. Poor baby she was bleeding like crazy and kind of freaked me out. I think this is her first official boo boo..well besides the huge scar across her chest. Here’s a picture of her today, sporting her bandaid and her big smile under that paci!
So for those of you who remember my comment about Arianna sleeping with us till she’s 15, well I decided to try and get her to sleep in her bed….but here’s the catch…it’s really an exstension of our bed. She has one of those 3-1 cribs, which turn into a toddler bed/daybed, then a full-size head/foot board. REALLY NICE! So I decided to ask Robert to convert the crib into a daybed and push it right up against our bed. It’s actually the same height with just a small gap in between beds so I just stuffed a blanket to fill that up. So last night was the first night sleeping this way and she stayed in her bed the whole night. She woke up a few times, rolled over, felt my face then went back to sleep. It was so nice not being kicked in the head or stomach all night. She is a very wild sleeper and normally ends up with her head at the opposite end, which she did last night. I know technically she is still sleeping with us but it’s a step out of our bed.
Today we were suppose to have speech therapy but after careful consideration we have decided to look for a different type of therapy. We still have Janet, Arianna’s OT, which works a lot with her feeding and oral motor and Arianna has shown a huge improvement in these areas. She has had 5 days of excellent eating. She is totally into feeding her self with utensils...it's the cutest/messiest thing ever! They are still looking for a new therapist and don’t know how long it will take to find another one. Even with Arianna’s signing the communication barrier is becoming more of an issue for us. I am trying my best to learn as many signs as I can so we don’t have the frustrations. Guess I need to start buying the Signing Time videos for her since she knows all the signs from the Baby Signing Time videos. It was so cute she signed “baby doll” today. This is good to see her putting the two signs together. (Hey Pam, how did Madison become so good with her signing? I’m open to suggestions!)
I guess that’s it for us. She just laid down for her afternoon nap and I’m seriously thinking about joining, her but I have way too much to do. The only thing going on this week is our appointment with the immunologist…yuck..we’re always given a lab slip when we leave his office. ☹ To be honest, I forgot which tests need to be done. Oh well I’ll find out on Friday. Hey Kathy…ever get Isaac’s labs drawn? Welll better get off of here. Thanks for checking up on us!
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