Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FOUR!

[newdrama12]

I know this is for wish trips and that we are done with our wish trip, but I just wanted to give an update on Madison for those of you who followed our trip report. We are at the NIH. Got here Sunday and are supposed to go home Wednesday, but that is not looking good. She has been running a low grade fever in the evening since before x-mas with a productive cough and some really yucky looking bumps. Here doctors at home ran what test they could think of and just could come up with a reason for the fevers, so I got in contact with her doctor here at the NIH and she flew us here. They did a ct scan today of her lungs and they look clear, so no pnuemonia. They have drawn enough blood to fill another body and we are waiting for most of those results to come back. One of the results came back this evening and there is something growing in her blood. They said it was some kind of bacteria, so they want to draw more blood to run that same test again. They can't find a vein to draw anymore blood so she has to go see an IV specialist tomorrow to have an IV put in. She is taking is all really well and being my little trooper as always. Just felt moved to post this update. Hope it is ok. I know there are many out there who really seemed to take a liking to Madison and I think they would want to know what is going on.

Sorry to hear that Madison isn't feeling well. Let her know that her GKTW family is thinking about and praying for her.

 

[Mom2mitokids]

I know this is for wish trips and that we are done with our wish trip, but I just wanted to give an update on Madison for those of you who followed our trip report. We are at the NIH. Got here Sunday and are supposed to go home Wednesday, but that is not looking good. She has been running a low grade fever in the evening since before x-mas with a productive cough and some really yucky looking bumps. Here doctors at home ran what test they could think of and just could come up with a reason for the fevers, so I got in contact with her doctor here at the NIH and she flew us here. They did a ct scan today of her lungs and they look clear, so no pnuemonia. They have drawn enough blood to fill another body and we are waiting for most of those results to come back. One of the results came back this evening and there is something growing in her blood. They said it was some kind of bacteria, so they want to draw more blood to run that same test again. They can't find a vein to draw anymore blood so she has to go see an IV specialist tomorrow to have an IV put in. She is taking is all really well and being my little trooper as always. Just felt moved to post this update. Hope it is ok. I know there are many out there who really seemed to take a liking to Madison and I think they would want to know what is going on.

Just because Madison had her wish trip..doesn't mean you stop posting. We want to hear how she is doing. I'm sorry to hear all that she is going through. I will be keeping her in my thoughts and prayers.

 

[jwallaceent]

Welcome!!!! I am so glad your Brooke is getting her wish. You have a beautiful family What a special bond between Jessica and Brooke!!!

Thank you so much! We are very excited!

 

[jwallaceent]

wow 3 new families today
shruley, imkksmom and jwallaceent

imkksmom just post the picture in a thread instead of your siggy
it has to be really small to fit in your siggy

my2girlsrock good luck with your next round of chemo, so glad you are 1/2 way done

Kris I understand

Thank you!

 

[tinytreasures]

praying for Madison
please keep us updated

 

[casper_jj11]

I know this is for wish trips and that we are done with our wish trip, but I just wanted to give an update on Madison for those of you who followed our trip report. We are at the NIH. Got here Sunday and are supposed to go home Wednesday, but that is not looking good. She has been running a low grade fever in the evening since before x-mas with a productive cough and some really yucky looking bumps. Here doctors at home ran what test they could think of and just could come up with a reason for the fevers, so I got in contact with her doctor here at the NIH and she flew us here. They did a ct scan today of her lungs and they look clear, so no pnuemonia. They have drawn enough blood to fill another body and we are waiting for most of those results to come back. One of the results came back this evening and there is something growing in her blood. They said it was some kind of bacteria, so they want to draw more blood to run that same test again. They can't find a vein to draw anymore blood so she has to go see an IV specialist tomorrow to have an IV put in. She is taking is all really well and being my little trooper as always. Just felt moved to post this update. Hope it is ok. I know there are many out there who really seemed to take a liking to Madison and I think they would want to know what is going on.

Big hugs going to Madison and her family.

 

[my2girlsrock]

I know this is for wish trips and that we are done with our wish trip, but I just wanted to give an update on Madison for those of you who followed our trip report. We are at the NIH. Got here Sunday and are supposed to go home Wednesday, but that is not looking good. She has been running a low grade fever in the evening since before x-mas with a productive cough and some really yucky looking bumps. Here doctors at home ran what test they could think of and just could come up with a reason for the fevers, so I got in contact with her doctor here at the NIH and she flew us here. They did a ct scan today of her lungs and they look clear, so no pnuemonia. They have drawn enough blood to fill another body and we are waiting for most of those results to come back. One of the results came back this evening and there is something growing in her blood. They said it was some kind of bacteria, so they want to draw more blood to run that same test again. They can't find a vein to draw anymore blood so she has to go see an IV specialist tomorrow to have an IV put in. She is taking is all really well and being my little trooper as always. Just felt moved to post this update. Hope it is ok. I know there are many out there who really seemed to take a liking to Madison and I think they would want to know what is going on.

I hope you get some answers & she starts to feel better soon.... Sending prayers from NY....

 

[luvmygrlz3]

I know this is for wish trips and that we are done with our wish trip, but I just wanted to give an update on Madison for those of you who followed our trip report. We are at the NIH. Got here Sunday and are supposed to go home Wednesday, but that is not looking good. She has been running a low grade fever in the evening since before x-mas with a productive cough and some really yucky looking bumps. Here doctors at home ran what test they could think of and just could come up with a reason for the fevers, so I got in contact with her doctor here at the NIH and she flew us here. They did a ct scan today of her lungs and they look clear, so no pnuemonia. They have drawn enough blood to fill another body and we are waiting for most of those results to come back. One of the results came back this evening and there is something growing in her blood. They said it was some kind of bacteria, so they want to draw more blood to run that same test again. They can't find a vein to draw anymore blood so she has to go see an IV specialist tomorrow to have an IV put in. She is taking is all really well and being my little trooper as always. Just felt moved to post this update. Hope it is ok. I know there are many out there who really seemed to take a liking to Madison and I think they would want to know what is going on.

Many prayers going up for Madison & family! PLEASE keep us posted!!

 

[syammt]

Sorry to hear that Madison isn't feeling well. Let her know that her GKTW family is thinking about and praying for her.

I have let her know and she says thank you very much. She misses GKTW.

Just because Madison had her wish trip..doesn't mean you stop posting. We want to hear how she is doing. I'm sorry to hear all that she is going through. I will be keeping her in my thoughts and prayers.

Thank you so much for letting me know you still want to know how she is doing. It helps to be able to share what all is going on, especially when we are here and I can't use my phone.

praying for Madison
please keep us updated

Thank you so much for the prayers.

Big hugs going to Madison and her family.

Thanks for the hugs. It really means a lot.

I hope you get some answers & she starts to feel better soon.... Sending prayers from NY....

Well we are getting answers if you can call them that. They are ruling out things, but no real answers yet as to why she still has the fevers. Still waiting on a lot and still more to come as far as test.

Many prayers going up for Madison & family! PLEASE keep us posted!!

Thank you so much to you and everyone for the continued prayers.

 

[syammt]

First and most important - A HUGE THANK YOU to everyone who continues to prayer and keep Madison in your thoughts.
She went today for her ct scan of her sinuses and brain and we are still waiting for those results along with more of the results to some of the blood work. They took more blood this morning and she has peed in a cup like 6times already. Her liver levels are high, but they are saying that is due to one of her meds. She is still running a fever and has the cough and some major bumps that like bad. Doc is starting her on a new antibiotic to help with the ringworm and the yeast infection. The doctors keeps telling me to get Madison to a pool, but our rec center is so expensive how do I make it work? I will figure it out though for sure.
She has a ct scan of the abdomin and pevis tomorrow with contrast which will probably make her throw up. At least they are checking everything they can think of and ruling things out. They have to get it figured out sooner or later. You would think they would be running out of things to test her for.
Oh she had to go up to ICU to have a specialist put in her IV today. They have run out of places to draw blood so they had to use an ultra sound machine to get to a deep vein in her arm. She cried and asked them to please stop. It broke my heart, but I know they had to do it.
Will update tomorrow when I know more.
Oh and we are not going home tomorrow as expected. Maybe this weekend.
Sorry to be all over the place with this update. Just typing as I think of things.

 

[brookerene]

First and most important - A HUGE THANK YOU to everyone who continues to prayer and keep Madison in your thoughts.
She went today for her ct scan of her sinuses and brain and we are still waiting for those results along with more of the results to some of the blood work. They took more blood this morning and she has peed in a cup like 6times already. Her liver levels are high, but they are saying that is due to one of her meds. She is still running a fever and has the cough and some major bumps that like bad. Doc is starting her on a new antibiotic to help with the ringworm and the yeast infection. The doctors keeps telling me to get Madison to a pool, but our rec center is so expensive how do I make it work? I will figure it out though for sure.
She has a ct scan of the abdomin and pevis tomorrow with contrast which will probably make her throw up. At least they are checking everything they can think of and ruling things out. They have to get it figured out sooner or later. You would think they would be running out of things to test her for.
Oh she had to go up to ICU to have a specialist put in her IV today. They have run out of places to draw blood so they had to use an ultra sound machine to get to a deep vein in her arm. She cried and asked them to please stop. It broke my heart, but I know they had to do it.
Will update tomorrow when I know more.
Oh and we are not going home tomorrow as expected. Maybe this weekend.
Sorry to be all over the place with this update. Just typing as I think of things.

Everyone is remembering her in prayer.... have you tried a hotel pool? Sometimes they let peoplepay to get in and it's not as expensive..... I know the Holiday Inn Express where I live does...just a crazy idea.... don't give up and don't let the drs give up....take care of yourself too.....sometimes moms forget to do that....
God Bless.

 

[blessedmom4]

First and most important - A HUGE THANK YOU to everyone who continues to prayer and keep Madison in your thoughts.
She went today for her ct scan of her sinuses and brain and we are still waiting for those results along with more of the results to some of the blood work. They took more blood this morning and she has peed in a cup like 6times already. Her liver levels are high, but they are saying that is due to one of her meds. She is still running a fever and has the cough and some major bumps that like bad. Doc is starting her on a new antibiotic to help with the ringworm and the yeast infection. The doctors keeps telling me to get Madison to a pool, but our rec center is so expensive how do I make it work? I will figure it out though for sure.
She has a ct scan of the abdomin and pevis tomorrow with contrast which will probably make her throw up. At least they are checking everything they can think of and ruling things out. They have to get it figured out sooner or later. You would think they would be running out of things to test her for.
Oh she had to go up to ICU to have a specialist put in her IV today. They have run out of places to draw blood so they had to use an ultra sound machine to get to a deep vein in her arm. She cried and asked them to please stop. It broke my heart, but I know they had to do it.
Will update tomorrow when I know more.
Oh and we are not going home tomorrow as expected. Maybe this weekend.
Sorry to be all over the place with this update. Just typing as I think of things.

Hugs for all of you, it is not easy to be so far from home. I am glad they continue to search for answers. I know many of us relate to the search to get the IV placement, it breaks my heart for Madison. Thank you for letting us know how she is doing. Prayers continue!

 

[luvmygrlz3]

I may be MIA for a bit...Lurking for the most part for the next week...
I have 2 tests next week and have quite a bit to study for. I'm going to College, taking prereqs' for the RN nursing program here and have an A&P II test along w/ a Math test and I really need to fry my brain w/ loads of studying.

I am also awaiting confirmation on my times for volunteering for the show, Extreme Makeover: Home Edition. They are coming to our town on Sunday to surprise a special family and I am wanting to help out as much as I can. I just feel like I need to pay it forward...Volunteers run GKTW and even though we haven't been yet, I feel the need to do the same for someone else.

Wish me luck! And I'll be back soon...

 

[blessedmom4]

I may be MIA for a bit...Lurking for the most part for the next week...
I have 2 tests next week and have quite a bit to study for. I'm going to College, taking prereqs' for the RN nursing program here and have an A&P II test along w/ a Math test and I really need to fry my brain w/ loads of studying.

I am also awaiting confirmation on my times for volunteering for the show, Extreme Makeover: Home Edition. They are coming to our town on Sunday to surprise a special family and I am wanting to help out as much as I can. I just feel like I need to pay it forward...Volunteers run GKTW and even though we haven't been yet, I feel the need to do the same for someone else.

Wish me luck! And I'll be back soon...

Best of Luck! I love being a nurse; however, wouldn't want to have to go through school all over again...I KNOW you will do awesome on your tests and I love that you will help with the Extreme Makeover: Home Addition. Maybe we will see you on TV when it airs!!!

 

[syammt]

The nurse had to take out the IV due to it rupturing. She was in pain (which is unusual for her) so I had the nurse come in to look at it and her arm was all swollen. So they will have to put in another one in the morning to do the ct scan tomorrow. Is going to be a long trying day for her tomorrow. Another fever tonigth also.

 

[that's nice]

The penny has been found

WHOOO HOOOOO!!!!!

I may be MIA for a bit...Lurking for the most part for the next week...

Wish me luck! And I'll be back soon...

Good luck! ... we will still be here when you get back!

The nurse had to take out the IV due to it rupturing. She was in pain (which is unusual for her) so I had the nurse come in to look at it and her arm was all swollen. So they will have to put in another one in the morning to do the ct scan tomorrow. Is going to be a long trying day for her tomorrow. Another fever tonigth also.

I hope Madison has an easier day tomorrow and I hope they get to the bottom of these fevers soon.

 

[kailatilear]

I may be MIA for a bit...Lurking for the most part for the next week...
I have 2 tests next week and have quite a bit to study for. I'm going to College, taking prereqs' for the RN nursing program here and have an A&P II test along w/ a Math test and I really need to fry my brain w/ loads of studying.

I am also awaiting confirmation on my times for volunteering for the show, Extreme Makeover: Home Edition. They are coming to our town on Sunday to surprise a special family and I am wanting to help out as much as I can. I just feel like I need to pay it forward...Volunteers run GKTW and even though we haven't been yet, I feel the need to do the same for someone else.

Wish me luck! And I'll be back soon...

Good luck on your tests next week. I understand how hard it is to find time for school, your family and yourself, especially when you have sick little ones. I ended up having to give up school for a while, hoping to return later when things calm down.

That is excellent about Extreme Home Makeover. I have often thought about applying to the show because of Abby and her bone disease, making a safe home for her, but I feel selfish applying when there are so many other families that need a home more than we do.

My feeling is that when something good and special happens to our family, we try to pay it forward, to me that is the circle of how life should work.

Abby is still in horrible pain, we are going on her 3rd day of missing school. This morning she woke up in horrible back pain and almost collapsed on the bathroom floor. She has to walk holding on to her walker just to move. She goes to her ortho dr. tomorrow and I am hoping for a TLSO brace for her back. I just want to thank everyone here for your kind words and prayers for Abby's healing.

 

[maroo]

We have a new wish trip and I just want to make sure everyone has seen it!!


blessed03 (Carter) Wish Trip MAW/?? March 5-11, 2011


!!!

 

[maroo]

I know this is for wish trips and that we are done with our wish trip, but I just wanted to give an update on Madison for those of you who followed our trip report. We are at the NIH. Got here Sunday and are supposed to go home Wednesday, but that is not looking good. She has been running a low grade fever in the evening since before x-mas with a productive cough and some really yucky looking bumps. Here doctors at home ran what test they could think of and just could come up with a reason for the fevers, so I got in contact with her doctor here at the NIH and she flew us here. They did a ct scan today of her lungs and they look clear, so no pnuemonia. They have drawn enough blood to fill another body and we are waiting for most of those results to come back. One of the results came back this evening and there is something growing in her blood. They said it was some kind of bacteria, so they want to draw more blood to run that same test again. They can't find a vein to draw anymore blood so she has to go see an IV specialist tomorrow to have an IV put in. She is taking is all really well and being my little trooper as always. Just felt moved to post this update. Hope it is ok. I know there are many out there who really seemed to take a liking to Madison and I think they would want to know what is going on.

Just because Madison had her wish trip..doesn't mean you stop posting. We want to hear how she is doing. I'm sorry to hear all that she is going through. I will be keeping her in my thoughts and prayers.

The nurse had to take out the IV due to it rupturing. She was in pain (which is unusual for her) so I had the nurse come in to look at it and her arm was all swollen. So they will have to put in another one in the morning to do the ct scan tomorrow. Is going to be a long trying day for her tomorrow. Another fever tonigth also.

Definitely keep posting!!!

We are praying for Madison!


Have they thought about doing a PICC line? Surely they have...but that is what they finally had to do for me when I was septic and in the hospital a long time?

I hope she feels much better soon!!!

 

[twinmum]

The nurse had to take out the IV due to it rupturing. She was in pain (which is unusual for her) so I had the nurse come in to look at it and her arm was all swollen. So they will have to put in another one in the morning to do the ct scan tomorrow. Is going to be a long trying day for her tomorrow. Another fever tonigth also.

I am so sorry that you are all going through this. I will include you, Madison and your family in my prayers. We are all part of this Wish Trip family and are here to support each other. Our son's trip was in November 2008 and I check in here fairly frequently, to renew our own memories, to relate to shared experiences - good and challenging - and to know that there are other parents out there giving their all for their children who face great challenges. This is a special group.

I hope things improve for Madison and you get some answers soon.