Julia's neutrophil count went up to 80 today from 10 yesterday, so we had some improvement. She went to school again today, game room this afternoon, & Bingo tonight...busy day!! Her white blood count basically stayed the same. The doctors want to see a couple of days of upward swings in her blood counts before she can come home. Hope to be home soon!!
Love,
Sharon & Julia
Thursday, May 14, 2009
Wednesday, May 13, 2009
5/13/09-FROM ATLANTA
Dear friends,
Julia's bloods counts are still very low. Her neutrophil count is only 10 as of this morning, so she cannot go home until those counts start to rise. She had a good day. She went to the school here from 10:00-12:00 and worked on some school work we brought with us & some that the school faxed up here for her. It's amazing how busy they keep children here. She beat me at a game of battle ship, did a colorful sand art project, played video games...a day goes by so quickly. I guess the hard part of our day was when they had to re-access her port. They took the port access out this morning, because it had been there for a week. She was able to be disconnected from her I.V. pole for a couple of hours while she went to school. But when they had to re-access it, she got very upset & said it hurt. She fought it pretty bad, which was very upsetting to see. The most we could get out of her was that her skin hurt at the sight. After they finished she was fine. ???
I just met a new family whose daughter was diagnosed yesterday with A.L.L. They were desperate for information. I was actually able to help her with info along with my friend, Sarah, who has been here for 5-6 months. I remember so well how we felt 2 months ago today, on March, Friday, the 13th. Have a good evening, and please pray for white blood cells for Julia & so many other children on this floor that desperately need them.
Love,
Sharon
Julia's bloods counts are still very low. Her neutrophil count is only 10 as of this morning, so she cannot go home until those counts start to rise. She had a good day. She went to the school here from 10:00-12:00 and worked on some school work we brought with us & some that the school faxed up here for her. It's amazing how busy they keep children here. She beat me at a game of battle ship, did a colorful sand art project, played video games...a day goes by so quickly. I guess the hard part of our day was when they had to re-access her port. They took the port access out this morning, because it had been there for a week. She was able to be disconnected from her I.V. pole for a couple of hours while she went to school. But when they had to re-access it, she got very upset & said it hurt. She fought it pretty bad, which was very upsetting to see. The most we could get out of her was that her skin hurt at the sight. After they finished she was fine. ???
I just met a new family whose daughter was diagnosed yesterday with A.L.L. They were desperate for information. I was actually able to help her with info along with my friend, Sarah, who has been here for 5-6 months. I remember so well how we felt 2 months ago today, on March, Friday, the 13th. Have a good evening, and please pray for white blood cells for Julia & so many other children on this floor that desperately need them.
Love,
Sharon
Tuesday, May 12, 2009
JULIA & SHARON-FROM ATLANTA
5/12/09
Dear friends,
Julia's blood counts continue to remain low, so we are waiting for those counts to start to increase. Her neutrophil count ( part of white blood cells that fights infections) is only 30. I believe the low end of a normal range is 1,400, but I don't have that paper work in front of me at the moment. Surprisingly there are children on this hospital floor right now that have zero neutrophils. We encounter so many children and their families that are in a lot worse shape than we are. It's such an eye opening experience to learn about these children. The 3rd floor at this hospital is full!!! The wing where we are is very busy, many times with young kids on their tricycles with their masks on, sometimes with parents behind them pushing their child's I.V. pole. It's something to see!! Don't ever take your children's health for granted. Because Julia's blood counts decreased yet again this morning, she had another blood transfusion this afternoon. This is her 3rd transfusion overall. It's strange that receiving a transfusion of someone else's blood has become something that we don't seem to worry about so much anymore. The doctors say that she cannot go home until they see those counts start to increase again. Julia is also being treated with an inhaler because of her croupy cough. It could be that this dip in blood counts could drag along because of this congestion/cough. She also has continued to have high blood pressure & a high pulse rate, which is concerning me a whole lot more that the doctors!
Please pray that this blood pressure and pulse rate will level out and that this cough will go away, and please pray for white blood cells!!
I'm sorry that I have been rambling on & on in this update. In closing, I will share with you all that God has been so good to give us the strength that we have needed. I know that He is with us all the time. He makes procedures like blood transplants be "OK"... watching nurses put drugs into a port in your child's blood stream and drawing blood back out "OK"...watching fluid being taken from your child's spine & having drugs put into her spine "OK"... I still feel like at times that this is all a big nightmare & that I will soon wake up. I never would have thought that I would have the strenth needed to handle all of this, but with HIS help I am handling it. Please continue to pray for strength & guidance for Jeff & me and for Julia's continued healing.
Love,
Sharon
Dear friends,
Julia's blood counts continue to remain low, so we are waiting for those counts to start to increase. Her neutrophil count ( part of white blood cells that fights infections) is only 30. I believe the low end of a normal range is 1,400, but I don't have that paper work in front of me at the moment. Surprisingly there are children on this hospital floor right now that have zero neutrophils. We encounter so many children and their families that are in a lot worse shape than we are. It's such an eye opening experience to learn about these children. The 3rd floor at this hospital is full!!! The wing where we are is very busy, many times with young kids on their tricycles with their masks on, sometimes with parents behind them pushing their child's I.V. pole. It's something to see!! Don't ever take your children's health for granted. Because Julia's blood counts decreased yet again this morning, she had another blood transfusion this afternoon. This is her 3rd transfusion overall. It's strange that receiving a transfusion of someone else's blood has become something that we don't seem to worry about so much anymore. The doctors say that she cannot go home until they see those counts start to increase again. Julia is also being treated with an inhaler because of her croupy cough. It could be that this dip in blood counts could drag along because of this congestion/cough. She also has continued to have high blood pressure & a high pulse rate, which is concerning me a whole lot more that the doctors!
Please pray that this blood pressure and pulse rate will level out and that this cough will go away, and please pray for white blood cells!!
I'm sorry that I have been rambling on & on in this update. In closing, I will share with you all that God has been so good to give us the strength that we have needed. I know that He is with us all the time. He makes procedures like blood transplants be "OK"... watching nurses put drugs into a port in your child's blood stream and drawing blood back out "OK"...watching fluid being taken from your child's spine & having drugs put into her spine "OK"... I still feel like at times that this is all a big nightmare & that I will soon wake up. I never would have thought that I would have the strenth needed to handle all of this, but with HIS help I am handling it. Please continue to pray for strength & guidance for Jeff & me and for Julia's continued healing.
Love,
Sharon
Sunday, May 10, 2009
FIRST AIRPLANE RIDE FOR JULIA
5/10-Sunday a.m.
Dear friends,
Julia had her first ambulance & airplane trips!! We found out Saturday afternoon that the hospital in Atlanta was planning to life flight her to Atlanta. We thought helicopter, but they flew a plane to our airport in T'ville. They transported her by ambulance from Archbold to the airport, then by plane to Atlanta, then ambulance again to Egleston. WOW!!! William, Melissa, and children, my parents, Dawn, Chris, Kristen, & Catherine Mulford came to see us off! I think at this point all they plan to do is continue her course of i.v. antibiotics, do another blood culture, and if no other fever, they we will have our appointment in the morning as planned. They also need to see that her blood counts are coming back up. They may release us shortly after that, but I'm not sure at this point. Julia's blood pressure has been running quite high, and we will be addressing that more this morning. Hopefully, our next blog post will be from home. :)
As always, thank you for your continued prayers.
Love,
Sharon
Dear friends,
Julia had her first ambulance & airplane trips!! We found out Saturday afternoon that the hospital in Atlanta was planning to life flight her to Atlanta. We thought helicopter, but they flew a plane to our airport in T'ville. They transported her by ambulance from Archbold to the airport, then by plane to Atlanta, then ambulance again to Egleston. WOW!!! William, Melissa, and children, my parents, Dawn, Chris, Kristen, & Catherine Mulford came to see us off! I think at this point all they plan to do is continue her course of i.v. antibiotics, do another blood culture, and if no other fever, they we will have our appointment in the morning as planned. They also need to see that her blood counts are coming back up. They may release us shortly after that, but I'm not sure at this point. Julia's blood pressure has been running quite high, and we will be addressing that more this morning. Hopefully, our next blog post will be from home. :)
As always, thank you for your continued prayers.
Love,
Sharon
Friday, May 8, 2009
WAITING FOR HOSPITAL ROOM IN ATLANTA
5/8/09 UPDATE
We found out this afternoon that our doctor in Atlanta does not want Julia to be dismissed from the hospital until her blood counts start to go back up. As of this afternoon, they did not have a bed available at Egleston. Their plans are as soon as they have a bed available, they are coming here to pick up Julia in one of their ambulances & take her back to Atlanta. She will probably have to have a platelet transfusion in the next day or so. Our hope is that she can get to Atlanta before that has to be done. They still want her to have her normal treatment appointment Monday morning, since neither of the drugs she'll receive Monday should affect her blood counts. Thank you so much for your prayers. Our next update will more than likely be while we're in Atlanta.
Love,
Sharon & Jeff
We found out this afternoon that our doctor in Atlanta does not want Julia to be dismissed from the hospital until her blood counts start to go back up. As of this afternoon, they did not have a bed available at Egleston. Their plans are as soon as they have a bed available, they are coming here to pick up Julia in one of their ambulances & take her back to Atlanta. She will probably have to have a platelet transfusion in the next day or so. Our hope is that she can get to Atlanta before that has to be done. They still want her to have her normal treatment appointment Monday morning, since neither of the drugs she'll receive Monday should affect her blood counts. Thank you so much for your prayers. Our next update will more than likely be while we're in Atlanta.
Love,
Sharon & Jeff
FIRST STAY AT ARCHBOLD
5/8/09-Friday
Dear friends,
We are having our first experience with a fever!! Julia started running a temperature of 100.8 on Wednesday late afternoon. I had gone to Perry, Ga on Wednesday morning to a horse show that I have been going to for 10-15 years. I was reluctant to go, but knew it would be good for me to have some "Mom" time. Jeff called me as soon as he realized it and headed to the emergency room at Archbold. I waited in Perry in my hotel room to see what the plan was (long prayerful wait!). If they had decided to send her to Atlanta, then I would have gone on up there, but they decided it could be managed here, so I arrived at the hospital in T'ville about 1:00a.m. They did blood work on her, and we are basically waiting to see if the culture grows any sort of bacteria. In the mean time she is receiving I.V. antibiotics. If the culture does not grow a bacteria, then we will have given antibiotics anyway as a precaution. They said "shoot now, ask questions later". She has cold/cough symptoms that I guess she caught from me. I thought my symptoms were due to allergies and had tried to be so careful around her. I've decided that if Jeff or I get sick with anything again, then one of us will move out!! We should know by this evening whether or not her blood sample grows anything, so far nothing and the fever has gone. She should be dismissed Saturday morning providing her congestion does not cause anymore serious problems. They did another chest x-ray this morning. Also her platelets have dropped very low and she is very neutropenic (no immune system). More than likely she will have to receive platelets today, and we will find out this afternoon what our plan is for our Monday appointment. Please pray for her that the platelet transfusion goes well and for her to have some relief from her congestion/cough. Also, please pray that her port continues to work o.k. It has certainly been accessed a lot the last couple of days!! It makes you very uneasy!! They have no problem putting something in it, but sometimes they have difficulty drawing blood back out of it.
Thank you for your prayers.
Love,
Sharon
Dear friends,
We are having our first experience with a fever!! Julia started running a temperature of 100.8 on Wednesday late afternoon. I had gone to Perry, Ga on Wednesday morning to a horse show that I have been going to for 10-15 years. I was reluctant to go, but knew it would be good for me to have some "Mom" time. Jeff called me as soon as he realized it and headed to the emergency room at Archbold. I waited in Perry in my hotel room to see what the plan was (long prayerful wait!). If they had decided to send her to Atlanta, then I would have gone on up there, but they decided it could be managed here, so I arrived at the hospital in T'ville about 1:00a.m. They did blood work on her, and we are basically waiting to see if the culture grows any sort of bacteria. In the mean time she is receiving I.V. antibiotics. If the culture does not grow a bacteria, then we will have given antibiotics anyway as a precaution. They said "shoot now, ask questions later". She has cold/cough symptoms that I guess she caught from me. I thought my symptoms were due to allergies and had tried to be so careful around her. I've decided that if Jeff or I get sick with anything again, then one of us will move out!! We should know by this evening whether or not her blood sample grows anything, so far nothing and the fever has gone. She should be dismissed Saturday morning providing her congestion does not cause anymore serious problems. They did another chest x-ray this morning. Also her platelets have dropped very low and she is very neutropenic (no immune system). More than likely she will have to receive platelets today, and we will find out this afternoon what our plan is for our Monday appointment. Please pray for her that the platelet transfusion goes well and for her to have some relief from her congestion/cough. Also, please pray that her port continues to work o.k. It has certainly been accessed a lot the last couple of days!! It makes you very uneasy!! They have no problem putting something in it, but sometimes they have difficulty drawing blood back out of it.
Thank you for your prayers.
Love,
Sharon
Saturday, May 2, 2009
COMPUTER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
5/2/09
Dear friends & familly,
WE FINALLY GOT OUR COMPUTER!!!!!! And this time it works and it's downstairs!!!!! I mean two things by that. The 1st thing I mean by that is it hasn't been messed up by anyone. The second thing I mean by that is..............................when they got it set up the internet WOULD NOT WORK!!!!!!!!!!!!! We really got our computer yesterday but we got it fixed today. An AT&T guy came this morning and fixed it. SO NOW WE HAVE OUR COMPUTER!!!!!!!!!!!!!!!!!!!!
Love,
Julia.
Julia has had a good week this past week. She was at school all day on Wednesday, Thursday, & Friday! She has seemed to be a lot like her normal self this past week, which we have been very glad to see! We're heading back to Atlanta in the morning. Julia will have her clinic appointment on Monday @ 8:00. Thank you again for your prayer support!
Love,
Sharon & Jeff
Dear friends & familly,
WE FINALLY GOT OUR COMPUTER!!!!!! And this time it works and it's downstairs!!!!! I mean two things by that. The 1st thing I mean by that is it hasn't been messed up by anyone. The second thing I mean by that is..............................when they got it set up the internet WOULD NOT WORK!!!!!!!!!!!!! We really got our computer yesterday but we got it fixed today. An AT&T guy came this morning and fixed it. SO NOW WE HAVE OUR COMPUTER!!!!!!!!!!!!!!!!!!!!
Love,
Julia.
Julia has had a good week this past week. She was at school all day on Wednesday, Thursday, & Friday! She has seemed to be a lot like her normal self this past week, which we have been very glad to see! We're heading back to Atlanta in the morning. Julia will have her clinic appointment on Monday @ 8:00. Thank you again for your prayer support!
Love,
Sharon & Jeff
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