Kruz
New Member
*Cut and Pasted from Drews support pages and entered by my sister-in-law*
November 23, 2006 at 09:02 PM EST
Hey everyone,
I know it has been a while since I was able to post an update. Tonight we are back at the RMH (Ronald McDonald House). This week started out very trying. It has tested my faith and strength almost every step of the way. I will try to give you a time line.
Monday morning I called the clinic in Georgia at 8:15 am because Drew had a hole in his central line and was told I needed to bring him to the clinic to have a surgeon look at it. By the time I got there it was 9:45 a and then was told I needed to go to the emergency room. We get over to the ER and by the time we are seen by a doc it was 11:00 a, keep in mind we have to be at the airport by 2 p to make our flight to Baltimore. Well, the er docs repaired his central line and off we were at 12:30 p. We made it to the airport in plenty of time. The flight was good and Drew had a lot of fun. After the flight was over he got to sit in the Captain's seat and we got some good pictures i will post as soon as I get home. We get to RMH without a problem and things are good here.
Now here comes the trying part.
Tuesday morning we are called to the clinic in Baltimore early because Drew needed a blood transfusion. We get there about 9:45 am. By 5:00 we still have not had his blood and Drew started to run a low grade fever. So instead of letting him come back to RMH he had to go to the ER. The ER at JHH (John Hopkins Hospital) is very small and not very busy. We sat in the ER about 4 hours. By the time we got up to his room it had been about 12 hours. Drew had to have a RSV test (RSV is a type of flu) which intails having a tube stuck in his nose. This made him very sick because he has a sensitive gag reflex. The nurses were inept and didn't know how to take care of a HEMOC patient and ended up throwing up there hands and saying you(meaning me) would have to be the one to do everything. Mainly change his Central Line dressing. By the time all the stuff was done on Tuesday it was 1 in the morning. Keep in mind we have been at JHH since 9:45 am. I finally get Drew to sleep and fall asleep myself, only to be awaken by 4 nurses and housekeeping at 8:00 am. I was so angry i could not see straight.
So we demanded to meet with Drew's doctors. After some yelling and some tears we came to an understanding and a sign was posted on Drew's door "DO NOT ENTER unless Medically Necessary". I was starting to doubt that we made the right decision to come to JHH. But things at JHH got so much better. Then they let us go home today. We have to go back to the clinic everyday to have labs done so we do not miss the window for Harvest.
Drew is a totally different person now that we are back at RMH. He is playing and laughing. I really missed that the last couple of days.
Everything is good now and GOD has blessed us. I just hope that he will continue to show me the right path to take with Drew and his care.
I hope you were able to follow all of my rambling. Good night and GOD Bless.
44 November 26, 2006 at 10:14 PM EST
Hey all,
Our weekend has been ok. Drew is not feeling that great but seems to be better everyday. We have a doctor's appointment tomorrow to figure out what the plan will be for the rest of the week. Let's pray that his counts are up so the doctors can harvest early this week.
RMH is a good place, we have met a lot of nice people here. We have tried to keep Drew busy this weekend. We took him to the Aquarium here in Baltimore and he did ok. Today we took him to see that movie Happy Feet. He really liked that. Drew smiled and laughed through the whole thing.
I will keep everyone posted tomorrow the plan for this week. Drew and I are really ready to be back home. We miss everyone so much.
Love,
Candi
45 November 29, 2006 at 09:28 AM EST
We sit here in the clinic today, the third day in a row, to check his counts. We are so ready to come home. Drew has been sick this whole time. He is definetly having one of his bad days. He hasn't even been tolerating his feeds at night. I hope he gets over this soon.
Right now Drew is coloring and we are waiting to hear what his counts are. I think it is still scheduled for the harvest on Thursday.
Thanks for thinking of us and praying for us this week.
Love,
Candi
46 December 01, 2006 at 01:38 PM EST
Drew's harvest went good yesterday. We had a little scare in the OR but he is fine. They were able to harvest enough and then some. Because Drew had a cold going into surgery the surgeons warned us of some breathing complications that could happen, well it happened a little. Drew had a asthma attck or broncholi spasm during the procedure. No problems and everything is fine now. He stayed sedated for a little under 8 hours. He had no other problems with his procedure. Thank GOD.
Drew is running around RMH like a wild man today. We are really excited to be coming home tomorrow. Drew gets to ride in an airplane tomorrow and he is excited.
Have a great weekend, love your kids and everyone around you. GOD Bless everyone.
47 December 04, 2006 at 11:36 PM EST
Sorry I haven't put an update out here but we have been enjoying every minute we are at home. Drew is been in such a good mood and laughing and playing, he is so happy to be at home. I don't think there has been a time since Saturday that Drew was not smiling. We had a wonderful welcome home on Saturday. My sister Tammie and my dearest friends and family Bonnie and Tammy Too, Danny and Brennan all came to decorate my house with christmas lights. It is beautiful. You can see it from down the street. They all were here when we got home on Saturday and they colored a beautiful choo choo train, it runs the length of our house. Each one of them and all the kids did one a piece. So thank you to Tammie, Tammy, Bonnie, Kyle, Ashley, Cole, Bree, Jake, and Arbor for the beautiful train and thanks to Danny and Brennan too. It is soo nice to know we were missed and that they spent their time to make us feel loved. Drew loves his choo choo train.
We went to see the Surgeon today, everything is on schedule for Wednesday. I have a feeling that Wednesday will be one of the longest days of my life. Dr. Pitt is a wonderful doctor and surgeon, I know that he has the skilled hand. I pray that GOD, the ultimate physican will cradle his hands and lead him during the surgery. It is all in GOD's hands.
Thank you for all of your continued prayers and thoughts.
GOD is good!
Love,
Candi
48 December 06, 2006 at 06:02 PM EST
Drew is doing great. His surgery went better than planned. Drew started surgery around 8:15 and was done at 10:55 almost 3 hours ahead of schedule. The surgeon was able to remove all of his tumor, he did have to also remove the kidney, but that is ok. Drew is doing very well. He is mostly sleeping and watching T.V. I have to get back to him but I keep everyone posted.
GOD is Great and GOD Bless everyone.
Love, Candi
November 23, 2006 at 09:02 PM EST
Hey everyone,
I know it has been a while since I was able to post an update. Tonight we are back at the RMH (Ronald McDonald House). This week started out very trying. It has tested my faith and strength almost every step of the way. I will try to give you a time line.
Monday morning I called the clinic in Georgia at 8:15 am because Drew had a hole in his central line and was told I needed to bring him to the clinic to have a surgeon look at it. By the time I got there it was 9:45 a and then was told I needed to go to the emergency room. We get over to the ER and by the time we are seen by a doc it was 11:00 a, keep in mind we have to be at the airport by 2 p to make our flight to Baltimore. Well, the er docs repaired his central line and off we were at 12:30 p. We made it to the airport in plenty of time. The flight was good and Drew had a lot of fun. After the flight was over he got to sit in the Captain's seat and we got some good pictures i will post as soon as I get home. We get to RMH without a problem and things are good here.
Now here comes the trying part.
Tuesday morning we are called to the clinic in Baltimore early because Drew needed a blood transfusion. We get there about 9:45 am. By 5:00 we still have not had his blood and Drew started to run a low grade fever. So instead of letting him come back to RMH he had to go to the ER. The ER at JHH (John Hopkins Hospital) is very small and not very busy. We sat in the ER about 4 hours. By the time we got up to his room it had been about 12 hours. Drew had to have a RSV test (RSV is a type of flu) which intails having a tube stuck in his nose. This made him very sick because he has a sensitive gag reflex. The nurses were inept and didn't know how to take care of a HEMOC patient and ended up throwing up there hands and saying you(meaning me) would have to be the one to do everything. Mainly change his Central Line dressing. By the time all the stuff was done on Tuesday it was 1 in the morning. Keep in mind we have been at JHH since 9:45 am. I finally get Drew to sleep and fall asleep myself, only to be awaken by 4 nurses and housekeeping at 8:00 am. I was so angry i could not see straight.
So we demanded to meet with Drew's doctors. After some yelling and some tears we came to an understanding and a sign was posted on Drew's door "DO NOT ENTER unless Medically Necessary". I was starting to doubt that we made the right decision to come to JHH. But things at JHH got so much better. Then they let us go home today. We have to go back to the clinic everyday to have labs done so we do not miss the window for Harvest.
Drew is a totally different person now that we are back at RMH. He is playing and laughing. I really missed that the last couple of days.
Everything is good now and GOD has blessed us. I just hope that he will continue to show me the right path to take with Drew and his care.
I hope you were able to follow all of my rambling. Good night and GOD Bless.
44 November 26, 2006 at 10:14 PM EST
Hey all,
Our weekend has been ok. Drew is not feeling that great but seems to be better everyday. We have a doctor's appointment tomorrow to figure out what the plan will be for the rest of the week. Let's pray that his counts are up so the doctors can harvest early this week.
RMH is a good place, we have met a lot of nice people here. We have tried to keep Drew busy this weekend. We took him to the Aquarium here in Baltimore and he did ok. Today we took him to see that movie Happy Feet. He really liked that. Drew smiled and laughed through the whole thing.
I will keep everyone posted tomorrow the plan for this week. Drew and I are really ready to be back home. We miss everyone so much.
Love,
Candi
45 November 29, 2006 at 09:28 AM EST
We sit here in the clinic today, the third day in a row, to check his counts. We are so ready to come home. Drew has been sick this whole time. He is definetly having one of his bad days. He hasn't even been tolerating his feeds at night. I hope he gets over this soon.
Right now Drew is coloring and we are waiting to hear what his counts are. I think it is still scheduled for the harvest on Thursday.
Thanks for thinking of us and praying for us this week.
Love,
Candi
46 December 01, 2006 at 01:38 PM EST
Drew's harvest went good yesterday. We had a little scare in the OR but he is fine. They were able to harvest enough and then some. Because Drew had a cold going into surgery the surgeons warned us of some breathing complications that could happen, well it happened a little. Drew had a asthma attck or broncholi spasm during the procedure. No problems and everything is fine now. He stayed sedated for a little under 8 hours. He had no other problems with his procedure. Thank GOD.
Drew is running around RMH like a wild man today. We are really excited to be coming home tomorrow. Drew gets to ride in an airplane tomorrow and he is excited.
Have a great weekend, love your kids and everyone around you. GOD Bless everyone.
47 December 04, 2006 at 11:36 PM EST
Sorry I haven't put an update out here but we have been enjoying every minute we are at home. Drew is been in such a good mood and laughing and playing, he is so happy to be at home. I don't think there has been a time since Saturday that Drew was not smiling. We had a wonderful welcome home on Saturday. My sister Tammie and my dearest friends and family Bonnie and Tammy Too, Danny and Brennan all came to decorate my house with christmas lights. It is beautiful. You can see it from down the street. They all were here when we got home on Saturday and they colored a beautiful choo choo train, it runs the length of our house. Each one of them and all the kids did one a piece. So thank you to Tammie, Tammy, Bonnie, Kyle, Ashley, Cole, Bree, Jake, and Arbor for the beautiful train and thanks to Danny and Brennan too. It is soo nice to know we were missed and that they spent their time to make us feel loved. Drew loves his choo choo train.
We went to see the Surgeon today, everything is on schedule for Wednesday. I have a feeling that Wednesday will be one of the longest days of my life. Dr. Pitt is a wonderful doctor and surgeon, I know that he has the skilled hand. I pray that GOD, the ultimate physican will cradle his hands and lead him during the surgery. It is all in GOD's hands.
Thank you for all of your continued prayers and thoughts.
GOD is good!
Love,
Candi
48 December 06, 2006 at 06:02 PM EST
Drew is doing great. His surgery went better than planned. Drew started surgery around 8:15 and was done at 10:55 almost 3 hours ahead of schedule. The surgeon was able to remove all of his tumor, he did have to also remove the kidney, but that is ok. Drew is doing very well. He is mostly sleeping and watching T.V. I have to get back to him but I keep everyone posted.
GOD is Great and GOD Bless everyone.
Love, Candi
