Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 I am happy to hear she is out & back at school .I am VERY happy for you as well. NOW---You get some rest also!! Love to you all LOVE & HUGS, grandmomBEV 's Home! Hi everyone, Sorry I haven't been keeping you all updated, all I did was go to the hospital, come home and sleep, get up shower eat and go back. Things went pretty well, but the weekend in the hospital turned into a week plus two days. They couldn't get a picc again. But she only had to get two IV's. Also her culture just grew 2 strains of staph so they decided it was OK to discharge her on orals. Shes on levaquin, bactrim. zithromax and Tobi. While she was in she got breathing treatments and vest or pep every 4 hours around the clock. They put her on inhaled pulmicort along with her usual albuterol, intal, pulmozyme, and Tobi. Also her pottasium was low so she is back on oral pottasium. She is feeling a whole lot better and is back in college. She missed a lot but insisted on going to her anthro lab and got a pass to go last Thurs. We did have the cutest little roommate, her name was Jasmine and she was 4 1/2. What a cutie.Her mom stayed in with her the whole time so it was nice having her there to keep an eye on Ang when I went home to bed. Her mom was super nice too. She had been in there almost a month, she had a fundo and it got messed up and she couldn't eat at all, she was getting TPN and lipids (TPN is total IV nutrition. in case you don't know). Jasmine doesn't have CF so they weren't breaking that rule. I guess thats about it, now I have like 1000 emails to read but I will probably just have to delete them all and start over! It is good to be home and to have Ang home. But she really did need a tuneup, I doubt they let her go so long next time. love to all, mom of age 19 wcf and Nick age 21 no cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 , I am glad that she is home. Sorry that it ended up being such a long stay. I hope that starts feeling better soon. Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Welcome home to you both! I am way behind in my e-mails, also, , due to my non-CF son, DJ, being in the hospital with what they now have deduced (albeit, by guesswork and no bloodwork) to be kidney stones followed by West Nile, so I didn't even realize that was sick! But, I am so glad to hear that she is home and feeling better--what a blessing! I will keep her in my thoughts, and best wishes to her. S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition, ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD) 's Home! > Hi everyone, > Sorry I haven't been keeping you all updated, all I did was go to the hospital, come home and sleep, get up shower eat and go back. Things went pretty well, but the weekend in the hospital turned into a week plus two days. They couldn't get a picc again. But she only had to get two IV's. Also her culture just grew 2 strains of staph so they decided it was OK to discharge her on orals. Shes on levaquin, bactrim. zithromax and Tobi. While she was in she got breathing treatments and vest or pep every 4 hours around the clock. They put her on inhaled pulmicort along with her usual albuterol, intal, pulmozyme, and Tobi. Also her pottasium was low so she is back on oral pottasium. She is feeling a whole lot better and is back in college. She missed a lot but insisted on going to her anthro lab and got a pass to go last Thurs. We did have the cutest little roommate, her name was Jasmine and she was 4 1/2. What a cutie.Her mom stayed in with her the whole time so it was nice having her there to keep an eye on Ang when I went home to bed. Her mom was super nice too. She had been in there almost a month, she had a fundo and it got messed up and she couldn't eat at all, she was getting TPN and lipids (TPN is total IV nutrition. in case you don't know). Jasmine doesn't have CF so they weren't breaking that rule. > > I guess thats about it, now I have like 1000 emails to read but I will probably just have to delete them all and start over! It is good to be home and to have Ang home. But she really did need a tuneup, I doubt they let her go so long next time. > > love to all, > > mom of age 19 wcf and Nick age 21 no cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 , I'm sorry that the weekend stay turned into a week plus but it's good to hear that is out and feeling better. I was wondering where you were. Forgive my innocence but what is the rule with the TPN and CF? had TPN and Lipids right after she was dx'd, during her first hospital stay. She was very under weight and was refusing to eat enough. Well, I hope that continues to do well. 's Home! Hi everyone, Sorry I haven't been keeping you all updated, all I did was go to the hospital, come home and sleep, get up shower eat and go back. Things went pretty well, but the weekend in the hospital turned into a week plus two days. They couldn't get a picc again. But she only had to get two IV's. Also her culture just grew 2 strains of staph so they decided it was OK to discharge her on orals. Shes on levaquin, bactrim. zithromax and Tobi. While she was in she got breathing treatments and vest or pep every 4 hours around the clock. They put her on inhaled pulmicort along with her usual albuterol, intal, pulmozyme, and Tobi. Also her pottasium was low so she is back on oral pottasium. She is feeling a whole lot better and is back in college. She missed a lot but insisted on going to her anthro lab and got a pass to go last Thurs. We did have the cutest little roommate, her name was Jasmine and she was 4 1/2. What a cutie.Her mom stayed in with her the whole time so it was nice having her there to keep an eye on Ang when I went home to bed. Her mom was super nice too. She had been in there almost a month, she had a fundo and it got messed up and she couldn't eat at all, she was getting TPN and lipids (TPN is total IV nutrition. in case you don't know). Jasmine doesn't have CF so they weren't breaking that rule. I guess thats about it, now I have like 1000 emails to read but I will probably just have to delete them all and start over! It is good to be home and to have Ang home. But she really did need a tuneup, I doubt they let her go so long next time. love to all, mom of age 19 wcf and Nick age 21 no cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 , WEST NILE yikes I really hope that this is not so. I will be praying for you guys. I hope the blood work shows none of this. Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Thanks Ashauna! really is feeling sooo much better, it was worth the stay. Her doc actually wanted her to stay the whole 2 weeks but we groaned and moaned and so she decided to switch her antibiotics to orals and let us go. She is a cool doc. love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Hi , Gosh, sorry to hear about DJ! Sounds scary! Thanks for the welcome homes, Ang is doing a whole lot better! love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Hi , I'm sorry I don't know any rule about TPN and CF. wasn't on TPN and lipids but her roomie was. I don't think there is any connection. The roomie didn't have CF that was all that made a difference. Sorry for the confusion, love, Re: 's Home! , I'm sorry that the weekend stay turned into a week plus but it's good to hear that is out and feeling better. I was wondering where you were. Forgive my innocence but what is the rule with the TPN and CF? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Thanks Grandmom Bev. By the way I need your number or can I just order ADEKs on email? You guys have my credit card infor. I need 6 bottles of the chewables. I have a hard time calling because of us being on Pacific time I forget to call when its before 5 Eastern. But if I need to call let me know the number again (sorry I need to write it down someplace). thanks, love you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Bless you . The number is 1- you can call any time. If we aren't there , we have folks who answer the phone & you can just leave the request with them & make sure you give the patients name & any info you want us to have & what you want us to do . OR you can simply just send an email . give information & ask them to call you to verify we received (or they can email back to you depending on timing. There is the 3 hours difference. It doesn't make any difference to us as we send all over the world. & we just adjust with it :) Now here ids what I have for you : 6 bottles of chewable ADEK patient name : Morey already in computer (CA) put on charge card on file . ship right away...... IS that right ?? I will send to Rx now.. the first thing they do is check the email . I get all mail for all Pharmacy...Then I send to who will be the one to do it.:)It can even come in on the weekend . They (Rx) cant do until they come in on Monday , but is first thing they do :) Sooooooo, whenever you want something, email it right then & it will get read & attended to ASAP. then!! I hope Angie is doing well now. It has been so long since she has been in the club........ I pray you can get some rest now also I will be out in Anaheim in October for the NACFF . sure wish you all could go too. LOVE & HUGS, GrandmomBEV Re: 's Home! Thanks Grandmom Bev. By the way I need your number or can I just order ADEKs on email? You guys have my credit card infor. I need 6 bottles of the chewables. I have a hard time calling because of us being on Pacific time I forget to call when its before 5 Eastern. But if I need to call let me know the number again (sorry I need to write it down someplace). thanks, love you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Dear Grandmom Bev, Yes thats exactly right. Thanks so much, so I don't need to call, right? If I didn't get that right let me know. Thanks a bunch! love & hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 YEP..Its on its way.........see how simple that is :)?? Your a doll . you can order from us just about every way there is to do it:):) Soooooo, Whatever you need at any time , just let us know the easiest it is for you..They will be coming FED X. It takes a couple days or so as far away as you are & it isn't refri , those get sent 1-2nd day air:) LOVE & HUGS, GRDMBEV Re: 's Home! Dear Grandmom Bev, Yes thats exactly right. Thanks so much, so I don't need to call, right? If I didn't get that right let me know. Thanks a bunch! love & hugs, Quote Link to comment Share on other sites More sharing options...
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