Guest guest Posted November 2, 2003 Report Share Posted November 2, 2003 Cheryl, thank you for the update on ; I am glad that it went so well, and that he did not miss the holiday, in fact sort of had two--now, YOU get your rest! Love to you and to yours, and cfparents, n Rojas 's finally home > Hi all, Well..both Matty and mommy have survived the first hospital > admission. He cultured PA and had the 10 days of IV antibiotics. We > got home a day early, which was great. He must have had about 8-9 IVs > done on him while in the hospital. He lost another one on Friday > morning so the doctors said go home. We were pleased. was able > to trick or treat with his brothers. It's just so nice to sleep in my > own bed. He is on inhaled Tobi, which is added to his ventilin and > polmicort. I haven't heard him cough in a while now, it's nice. We go > back to clinic on the 14th, they said they would do another culture > then, fingers crossed its clear. > > I met so many wonderful people and children at the hospital. I took > trick or treating at the hospital before we left for home. It > was an opportunity to see all the children who are in the hospital, it > was nice to see them all out enjoying themselves, if that's even > possible in the hospital. It was also sad though, a lot of them did not > look so good. It makes me think sometimes that I am lucky that Matty > has CF and not something else. Don't get me wrong though, CF sucks. > It's just so scary to see these young kids with tubes and wires and meds > everywhere. It's a sad thing to see. > > Enough depressing talk, hope everyone is doing well. I am hoping for a > good finish to this year. Trying to get thru each day, being thankful > for the things I have and appreciating everything and everyone in my > life. > > Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21 mos. > wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 I am happy you're home with your precious family & that Matty had a fun time in spite of it all. Your experience was a better one than you had thought & that is a super happening!! Stay well & have a really nice holiday time ahead! LOVE & HUGS, grandmomBEV 's finally home Hi all, Well..both Matty and mommy have survived the first hospital admission. He cultured PA and had the 10 days of IV antibiotics. We got home a day early, which was great. He must have had about 8-9 IVs done on him while in the hospital. He lost another one on Friday morning so the doctors said go home. We were pleased. was able to trick or treat with his brothers. It's just so nice to sleep in my own bed. He is on inhaled Tobi, which is added to his ventilin and polmicort. I haven't heard him cough in a while now, it's nice. We go back to clinic on the 14th, they said they would do another culture then, fingers crossed its clear. I met so many wonderful people and children at the hospital. I took trick or treating at the hospital before we left for home. It was an opportunity to see all the children who are in the hospital, it was nice to see them all out enjoying themselves, if that's even possible in the hospital. It was also sad though, a lot of them did not look so good. It makes me think sometimes that I am lucky that Matty has CF and not something else. Don't get me wrong though, CF sucks. It's just so scary to see these young kids with tubes and wires and meds everywhere. It's a sad thing to see. Enough depressing talk, hope everyone is doing well. I am hoping for a good finish to this year. Trying to get thru each day, being thankful for the things I have and appreciating everything and everyone in my life. Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21 mos. wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 Sara - I don't have advise for a 2 yr. in a hospital but with the Tobi try to get him to wear the mask while watching his favorite tape. I love the mask. It helps lungs and sinus cavity. I am sorry about the PA.........its better you know so you get treat it ---otherwise you could get scar tissue.. When I found out grew it I cried for an hour!! CF - is like a ladder - we keep going up the steps............ Rosemary in NY with 3 children (13, 10.11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 Hi Cheryl, Zach's doc just called and told us Zach has Psuedonomas. This is our first time. The doc says we will do 28 days of TOBI and reculture. If it is still there we are going in for IV's. This scares me, but I do want this treated agressively. Any advice you can give me for handling a 21 month old in a hospital would be greatly appreciated and I hope I never have to use the advice! Sara - mommy of Zach almost 21 months > Hi all, Well..both Matty and mommy have survived the first hospital > admission. He cultured PA and had the 10 days of IV antibiotics. We > got home a day early, which was great. He must have had about 8-9 IVs > done on him while in the hospital. He lost another one on Friday > morning so the doctors said go home. We were pleased. was able > to trick or treat with his brothers. It's just so nice to sleep in my > own bed. He is on inhaled Tobi, which is added to his ventilin and > polmicort. I haven't heard him cough in a while now, it's nice. We go > back to clinic on the 14th, they said they would do another culture > then, fingers crossed its clear. > > I met so many wonderful people and children at the hospital. I took > trick or treating at the hospital before we left for home. It > was an opportunity to see all the children who are in the hospital, it > was nice to see them all out enjoying themselves, if that's even > possible in the hospital. It was also sad though, a lot of them did not > look so good. It makes me think sometimes that I am lucky that Matty > has CF and not something else. Don't get me wrong though, CF sucks. > It's just so scary to see these young kids with tubes and wires and meds > everywhere. It's a sad thing to see. > > Enough depressing talk, hope everyone is doing well. I am hoping for a > good finish to this year. Trying to get thru each day, being thankful > for the things I have and appreciating everything and everyone in my > life. > > Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21 mos. > wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 I cried too. I am glad I am not the only one. I was afraid I was overreacting. I am going to ask for the mask. I think Zach will be better with that then trying to hold something in his mouth. Getting the tobi in the sinuses is a good idea too. Zach has a lot of ear infections too. Sara > Sara - I don't have advise for a 2 yr. in a hospital but with the Tobi try to > get him to wear the mask while watching his favorite tape. I love the mask. > It helps lungs and sinus cavity. > > I am sorry about the PA.........its better you know so you get treat it > ---otherwise you could get scar tissue.. When I found out grew it I cried for > an hour!! > > CF - is like a ladder - we keep going up the steps............ > > Rosemary in NY with 3 children (13, 10.11 and 7) > with CF. I have a dog named TOBI and have > coined the phrase " BREATHE DAMMIT " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 Hey Sara, I am sorry to hear that, that is what had too. I hope that the inhaled Tobi will clear it. Because was having trouble breathing they decided to admit him and treat it intravenously. But if we had just gone to clinic and his culture had come back positive for pseudomonas, they would have just sent us home on inhaled tobi. As for advise on the hospital stay, bring lots of books for you and your son. We watched Barnie, I swear, a million times. Lots of yummy snacks too. I am in the process of designing a hospital gown that is a little more IV friendly for toddlers. Matty always had pee pee over flow in the morning and it was so hard to change him because of the IV thru the gown. I am hoping that my design will work. I am going to make a couple and take them to the hospital for a few moms to try for their kids. I'll let you know what they think in case you or anyone else wants one. I am learning to use a sewing machine for the first time. Should be interesting. When was Zach born? is 21 months tomorrow. Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 3 yrs. wocf, 21 mo. wcf Re: 's finally home Hi Cheryl, Zach's doc just called and told us Zach has Psuedonomas. This is our first time. The doc says we will do 28 days of TOBI and reculture. If it is still there we are going in for IV's. This scares me, but I do want this treated agressively. Any advice you can give me for handling a 21 month old in a hospital would be greatly appreciated and I hope I never have to use the advice! Sara - mommy of Zach almost 21 months > Hi all, Well..both Matty and mommy have survived the first hospital > admission. He cultured PA and had the 10 days of IV antibiotics. We > got home a day early, which was great. He must have had about 8-9 IVs > done on him while in the hospital. He lost another one on Friday > morning so the doctors said go home. We were pleased. was able > to trick or treat with his brothers. It's just so nice to sleep in my > own bed. He is on inhaled Tobi, which is added to his ventilin and > polmicort. I haven't heard him cough in a while now, it's nice. We go > back to clinic on the 14th, they said they would do another culture > then, fingers crossed its clear. > > I met so many wonderful people and children at the hospital. I took > trick or treating at the hospital before we left for home. It > was an opportunity to see all the children who are in the hospital, it > was nice to see them all out enjoying themselves, if that's even > possible in the hospital. It was also sad though, a lot of them did not > look so good. It makes me think sometimes that I am lucky that Matty > has CF and not something else. Don't get me wrong though, CF sucks. > It's just so scary to see these young kids with tubes and wires and meds > everywhere. It's a sad thing to see. > > Enough depressing talk, hope everyone is doing well. I am hoping for a > good finish to this year. Trying to get thru each day, being thankful > for the things I have and appreciating everything and everyone in my > life. > > Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21 mos. > wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Zach was born 2/8/2002. Matty and Zach are really close in age. Zach has a morning overflow problem too, so I will keep that in mind if we are sent to the hospital. Let me know how the gowns turn out. That might be a really helpful thing to have. Zach loves books and Elmo, so maybe that would keep him entertained. We would also try to arrange some visitors so that Zach wouldn't get too bored with just MOM, like ususal. I just had a thought. Would attaching a velcro closure to a childs bathrobe work for a hospital gown?? I am not sure how the iv's are attached so I have no idea if this could really work, but it just popped into my head. Thanks for the advice. I will let you know how our TOBI experience goes. Sara > > Hi all, Well..both Matty and mommy have survived the first hospital > > admission. He cultured PA and had the 10 days of IV antibiotics. > We > > got home a day early, which was great. He must have had about 8- 9 > IVs > > done on him while in the hospital. He lost another one on Friday > > morning so the doctors said go home. We were pleased. > was able > > to trick or treat with his brothers. It's just so nice to sleep > in my > > own bed. He is on inhaled Tobi, which is added to his ventilin and > > polmicort. I haven't heard him cough in a while now, it's nice. > We go > > back to clinic on the 14th, they said they would do another culture > > then, fingers crossed its clear. > > > > I met so many wonderful people and children at the hospital. I > took > > trick or treating at the hospital before we left for > home. It > > was an opportunity to see all the children who are in the > hospital, it > > was nice to see them all out enjoying themselves, if that's even > > possible in the hospital. It was also sad though, a lot of them > did not > > look so good. It makes me think sometimes that I am lucky that > Matty > > has CF and not something else. Don't get me wrong though, CF > sucks. > > It's just so scary to see these young kids with tubes and wires > and meds > > everywhere. It's a sad thing to see. > > > > Enough depressing talk, hope everyone is doing well. I am hoping > for a > > good finish to this year. Trying to get thru each day, being > thankful > > for the things I have and appreciating everything and everyone in > my > > life. > > > > Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21 > mos. > > wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
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