Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 WE ARE FREE!!!!! THEY LET US FREE TODAY. ALLIE IS HOME WITH HER PICC AND DOING GREAT. THANK YOU EVERYONE FOR YOUR PRAYERS AND WARM WISHES DURING THIS OUR FIRST HOSPITAL STAY. Love, , mom of allie 3 wcf and connor 1 no cf (and in a much better mood now that he is on abx. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Yea!!!!!!!!!! Great news. :-) Dawn mom of 4, 6 and under, the youngest wcf Allie update > WE ARE FREE!!!!! > THEY LET US FREE TODAY. ALLIE IS HOME WITH HER PICC AND DOING GREAT. THANK YOU EVERYONE FOR YOUR PRAYERS AND WARM WISHES DURING THIS OUR FIRST HOSPITAL STAY. > > Love, > , mom of allie 3 wcf and connor 1 no cf (and in a much better mood now that he is on abx. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 WAY TO GO ALLIE AND MOM. from P.A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 , I am so glad!! Hope everything goes well. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 --Can you tell me about the bronch......they are wanting to do it on my daughter because her pfts are really low and there is no reason for it .......her ct scan came back relatively good, she hasn't cultured pa since 1997 and her aspergillas #s are low.....so, we really have the doctors stumped! The bronch sounds very invasive so I'm uneasy about this procedure.....any information would be helpful....thank you. Karin Mom to Austin 11 nocf/asthma 9 cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 YES.THAT is great news. lets hope all the following meetings with the doc will continue to bring " good news reports ' Bless you all .I hold you each in my thoughts .Tell Ali hi & sending her love too LOVE Y& HUGS, grandmomBEV Re: Allie update , guess i confused everyone. i was tired, what can i say. Here's the story. In april Allie's throat cultures showed pseudomonas. we were bumming. They tried tobi and 3 months later recultured pseudomonas. We asked how we could get rid of it and they told us we couldn't. but we just got good news that after a run of cipro and tobi together allie's throat culture came back neg 3 weeks ago for pseudomonas. I was ready to celebrate. the doc said " don't celebrate too fast, it's probably still in the lung " so they did a bronch to see and it was negative too. This is great news to us. Thanks for all your support Re: Allie update I'm not sure I understand this. It is good news that Allie has Psuedonomas and it can't be eradicated? Her bronc came back negative. What does this mean? Congratulations on finally getting the vest. It took us about that long to get it also. After the medical assistance personnel approved it we needed to wait a month for it to be shipped. Normal procedure. from P.A. PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!! I will quote from Luther Kings Speech... " THANK GOD WE FREE AT LAST " Rosemary in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2002 Report Share Posted January 12, 2002 Karin, I was really nervous about the bronch. too. Here's what I know. Unfortunately for me I am a nurse. Some think that's great because I know some stuff but I sometimes think it's bad because I have seen some crappy things happen to people. I don't know how much you know so I'll start from scratch. Sorry is this is repetitive. They use this flexible scope with a camera and go in through a nostril back into the lung where they can see the lungs well. was put under general anesthesia for this. Good- she was sound asleep, bad- she was intubated and anesthesia has its own myriad of problems. I know she is young but the thought of intubating someone with a chronic obstructive lung disease scares me. I work with old people with this and when we intubate them they sometimes don't come off. I realize this is probably an unrealistic fear in a child who is not at an advanced state of respiratory decline. I saw a bronch. done on discovery health on a 8 or 9 year old girl under conscious sedation. Conscious sedation is basically a drug that makes you forget- Versed, and a pain killer- Fentanyl. The girl fought the procedure a little, which was hard to watch (choking on the scope as it passed her gag reflex) but in the end she didn't remember it. Personally, I think that still stinks. Who cares if she forgets she went through it. I liked that Allie was under for that reason. There are 3 nasal conchae (as we call them) in the nose. These are bumps and lumps and bony areas that the scope has to wind around. They lube up the scope but they still have to pass these and sometimes bump them and cause minor trauma (nosebleeds, etc). Once they are in the lung they can see very well. Allie's bronch revealed redness, inflammation and lots of yellow mucus in the lower lobes of her lungs. They instilled about 60cc of saline and they suctioned it out-- called bronchial lavage. They showed me the mucus. Yuck. They also did a cell brushing. They used this little brush (like a Q-tip) and rubbed the wall of her bronchiole. They are using these cells to check for White Blood Cells and bacteria and such hanging on to the walls. Sometimes they want a biopsy where they snip a piece of the lung tissue. When they do this there is an increased risk of bleeding. We did not have this done on Allie. All in all, I'm glad we did the bronch because she has had this nasty chronic cough and her throat culture was negative. I wanted to know who was hiding out down there in her lung. Turns out she had/has strep varicens and staph. aeurous which didn't really change the treatment plan but gives us a better idea of what is going on. I would recommend it. As hard as it is. Just to make sure that the child doesn't have some creepy bug down there destroying lung tissue. Find it and get some good meds on board and then hopefully they won't have to do another for a long long time. I hope this helps, Let me know how it goes, , mom of Allie 3 w/cf Re: Allie update --Can you tell me about the bronch......they are wanting to do it on my daughter because her pfts are really low and there is no reason for it .......her ct scan came back relatively good, she hasn't cultured pa since 1997 and her aspergillas #s are low.....so, we really have the doctors stumped! The bronch sounds very invasive so I'm uneasy about this procedure.....any information would be helpful....thank you. Karin Mom to Austin 11 nocf/asthma 9 cf Quote Link to comment Share on other sites More sharing options...
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