Guest guest Posted April 28, 2000 Report Share Posted April 28, 2000 << " May I please see a resident or someone else. " ; >> GOOD for you!!!!!! I hope continues to get better and better!!!!!!!!!! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2000 Report Share Posted April 28, 2000 had an appointment with the surgeon yesterday which we traveled to B'ham on Wednesday so we could spend the night and also we saw the nutrionist Wednesday. The surgeon almost didn't even see us. They came out and said he was in emergency surgery and would be all day. I marched up and said, " May I please see a resident or someone else. " ; which I would not have said in my younger years but now I just realize we have to 'take charge', you know what I mean? Well, it ended up that our surgeon walked through the door and spent a whole five minutes with us after all. Everything was good except for a weight loss. I am sure he will catch up. Anyway, his sinus infection has gotten worse and now, of course, his lungs are getting involved as always. Our ped saw him today and changed his antibiotic, yet again. Luckily, there were no infiltrates on his x-rays, but she still said to get our stuff together and plan on a trip to B'ham next week if the weekend didn't see him any better. I just know he will wake up better tomorrow. We have increased nebs and chest pt. I think he does this everytime he has surgery. Our ped said today, he just gets set back a little when he has to be intubated. And this particularly surgery ended up being more complicated, lasting longer and had a longer recovery than usual for him. As for the genotype poll, I do not know ours yet. When I know, I will let you know. The first time they did it, they lost his blood. Needless to say, I was a little aggrivated. They didn't notice this until last December and that is when they drew more blood and I haven't ever found out the results. I used to ask every visit, now I just try not to think about the gene stuff, I guess. Don't know why, it just depresses me. Kathy, just wanted you to know I am thinking of you. Glad your spirits are rising! , BLESS YOUR HEART! Gosh, your day sounds like one of mine. I know you must have been terrified. I am so glad that Jennie was there with you. Torsten, you are so nice. Those understanding words you sent to Kathy were so nice. I was going to say something similar but you said it all and so well. , you guys ok? Daelynn, how 'bout you guys. Haven't seen anything from you in a while. The boys ok? Jennie, how did the Picc line go? Is Mallory's out now? Can you tell a difference when you use Emla? Joan, you out there? Are you all ok? Is Kate still swimming? Have a great weekend! , mom to three, with cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 Jen, YOU take care, now! n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2000 Report Share Posted November 5, 2000 << Jen, I can't believe that about Brittany. You and Ron must really be special people to be handed all you have. Tell Brittany hello from and Mycah. Will she have to hospitalized at first? My nieces were but maybe that isn't always necessary. Did you all get the pictures we sent? Give Mallory a hug from Mycah and tell her we hope she gets feeling better soon. >> Hi Lori gosh, I obviously went several days without checking mail, just now working my way backwards up the list..... NO, but they wanted to hospitalize her, only to " teach us " ron was pissed! He said, look, if she NEEDS to be in the hospital, then fine, but WE don't need to be in the hospital to learn how to measure and add...... then he told them we have 7 kids and he lifted up malls shirt and showed her accessed port, expained how we access it ourselves even and that she is currently on home ivs.....he told them he has a phd in microbiology and genetics.....and that he knows how to add and measure, blah blah blah, plus what a huge hardship on us it would be, with mallory on home ivs if they put Brit in the hospital...again, he said, if SHE needs it, then fine....but not just to " educate us " then they asked well what do you know about " what Brittany has " and he proceeded to give them a very ultra scientific answere that I did not understand at all....they were speechless at that point.....but agreed that we were not the typical " tenncare " parents (see, we got branded cause she is on tenncare....but thats just until the adoption is final..everyone here thinks that tncare patients are dumber than dirt, grrrrrrrr) Anyway, so, no, we managed by the skin of our teeth not to do the hospital thing...the doc told us later that this is the only time they have not done it that way, that usually the parents are completely overwhelmed.....truthfully, and frankly, I was in shock.....but CF is overwhelming...diabetes is just a small bump in the day (for the parents, that is......I am sure that getting all those shots is not fun for Brit, though now she thinks its cool....., of course all those ivs for the cfers isn't fun, either...) as far as work for the parents, cf is alot harder...... I found myself getting angry, almost, reading a book they gave us and a parent wrote it and it said that diabetes is the disease where the paretns have to work the most to keep the kids healthy---and I thought, BS, you forgot about CF....funny thing is that hte CF books say the same thing about CF, who knows, maybe all the books say that about their own specific disease...... anyway, so pretty much now its fine, Brittany is doing great, and of course really enjoys the additional privileges to the extent that she doesn t mind the insulin and finger sticks......for her, better to get extra snacks at school when no one else gets to, oh and she gets diet coke for lunch so she can eat more carbs...and that means she is the only kid in school allowed to have soda! OH, forgot to mention that the biggest thing ron told the doc was that Brit, b/c of her history, would freak at being in the hospital....and that our experience is that all our kids do much much better at home.......and also talked abou thte risk to the cf kids with it being rsv season, etc...... they gave in, but we still had to spend 3 full days there for education.... sorry I am rambling...... oh, and they extended mall's ivs another week,to 21 days. she is not better, except her ears are better than ever, but lungs still have crackles and the sinus Ct was terrible... thanks for listenign to me ramble...really, someday I am gonna get those pics developede, really!!!!! please tell the kids hello from us!!!!! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 Jen, if you feel it appropriate, tell Brittany that we all know that she can handle this and that she has a great family, " conditions, " not withstanding! n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 Jen, if you feel it appropriate, tell Brittany that we all know that she can handle this and that she has a great family, " conditions, " not withstanding! n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 << en, if you feel it appropriate, tell Brittany that we all know that she can handle this and that she has a great family, " conditions, " not withstanding! n Rojas >> Thank you n she is doing great! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2000 Report Share Posted November 6, 2000 << en, if you feel it appropriate, tell Brittany that we all know that she can handle this and that she has a great family, " conditions, " not withstanding! n Rojas >> Thank you n she is doing great! Jen Quote Link to comment Share on other sites More sharing options...
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