Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Hey all, i have to keep this brief, we decide for the 2nd biopsy for Matt as he is strong enough to go through this at this time, we decide that we will wait until after June 13, which will be his ninth birthday. We told them just to give Matt a day or two after his birthday to bring him in. Through long debate over this, and all your support, the final decision was made, two days ago, as ive been battle a cold which keeps going into broncitis, and two weeks ago pneumonia, i fought off the pneumonia, but within three days right back into broncitis, i got to the point where i couldnt breath so we rushed to my primary (no sennse sitting in a ER waiting room), he could not believe my color, or that i was standing, my 02 stats were at 70, which really surprised all of us, but none the less i was getting no oxygen in either lungs from middle down, we did 3 nebulizer treatments and they could finally hear weezing, im on heavy duty steroids for the next month, antibiotics and a stonger inhaler,nO choice i must kick my cigerette habit pronto!!! will need to see a allergist, for ashma and shots, (the cats are killing me too), then will find a pulmonologist, Doc says previous x-ray during pneumonia showed i have what he calls mito-emphesima, from smoking, which of course would have happened later in life but because of mito it is now. Mito is progressing faster than they thought it would. That is why the desperation in the biopsy, if they know the mutation they can look at better options of treatment which they assured me there is new treatment out there. Im not ready to be this ill, so if you dont hear from me as often you know why, i will try to keep you all updated and try to teach my kids and husband Bob how to keep yas posted if i cant. Im really tired, and my bed is where im spending all my time as trying to get up and down the stairs is impossible, God only knows what my house looks like! Matt is scared for me, my older two are doing the denial thing right now, and Bob did not take the news from the doc very well, he totally lost it. Bob knows to get me right to the hospital before my o2 sats get that bad again. He is working close to home and the older kids are hear to help too. I have oxygen to suck on for now and will get a nebulizer hear at home. Doc explained that every cold, ashma attack, will be worse each time and i dont have to explain the rest to you, you all know what that means. Well i have to go lay back down. I keep you all in my prayers! Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Barb, So sorry to hear you are having such a rough time. The drug nebs should help a great deal. Don't worry about the house, it does no good anyway. Today's dust just becomes tomorrow's and it will always be there. If someone doesn't like it they can do the dusting! The most important thing is for you to get your strength back and to feel better soon. Please know that there are many people praying for you. Also, we will be praying that Matt's muscle bx goes well and you get the answers you need. Kathy, grandma to Audrey, 3 yearsmatts_mom96 wrote: Hey all, i have to keep this brief, we decide for the 2nd biopsy for Matt as he is strong enough to go through this at this time, we decide that we will wait until after June 13, which will be his ninth birthday. We told them just to give Matt a day or two after his birthday to bring him in. Through long debate over this, and all your support, the final decision was made, two days ago, as ive been battle a cold which keeps going into broncitis, and two weeks ago pneumonia, i fought off the pneumonia, but within three days right back into broncitis, i got to the point where i couldnt breath so we rushed to my primary (no sennse sitting in a ER waiting room), he could not believe my color, or that i was standing, my 02 stats were at 70, which really surprised all of us, but none the less i was getting no oxygen in either lungs from middle down, we did 3 nebulizer treatments and they could finally hear weezing, im on heavy duty steroids for the next month, antibiotics and a stonger inhaler,nO choice i must kick my cigerette habit pronto!!! will need to see a allergist, for ashma and shots, (the cats are killing me too), then will find a pulmonologist, Doc says previous x-ray during pneumonia showed i have what he calls mito-emphesima, from smoking, which of course would have happened later in life but because of mito it is now. Mito is progressing faster than they thought it would. That is why the desperation in the biopsy, if they know the mutation they can look at better options of treatment which they assured me there is new treatment out there. Im not ready to be this ill, so if you dont hear from me as often you know why, i will try to keep you all updated and try to teach my kids and husband Bob how to keep yas posted if i cant. Im really tired, and my bed is where im spending all my time as trying to get up and down the stairs is impossible, God only knows what my house looks like! Matt is scared for me, my older two are doing the denial thing right now, and Bob did not take the news from the doc very well, he totally lost it. Bob knows to get me right to the hospital before my o2 sats get that bad again. He is working close to home and the older kids are hear to help too. I have oxygen to suck on for now and will get a nebulizer hear at home. Doc explained that every cold, ashma attack, will be worse each time and i dont have to explain the rest to you, you all know what that means. Well i have to go lay back down. I keep you all in my prayers! BarbPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 June thirteenth is my hubby and my 18th Anniversary. He chose a great day to be born. LOL I am sure it has been horrid trying to care for the kids while yourself feeling as ill as you have been. I sure hope the steroids will be able to open up your airways and give you some relief quickly. I hope the docs are wrong that this is causing your Mito to progress quickly and hopefully if you do stop smoking as time goes on you will be able to regain your strength and do much better. Do get plenty of rest and FORGET the house like others said. You are what is important right now, not the cleanliness of the home! See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (18 months) Probable Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16) migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (16 months) SID, dev. delays, right hemiparesis issues... Matt will have biopsy > > > Hey all, i have to keep this brief, we decide for the 2nd biopsy for > Matt as he is strong enough to go through this at this time, we > decide that we will wait until after June 13, which will be his > ninth birthday. We told them just to give Matt a day or two after > his birthday to bring him in. Through long debate over this, and > all your support, the final decision was made, two days ago, as ive > been battle a cold which keeps going into broncitis, and two weeks > ago pneumonia, i fought off the pneumonia, but within three days > right back into broncitis, i got to the point where i couldnt breath > so we rushed to my primary (no sennse sitting in a ER waiting room), > he could not believe my color, or that i was standing, my 02 stats > were at 70, which really surprised all of us, but none the less i > was getting no oxygen in either lungs from middle down, we did 3 > nebulizer treatments and they could finally hear weezing, im on > heavy duty steroids for the next month, antibiotics and a stonger > inhaler,nO choice i must kick my cigerette habit pronto!!! will > need to see a allergist, for ashma and shots, (the cats are killing > me too), then will find a pulmonologist, Doc says previous x-ray > during pneumonia showed i have what he calls mito-emphesima, from > smoking, which of course would have happened later in life but > because of mito it is now. Mito is progressing faster than they > thought it would. That is why the desperation in the biopsy, if > they know the mutation they can look at better options of treatment > which they assured me there is new treatment out there. Im not > ready to be this ill, so if you dont hear from me as often you know > why, i will try to keep you all updated and try to teach my kids and > husband Bob how to keep yas posted if i cant. Im really tired, and > my bed is where im spending all my time as trying to get up and down > the stairs is impossible, God only knows what my house looks like! > Matt is scared for me, my older two are doing the denial thing right > now, and Bob did not take the news from the doc very well, he > totally lost it. Bob knows to get me right to the hospital before > my o2 sats get that bad again. He is working close to home and the > older kids are hear to help too. I have oxygen to suck on for now > and will get a nebulizer hear at home. Doc explained that every > cold, ashma attack, will be worse each time and i dont have to > explain the rest to you, you all know what that means. Well i have > to go lay back down. I keep you all in my prayers! Barb > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.