Guest guest Posted June 24, 2000 Report Share Posted June 24, 2000 Hi Diane, Glad to hear that Kody's first IVIG treatment went well! Wade often has a minor asthma flare during or just after IVIG & we give him a treatment & that's usually the end of it. I will continue to pray that you will see good results from the IVIG & that Kody will be a " new boy " on IVIG... Wade sure was! Take care & God Bless you & yours! Beth At 07:36 AM 6/24/00 EDT, you wrote: >Hi! I am once again humbled by God's grace and His love for us. He sure >protected Kody yesterday. And He gave me the strength to be able to be strong >for Kody when all I wanted to do was sit down and cry with him! They had a >hard time finding a vein to put the IV in. The nurse put the Emla cream (it >numbs the skins so the needle doesn't hurt) on three different places so that >if one spot didn't work he would be ready to try another spot. Well, after a >half an hour of looking, the nurse that actually put the IV in for Kody found >a vein, unfortunately it wasn't where the Emla cream was. But Kody was so >good, he held his arm so still even though he was crying and saying over and >over " Just one poke, just one poke.... " and then when it was in, naturally >the nurse had to make sure it was working first and Kody kept saying thru his >tears " Please be done now, please be down now " . And once we were done he was >fine and we went back to our room where he started playing with his special >toys. Once the IVIG was started he scowled at his hand and said that it hurt, >but after a minute he was back to playing. Eventually he started to get real >flushed looking and ran a low fever, but nothing major. He even played on his >new bike when we got home! His chest was real rattely all day though, so by >evening we had to give him an asthma treatment but other than that he >tolerated the whole thing very well. I had given him Motrin and some Benedryl >before we left the house and I think that helped a lot. Thank you all so much >for your prayers, and to the pedpid group for your wonderful suggestions to >make this easier for Kody! Now we wait and see if we see a difference! > >In Christ, >Diane > >------------------------------------------------------------------------ >Was the salesman clueless? Productopia has the answers. >http://click./1/4633/13/_/480115/_/961846646/ >------------------------------------------------------------------------ > >This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > > Beth Rathburn Mom to Wade, 13 yrs. with CVID;Asthma,steroid dependent;GERD,post Nissen Fundoplication & Pylormyotomy;Chronic Sinusitis;Eczema;Neutropenia; ? Atypical Migraines vs.mild seizure disorder - still under investigation; etc..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2000 Report Share Posted June 24, 2000 Diane, I was thinking of Kody all day yesterday and hoping that you would post...I am so glad that it went alright, I only wish that they could have had an easier time finding the vein! Hopefully it will help him and he will feel better. I am glad that he got the card, hopefully others will take advantage,too and let me send them one also...and if you want another for Kody just let me know...even if it for a birthday or whatever...I know kids love to get mail (mine do). I have also sent you a package and it should be there this week...I am hoping it will get there ok...forgot to tell the postman to put tape across the back! Let me know...if it's missing or all messed up I'll send another one...it's just a little something for you to try... Take care and my prayers are with you and Kody, Love, Hope Amber 9 1/2 IgA-, asthma, too much IgE, Bipolar, ADHD 12 > Hi! I am once again humbled by God's grace and His love for us. He sure > protected Kody yesterday. And He gave me the strength to be able to be strong > for Kody when all I wanted to do was sit down and cry with him! They had a > hard time finding a vein to put the IV in. The nurse put the Emla cream (it > numbs the skins so the needle doesn't hurt) on three different places so that > if one spot didn't work he would be ready to try another spot. Well, after a > half an hour of looking, the nurse that actually put the IV in for Kody found > a vein, unfortunately it wasn't where the Emla cream was. But Kody was so > good, he held his arm so still even though he was crying and saying over and > over " Just one poke, just one poke.... " and then when it was in, naturally > the nurse had to make sure it was working first and Kody kept saying thru his > tears " Please be done now, please be down now " . And once we were done he was > fine and we went back to our room where he started playing with his special > toys. Once the IVIG was started he scowled at his hand and said that it hurt, > but after a minute he was back to playing. Eventually he started to get real > flushed looking and ran a low fever, but nothing major. He even played on his > new bike when we got home! His chest was real rattely all day though, so by > evening we had to give him an asthma treatment but other than that he > tolerated the whole thing very well. I had given him Motrin and some Benedryl > before we left the house and I think that helped a lot. Thank you all so much > for your prayers, and to the pedpid group for your wonderful suggestions to > make this easier for Kody! Now we wait and see if we see a difference! > > In Christ, > Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2000 Report Share Posted June 24, 2000 Thank you, Hope! You are so sweet! Someday wouldn't it be great if we could all meet somewhere?! The nurses said that with Kody's veins the way they are, it won't be long and he''ll need a port for the IVIG. I guess it has to do with the way he scars, it bubbles up funny and when it does that in a vein it closes it off, enough so that if is hard to access that spot again. I thank you all for your prayers Friday!! I am looking for a " new " Kody, too. So far though, he still has his sinus infection. Diane, Mom to Kody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2000 Report Share Posted June 24, 2000 Thanks, Beth. I hope to see results soon, too. As for results, I am praying for you too! How is Wade? Is his health good? His spirits? You have so much support I can't see how you will lose the trial. Especially since you have your other doctors support. And especially with all of us praying for you! I am so sorry you are going through all of this. Diane Mom to Kody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 Dear Diane, Kody, is a brave little boy.. next time will be better. my daughter is so routine now she sleeps through most of it. annette and alissa >From: TheSchmidtBox@... >Reply-To: PedPIDegroups >To: clarksrus@..., ccconst@..., vflegel@..., >geetings4@..., PedPIDegroups, Chris0171@... >Subject: Kody >Date: Sat, 24 Jun 2000 07:36:14 EDT > >Hi! I am once again humbled by God's grace and His love for us. He sure >protected Kody yesterday. And He gave me the strength to be able to be >strong >for Kody when all I wanted to do was sit down and cry with him! They had a >hard time finding a vein to put the IV in. The nurse put the Emla cream (it >numbs the skins so the needle doesn't hurt) on three different places so >that >if one spot didn't work he would be ready to try another spot. Well, after >a >half an hour of looking, the nurse that actually put the IV in for Kody >found >a vein, unfortunately it wasn't where the Emla cream was. But Kody was so >good, he held his arm so still even though he was crying and saying over >and >over " Just one poke, just one poke.... " and then when it was in, naturally >the nurse had to make sure it was working first and Kody kept saying thru >his >tears " Please be done now, please be down now " . And once we were done he >was >fine and we went back to our room where he started playing with his special >toys. Once the IVIG was started he scowled at his hand and said that it >hurt, >but after a minute he was back to playing. Eventually he started to get >real >flushed looking and ran a low fever, but nothing major. He even played on >his >new bike when we got home! His chest was real rattely all day though, so by >evening we had to give him an asthma treatment but other than that he >tolerated the whole thing very well. I had given him Motrin and some >Benedryl >before we left the house and I think that helped a lot. Thank you all so >much >for your prayers, and to the pedpid group for your wonderful suggestions to >make this easier for Kody! Now we wait and see if we see a difference! > >In Christ, >Diane ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 Annette, thanks! I know that next time for him will be better, as we all know what to expect now. I am so glad that you and your family are doing so well. Wonderful that Alissa is on her way to camp! My two oldest daughters left today for camp, and I miss them already! Kaila, my nine year old, left me the sweetest email note today. She must have wrote it last night. How precious our children are! By the way, keep us posted on that lump...I am praying for you! Diane, Mom to Kody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 Diane - sorry to hear that Kody had such a rough experience. sounds like you've used alot of the standbys that we do, push the fluids, pre-medicate, alot of luck and a good stick-er. hope the next time is better. also hope his chest is better. how often will he be infused? Ursula Holleman uahollem@... and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com /group/PedPID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2000 Report Share Posted June 27, 2000 Oh, Diane! My heart breaks for you, and i am praying for you and your husband and children. I want to encourage you, as a sister in Christ, that you did the right thing in asking him to leave. I know that sounds contradictory, but you must draw a line when someone is doing the wrong thing.. In " Love Must Be Tough " dobson explains the need to create a crisis--done with the intention of RESTORATION, NOT divorce. The hope is that it will wake up the one to recognize the need for change. May God strengthen you to care for your children, i'm so sorry this problem has caused such a disruption in your life. Fix your eyes on Jesus, and stand firm on HIs word. I'm prayng the pain will ease for you and the children, and that your husbands misery will increase until he is ready to hand over his life to his Lord--whether or not he yet knows him as Savior. Please feel free to em me directly if you need to vent more! Love in Christ, maurita ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2000 Report Share Posted June 28, 2000 Thanks Cody, hope the girls have a wonderful time..at camp.. mine cannot wait to leave.. thank you for the prayers. God Bless, annette and alissa >From: TheSchmidtBox@... >Reply-To: PedPIDegroups >To: PedPIDegroups >Subject: Re: Kody >Date: Mon, 26 Jun 2000 17:31:28 EDT > >Annette, thanks! I know that next time for him will be better, as we all >know >what to expect now. I am so glad that you and your family are doing so >well. >Wonderful that Alissa is on her way to camp! My two oldest daughters left >today for camp, and I miss them already! Kaila, my nine year old, left me >the >sweetest email note today. She must have wrote it last night. How precious >our children are! By the way, keep us posted on that lump...I am praying >for >you! >Diane, Mom to Kody ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2000 Report Share Posted June 28, 2000 Dear Diane: I truly admire you and your inner strength.. I will certainly pray for you and your family.. that all will be put into place and HE will watch after you and the children.. God Bless,] annette and alissa >From: TheSchmidtBox@... >Reply-To: PedPIDegroups >To: PedPIDegroups >Subject: Re: Kody >Date: Tue, 27 Jun 2000 06:57:19 EDT > >So far Kody's chest isn't better, still sounds rough. But he isn't as >congested in his head right now, so I think the Ceftin with the IVIG is >working so far! He has to go every three weeks for infusion. I did try all >the tips given to me here on the pedpid list, and it really did help. I was >glad I was informed and could make choices for Kody instead of just >standing >there watching the nurse take over. I felt I had some control over a pretty >helpless situation. So far doing the IVIG at home hasn't been mentioned, >although it was brought up a while back when the possibility of IVIG was >first mentioned so I don't know if Kody's doctor feels comfortable with >that >at all or just wants to do a few in the hospital first. We have our next >appointment with the immunologist on August 2nd and I thought I would ask >about it then. > >Hope, Thanks so much for your " starter " kit! It arrived yesterday, safe and >sound. I can't wait to start! I can see endless possibilities! > >I do have some news to share with all of you. I would really appreciate >your >prayers. My husband, while a great man that I love so very much, is an >alcoholic. It has gotten worse lately, and last night I asked him to move >out. This goes against all of my Christian upbringing, not to mention >breaks >my heart. The scene was not pretty, and I feel like I am just reeling today >with shock and pain. I know that I need to be strong for my four wonderful >children, especially for Kody, but I don't feel so strong just this second. >My stomach is in knots. My greatest fear is that he'll quit his job now and >move back up to the U.P. (upper peninsula of Mich.) where his family is >located. I know that makes sense for him, but if he does that, then Kody >will >lose his excellent insurance and I'll be forced to accept Medicaid for him, >and I don't think his pediatrician or his immunologist accept Medicaid. I >guess I have a lot of phone calls to make this morning to find this stuff >out. Anyway, thanks guys. > >Diane, Mom to Kody ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2000 Report Share Posted June 28, 2000 Diane, This is an unbelievably tough time for you. I'm sure you prayed a lot before making this decision. I will pray for you, and your children and the insurance. I know it is very tough t o change docs if you have found some you trust. Is there a chance your husband will stop drinking now? He must love you and the children very much. Has he tried to stop drinking before? I don't drink, or my husband. However, my grandfather and two of my mom's brothers were alcoholic. Take good care of yourself during this scary time. Jan TheSchmidtBox@... wrote: > So far Kody's chest isn't better, still sounds rough. But he isn't as > congested in his head right now, so I think the Ceftin with the IVIG is > working so far! He has to go every three weeks for infusion. I did try all > the tips given to me here on the pedpid list, and it really did help. I was > glad I was informed and could make choices for Kody instead of just standing > there watching the nurse take over. I felt I had some control over a pretty > helpless situation. So far doing the IVIG at home hasn't been mentioned, > although it was brought up a while back when the possibility of IVIG was > first mentioned so I don't know if Kody's doctor feels comfortable with that > at all or just wants to do a few in the hospital first. We have our next > appointment with the immunologist on August 2nd and I thought I would ask > about it then. > > Hope, Thanks so much for your " starter " kit! It arrived yesterday, safe and > sound. I can't wait to start! I can see endless possibilities! > > I do have some news to share with all of you. I would really appreciate your > prayers. My husband, while a great man that I love so very much, is an > alcoholic. It has gotten worse lately, and last night I asked him to move > out. This goes against all of my Christian upbringing, not to mention breaks > my heart. The scene was not pretty, and I feel like I am just reeling today > with shock and pain. I know that I need to be strong for my four wonderful > children, especially for Kody, but I don't feel so strong just this second. > My stomach is in knots. My greatest fear is that he'll quit his job now and > move back up to the U.P. (upper peninsula of Mich.) where his family is > located. I know that makes sense for him, but if he does that, then Kody will > lose his excellent insurance and I'll be forced to accept Medicaid for him, > and I don't think his pediatrician or his immunologist accept Medicaid. I > guess I have a lot of phone calls to make this morning to find this stuff > out. Anyway, thanks guys. > > Diane, Mom to Kody > > ------------------------------------------------------------------------ > Whassuuup?! > http://click./1/5996/13/_/480115/_/962122712/ > ------------------------------------------------------------------------ > > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 Dear Diane: I hope that your husband can see the light and join a support group that can get him through this.. when I first married my husband we went to my uncle and had our blood work done at his office.. my uncle for some reason ran a full chem panel on my husband and found that his liver enzymes were very high and dangerous and come to find out that he had been drinking since he was 14 years old.. I refused to marry him till he came off all alcohol. Hang in there and trust in the Lord... we are with you, annette and alissa > >Reply-To: PedPIDegroups >To: PedPIDegroups >Subject: Re: Kody >Date: Wed, 28 Jun 2000 19:09:55 -0500 > >Diane, > This is an unbelievably tough time for you. I'm sure you >prayed a lot before making this decision. I will pray for you, >and your children and the insurance. I know it is very tough >t o change docs if you have found some you trust. Is there a >chance your husband will stop drinking now? He must love >you and the children very much. Has he tried to stop drinking >before? I don't drink, or my husband. However, my grandfather >and two of my mom's brothers were alcoholic. Take good care of >yourself during this scary time. > Jan > >TheSchmidtBox@... wrote: > > > So far Kody's chest isn't better, still sounds rough. But he isn't as > > congested in his head right now, so I think the Ceftin with the IVIG is > > working so far! He has to go every three weeks for infusion. I did try >all > > the tips given to me here on the pedpid list, and it really did help. I >was > > glad I was informed and could make choices for Kody instead of just >standing > > there watching the nurse take over. I felt I had some control over a >pretty > > helpless situation. So far doing the IVIG at home hasn't been mentioned, > > although it was brought up a while back when the possibility of IVIG was > > first mentioned so I don't know if Kody's doctor feels comfortable with >that > > at all or just wants to do a few in the hospital first. We have our next > > appointment with the immunologist on August 2nd and I thought I would >ask > > about it then. > > > > Hope, Thanks so much for your " starter " kit! It arrived yesterday, safe >and > > sound. I can't wait to start! I can see endless possibilities! > > > > I do have some news to share with all of you. I would really appreciate >your > > prayers. My husband, while a great man that I love so very much, is an > > alcoholic. It has gotten worse lately, and last night I asked him to >move > > out. This goes against all of my Christian upbringing, not to mention >breaks > > my heart. The scene was not pretty, and I feel like I am just reeling >today > > with shock and pain. I know that I need to be strong for my four >wonderful > > children, especially for Kody, but I don't feel so strong just this >second. > > My stomach is in knots. My greatest fear is that he'll quit his job now >and > > move back up to the U.P. (upper peninsula of Mich.) where his family is > > located. I know that makes sense for him, but if he does that, then Kody >will > > lose his excellent insurance and I'll be forced to accept Medicaid for >him, > > and I don't think his pediatrician or his immunologist accept Medicaid. >I > > guess I have a lot of phone calls to make this morning to find this >stuff > > out. Anyway, thanks guys. > > > > Diane, Mom to Kody > > > > ------------------------------------------------------------------------ > > Whassuuup?! > > http://click./1/5996/13/_/480115/_/962122712/ > > ------------------------------------------------------------------------ > > > > This forum is open to parents and caregivers of children diagnosed with >a Primary Immune Deficiency. Opinions or medical advice stated here are >the sole responsibility of the poster and should not be taken as >professional advice. > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 Annette--what a perceptive uncle!!! Perhaps he wasn't looking for anything, but that is a powerful show of God's hand, to make sure the problem was resolved before you married him! I'm sure your life together is immensely better, what a blessing for both of you, as well as your children! What a merciful gracious God we have!! I'm looking forward to hearing the results of your biopsy. Have'nt posted a response to you until now, but i'm praying! maurita ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2000 Report Share Posted June 30, 2000 Maurita, Thank you, but my husband to this day will tell you that he still has a craving for alcohol. I pray you find the answer, my biopsy and ultrasound came back negative.. and the same uncle was right with his diagnosis.. I do indeed have fibercystic disease in breasts, and he diagnosed me at 14 without an ultrasound and biopsy.....? take care and will keep you in our prayers, annette and alissa > >Reply-To: PedPIDegroups >To: PedPIDegroups >Subject: Re: Kody >Date: Thu, 29 Jun 2000 20:59:31 -0700 > >Annette--what a perceptive uncle!!! Perhaps he wasn't looking for >anything, but that is a powerful show of God's hand, to make sure the >problem was resolved before you married him! I'm sure your life together >is immensely better, what a blessing for both of you, as well as your >children! What a merciful gracious God we have!! > >I'm looking forward to hearing the results of your biopsy. Have'nt >posted a response to you until now, but i'm praying! maurita >________________________________________________________________ >YOU'RE PAYING TOO MUCH FOR THE INTERNET! >Juno now offers FREE Internet Access! >Try it today - there's no risk! For your FREE software, visit: >http://dl.www.juno.com/get/tagj. ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2000 Report Share Posted June 30, 2000 annette--tell me if i'm too nosy--can your husband resist the craving, and does he realize the blessing of not being trapped in the death grip of active alchoholism? I pray God will remove the craving once and for all, replacing it with a craving for God. I know it takes a long time, but perhaps God will mercifully release him from that finally after all. If that sounds presumptuous, i sure don't mean to be--maybe you've been praying that way for years--my perspective on this is that it's okay to ask, we just must be willing to accept a " no " answer...Have a good weekend! maurita ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
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