Guest guest Posted December 7, 2006 Report Share Posted December 7, 2006 Olivia has been very sick this week. We first noticed that when the weather would change and cooler temperatures would happen back in October that Olivia would get a stuffy nose and a cough. This went away when it would warm up. The past weeks of colder weather Olivia developed a deep cough, runny nose, and by this past weekend fever and labored breathing with rattling sounds in her lungs. I took her to her pediatrician on Tuesday and it was discovered that not only does Olivia have a cold but she also has asthmatic bronchitis. In talking with her pediatrician after he made a phone call to Dr. Gelfand, JD's pulmonologist, they both agreed that in all likelyhood Olivia has asthma. Dr. Gelfand warned us of this due to her prematurity and since both I and Mandy have sinus problems. I too have been diagnosed with mild asthma but I do not have to use an inhaler. Olivia seems to be a different story. Both her pediatrician and Dr. Gelfand have told us to be careful with her especially with the winter months and exposure to smoking and heavy fragrances. We will have to do nothing different then we already havent done with her with the exception that she cannot be around smoking or the smell of smoke at all. Essentially this is the way we have been with both JD and Olivia since they were both home because of Dr. Gelfands recommendations. They have also informed us that heavy fragrances will have the same effect as smoke. Olivia is taking bronchodilators similar to what JD is taking for his lungs just not as complex and she is on an antibiotic. She is responding to this medications but it will take a week or so to get her over this cold and the bronchitis. We are also keeping her distance from her brother since he has also been sick. is doing better somewhat. He is getting back to his old self but still we can tell he is still getting over the infections that were present with him during Thanksgiving week. He seems to be quite happier at home than in the hospital and a little more playful. He will get his bone conduction hearing aid soon and make a visit to Dr. Gelfand at vent clinic to assess his progress. We have noticed that JD is starting to pick up weight at a more rapid pace now. Currently he is right at 20 lbs and close to 29 inches in length. He has learned to lift his shoulder off the bed and make more sounds with his trach in place. He has been fitted with passy-muir speaking valve to allow him to vocalize and to teach him to breath through the mouth better. We will start using this valve more and more as he gets used to it. Just to be able to hear his voice will be good for us right now. JD is still under very many medications and hopefully will be weaned off of most of them soon. The winter months will be harder for JD and we were told to expect this. Mainly though his doctors think that he hasnt regressed any with the limited visits to the hospital that he has had. We may still be on track for decannulation or removal of the trach by June if Dr. Brown is successful with choanal atresia repair #1 which is being considered in late March early April. Regardless JD has taken so many steps and come so far in a year it is just amazing to us. Last year at this time, there was not as much hope as there is now. We suspect that JD has also been blessed with intelligence. He seems to be very bright and alert to his outside world in his own way and is starting to smile more and more. He picks up things so fast. He is now holding objects with both hands and transferring them from hand to hand and also holding onto them. He has also learned how to set off his alarms on his own so that he can keep his nurses and his parents on their toes. He is now a very active little boy despite his illnesses. As you can see progress is being made, but there is still so much more for him to learn. He currently is learning sign language from his speech teacher and making progress at that. Perhaps the biggest news we can report to you is JD has been free of the ventilator for 46 days and counting. The longer off the vent the stronger his lungs get. Dr. Gelfand does suspect that JD too will have moderate to severe asthma and allergies as we have learned now that Olivia has. We pray that all is well with each of you. Though we dont get to see you, we are thinking and praying for you. We will update you more when we learn more and know more. Keep believing and Keep praying. Miracles do happen and dreams do come true. May the grace, peace, love, and mercy or our Lord be with each of you. In His Hands and still holding onto that rope, , Mandy, Olivia Leigh Barrett (14 months) and Barton (cHArgEd 14 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2006 Report Share Posted December 8, 2006 great news > > Olivia has been very sick this week. We first noticed that when the > weather > would change and cooler temperatures would happen back in October that > Olivia > would get a stuffy nose and a cough. This went away when it would warm up. > > The past weeks of colder weather Olivia developed a deep cough, runny > nose, and > by this past weekend fever and labored breathing with rattling sounds in > her > lungs. I took her to her pediatrician on Tuesday and it was discovered > that > not only does Olivia have a cold but she also has asthmatic bronchitis. In > > talking with her pediatrician after he made a phone call to Dr. > Gelfand, > JD's pulmonologist, they both agreed that in all likelyhood Olivia has > asthma. > Dr. Gelfand warned us of this due to her prematurity and since both I and > Mandy have sinus problems. I too have been diagnosed with mild asthma but > I do > not have to use an inhaler. Olivia seems to be a different story. Both her > > pediatrician and Dr. Gelfand have told us to be careful with her > especially with > the winter months and exposure to smoking and heavy fragrances. We will > have > to do nothing different then we already havent done with her with the > exception that she cannot be around smoking or the smell of smoke at all. > Essentially this is the way we have been with both JD and Olivia since > they were both > home because of Dr. Gelfands recommendations. They have also informed us > that > heavy fragrances will have the same effect as smoke. Olivia is taking > bronchodilators similar to what JD is taking for his lungs just not as > complex and she > is on an antibiotic. She is responding to this medications but it will > take > a week or so to get her over this cold and the bronchitis. We are also > keeping her distance from her brother since he has also been sick. > > is doing better somewhat. He is getting back to his old self > but > still we can tell he is still getting over the infections that were > present > with him during Thanksgiving week. He seems to be quite happier at home > than in > the hospital and a little more playful. He will get his bone conduction > hearing aid soon and make a visit to Dr. Gelfand at vent clinic to assess > his > progress. We have noticed that JD is starting to pick up weight at a more > rapid > pace now. Currently he is right at 20 lbs and close to 29 inches in > length. > He has learned to lift his shoulder off the bed and make more sounds with > his > trach in place. He has been fitted with passy-muir speaking valve to allow > him > to vocalize and to teach him to breath through the mouth better. We will > start using this valve more and more as he gets used to it. Just to be > able to > hear his voice will be good for us right now. JD is still under very many > medications and hopefully will be weaned off of most of them soon. The > winter > months will be harder for JD and we were told to expect this. Mainly > though his > doctors think that he hasnt regressed any with the limited visits to the > hospital that he has had. We may still be on track for decannulation or > removal of > the trach by June if Dr. Brown is successful with choanal atresia repair > #1 > which is being considered in late March early April. Regardless JD has > taken > so many steps and come so far in a year it is just amazing to us. Last > year at > this time, there was not as much hope as there is now. We suspect that JD > has also been blessed with intelligence. He seems to be very bright and > alert > to his outside world in his own way and is starting to smile more and > more. He > picks up things so fast. He is now holding objects with both hands and > transferring them from hand to hand and also holding onto them. He has > also > learned how to set off his alarms on his own so that he can keep his > nurses and his > parents on their toes. He is now a very active little boy despite his > illnesses. As you can see progress is being made, but there is still so > much more > for him to learn. He currently is learning sign language from his speech > teacher and making progress at that. Perhaps the biggest news we can > report to you > is JD has been free of the ventilator for 46 days and counting. The longer > > off the vent the stronger his lungs get. Dr. Gelfand does suspect that JD > too > will have moderate to severe asthma and allergies as we have learned now > that > Olivia has. > > We pray that all is well with each of you. Though we dont get to see you, > we > are thinking and praying for you. We will update you more when we learn > more > and know more. Keep believing and Keep praying. Miracles do happen and > dreams do come true. > > May the grace, peace, love, and mercy or our Lord be with each of you. > > In His Hands and still holding onto that rope, > > , Mandy, Olivia Leigh Barrett (14 months) and Barton > (cHArgEd > 14 months) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2006 Report Share Posted December 8, 2006 Wow - lots of great news and progress along with the more difficult stuff that continues. I hope both kids stay healthy through the cold months and continue to thrive and grow and learn! You guys are doing a great job of hanging in there. Hopefully, even better times are on the way! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
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