Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Hi friends: Just dropping by to say hello and to let you know that we're finally home from Sick Kids Hospital just in time for the holidays to be over. I can't tell you how much it's meant to have your support and kind words coming our way during this, our toughest time yet. Many times I thought of you all and realized that I could handle it because most of you have and I could turn to you if I needed a shoulder. To some of you, I owe a phone call. When I get settled and can talk about things without getting exasperated, I'm going to make a coffee, sit down, and start dialing. I know most of you understand what it's like to dread having to repeat 'the story' just one more time. I hardly spoke to anyone on the phone during this admission. I feel like I've become weaker with each hospital stay and I fear it may be quite a while before I bounce back from the trauma of this one. Anyway, enough about me. Kirkland's doing well. We waited 2.5 weeks to get a bi-pap machine to bring home but boy, has it been worth it. Immediately after being put on it for the first time in hospital, his sats increased and his respirations & heart rate normalized. Everyone involved breathed a sigh of relief for he responded so well, didn't fight it, and came off it no problem too. The initial start-up wasn't done in ICU but rather, on the floor (which was very risky) but we'd decided no ventilator anyway so there was no need for ICU. He's really only using it at night but the odd afternoon he was working a bit harder on his breathing so we put him on for a bit while he was awake and it did the trick. Kirk's upper right lobe was still collapsed when last x-rayed but I'm told that it still could re-inflate despite the cronic lung problems. I'm not holding my breath though. I'm just so relieved to be able to provide him with some breathing support and alleviate most of his suffering. When we took him in, he was indrawing so much that his chest was heaving off the bed with each breath. His heartrate was180, resps in the 60's, sats in the mid 80's on 10 litres of O2 (masked). Tonight, he's asleep but not yet on the bi-pap. His sats are 97%, 1 litre O2, nasal prongs, heartrate- 90 respirations- 30, no indrawing! He hasn't been like this in a year. When he coughs, the secretions are clear and they don't need to be suctioned out. The coughing's decreased a ton too. Obviously, my relief is overwhelming and I feel so grateful to our doctors who moved on this quickly. It was actually Kirk's mito doc, Dr. Feigenbaum, who ran with it and got us the help we needed stat! And I thank those of you who coached me through these respiratory issues. The power of the internet is simply amazing -here's proof: Many of you were recommending the Cough Assist Machine to me and if you recall, I started looking into it in Canada but no one had heard of it so I wasn't getting anywhere. Vicki (thank you so much for interupting the discussion to tell me that you knew of a Caringbridge family in Ontario who had one) gave the address of baby , an SMA baby from Ontario . I in turn, wrote to his mom, , who immediately filled me in on who had helped her access the cough assist machine and bi-pap. Fortunately, was seen by a pulmonologist at Sick Kids Hospital which is Kirk's hospital too- Dr. McLusky. I gave his name to Dr. Feigenbaum (Kirk's mito doc) that day, she contacted him and he recommended we consider the bi-pap. They reserved a bed for Kirk to come in and be assessed. We arrived in Emerg a day early which upped the whole process. And the rest is history! Ironically, the nurse who first cared for Kirkland on the floor had fallen in love with while he was in and now she does private nursing for him in borough. I've communicated with 's mom, , since then through Tiff, our 'common' nurse. She was great to us while Kirk was in and hopefully we'll all keep in touch. Wild eh?? It's a small world - and it all started with this group! To the new families who are struggling to cope with mito, let this be encouraging to you all. There is so much to learn from these mito parent experts. Keep asking the questions, you never know when their advice, combined with that of your doctors', just might save your child's life. Happy New Year to All and thanks for being our friends. love and Kirkland (almost 4yrs) Complex One Deficiency, seizures, dev'l delays, 24 hr O2, oximetry, G-J tube, AFO's, suction, nebulizer, bi-pap, autonomic dysfuction, CVI.... **plus Evan 10 yrs, and Carson 7 yrs** Check us out at www.caringbridge.org/canada/kirklandk/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Hi friends: Just dropping by to say hello and to let you know that we're finally home from Sick Kids Hospital just in time for the holidays to be over. I can't tell you how much it's meant to have your support and kind words coming our way during this, our toughest time yet. Many times I thought of you all and realized that I could handle it because most of you have and I could turn to you if I needed a shoulder. To some of you, I owe a phone call. When I get settled and can talk about things without getting exasperated, I'm going to make a coffee, sit down, and start dialing. I know most of you understand what it's like to dread having to repeat 'the story' just one more time. I hardly spoke to anyone on the phone during this admission. I feel like I've become weaker with each hospital stay and I fear it may be quite a while before I bounce back from the trauma of this one. Anyway, enough about me. Kirkland's doing well. We waited 2.5 weeks to get a bi-pap machine to bring home but boy, has it been worth it. Immediately after being put on it for the first time in hospital, his sats increased and his respirations & heart rate normalized. Everyone involved breathed a sigh of relief for he responded so well, didn't fight it, and came off it no problem too. The initial start-up wasn't done in ICU but rather, on the floor (which was very risky) but we'd decided no ventilator anyway so there was no need for ICU. He's really only using it at night but the odd afternoon he was working a bit harder on his breathing so we put him on for a bit while he was awake and it did the trick. Kirk's upper right lobe was still collapsed when last x-rayed but I'm told that it still could re-inflate despite the cronic lung problems. I'm not holding my breath though. I'm just so relieved to be able to provide him with some breathing support and alleviate most of his suffering. When we took him in, he was indrawing so much that his chest was heaving off the bed with each breath. His heartrate was180, resps in the 60's, sats in the mid 80's on 10 litres of O2 (masked). Tonight, he's asleep but not yet on the bi-pap. His sats are 97%, 1 litre O2, nasal prongs, heartrate- 90 respirations- 30, no indrawing! He hasn't been like this in a year. When he coughs, the secretions are clear and they don't need to be suctioned out. The coughing's decreased a ton too. Obviously, my relief is overwhelming and I feel so grateful to our doctors who moved on this quickly. It was actually Kirk's mito doc, Dr. Feigenbaum, who ran with it and got us the help we needed stat! And I thank those of you who coached me through these respiratory issues. The power of the internet is simply amazing -here's proof: Many of you were recommending the Cough Assist Machine to me and if you recall, I started looking into it in Canada but no one had heard of it so I wasn't getting anywhere. Vicki (thank you so much for interupting the discussion to tell me that you knew of a Caringbridge family in Ontario who had one) gave the address of baby , an SMA baby from Ontario . I in turn, wrote to his mom, , who immediately filled me in on who had helped her access the cough assist machine and bi-pap. Fortunately, was seen by a pulmonologist at Sick Kids Hospital which is Kirk's hospital too- Dr. McLusky. I gave his name to Dr. Feigenbaum (Kirk's mito doc) that day, she contacted him and he recommended we consider the bi-pap. They reserved a bed for Kirk to come in and be assessed. We arrived in Emerg a day early which upped the whole process. And the rest is history! Ironically, the nurse who first cared for Kirkland on the floor had fallen in love with while he was in and now she does private nursing for him in borough. I've communicated with 's mom, , since then through Tiff, our 'common' nurse. She was great to us while Kirk was in and hopefully we'll all keep in touch. Wild eh?? It's a small world - and it all started with this group! To the new families who are struggling to cope with mito, let this be encouraging to you all. There is so much to learn from these mito parent experts. Keep asking the questions, you never know when their advice, combined with that of your doctors', just might save your child's life. Happy New Year to All and thanks for being our friends. love and Kirkland (almost 4yrs) Complex One Deficiency, seizures, dev'l delays, 24 hr O2, oximetry, G-J tube, AFO's, suction, nebulizer, bi-pap, autonomic dysfuction, CVI.... **plus Evan 10 yrs, and Carson 7 yrs** Check us out at www.caringbridge.org/canada/kirklandk/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 I am so glad to hear the uplifting update about Kirkland. I can imagine this has been a rough go for you and your family. It is the gift of a mother's love that knows no bounds and he is very blessed to have you. Continuing our prayers. AnnKilbride wrote: Hi friends: Just dropping by to say hello and to let you know that we're finally home from Sick Kids Hospital just in time for the holidays to be over. I can't tell you how much it's meant to have your support and kind words coming our way during this, our toughest time yet. Many times I thought of you all and realized that I could handle it because most of you have and I could turn to you if I needed a shoulder. To some of you, I owe a phone call. When I get settled and can talk about things without getting exasperated, I'm going to make a coffee, sit down, and start dialing. I know most of you understand what it's like to dread having to repeat 'the story' just one more time. I hardly spoke to anyone on the phone during this admission. I feel like I've become weaker with each hospital stay and I fear it may be quite a while before I bounce back from the trauma of this one. Anyway, enough about me. Kirkland's doing well. We waited 2.5 weeks to get a bi-pap machine to bring home but boy, has it been worth it. Immediately after being put on it for the first time in hospital, his sats increased and his respirations & heart rate normalized. Everyone involved breathed a sigh of relief for he responded so well, didn't fight it, and came off it no problem too. The initial start-up wasn't done in ICU but rather, on the floor (which was very risky) but we'd decided no ventilator anyway so there was no need for ICU. He's really only using it at night but the odd afternoon he was working a bit harder on his breathing so we put him on for a bit while he was awake and it did the trick. Kirk's upper right lobe was still collapsed when last x-rayed but I'm told that it still could re-inflate despite the cronic lung problems. I'm not holding my breath though. I'm just so relieved to be able to provide him with some breathing support and alleviate most of his suffering. When we took him in, he was indrawing so much that his chest was heaving off the bed with each breath. His heartrate was180, resps in the 60's, sats in the mid 80's on 10 litres of O2 (masked). Tonight, he's asleep but not yet on the bi-pap. His sats are 97%, 1 litre O2, nasal prongs, heartrate- 90 respirations- 30, no indrawing! He hasn't been like this in a year. When he coughs, the secretions are clear and they don't need to be suctioned out. The coughing's decreased a ton too. Obviously, my relief is overwhelming and I feel so grateful to our doctors who moved on this quickly. It was actually Kirk's mito doc, Dr. Feigenbaum, who ran with it and got us the help we needed stat! And I thank those of you who coached me through these respiratory issues. The power of the internet is simply amazing -here's proof: Many of you were recommending the Cough Assist Machine to me and if you recall, I started looking into it in Canada but no one had heard of it so I wasn't getting anywhere. Vicki (thank you so much for interupting the discussion to tell me that you knew of a Caringbridge family in Ontario who had one) gave the address of baby , an SMA baby from Ontario . I in turn, wrote to his mom, , who immediately filled me in on who had helped her access the cough assist machine and bi-pap. Fortunately, was seen by a pulmonologist at Sick Kids Hospital which is Kirk's hospital too- Dr. McLusky. I gave his name to Dr. Feigenbaum (Kirk's mito doc) that day, she contacted him and he recommended we consider the bi-pap. They reserved a bed for Kirk to come in and be assessed. We arrived in Emerg a day early which upped the whole process. And the rest is history! Ironically, the nurse who first cared for Kirkland on the floor had fallen in love with while he was in and now she does private nursing for him in borough. I've communicated with 's mom, , since then through Tiff, our 'common' nurse. She was great to us while Kirk was in and hopefully we'll all keep in touch. Wild eh?? It's a small world - and it all started with this group! To the new families who are struggling to cope with mito, let this be encouraging to you all. There is so much to learn from these mito parent experts. Keep asking the questions, you never know when their advice, combined with that of your doctors', just might save your child's life. Happy New Year to All and thanks for being our friends. love and Kirkland (almost 4yrs) Complex One Deficiency, seizures, dev'l delays, 24 hr O2, oximetry, G-J tube, AFO's, suction, nebulizer, bi-pap, autonomic dysfuction, CVI.... **plus Evan 10 yrs, and Carson 7 yrs** Check us out at www.caringbridge.org/canada/kirklandk/ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2005 Report Share Posted January 4, 2005 Hi, Im so happy to hear he is doing so well. We have two children both with major breathing difficulties as well (not our mito child actually) and both are trached and need Oxygen and pressure support at times. Anyway, I took a look at your carebridge page and I wanted to ask.. where did you get the cover for his headrest on the kidkart? It looked like lambs wool? Our sons is rubbing the back of his head and making aquite a bald spot so I thought Id ask. Thanks! Kimberley --- Kilbride wrote: > Hi friends: > > Just dropping by to say hello and to let you know > that we're finally home from Sick Kids Hospital just > in time for the holidays to be over. I can't tell > you how much it's meant to have your support and > kind words coming our way during this, our toughest > time yet. Many times I thought of you all and > realized that I could handle it because most of you > have and I could turn to you if I needed a shoulder. > > > To some of you, I owe a phone call. When I get > settled and can talk about things without getting > exasperated, I'm going to make a coffee, sit down, > and start dialing. I know most of you understand > what it's like to dread having to repeat 'the story' > just one more time. I hardly spoke to anyone on > the phone during this admission. I feel like I've > become weaker with each hospital stay and I fear it > may be quite a while before I bounce back from the > trauma of this one. > > Anyway, enough about me. Kirkland's doing well. We > waited 2.5 weeks to get a bi-pap machine to bring > home but boy, has it been worth it. Immediately > after being put on it for the first time in > hospital, his sats increased and his respirations & > heart rate normalized. Everyone involved breathed a > sigh of relief for he responded so well, didn't > fight it, and came off it no problem too. The > initial start-up wasn't done in ICU but rather, on > the floor (which was very risky) but we'd decided no > ventilator anyway so there was no need for ICU. > He's really only using it at night but the odd > afternoon he was working a bit harder on his > breathing so we put him on for a bit while he was > awake and it did the trick. > > Kirk's upper right lobe was still collapsed when > last x-rayed but I'm told that it still could > re-inflate despite the cronic lung problems. I'm > not holding my breath though. > I'm just so relieved to be able to provide him with > some breathing support and alleviate most of his > suffering. When we took him in, he was indrawing so > much that his chest was heaving off the bed with > each breath. His heartrate was180, resps in the > 60's, sats in the mid 80's on 10 litres of O2 > (masked). > > Tonight, he's asleep but not yet on the bi-pap. His > sats are 97%, 1 litre O2, nasal prongs, heartrate- > 90 respirations- 30, no indrawing! He hasn't been > like this in a year. > When he coughs, the secretions are clear and they > don't need to be suctioned out. The coughing's > decreased a ton too. > > Obviously, my relief is overwhelming and I feel so > grateful to our doctors who moved on this quickly. > It was actually Kirk's mito doc, Dr. Feigenbaum, who > ran with it and got us the help we needed stat! And > I thank those of you who coached me through these > respiratory issues. The power of the internet is > simply amazing -here's proof: > > Many of you were recommending the Cough Assist > Machine to me and if you recall, I started looking > into it in Canada but no one had heard of it so I > wasn't getting anywhere. Vicki (thank you so much > for interupting the discussion to tell me that you > knew of a Caringbridge family in Ontario who had > one) gave the address of baby , an SMA baby > from Ontario . I in turn, wrote to his mom, , > who immediately filled me in on who had helped her > access the cough assist machine and bi-pap. > Fortunately, was seen by a pulmonologist at > Sick Kids Hospital which is Kirk's hospital too- Dr. > McLusky. > I gave his name to Dr. Feigenbaum (Kirk's mito doc) > that day, she contacted him and he recommended we > consider the bi-pap. They reserved a bed for Kirk > to come in and be assessed. We arrived in Emerg a > day early which upped the whole process. And the > rest is history! > Ironically, the nurse who first cared for Kirkland > on the floor had fallen in love with while he > was in and now she does private nursing for him in > borough. I've communicated with 's mom, > , since then through Tiff, our 'common' nurse. > She was great to us while Kirk was in and hopefully > we'll all keep in touch. > Wild eh?? It's a small world - and it all started > with this group! > > To the new families who are struggling to cope with > mito, let this be encouraging to you all. There is > so much to learn from these mito parent experts. > Keep asking the questions, you never know when their > advice, combined with that of your doctors', just > might save your child's life. > > Happy New Year to All and thanks for being our > friends. > > love and Kirkland (almost 4yrs) Complex One > Deficiency, seizures, dev'l delays, 24 hr O2, > oximetry, G-J tube, AFO's, suction, nebulizer, > bi-pap, autonomic dysfuction, CVI.... > **plus Evan 10 yrs, and Carson 7 yrs** > > Check us out at > www.caringbridge.org/canada/kirklandk/ > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 I am glad to hear you are home and Kirkland is doing better. I totally understand the feeling of needing to just veg and not call anyone while in the hospital (or here at Mayo either). I haven't responded to any e-mails over the past few days myself as yesterday was a packed day with several specialists and my brain was just too full to even try to read e-mails. I am still at Mayo, but today was much lighter in activities and so I can start to process through all the information from yesterday and also start reading some e-mails. I am so glad the bi-pap seems to be such a help for Kirkland. Hopefully now that you are home you will be able to get some rest as well. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) > >Reply-To: Mito >To: Mito >Subject: Kirkland update >Date: Mon, 3 Jan 2005 19:48:25 -0800 (PST) > >Hi friends: > >Just dropping by to say hello and to let you know that we're finally home from Sick Kids Hospital just in time for the holidays to be over. I can't tell you how much it's meant to have your support and kind words coming our way during this, our toughest time yet. Many times I thought of you all and realized that I could handle it because most of you have and I could turn to you if I needed a shoulder. > >To some of you, I owe a phone call. When I get settled and can talk about things without getting exasperated, I'm going to make a coffee, sit down, and start dialing. I know most of you understand what it's like to dread having to repeat 'the story' just one more time. I hardly spoke to anyone on the phone during this admission. I feel like I've become weaker with each hospital stay and I fear it may be quite a while before I bounce back from the trauma of this one. > >Anyway, enough about me. Kirkland's doing well. We waited 2.5 weeks to get a bi-pap machine to bring home but boy, has it been worth it. Immediately after being put on it for the first time in hospital, his sats increased and his respirations & heart rate normalized. Everyone involved breathed a sigh of relief for he responded so well, didn't fight it, and came off it no problem too. The initial start-up wasn't done in ICU but rather, on the floor (which was very risky) but we'd decided no ventilator anyway so there was no need for ICU. >He's really only using it at night but the odd afternoon he was working a bit harder on his breathing so we put him on for a bit while he was awake and it did the trick. > >Kirk's upper right lobe was still collapsed when last x-rayed but I'm told that it still could re-inflate despite the cronic lung problems. I'm not holding my breath though. >I'm just so relieved to be able to provide him with some breathing support and alleviate most of his suffering. When we took him in, he was indrawing so much that his chest was heaving off the bed with each breath. His heartrate was180, resps in the 60's, sats in the mid 80's on 10 litres of O2 (masked). > >Tonight, he's asleep but not yet on the bi-pap. His sats are 97%, 1 litre O2, nasal prongs, heartrate- 90 respirations- 30, no indrawing! He hasn't been like this in a year. >When he coughs, the secretions are clear and they don't need to be suctioned out. The coughing's decreased a ton too. > >Obviously, my relief is overwhelming and I feel so grateful to our doctors who moved on this quickly. It was actually Kirk's mito doc, Dr. Feigenbaum, who ran with it and got us the help we needed stat! And I thank those of you who coached me through these respiratory issues. The power of the internet is simply amazing -here's proof: > >Many of you were recommending the Cough Assist Machine to me and if you recall, I started looking into it in Canada but no one had heard of it so I wasn't getting anywhere. Vicki (thank you so much for interupting the discussion to tell me that you knew of a Caringbridge family in Ontario who had one) gave the address of baby , an SMA baby from Ontario . I in turn, wrote to his mom, , who immediately filled me in on who had helped her access the cough assist machine and bi-pap. >Fortunately, was seen by a pulmonologist at Sick Kids Hospital which is Kirk's hospital too- Dr. McLusky. >I gave his name to Dr. Feigenbaum (Kirk's mito doc) that day, she contacted him and he recommended we consider the bi-pap. They reserved a bed for Kirk to come in and be assessed. We arrived in Emerg a day early which upped the whole process. And the rest is history! >Ironically, the nurse who first cared for Kirkland on the floor had fallen in love with while he was in and now she does private nursing for him in borough. I've communicated with 's mom, , since then through Tiff, our 'common' nurse. She was great to us while Kirk was in and hopefully we'll all keep in touch. >Wild eh?? It's a small world - and it all started with this group! > >To the new families who are struggling to cope with mito, let this be encouraging to you all. There is so much to learn from these mito parent experts. Keep asking the questions, you never know when their advice, combined with that of your doctors', just might save your child's life. > >Happy New Year to All and thanks for being our friends. > >love and Kirkland (almost 4yrs) Complex One Deficiency, seizures, dev'l delays, 24 hr O2, oximetry, G-J tube, AFO's, suction, nebulizer, bi-pap, autonomic dysfuction, CVI.... >**plus Evan 10 yrs, and Carson 7 yrs** > >Check us out at www.caringbridge.org/canada/kirklandk/ > > > > > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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