Lately i've been thinking a lot about what it means to be a hero.
www.wikipedia.com Definition: hero (male) and heroine (female) came to refer to characters (fictional or historical) that, in the face of danger and adversity or from a position of weakness, display courage and the will for self sacrifice – that is, heroism – for some greater good, originally of martial courage or excellence but extended to more general moral excellence.
People have told me that my wife and I are heroes for the way we take care of disabled daughter Shira and our regular son Sammy. I don't feel like a hero I just feel like a father that doesn't want to loose his child to a horrible terminal disease. Some people believe a hero is someone that has overcome great odds and persevered against great odds. Does this mean the people that survived the Titanic are heroes while those that died are not? Are the survivors of the Holocaust heroes while those that died at the hands of Nazi Germany not heroes? Not long ago I watched a show about American War Heroes. The subject of the show was to figure out what separated these heroes from the regular population of people. None of the heroes interviewed felt like heroes and none of them could explain why they put themselves in mortal danger sacrificing themselves for the good of others. A wave of selflessness took these heroes over making them act putting their comrades lives ahead of their own.
Since our daughter's diagnosis (with Spinal Muscular Atrophy Type 1) I have met hundreds of families that "go beyond the call of duty" to care for their children. Is there a limit as to how much effort, time, money etc. they should put into their children? Is there a limit as to how far one should go to insure the safety of another human being? The great child advocate June Collwood said, "If you see an injustice being committed, you aren't an observer, you are a participant." Are the men and woman that save people during times of genocide like the holocaust in the second world war, Ruwanda, Serbia Croatia War, or the current African conflicts heroes? Shouldn't saving people from harm be the norm not the exception?
A few years ago when a bridge collapsed in Minneapolis we saw acts of heroism by passersby saving people trapped underwater in cars, on the bridge, near the bridge etc. I started to wonder if these heroes were also heroes in their daily lives or were their actions to act and climb down a collapsed unstable bridge just a primal reaction of the moment?
It's my opinion that there are different levels of acting in heroic ways and that heroism is in fact subjective. Those that act heroically only to gain fame or monetary reward is the lowest level of heroism; their actions are still heroic but the actions are offset by their own personal needs.
For me the true heroes are: the woman living down the street that has cared for her disabled daughter for 46 years, the parents who care for children with life threatening illness at home and spend all their time insuring their regular children live full lives, or as Christopher Reeves put it, ""When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequently asked question was: "What is a hero?" I remember how easily I'd talk about it, the glib response I repeated so many times. My answer was that a hero is someone who commits a courageous action without considering the consequences. A soldier who crawls out of a foxhole to drag an injured buddy back to safety, the prisoners of war who never stop trying to escape even though they know they may be executed if they're caught. And I also meant individuals who are slightly larger than life: Houdini and Lindbergh of course, John Wayne and JFK, and even sports figures who have taken on mythical proportions, such as Babe Ruth or Joe DiMaggio. Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. The fifteen-year-old boy down the hall at Kessler who had lannded on his head while wrestling with his brother, leaving him paralyzed and barely able to swallow or speak. Travis Roy, paralyzed in the first eleven seconds of a hockey game in his freshman year at college. Henry Steifel, paralyzed from the chest down in a car accident at seventeen, completing his education and working on wall street at age thirty two, but having missed so much of what life has to offer. These are real heroes, and so are the families and friends who have stood by them."
For me heroes are: those that have a choice to act or not act selflessly and choose to act in such a way as to give of themselves to a greater good other than themselves, and those that over come great personal obstacles becoming examples to others. A greater good can be something as small as giving up a vacation so that your kids can go to camp or crossing the street just to help someone needing help .
Two weeks ago Help Fill A Dream was at our home erecting a playground in our back yard that was donated to our daughter so that she could play with other children and her brother. The men that showed up on their own time, on a Saturday to spend 7 hours working just so our daughter, whom they had never met, could have more happiness in her life. These men are HEROES!!
Everyone really does have the potential and capacity to be a hero because heroism is not measured by the type of action but by acting solely for the better good of someone else beyond ones self!
The other day I ran across a quote by Ghandi that really described how each of us could live a selfless heroic life.
"I will give you a talisman. Whenever you are in doubt, or when the self becomes too much with you, apply the following test. Recall the face of the poorest and the weakest man [woman] whom you may have seen, and ask yourself, if the step you contemplate is going to be of any use to him [her]. Will he [she] gain anything by it? Will it restore him [her] to a control over his [her] own life and destiny? In other words, will it lead to swaraj [freedom] for the hungry and spiritually starving millions?
Then you will find your doubts and your self melt away."
- Ghandi
Every day I meet more and more people and get to hear their stories of heroism. Their stories inspire me to “Let myself melt away” by reaching out to other’s in need. It is my hope that this little article is not taken as holier than thou but as siren call stirring the hero potential within all of us!
Thursday, May 7, 2009
Wednesday, April 22, 2009
Saturday, February 7, 2009
Shira Update
Hi all. I didn't here back from the hospital regarding Shira's sputum samples but I guess no news is good news. Shira is feeling better anyways so hopefully it was just a bad case of teething. Shira doesn't do well when teething and because her fever lasted for 3 days and stopped as abruptly as it started I will assume that is what it was. Whew!!
Today Help Fill A Dream comes to our home to measure the back yard and make arrangements to install our play ground for the kids. Shira will have a Jennyswing and we'll customize the rest of it for her to use. The point is to have her outside playing with kids.
I have also been working on finding a person with a pool we can use as our local rehab hospital has a non functioning pool. Shira loves to swim and float but I can't bring myself to take her swimming in a public pool. Not only is disease a concern but because she has swallow issues should someone splash in her facee she could drown. So we are looking into this. I'd really love to take her swimming once a week.
Prayers to all of our friends with sick kids!!!
Today Help Fill A Dream comes to our home to measure the back yard and make arrangements to install our play ground for the kids. Shira will have a Jennyswing and we'll customize the rest of it for her to use. The point is to have her outside playing with kids.
I have also been working on finding a person with a pool we can use as our local rehab hospital has a non functioning pool. Shira loves to swim and float but I can't bring myself to take her swimming in a public pool. Not only is disease a concern but because she has swallow issues should someone splash in her facee she could drown. So we are looking into this. I'd really love to take her swimming once a week.
Prayers to all of our friends with sick kids!!!
Wednesday, January 14, 2009
Our SMA Anniversary
Thank you for the well wishes everyone. Life is crazy with SMA. We spent our Anniversary in 2 separate parts of our house. I was in the basement with Shira and Maxine was upstairs with Sammy who has a cold. We move downstairs to our basement the minute anyone starts showing signs of being ill in our house to try and keep Shira healthy. Sammy is feeling a lot better but he has one of those coughs that you get when your cold is breaking up so we didn't want to expose Shira to that. Maxine made a beautiful meal and we had some wine with dinner. I ate downstairs and Maxine ate upstairs. It seems crazy but Maxine and I are so on the same page with Shira's care and what we have to do to keep her healthy that we just do it and it just seems to make us stronger and closer. Since Shira's birth life seems to have really picked up speed. Our focus on Shira's care is so intense that life is just whizzing by faster than ever. Don't get me wrong as we have a lot of joy with Shira. The other day Shira and I went for a 2 hour walk in the pouring rain and yesterday Maxine and I went for an Anniversary walk with Shira. While its quite traditional for many of us to go out and celebrate our Anniversaries Maxine and I have been home the last 4 years on our anniversary sharing it with our children. Sammy was so excited to have a "small family party" as he put it. I don't remember any of my parents anniversaries because they were always seperated then divorced when I was so young. I can't imagine how Sammy is being influenced by constantly having both parents here for him and him being able to celebrate in our Anniversary and all the other events together. It's amazing how the worst case scenario (your child having a life threatening illness) also has such a positive aspect; the ability to draw the family closer together. We are thankful for what we have, the celebrations we get to share as a family and each day we get to spend together! Thank you for all the well wishes and out pouring of love and kind words.
Wednesday, December 31, 2008
SHIRA'S CRITICAL CARE COLD PROTOCOL
SHIRA'S CRITICAL CARE COLD PROTOCOL
Shira has had 2 major hospitalizations since being diagnosed with SMA Type 1 at 4 months old. The first time Shira was hospitalized was with RSV or Respiratory Synctal Virus at 6 months of age. During the first hospitalization I read doctor Bach’s book Management Of Patients With Neurological Disorders and Non Invasive Ventilation as well as had the Paediatric Intensive Care Nurses, Respiratory Therapist and Physio Therapist train me so that I could deliver the intensive care Shira needed at home. Through the years my skill set has increased from watching other parents via video conferencing as well as the exchange of ideas over the SMA support inc. chat. Shira was recently hospitalized and again I picked up some new skills. I hope these suggestions can help you.
The information below is specific to Shira but as I have learned from so many parents that have had great success caring for their children during times of critical illness and have applied their methods to Shira’s care. By no means do I suggest that this is a complete protocol or the only way of delivering critical care. If you have any suggestions for me please forward those as I am always willing to broaden my skill set in Shira’s care.
Oxymeter?
Shira is connected to an Oxymeter 24/7 but this is especially true during times of acute illness. Shira’s Oxymeter is set at 70 for the HR low and 175 for the HR high. Oxygen alarm is set at 90 for the the low and no set for the high. The Oxymeter warned us too many times to count in the past. Doctors were worried that we would watch it but I don’t. Remember when the alarm goes off always check the patient first!!! Machines can lie!
Before giving Shira her CPT session!
Before giving Shira CPT I will turn off her food and make sure to aspirate her stomach (remove its contents via 60cc syringe). This will help insure Shira does not throw up during her session and aspirate her stomach contents.
How often should I give my child Chest Physio Therapy or CPT?
In the hospital you will here the doctors and nurses use the term Q2 or Q4 for delivering treatments and drugs. These are the intervals the delivery will occur i.e. every 2 hours or every 4 hours etc.
When Shira is sick with a cold I give her CPT including cough assist treatments every 4 hours and ramp it up to every 2 should need be.
Bipap and CPT: This time around I learned from another parent to leave Shira on bipap while giving her CPT so that Shira doesn’t crash. The other advantage of giving CPT on bipap is that your child will have more inflation and air flow allowing for a more aggressive treatment.
How often should I use the cough assist?
I use the cough assist during every CPT treatment. If Shira is having trouble coming off her bipap during these sessions and her Oxygen levels are low I will bleed in oxygen in line into the cough assist during treatments. The level of oxygen I use depends on how sick Shira is and to what level her Oxygen is. I will also give Shira coughs and vibes (hand technique for shaking the chest to loosen secretions) in between CPT sessions as needed. I have Shira’s bipap on her head so that when the CPT session is finished I just have to pull down the mask over her nose.
Suctioning when and how often?
Conventional medicine suggests that suctioning can promote secretion development. Because SMA Type 1 children have a difficult time swallowing either having an inaccurate swallow or no swallowing capability I say suction as needed!!! Shira has used 10 FR suction catheters for her oral secretions since 6 months of age and 8 FR for nasal suctioning. I only nasal suction when Shira is critically ill otherwise I don’t nasal suction as the nose bleeds easily and can become easily infected.
Thick Secretions: This time around Shira developed intensely thick secretions and I used 12 FR catheters for her mouth and bebonkers for her nasal suctioning. For deep nasal suctioning I used 8 FR. Catheters and I lubricate the catheters with medical sterile lubricant.
Vaso Vagal Nerve Response: When deep suctioning through the mouth it is not uncommon for our children’s vital signs to suddenly drop i.e. heart rate thenO2 and the minute you stop it regain itself. This is known as a Vasal Vagal Nerve Response. Be careful to watch the Oxymeter while suctioning in case this happens and pull the suction catheter to the front of the mouth should it happen and wait for the HR and O2 to regain itself.
Throwing up what should I do?
1) Immediately turn your child on their side and deep suction to the epiglottis be careful not to scrape anything on the way down.
2) Make sure you open their g-tube and let it drain or take a 60ml syringe and aspirate their stomach (remove its contents) so they don’t throw it up and aspirate (breath in ) the stomachs contents.
3) If you are comfortable using the cough assist you can put it on manual mode and time the exhale with your child and give them a couple of big exhales followed by suctioning to remove any stomach contents that are accessible to the suction catheter.
4) I then give Shira some extra coughs bleeding in O2 with the coughs with both inhale and exhale. If your child is really unstable at this point and might throw up again forego the coughs as you don’t want to induce vomiting and the possibility of aspiration.
5) Stomach Contents: These can be re injected into the stomach after aspirating it as it contains the healthy bacteria found in the stomach.
6) Feeding: See Food How Much How Often below
Oxygen. How much how often?
I follow the NIV Protocol recommendation of O2 being delivered at <95%. I’ll add just enough O2 to bring her back to 97% .
Ambu Bag: Should I have one?
I find the ambu bag the most effective way to give restful deep breaths to Shira after a major extreme bradichardia event or mucous plug removal. Again Shira’s bipap mask will be half on with the mask sitting on her head with her face exposed so that I can give breaths. Be careful not to over inflate your childs lungs while using an ambu bag. Again I will run O2 inline with the ambu bag for giving breaths if Shira’s O2 is <95%. The wonderful thing about using an ambu bag is that you can perfectly time the breaths with the patient so that the patient doesn’t have to change their timing which you have to do with cough assist. I strongly suggest learning how to use one of these bags effectively as they are easy to carry with you. I have one with me where ever I go. If you child plugs while on a walk you can use the ambu bag and supportive coughs to remove the plug and keep bagging them until you get to your vehicle where you have cough assist and bipap waiting. Some parents only walk with both bipap and cough assist with them. It always depends on your skill level and comfort zone.
Nebs: How We Deliver Them
Nebulizer treatments are a main part of critical care protocol for respiratory illness. Shira isn’t on any broncho dilators when healthy but in the hospital she receives treatments of Flovent and Ventolin. Sometimes other broncho dilators are used but you will have to decide on which ones depending on illness and severity. The first time Shira was hospitalized we took off her bipap and delivered the medicine through a spacer set up which was very difficult and looking back ineffective when the patient couldn’t breath off of ventilation. This time we delivered the medicine by using the ambu bag, and bagging it in while also running in O2. This was very effective and in my opinion helped shorten Shira’s hospital stay. The less we make our children crash and still deliver affective treatments the quicker they recover from what I experienced this time.
Food: How Much How Often
There are many variations as to what to do depending on what is ailing your child. With Shira I tend to put her on just her vivonex which is double diluted. I then adjust the mixture so that Shira gets 70% of her daily vivonex and 30% pedialyte. It is important to make sure that Shira is urinating and is not becoming dehydrated and that potassium levels are kept up. And again if Shira really isn’t doing well I’ll go into the hospital and have blood work done to make sure all is well. Shira is on a bolus feed so I drop her feeds to a continuous feed. I still make sure I vent and flush Shira at her regular intervals. If Shira has been vomiting I’ll put her on an open vent using a 60cc syringe running her food line into the open syringe.
Bipap: How high do I go with the pressures?
Shira is typically on fairly low bipap pressures to begin with. PICU doctors will increase these pressures and then do blood gas tests to check ventilation. We obviously do not have this option at home. Seriously over ventilating a patient can be harmful especially on the EPAP not allowing enough CO2 to escape so its important to watch your child carefully if you are playing with pressures. Parents that have been at this a long time know the ranges that work for their children in times of good health and in bad. I know for Shira she can handle moving from 14/4 to 18/7 when sick while her back up rate pretty much remains the same. If you are unsure what you are doing consult with your Pulmo doctor.
Hospital: When Do We Go?
When I can no longer keep Shira’s O2 at 95% while giving supplemental O2 I will take Shira in for a mucous swab and an X-ray on her chest. Every family has a different protocol for this but you will know when you feel like you are loosing control. I don’t like to wait to be totally out of control of the situation before heading to the hospital and prefer to be more pro active so if Shira completely crashes I have a team behind me. Again some parents are able to manage severely sick children at home but you need a lot of experience delivering nebs but more importantly a high skill level in reviving your child and removing extreme mucous plugs. I say, “It’s better to be safe than sorry.” Just listen to yourself and follow your intuition.
Shira has had 2 major hospitalizations since being diagnosed with SMA Type 1 at 4 months old. The first time Shira was hospitalized was with RSV or Respiratory Synctal Virus at 6 months of age. During the first hospitalization I read doctor Bach’s book Management Of Patients With Neurological Disorders and Non Invasive Ventilation as well as had the Paediatric Intensive Care Nurses, Respiratory Therapist and Physio Therapist train me so that I could deliver the intensive care Shira needed at home. Through the years my skill set has increased from watching other parents via video conferencing as well as the exchange of ideas over the SMA support inc. chat. Shira was recently hospitalized and again I picked up some new skills. I hope these suggestions can help you.
The information below is specific to Shira but as I have learned from so many parents that have had great success caring for their children during times of critical illness and have applied their methods to Shira’s care. By no means do I suggest that this is a complete protocol or the only way of delivering critical care. If you have any suggestions for me please forward those as I am always willing to broaden my skill set in Shira’s care.
Oxymeter?
Shira is connected to an Oxymeter 24/7 but this is especially true during times of acute illness. Shira’s Oxymeter is set at 70 for the HR low and 175 for the HR high. Oxygen alarm is set at 90 for the the low and no set for the high. The Oxymeter warned us too many times to count in the past. Doctors were worried that we would watch it but I don’t. Remember when the alarm goes off always check the patient first!!! Machines can lie!
Before giving Shira her CPT session!
Before giving Shira CPT I will turn off her food and make sure to aspirate her stomach (remove its contents via 60cc syringe). This will help insure Shira does not throw up during her session and aspirate her stomach contents.
How often should I give my child Chest Physio Therapy or CPT?
In the hospital you will here the doctors and nurses use the term Q2 or Q4 for delivering treatments and drugs. These are the intervals the delivery will occur i.e. every 2 hours or every 4 hours etc.
When Shira is sick with a cold I give her CPT including cough assist treatments every 4 hours and ramp it up to every 2 should need be.
Bipap and CPT: This time around I learned from another parent to leave Shira on bipap while giving her CPT so that Shira doesn’t crash. The other advantage of giving CPT on bipap is that your child will have more inflation and air flow allowing for a more aggressive treatment.
How often should I use the cough assist?
I use the cough assist during every CPT treatment. If Shira is having trouble coming off her bipap during these sessions and her Oxygen levels are low I will bleed in oxygen in line into the cough assist during treatments. The level of oxygen I use depends on how sick Shira is and to what level her Oxygen is. I will also give Shira coughs and vibes (hand technique for shaking the chest to loosen secretions) in between CPT sessions as needed. I have Shira’s bipap on her head so that when the CPT session is finished I just have to pull down the mask over her nose.
Suctioning when and how often?
Conventional medicine suggests that suctioning can promote secretion development. Because SMA Type 1 children have a difficult time swallowing either having an inaccurate swallow or no swallowing capability I say suction as needed!!! Shira has used 10 FR suction catheters for her oral secretions since 6 months of age and 8 FR for nasal suctioning. I only nasal suction when Shira is critically ill otherwise I don’t nasal suction as the nose bleeds easily and can become easily infected.
Thick Secretions: This time around Shira developed intensely thick secretions and I used 12 FR catheters for her mouth and bebonkers for her nasal suctioning. For deep nasal suctioning I used 8 FR. Catheters and I lubricate the catheters with medical sterile lubricant.
Vaso Vagal Nerve Response: When deep suctioning through the mouth it is not uncommon for our children’s vital signs to suddenly drop i.e. heart rate thenO2 and the minute you stop it regain itself. This is known as a Vasal Vagal Nerve Response. Be careful to watch the Oxymeter while suctioning in case this happens and pull the suction catheter to the front of the mouth should it happen and wait for the HR and O2 to regain itself.
Throwing up what should I do?
1) Immediately turn your child on their side and deep suction to the epiglottis be careful not to scrape anything on the way down.
2) Make sure you open their g-tube and let it drain or take a 60ml syringe and aspirate their stomach (remove its contents) so they don’t throw it up and aspirate (breath in ) the stomachs contents.
3) If you are comfortable using the cough assist you can put it on manual mode and time the exhale with your child and give them a couple of big exhales followed by suctioning to remove any stomach contents that are accessible to the suction catheter.
4) I then give Shira some extra coughs bleeding in O2 with the coughs with both inhale and exhale. If your child is really unstable at this point and might throw up again forego the coughs as you don’t want to induce vomiting and the possibility of aspiration.
5) Stomach Contents: These can be re injected into the stomach after aspirating it as it contains the healthy bacteria found in the stomach.
6) Feeding: See Food How Much How Often below
Oxygen. How much how often?
I follow the NIV Protocol recommendation of O2 being delivered at <95%. I’ll add just enough O2 to bring her back to 97% .
Ambu Bag: Should I have one?
I find the ambu bag the most effective way to give restful deep breaths to Shira after a major extreme bradichardia event or mucous plug removal. Again Shira’s bipap mask will be half on with the mask sitting on her head with her face exposed so that I can give breaths. Be careful not to over inflate your childs lungs while using an ambu bag. Again I will run O2 inline with the ambu bag for giving breaths if Shira’s O2 is <95%. The wonderful thing about using an ambu bag is that you can perfectly time the breaths with the patient so that the patient doesn’t have to change their timing which you have to do with cough assist. I strongly suggest learning how to use one of these bags effectively as they are easy to carry with you. I have one with me where ever I go. If you child plugs while on a walk you can use the ambu bag and supportive coughs to remove the plug and keep bagging them until you get to your vehicle where you have cough assist and bipap waiting. Some parents only walk with both bipap and cough assist with them. It always depends on your skill level and comfort zone.
Nebs: How We Deliver Them
Nebulizer treatments are a main part of critical care protocol for respiratory illness. Shira isn’t on any broncho dilators when healthy but in the hospital she receives treatments of Flovent and Ventolin. Sometimes other broncho dilators are used but you will have to decide on which ones depending on illness and severity. The first time Shira was hospitalized we took off her bipap and delivered the medicine through a spacer set up which was very difficult and looking back ineffective when the patient couldn’t breath off of ventilation. This time we delivered the medicine by using the ambu bag, and bagging it in while also running in O2. This was very effective and in my opinion helped shorten Shira’s hospital stay. The less we make our children crash and still deliver affective treatments the quicker they recover from what I experienced this time.
Food: How Much How Often
There are many variations as to what to do depending on what is ailing your child. With Shira I tend to put her on just her vivonex which is double diluted. I then adjust the mixture so that Shira gets 70% of her daily vivonex and 30% pedialyte. It is important to make sure that Shira is urinating and is not becoming dehydrated and that potassium levels are kept up. And again if Shira really isn’t doing well I’ll go into the hospital and have blood work done to make sure all is well. Shira is on a bolus feed so I drop her feeds to a continuous feed. I still make sure I vent and flush Shira at her regular intervals. If Shira has been vomiting I’ll put her on an open vent using a 60cc syringe running her food line into the open syringe.
Bipap: How high do I go with the pressures?
Shira is typically on fairly low bipap pressures to begin with. PICU doctors will increase these pressures and then do blood gas tests to check ventilation. We obviously do not have this option at home. Seriously over ventilating a patient can be harmful especially on the EPAP not allowing enough CO2 to escape so its important to watch your child carefully if you are playing with pressures. Parents that have been at this a long time know the ranges that work for their children in times of good health and in bad. I know for Shira she can handle moving from 14/4 to 18/7 when sick while her back up rate pretty much remains the same. If you are unsure what you are doing consult with your Pulmo doctor.
Hospital: When Do We Go?
When I can no longer keep Shira’s O2 at 95% while giving supplemental O2 I will take Shira in for a mucous swab and an X-ray on her chest. Every family has a different protocol for this but you will know when you feel like you are loosing control. I don’t like to wait to be totally out of control of the situation before heading to the hospital and prefer to be more pro active so if Shira completely crashes I have a team behind me. Again some parents are able to manage severely sick children at home but you need a lot of experience delivering nebs but more importantly a high skill level in reviving your child and removing extreme mucous plugs. I say, “It’s better to be safe than sorry.” Just listen to yourself and follow your intuition.
SHIRA UPDATE
Shira Update
Well we have been back from the hospital since the 24th of December. When Shira was sick she was on bipap for about 17 days straight which means she became dependent or biapap dependent. Bipap is bi level positive airway pressure and is the type of respirator she uses. This type of ventilation is considered non invasive vs. tracheostomy which is considered invasive because it takes a surgical procedure to introduce the system to the body. Anyways, we left the hospital while Shira still had a little adolectasis in her left lung but she was well enough at that point to be managed at home. Because we have a battery back up system and true sign wave inverter we were able to transport Shira back home while on her respirator. We took an ambulance from the hospital because it is so much easier to load her onto a gurney with all of her equipment, slide her into the ambulance and have the extra 2 sets of hands to bring her into the house. Once home the recovery really started. It was so great to get out of the toxic hospital air and lighting. Our first days at home were spent getting Shira slowly off of bipap and getting her food back up to speed. Shira is fed through a tube in her stomach and has been fed this way since 6 mos. Of age. Shira is now on her regular feeding schedule and volume as well as spending about 6 hours a day off of bipap. Yesterday was our first walk in 22 days which is way too long to be indoors although I remember being inside for more than 3 mos. At a time when Shira was first diagnosed. Shira is a little weaker than before going into the hospital but it is my hope that she will gain back her strength. We have been spending our days playing, learning, Shira is a real sponge. You don’t notice what she knows or doesn’t knows because expressing herself takes a lot of effort but then you ask her a question out of the blue and she gives you the answer or sings something on her own. She knows so much and can almost read. If you just sound out a word she’ll tell you all the letters. Shira loves to finger paint and do all sorts of art work. I am going to build a new repair shop in my basement for repairing musical instruments and making adaptable devices for Shira so that she can do more. We are looking forward to getting back on track with learning how to drive Shira’s power chair. Oh I forgot to mention that Help Fill A Dream approved us to build an accessible playground in our back yard with a special swing for Shira so she can play with Sam and other kids. We are really looking forward to some better weather so that can happen. Also, ChaiLifeline is sending Maxine and Sammy to Disney World in Florida in January on their way to visit Bubbe Ruth in Hollywood Florida. Maxine has a cousin with a little girl slightly older than Sammy that lives near Disney Land so they will get a chance to visit with them. Shira and I are going to start to run again and we’ll see how it goes. I have some foot problems these days due to many years of sports and I’m about 30 lbs over weight so hopefully some weight loss will take care of the foot problems. Shira and I want to try and run at least the half marathon next October again and beat our time of 2:22 but we will train for a full marathon in the hopes of doing that as a fundraiser. I have to thank everyone again for the love and support so many of you gave us while in the hospital. These life and death situations with our kids are gut wrenching and take an enormous amount of energy and concentration to get through. The love, prayers and contact make it a lot more easy to make it through the critical moments. Maxine, Sammy, Shira and I wish all of you a Happy, Healthy, Successful 2009!!!!!!
Well we have been back from the hospital since the 24th of December. When Shira was sick she was on bipap for about 17 days straight which means she became dependent or biapap dependent. Bipap is bi level positive airway pressure and is the type of respirator she uses. This type of ventilation is considered non invasive vs. tracheostomy which is considered invasive because it takes a surgical procedure to introduce the system to the body. Anyways, we left the hospital while Shira still had a little adolectasis in her left lung but she was well enough at that point to be managed at home. Because we have a battery back up system and true sign wave inverter we were able to transport Shira back home while on her respirator. We took an ambulance from the hospital because it is so much easier to load her onto a gurney with all of her equipment, slide her into the ambulance and have the extra 2 sets of hands to bring her into the house. Once home the recovery really started. It was so great to get out of the toxic hospital air and lighting. Our first days at home were spent getting Shira slowly off of bipap and getting her food back up to speed. Shira is fed through a tube in her stomach and has been fed this way since 6 mos. Of age. Shira is now on her regular feeding schedule and volume as well as spending about 6 hours a day off of bipap. Yesterday was our first walk in 22 days which is way too long to be indoors although I remember being inside for more than 3 mos. At a time when Shira was first diagnosed. Shira is a little weaker than before going into the hospital but it is my hope that she will gain back her strength. We have been spending our days playing, learning, Shira is a real sponge. You don’t notice what she knows or doesn’t knows because expressing herself takes a lot of effort but then you ask her a question out of the blue and she gives you the answer or sings something on her own. She knows so much and can almost read. If you just sound out a word she’ll tell you all the letters. Shira loves to finger paint and do all sorts of art work. I am going to build a new repair shop in my basement for repairing musical instruments and making adaptable devices for Shira so that she can do more. We are looking forward to getting back on track with learning how to drive Shira’s power chair. Oh I forgot to mention that Help Fill A Dream approved us to build an accessible playground in our back yard with a special swing for Shira so she can play with Sam and other kids. We are really looking forward to some better weather so that can happen. Also, ChaiLifeline is sending Maxine and Sammy to Disney World in Florida in January on their way to visit Bubbe Ruth in Hollywood Florida. Maxine has a cousin with a little girl slightly older than Sammy that lives near Disney Land so they will get a chance to visit with them. Shira and I are going to start to run again and we’ll see how it goes. I have some foot problems these days due to many years of sports and I’m about 30 lbs over weight so hopefully some weight loss will take care of the foot problems. Shira and I want to try and run at least the half marathon next October again and beat our time of 2:22 but we will train for a full marathon in the hopes of doing that as a fundraiser. I have to thank everyone again for the love and support so many of you gave us while in the hospital. These life and death situations with our kids are gut wrenching and take an enormous amount of energy and concentration to get through. The love, prayers and contact make it a lot more easy to make it through the critical moments. Maxine, Sammy, Shira and I wish all of you a Happy, Healthy, Successful 2009!!!!!!
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