Life with Abby has opened up a whole different world than I ever knew before. It is sometimes a world of incredible joy and strength, and sometimes of immeasurable heartache and pain. Along our journey we have become friends with a number of families who each have unique children and needs. We have met so many friends through Special Needs Groups, Hospital Visits, and even just being out and around. Sadly kids like Abby don't always get to stay on this earth as long as their loved ones would like. Since joining this whole new world, we have seen firsthand the pain and sorrow involved in saying goodbye. I personally truly believe that once these kids are released from the pain and suffering that they experience in these little bodies, that they are probably exuberant and able to do cartwheels and experience an entire variety of sensations, but the trouble is we don't get to experience them the same way. Phillip once gave me a weekend away from the kids as a gift, I drove up to Maine by myself and spent three days sleeping, reading, and bathing. I spoke to Aliya on the phone, and was pregnant with Jacob, but I missed Abby's touch. That is how I communicate with her. I missed her smell, her smile, but most of all the way she melts in my arms when I hold her. Right now we are very blessed to have Abby as healthy as she has been, we have spent very little time in the hospital and although life is more difficult without nursing, we are managing. Unfortunately I know firsthand that there are others who currently are suffering.
Two years ago during a hospitalization that extended two months, we became closely acquainted with an amazing family. Their little Eithene has a mitochondrial disease. She has always processed thought age-appropriately, but is stuck in a body that not only doesn't function, but actually is digressing. She has spent almost EVERY day of the last two YEARS of her life at Boston Children's Hospital. Her mom is amazing and Eithene is very rarely left alone. Eithene has a younger brother and her parents take shifts being at home with him or at the hospital with her, extended family has stepped up, but the wear of the hospital still must take it's toll. They have fought an amazing fight, but one that can NOT continue. Tomorrow they are beginning hospice care. They are having an early 5th birthday for her, and starting the process of letting her go. If you want to know more about this amazing family and sweet little girl, Eithene's mom has a blog at fromthebanksofjordan.blogspot.com
I ask that in your prayers you keep this family in mind as their burdens are great, and I am sure they can use all the strength possible.
Sunday, June 12, 2011
Thursday, May 26, 2011
Relearning Life,
Well, this month we received some very stressful news. Many people don't or won't understand why this particular news strikes fear into my very heart, but it does. We have lost ALL of our nursing hours, (the school district will still provide a nurse when she is in school). Little Miss Abby has been approved for nursing hours since she was about six months old. To get approved for nursing is a very long, intricate process. Someone comes to our home, asks hundreds of (inane) questions, and puts it all into a little formula of how much nursing Abby should need (ie how much time above any two parents can spend caring for a little one that is required to keep her alive.) When Abby was six months, she was approved for 30 hours a week, and has her needs have grown, so has her nursing requirement., most recently we have been approved for 56 hours a week. I know that many people have expressed awe that the state helps me take care of Abby, I have heard comments such as "I wish someone would come to my house and help me with my kids," and others along that line. So while I digress from my original blog-worthy news I would like to tell a little about the care that goes into taking care of Abby, those who are slight of stomach may want to stop reading right here.
Each morning she gets albuterol, atrovent, and hypertonic saline nebulizers, then she gets twenty minutes on her chest vest (a machine that shakes her torso to break up lung build-up), then a round of cough assist (a machine that inflates and deflates her lungs several times, because she breathes too shallow to fully expand her lungs on her own.) After all these wonderful devices we then get to nasial-tracheal suction her. We put a tube down her nose, we go about 5-8 inches down (if we see stomach contents we are too far,) and suction up all her lovely secretions that if left in her airway can cause pneumonia, even worse mucas plugs. Lastly she gets two puffs from an inhaler. We do this lovely "pulmonary toilet" three times a day. Every other month at the end of her treatments we get to add a tobi neb (an antibiotic that keeps her pseudomonas infections at bay) on the end which adds another 30 minutes or so.
Her respiratory treatments are by far the part of her care that takes up the most time consistently, but really overall, it is just the tip of the iceberg. For seizures, reflux, and nutrition, Abby receives approximately 25-30 doses of medication each day. She has 20 hours a day of continuous feeding (where her special formula is attached to her feeding tube and pumped directly into her stomach,) of course every good mom knows that formula is only good for about 4 hours at room temperature, so every 4 hours we fill her up.
I bathe her twice a week, including changing her ostomy bag. To keep her ieostomy site looking good, her bag changes include a ten minute soak in an astringent. Anyone who doesn't know much about ostomys, may not know that because the stool comes straight out of the intestine, there is no muscle to control the flow. Basically the whole time her bag is off, there is the chance of projectile stool, so my job is to keep a gloved hand holding a paper towel over her ostomy until it is properly covered again. This bag although I only change it twice a week, needs to be emptied 3-5 times a day (which again includes, gloves, wipes, and a whole lot of practice to not "spill" her stool.) Abby's bath herself is pretty straight forward unless you want to take into account picking up a slippery naked five year old with NO muscle tone out of the tub, again it's tricky if you do it right, and impossible if you don't (or when I was hugely pregnant with Jacob.)
Many of Abby's Drs would also like to see her put into a stander 1-2 times a day. This is so that her organs can get used to being in the position that the body was made to be in. It is good for her bones, GI system, and respiratory system. With all of these advantages Drs are always surprised when I don't make this a regular part of Abby's day. To put this little angel into the stander. I have to take her shirt off, put her undershirt on (oh and don't forget I have to disconnect her feeding tube, and thread her ostomy bag through), position her back brace correctly, get her into a position where I can do up the back. Check placement, otherwise she can get pressure sores. Take off her socks and shoes, put on her "under socks," put on her ankle braces. Put her in the stander, position the knee braces on the stander, velcro her in, and begin the process of raising her close to standing. The process of putting her upright, or bringing her back down, must be done gradually so that she doesn't have dangerous fluctuations in her blood pressure. I then need to monitor her for the 30-45 minutes she is upright, and reverse the process to take her out. I also may want to mention that to raise and lower the stander there is a convenient food pedal, unfortunately it is sensitive enough that if Jacob was to step on this, it would fling poor Abby quickly back to her back, so I must stand guard against the crazy one. We are lucky if I accomplish this twice in a a week.
While I have outlined the things that demand my time the most, there are many other things that come with the territory of Abby. There are diaper changes/outfit changes, she pees through her clothes 2-3 times a day. The laundry of her clothes, her bedding, her towels, and whatever else got leaked on from an open feeding tube, or a stray syringe. Her mouth care, she is prone to more issues due to the meds she takes. Watching her oxygen and acting accordingly. Monitoring her temperature instability and trying to keep her in a "safe" temperature range, oh, and watching for those pesky seizures. Her wheelchair that I pick up to put in my van is a solid 95 pounds, her oxygen concentrator is 20, her feed bag is 5, her oximeter is 7, her cooler with meds is 2, the diaper bag with gloves, diapers, extra clothes (and Jacob stuff), is about 15, and of course Little Miss Abby who only weighs in at under 35 pounds. Basically to leave our house for a walk I must carry, push, or pull about 200 pounds of paraphernalia. The other two kids like to come too.
So yes, I would LOVE someone to make my life easier, and have appreciated nursing care (although someday I may devote a whole posts to the adjustments you have to make to have a stranger in your home for 50 hours a week), I'm not sure that any amount of time really compensates for having such a time consuming kid. We do manage, but without a nurse I'm not sure we are leaving the house.
Why, you ask. What form of inhumanity would take away the one area that makes my life a little easier, well brace yourself for a rant. HEALTHCARE!!!! In MA, kids who were severely disabled qualified for medicaid, if you were over income, they charged you a premium for this service. In UT, because we won't give Abby a trache (we have no judgement for anyone who decides different, but we don't think it's right for our family and our circumstances,) Utah has determined that she is NOT medically fragile/ technology dependent. If we WANT her to have medicaid we can pay down $1400-$1800 per month for Abby. The state determines this amount by how much money Phillip makes about the federal poverty guideline. While I will agree that the average person (above the income guidelines) should not be able to have state assistance, really people, does Abby "look" average. While I view this as absolutely ridiculous, they also will NOT count his student loan payments (that are above $2000 a month) against his income. So while by their calculations, we are living about $1500 above the poverty line, but actually we are about $500 below. I keep trying to explain that in order to make this salary, we must pay this loan amount, but it falls on deaf ears. For the past year we have paid this enormous premium to keep Abby covered, knowing that we couldn't continue. Lets not forget that any time or way his income goes up, so does our premium. Phillip's parents came up with the brilliant (no, really no sarcasm here, it is a GREAT idea,) of him joining the Air Force Reserve. With his advance education, he doesn't have to attend boot camp, will probably NEVER be deployed and can elect to have entire family coverage for under $200 a month. It truly was an answer to prayers. He has to go to CO one weekend a month and has to train two weeks every summer, but I can buck up and have family and friends to help while he is gone. Before he made this commitment I verified that Tricare would meet all of our needs and was told that her nursing may be reduced to 28 hours a week, again, not ideal but I could figure it out. Unfortunately the SIX people who verified this were WRONG. "Oh sorry, no, we don't cover that kind of nursing. We recommend that you look into medicaid, or have your husband go full time military, is there anything else we can do for you today?" NO. THANKS.
Long, long, story short, I don't think we are leaving the house this summer, it is slightly stressful thinking of my three kids cooped up all summer. We are still in the process of getting landscaping, so we don't even have a lawn yet. I am terrified of this summer, I hope to survive. Again sorry this post is so long, and gross, but I do feel better for letting it out.
Each morning she gets albuterol, atrovent, and hypertonic saline nebulizers, then she gets twenty minutes on her chest vest (a machine that shakes her torso to break up lung build-up), then a round of cough assist (a machine that inflates and deflates her lungs several times, because she breathes too shallow to fully expand her lungs on her own.) After all these wonderful devices we then get to nasial-tracheal suction her. We put a tube down her nose, we go about 5-8 inches down (if we see stomach contents we are too far,) and suction up all her lovely secretions that if left in her airway can cause pneumonia, even worse mucas plugs. Lastly she gets two puffs from an inhaler. We do this lovely "pulmonary toilet" three times a day. Every other month at the end of her treatments we get to add a tobi neb (an antibiotic that keeps her pseudomonas infections at bay) on the end which adds another 30 minutes or so.
Her respiratory treatments are by far the part of her care that takes up the most time consistently, but really overall, it is just the tip of the iceberg. For seizures, reflux, and nutrition, Abby receives approximately 25-30 doses of medication each day. She has 20 hours a day of continuous feeding (where her special formula is attached to her feeding tube and pumped directly into her stomach,) of course every good mom knows that formula is only good for about 4 hours at room temperature, so every 4 hours we fill her up.
I bathe her twice a week, including changing her ostomy bag. To keep her ieostomy site looking good, her bag changes include a ten minute soak in an astringent. Anyone who doesn't know much about ostomys, may not know that because the stool comes straight out of the intestine, there is no muscle to control the flow. Basically the whole time her bag is off, there is the chance of projectile stool, so my job is to keep a gloved hand holding a paper towel over her ostomy until it is properly covered again. This bag although I only change it twice a week, needs to be emptied 3-5 times a day (which again includes, gloves, wipes, and a whole lot of practice to not "spill" her stool.) Abby's bath herself is pretty straight forward unless you want to take into account picking up a slippery naked five year old with NO muscle tone out of the tub, again it's tricky if you do it right, and impossible if you don't (or when I was hugely pregnant with Jacob.)
Many of Abby's Drs would also like to see her put into a stander 1-2 times a day. This is so that her organs can get used to being in the position that the body was made to be in. It is good for her bones, GI system, and respiratory system. With all of these advantages Drs are always surprised when I don't make this a regular part of Abby's day. To put this little angel into the stander. I have to take her shirt off, put her undershirt on (oh and don't forget I have to disconnect her feeding tube, and thread her ostomy bag through), position her back brace correctly, get her into a position where I can do up the back. Check placement, otherwise she can get pressure sores. Take off her socks and shoes, put on her "under socks," put on her ankle braces. Put her in the stander, position the knee braces on the stander, velcro her in, and begin the process of raising her close to standing. The process of putting her upright, or bringing her back down, must be done gradually so that she doesn't have dangerous fluctuations in her blood pressure. I then need to monitor her for the 30-45 minutes she is upright, and reverse the process to take her out. I also may want to mention that to raise and lower the stander there is a convenient food pedal, unfortunately it is sensitive enough that if Jacob was to step on this, it would fling poor Abby quickly back to her back, so I must stand guard against the crazy one. We are lucky if I accomplish this twice in a a week.
While I have outlined the things that demand my time the most, there are many other things that come with the territory of Abby. There are diaper changes/outfit changes, she pees through her clothes 2-3 times a day. The laundry of her clothes, her bedding, her towels, and whatever else got leaked on from an open feeding tube, or a stray syringe. Her mouth care, she is prone to more issues due to the meds she takes. Watching her oxygen and acting accordingly. Monitoring her temperature instability and trying to keep her in a "safe" temperature range, oh, and watching for those pesky seizures. Her wheelchair that I pick up to put in my van is a solid 95 pounds, her oxygen concentrator is 20, her feed bag is 5, her oximeter is 7, her cooler with meds is 2, the diaper bag with gloves, diapers, extra clothes (and Jacob stuff), is about 15, and of course Little Miss Abby who only weighs in at under 35 pounds. Basically to leave our house for a walk I must carry, push, or pull about 200 pounds of paraphernalia. The other two kids like to come too.
So yes, I would LOVE someone to make my life easier, and have appreciated nursing care (although someday I may devote a whole posts to the adjustments you have to make to have a stranger in your home for 50 hours a week), I'm not sure that any amount of time really compensates for having such a time consuming kid. We do manage, but without a nurse I'm not sure we are leaving the house.
Why, you ask. What form of inhumanity would take away the one area that makes my life a little easier, well brace yourself for a rant. HEALTHCARE!!!! In MA, kids who were severely disabled qualified for medicaid, if you were over income, they charged you a premium for this service. In UT, because we won't give Abby a trache (we have no judgement for anyone who decides different, but we don't think it's right for our family and our circumstances,) Utah has determined that she is NOT medically fragile/ technology dependent. If we WANT her to have medicaid we can pay down $1400-$1800 per month for Abby. The state determines this amount by how much money Phillip makes about the federal poverty guideline. While I will agree that the average person (above the income guidelines) should not be able to have state assistance, really people, does Abby "look" average. While I view this as absolutely ridiculous, they also will NOT count his student loan payments (that are above $2000 a month) against his income. So while by their calculations, we are living about $1500 above the poverty line, but actually we are about $500 below. I keep trying to explain that in order to make this salary, we must pay this loan amount, but it falls on deaf ears. For the past year we have paid this enormous premium to keep Abby covered, knowing that we couldn't continue. Lets not forget that any time or way his income goes up, so does our premium. Phillip's parents came up with the brilliant (no, really no sarcasm here, it is a GREAT idea,) of him joining the Air Force Reserve. With his advance education, he doesn't have to attend boot camp, will probably NEVER be deployed and can elect to have entire family coverage for under $200 a month. It truly was an answer to prayers. He has to go to CO one weekend a month and has to train two weeks every summer, but I can buck up and have family and friends to help while he is gone. Before he made this commitment I verified that Tricare would meet all of our needs and was told that her nursing may be reduced to 28 hours a week, again, not ideal but I could figure it out. Unfortunately the SIX people who verified this were WRONG. "Oh sorry, no, we don't cover that kind of nursing. We recommend that you look into medicaid, or have your husband go full time military, is there anything else we can do for you today?" NO. THANKS.
Long, long, story short, I don't think we are leaving the house this summer, it is slightly stressful thinking of my three kids cooped up all summer. We are still in the process of getting landscaping, so we don't even have a lawn yet. I am terrified of this summer, I hope to survive. Again sorry this post is so long, and gross, but I do feel better for letting it out.
Monday, February 7, 2011
A Blogworthy Event
Yesterday something great, something amazing happened. I went to Sunday School, and Relief Society (two church classes) without Jacob. I didn't even bring the diaper bag in. Yes folks, he is now in nursery (a church class that you must be 18 months old to attend.) It was so nice I actually had the chance to listen, read, and comment. Each of these things is almost impossible to do while trying to entertain an energetic little boy. About halfway through the last class my back started to hurt. I realized that since having Jacob I don't think I have EVER sat still, on a folding chair, for so long.
I wish I could say that my superior mothering skills had prepared Jacob for this new independence, that after weeks of prep he was secure enough with our relationship that he was unafraid to leave the safety of my arms and enjoy himself in nursery. Unfortunately this isn't the case, while he had no trouble being there without his mother, I am pretty sure it is just his personality to be totally unafraid of anything. As I dropped him off, I tried to say goodbye to him, but he had already found an entire cabinet of toys, so he barely looked at me as I left him on his own. While I would have liked him to express a small preference for my presence, I am thrilled he had a good time. You know what, I did too, especially when I got to see him after and realize that I got a chance to miss him.
I wish I could say that my superior mothering skills had prepared Jacob for this new independence, that after weeks of prep he was secure enough with our relationship that he was unafraid to leave the safety of my arms and enjoy himself in nursery. Unfortunately this isn't the case, while he had no trouble being there without his mother, I am pretty sure it is just his personality to be totally unafraid of anything. As I dropped him off, I tried to say goodbye to him, but he had already found an entire cabinet of toys, so he barely looked at me as I left him on his own. While I would have liked him to express a small preference for my presence, I am thrilled he had a good time. You know what, I did too, especially when I got to see him after and realize that I got a chance to miss him.
Friday, January 7, 2011
The Flip Side
My last post got me thinking about when I was a little girl. At the end of the day my mom would ask me how my day was and I would say "great, except this this and this." She would then have to prompt me what made my day great, as all I would list is what wasn't ideal. Now that I am an "adult," I am trying to do without her prompt and in my last post I think I failed. So now that I have complained about what I miss about Boston, I want to take a moment and express gratitude for all the positive changes that have recently come into my life.
First and foremost is I get to see my husband again!!! Yea! I was actually a little concerned with how we would transition from him being at school ALL the time, to him working 35-40 hours a week with only a 4 minute commute. Guess what, it's wonderful. It might have been a problem if Phillip wasn't such a sweet husband and father. I look forward to seeing him every night for dinner, and the kids LOVE that he makes them breakfast every morning (I love it to, because then I can sleep a little longer.)
I also LOVE having family close by. Aliya has been able to get reacquainted with cousins, and Phillip and I have been fortunate to have gone on a few dates (without the kids). It is also nice to not bring all three kids to all of Abby's appointments all the time. I feel like I moved into an area with some of my closest, dearest friends. The advantage of these friends are that whatever happens, they still have to like me, because they are Family.
Now for all the material advantages that Utah holds for us. A HOUSE, not just any house, but one that is brand new with NO stairs leading up to it. For those of you who don't understand, my little Abby is in a wheelchair and it is WAY easier to get her in and out for school. This house of ours also allows each child to have their own room. For the first time in our married life I can decorate their rooms to show their personalities. We also have a GARAGE, and room for a YARD. Coming from Boston, we recognize that if we had stayed there, these are things we wouldn't have been able to buy for years and years, if ever.
Another advantage of being in Utah is that the LDS Church is so well known. I love that Abby's equipment vendor can start telling about a testimony meeting he attended. I can use words that Utahans know and understand that I had to banish from my Boston vocabulary, a few examples include: Ward (Congregation), Bishop (Pastor or Priest who leads such congregation), Relief Society (Our Church's Women's Group), General Conference (Church on TV), and Primary (Children's Sunday School).
Well after a lot of rambling, I just want to say that I am grateful for all I have, and location is not everything.
First and foremost is I get to see my husband again!!! Yea! I was actually a little concerned with how we would transition from him being at school ALL the time, to him working 35-40 hours a week with only a 4 minute commute. Guess what, it's wonderful. It might have been a problem if Phillip wasn't such a sweet husband and father. I look forward to seeing him every night for dinner, and the kids LOVE that he makes them breakfast every morning (I love it to, because then I can sleep a little longer.)
I also LOVE having family close by. Aliya has been able to get reacquainted with cousins, and Phillip and I have been fortunate to have gone on a few dates (without the kids). It is also nice to not bring all three kids to all of Abby's appointments all the time. I feel like I moved into an area with some of my closest, dearest friends. The advantage of these friends are that whatever happens, they still have to like me, because they are Family.
Now for all the material advantages that Utah holds for us. A HOUSE, not just any house, but one that is brand new with NO stairs leading up to it. For those of you who don't understand, my little Abby is in a wheelchair and it is WAY easier to get her in and out for school. This house of ours also allows each child to have their own room. For the first time in our married life I can decorate their rooms to show their personalities. We also have a GARAGE, and room for a YARD. Coming from Boston, we recognize that if we had stayed there, these are things we wouldn't have been able to buy for years and years, if ever.
Another advantage of being in Utah is that the LDS Church is so well known. I love that Abby's equipment vendor can start telling about a testimony meeting he attended. I can use words that Utahans know and understand that I had to banish from my Boston vocabulary, a few examples include: Ward (Congregation), Bishop (Pastor or Priest who leads such congregation), Relief Society (Our Church's Women's Group), General Conference (Church on TV), and Primary (Children's Sunday School).
Well after a lot of rambling, I just want to say that I am grateful for all I have, and location is not everything.
Monday, January 3, 2011
New Beginnings
Phillip has been urging me to start a blog for some time now. I've always listed a million reasons why I can't or shouldn't, but here it is anyway my first post.
At the beginning of this year I came to a sad conclusion. I miss my friends. I miss my Perkin's Moms who understand what it is like to have a child like Abby. I miss my Weston 2 friends who knew me, and I could talk to about anything. I miss my inpatient friends who kept me company when things weren't going so well. I miss Boston. The skyline, the Charles River, the food, the grocery stores, and sadly enough, even the hospital. There I said it. Change is hard.
Now to quit moping and give you a quick family history. I'm Tiffany and my wonderful husband is Phillip. We have three amazing kids. Aliya is our mature six year old, who is always ready to help and rarely complains. Abby is our special needs four year old, she has a giant personality stuck in a body that doesn't work. Jacob is our wildman at 17 months who keeps me on my toes every moment. Phillip and I were married in 2003 in the Logan Temple (of the LDS church.) We lived in Salt Lake City UT for almost three years were both Aliya and Abby were born. We moved to Boston for Phillip to attend Optometry school, were Jacob joined our family. In May Phillip graduated and we moved to a little town in UT were we currently live.
Life has been a roller coaster to say the least. Abby has had some severe health issues and to sum it up, everyday she is with us is a blessing and not to be taken lightly.
The name of the Blog came from Abby. At one month she started having seizures. At four months she had a five hour seizure that landed her in the ICU in Children's Hospital Boston, they put her in a coma to break the seizure and when they brought her out, she lost the ability to swallow. Each time we brought her to the hospital, we would learn of another part of her body that wasn't working right. I would come home from the hospital each time absolutely devastated and overwhelmed by what I had to learn and do for her. After a while Phillip would just say, " Honey, it's just another thing." I would be so mad, how could he say it's just another thing. I couldn't add any more "things," I couldn't fit any more therapies, nebulizers, medicines into my day. You know what though, he was right. Our life is far from perfect, but we are figuring it out. At the end of the day I have my three beautiful kids, and a loving husband. When the worst hits, its just another thing.
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