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.