Saturday, April 13, 2013

Welcome to Our Houspital - update on Medical Good Faith Act

This is Faith's mask for her bipap.  The main tube is the forced air from the machine ad the little tube to the side is oxygen to help give her a little more help with her congestion.

This is a picture of our houspital.  The green tank is our oxygen. If you enlarge the photo, you can see our nebulizer for giving her breathing treatments like Pulmozine on the black storage piece behind her.  Look to the left and you can see the bipap unit which blows air at high pressure to keep her open.  To the left of the bipap is a suction unit which can be used with a red robin (thin long tube) to clean out her nasal area and throat.
As you can see Faith is sick.  She has been slowly getting worse through the week.  Jesi even took her to the ENT at U of M to have them check her out because she kept getting worse, and this was after going to see our pediatrician who is nearby.  So last night when I got home, I was troubled by how she looked and was breathing which I know always makes Jesi more nervous when I reach the point of thinking we might need to go to the hospital.  Well, Faith was already taking antibiotics from the pediatrician so we didn't need that.  We have all the breathing treatments like Pulmozine, Albuteral, Flovent, and Atrovent that they would do in the hospital.  With the bipap, we have high flow air which we can add in oxygen as you see above.  We can suction her out as well with our new replacement unit which Jesi exchanged on her trip to U of M the other day. Essentially, the only thing we can't do at home which they can do in the PICU is intubate her, but everything else we have...hence our Houspital.

So we still needed one more thing for Faith, steroids.  Well, our pediatrician had given us a prescription to be able to use it when Faith was in need.  I thought before we head to the hospital, let's get the steroids and see how she does because at that point, I thought she sounded really bad when I listened with out stethoscope to her breathing which was very labored.  In fact, I haven't seen her breathing that labored in quite some time so you can see why we were concerned.  Jesi left to get the steroids and while she was gone, I hooked Faith up with her bipap and added the oxygen into the flow.  Even with the forced air pressure from the bipap, she was still struggling which was definitely troubling.  We gave her a bit of time to let the steroids work to shrink any swelling which began to happen.  Faith then had a little coughing fit and began coughing out lots of junk.  Suddenly she began to breath a little easier.  I suctioned her out and got a whole lot more stuff.  At this point we thought that we could make it through the night and decide in the morning.  So Jesi spent the night taking care of her and got about 4 hours of sleep, but this morning Faith woke up looking around at things and people more like normal.  She is still sick, but clearly far better in just a few hours.  When I came down the stairs, I found Jesi and Faith both peacefully sleeping on the couch. 

The pictures above are from this morning...I should have taken some last night so you could see the difference.  We are quite grateful to have this medical equipment in our home.  It is quite clear that with the right help these children can thrive, and we save our insurance company ridiculous amounts of money by avoiding the hospital.  Our houspital is far more comfortable than the hospital...our own little PICU minus the intubation.  By the way, all of our other children have been sick with this as well.  Grace has probably been fighting it the longest and had it pretty rough.
Faith laying on the couch working toward her recovery. 
Medical Good Faith Act update:  We have had tremendous success with our bill  to require hospitals and doctors to reveal their medical futility policies.  On Tuesday morning, I got an email congratulating me on passage of the bill on the floor of the Michigan Senate.  I was stunned because the last communication that I had with the senator's office was some Catholic hospital wanted to add language which made me nervous.  I was reassured that no changes would be made without my approval so I was a bit confused by the email at first, but it was from Senator Tupac Hunter's chief of staff so I knew it must be true.  I did some checking and found out that the bill had just passed by a vote of 37-0-1...the 1 was an absent Senator who was a co-sponsor of the bill so it would have been a full 38-0 victory.  This is AMAZING as we wanted this type of victory, but didn't think we could win over all the democrats.  The reality is...its a pro-life bill.  We believe this overwhelming bipartisan victory will help us get momentum to get it passed in multiple states with the help of other Trisomy 18 parents.  Now it moves to the Michigan House of Representatives.  I have already had some back and forth emails from the chair of the House Health Policy Committee where the bill has been referred.  She let me know that she appreciated our efforts and looks forward to hearing our story, and her staff will be in touch with us to let us know about scheduling.  We are very hopeful to get this through the House quickly to get it signed and put into effect soon.
 "Good faith is an abstract and comprehensive term that encompasses a sincere belief or motive without any malice or the desire to defraud others. It derives from the translation of the Latin term bona fide, and courts use the two terms interchangeably."

1 comment:

  1. That is fantastic news about the bill! And so thankful that Faith is doing better. I know how scary that breathing can get. :( We may be coming to Michigan this summer - would love to give Faith a hug! (After washing my hands of course!)