Going Home with High Hopes- 1 Month of ACTH

Chase on September 16th

Chase on October 2nd 

Sunday, September 22nd- On day 6 of the ACTH, Chase had his first day with no spasms! Our hopes were as high as the sky!

Chase was now immunodeficient so he could not go to daycare and risk getting sick or infection during the duration of the ACTH injections. Tom and I began our shifts of each going to work for half a day. Tom owns his own lighting business and luckily my employer Spectrum Aeromed was completely supportive and flexible.  

The next 2 weeks of the full dosage I would say were the hardest we had ever been through as parents. Chase was just miserable, crying all day and all night long. It was so hard to see him in so much pain and it was tons of work feeding, diapering, doing laundry all day long. Chase would drink an 8 ounce bottle of formula every hour and ate 3-4 full meals of baby food each day and snacks all day in between. This was quite significant since he would barely eat baby food prior to this!  He would wake up all night long screaming, miserable and hungry. He gained 30% of his body weight within a week and could barely walk around.  His stomach bloated out. And the diapers…  We went through diapers, formula and food like you have never seen.  Our daughter Anna would walk around with her hands over her ears and would run and hide in a closet when it was time for the injections.  

Chase paced aimlessly and cried like this every waking minute for 2 weeks...

Morning and night, Tom would hold Chase down, and I would give the injections (the nurses told me I would get used to it but it never got easier).  Chase would scream in terror each time he saw us coming with the needle.  It was the hardest thing we have ever done, but each day there were no more spasms we just focused on that fact and it made it easier.  We had to visit his local pediatrician 3x a week during this time, who reported his blood pressure and blood test results to the doctors at Mayo.  

Obviously by now, our beliefs had turned around. Although I did not know it at the time, Tom later told me that he took Chase to church every morning and prayed for him and had a priest bless him there. We had a priest from the parish I grew up in come to the house and bless Chase as well. He was on the prayer chain at both churches we attended and we started sending our daughter to Sunday school at this time. Ironically, during her first week the lesson was on how Jesus heals the sick.

Chase's stomach was so hard & bloated it looked
and felt like it would explode!

Not a happy boy