The past 6 months have been crazy and mostly a blur. The days were long and the goal most days was just to survive...literally. So this little blog went to the back burner for a while. But so much was happening with Audra, and people wanted updates so I tried to get things posted here and there. Lately, I have had some time give this blog the attention it needs. Which has meant lots of back-posting...and hoping my memory serves me right.
One thing I have mentioned in recent posts but haven't really explained was Audra's home care nursing...
Back in November her GI doctor and nutritionist became increasing concerned about Audra's trend of weight loss. They completed some testing (bloodwork, ultrasound, endoscopy) and didn't come up with a reason. This was during a period of time when she was beginning to show signs of developmental regression also. She was running low grade fevers and her inflammatory markers indicated that something was going on. She just hadn't been herself since the UTI that knocked her down for nearly a week in August. She never bounced back like she has in the past after UTIs. So they came to the decision that she needed more calories. At that point Audra was getting one bolus G-tube feeding during school plus eating breakfast, lunch and dinner, then we ran her overnight G-tube feeding for about 10 hours. They said she needed two bolus feedings during the day and 11-12 hours of feeding overnight. I knew right away that the math wouldn't add up. There just aren't enough hours in they day to get all those tube feedings into Audra and feed her three meals a day AND take care of the other kids and get them to where they need to be (practices, etc.). I work from 11am until at least 9pm so Sean is on his own after work to get it all done. I knew we needed help. I called around to home care nursing agencies, talked with her pediatrician and the insurance company and by the end of December she was approved for 4 hours of home care nursing per day. We chose 4-8pm so that the nurse could get Audra off the bus, give her a second bolus G-tube feeding, get her to eat dinner, give her a bath and her evening meds, then get her into bed and start her overnight G-tube feeding about 7:30. Plus throw in there the once a week immunoglobulin infusion she needed. It was a lot to accomplish in just 4 hours. The nursing agency was able to find a nurse who could work Monday's 4-8pm but that was it! Apparently it wasn't an appealing shift to home care nurses. But we were very grateful for the help even if it was only one day a week. And we continued to be hopeful that the other days would get covered also. When the first home care nurse started in late January it was about the time that Audra's behavioral symptoms became more alarming...agitation, arching, screaming, hitting, eating non-food items. She already had lost some of her verbal skills so trying to figure out if something was bothering, hurting or upsetting her was very challenging. The nurse was able to help us get Audra to urgent care and pediatrician visits. At that point we were hoping and trying to find an easy answer such as an ear infection or UTI. But, after about 6 or 7 weeks the nurse quit.
That was around early March, when things were really getting out of control. Audra was now leaving the house and running down the street, unbuckling her carseat and trying to open car doors an windows while I was driving, undressing at school. She was having trouble with insomnia, incontinence and showing the first signs of mouth twitching. I had been in frequent contact with her neurologist, she had an MRI of her brain and spine and finally we started giving her Risperdal out of desperation. Then next day was the first time she was admitted to CHOP because of her behaviors.
I'm not going to rehash that whole admission {you can scroll back and read all about it} but one good thing came out of her nearly 3 week hospitalization...we got insurance approval for 8 hours per day of nursing care. Case management at the hospital helped me work with different nursing agencies and we found an agency that had a nurse who could work Monday-Thursday 8pm to midnight. This new nurse started shortly after Audra was discharged from the hospital. And oh what a sweet relief it was to have help 4 nights a week. It meant Sean could go to cardiac rehab after work instead of rushing home to get Audra off the bus. And he could make dinner then take Aidan and Maura to their various sports/activities without having to bring Audra along. And Audra was getting the nutrition, calories and meds she needed consistently at least 4 days a week. This nurse was a great fit for Audra because she came with pediatric and psychiatric experience. She saw Audra during some of her worst episodes/outbursts... whatever they should be called. By this point she was having self-injurious behaviors, and fits of emotional labiality. She would go from screaming to laughing to crying with tears in a matter of minutes. And these episodes could last hours. The nurse said that in all of her psychiatric experience she had not witnessed anything like it. She said she was comfortable holding down an adult man but Audra was so much more dangerous...to herself and others. We started this journey into home care nursing for help with getting Audra all the tube feeding calories she needed each day, and it transformed into this crazy mess of needing the nurse to just try to keep Audra safe. Together we were barely surviving each day...I can't even imagine how difficult it would have been without the nurse 4 days a week.
After 4 weeks at home, with multiple doctor visits, phone calls, emails and new mediation trials Audra ended up back in the hospital for all the same reasons. The day after she was admitted Nurse #2 quit. We were starting to feel defeated. Did the two nurses quit because of Audra? I knew she was a lot to handle, which is why we needed the help so desperately. And I was worried...if we didn't have nursing care at home I wasn't sure how we were going to manage.
Luckily the same wonderful case manager at the hospital jumped right back in to help us work with the home care agency. On the day Audra was discharged from her second hospital admission in 2 months...Nurse #3 met us at our house. And thankfully, 3 months later, she is still showing up Monday through Thursday each week and taking excellent care of Audra from 4pm to midnight. Hallelujah !!
The dilemma of what to do with Audra over the summer started looming over us. She was in no condition to hire a babysitter to watch her. And her care was too much to even ask a family member to watch her. She had a third hospital admission in June that coincided with the last two weeks of school. It was during that admission that she was "diagnosed" with Autoimmune Encephalitis and started the treatment for it. The medical team also worked hard at getting Audra approved for 12 hours of nursing care per day during the summer. And they insisted that she wouldn't be discharged home until the nursing agency had all the shifts covered. Amazing Nurse #3 was eager to do 12 hour shifts Monday through Thursday, bless her heart. But what about Fridays?? It took a little while, but the agency eventually found another nurse who would do 12 hours on Fridays. So, 6 months into this process we finally had 5 days a week covered.
But we weren't done yet. With Audra lately...once one battle is done, there is another just beginning.
Audra usually attends Extended School Year services over the summer. This program runs for 5 weeks over July and August. The intent is to keep working with the kids on their IEP goals so that they don't lose any skills over the summer. And this Audra needed for sure. The trouble is ESY is held at only one school in the district with all the kids grouped together by grade with whichever teacher was assigned to ESY that year. So not only would Audra be in at different school, she would also be surrounded by different kids and different teachers. Now, she did ESY last year, and it worked out just fine. But this year things are so different. Throughout April and May her teachers really struggled with her at school. Now, if the people who know her best...the ones who have been working with her for the past 2 school years are having trouble managing her in the classroom...how realistic is it to think that people who never met her before would be able to manage her, let alone work on IEP goals and have any kind of success. I really, truly felt that it was unsafe and unfair to subject Audra {and the new teachers and students} to that situation. So, I requested home bound ESY services for Audra and the school district agreed !!
For 5 weeks over July and August it was a constant revolving door at our house during the day. The nurse would arrive at 9am, I would leave for work about 9:30, and over the course of the week many teachers and therapists came each day. She had a teacher (who is also a behavior analyst...and who also happened to know Audra from the school year) come twice a week for two hours each time. Then there was OT, PT and the hearing therapist also. On top of that were visits from the behavioral therapist who was coming twice a week. Even she was at a loss as to what is going on with Audra and how to help her. But at the very least her time with Audra provided a small period of respite for me (or the nurse).
By this time Audra was mostly confined to the house. Taking her outside was tricky. She might dangerously bolt for the street, or find something on the ground and eat it, or take her clothes off in the middle of the yard. Or worse, she might have an episode of agitation/aggression, which is very hard to watch. She arches and throws her body, stiffening her arms and legs, screams, bites, hits, etc. And NOTHING settles her down. So she spent the majority of her summer days in her room. On good days the nurses could strap her in the wheelchair and take her on long walks, which she loved. So, the extra bedroom in our house became her haven. She never had a bedroom of her own because she slept in a toddler bed in our room due to her overnight G-tube feedings. Now, with a nurse there with her for 50% of the day, she needed a place of her own. So we set up mattress on the floor and a comfy chair for the nurse. I organized all of her medical supplies into cubbies. And I brought up the little table and chairs from the playroom so Audra had somewhere to do her "work" with the teachers.
Audra's days have been filled with nurses, teachers, therapists, G-tube feeds, meds, more meds, and long naps. But gratefully those days have been
at home. In the past few months, more than once, the idea of placing Audra in a "facility" has been mentioned to us by multiple doctors and therapists. But, thankfully, we have managed to keep her where she belongs, here at home...with a lot of help and support from many people.
It truly takes a village...and Audra's got a great big village.
We are so grateful for everyone who is a part of her village.
