Members of the clan before heading to Mass...
Nana and the Madigan grandkidlets.
Sunday, December 26, 2010
While Mom was away...
While Mom was at UCLA with Áine, Ciara took this picture of Brendan before he headed to school for his class Christmas Party.
Ciara took this picture of herself before her Christmas Program later the same night. Note the lips. When Mom's away...
Monday, December 20, 2010
She's Home!
After 14 days in the hospital, Áine Clare returned home on the 16th with a PEG (percutaneous endoscopic gastrostomy) tube in her tummy to get her medications more easily in her. Yay! The medication regimen for Mom and Áine is off to a slow but steady start as we re-learn how to put meds in the g-tube and prep meds for the g-tube and keep the wound clean and shower instead of bathe. A little more time consuming, but we'll adjust, and with an assistant like Ciara it should be smooth sailing!
Thanks to Mary for the leotard suggestion! Nana is going to put snaps or velcro in the crotch to assist with changing and to keep Áine's hands away from the tube. (Crotch... such a yucksville word!)
Miss Áine Clare the night before the procedure in our very own room for the first time ever at UCLA!
The morning of the procedure.
Waiting to go to surgery. This was very interesting. I put "Sesame Street" on the telly which was at the foot of the bed. The speaker was at the head of her bed. And being the visually impaired child she is, she turned her body around toward the sound and "watched" the various monitors in her room. I thought it was an interesting display of her visual impairment, given that she can so often appear completely sighted.
A few hours after the procedure!
Friday, December 10, 2010
Áine Update
Fri 12/10/2010
This morning, John and I met with the psychiatrist and social worker assigned to Áine's case.
The psych's "dream plan" is that Áine be discharged from the NPH on Monday, go in for g-tube placement and be discharged from the pediatric floor on Wednesday. This seems unlikely however because of the GI doctors inability to look at the whole person despite the explanations given by many of Áine's doctors. We will allegedly have the final word on the g-tube situation by the end of today.
The back-up plan is that barring any unforeseen circumstances over the weekend, Aine will be discharged from the NPH on Monday.
She will have to see her neuropsychiatrist at UCLA every two weeks. She will be scheduled to see the head of the sleep medicine dept in an outpatient appointment.
I am struggling with the fact that until sleep and g-tube placement issues are solved, in essence nothing has changed except that there is now another medication for me to try to get in her.
Additionally, the nutrition/dietitian team at UCLA has switched her to Vanilla Elecare --five 8 oz. bottles per day. The cost of this of course warrants a third mortgage on our house, but if she has a g-tube then it is covered by insurance.
I am not so frustrated about the sleep issue as I am the g-tube issue. Because if all her meds were in her on a consistent basis, she would naturally be "knocked out" and then of course the positive effects on her behavior. But I guess that's too obvious, right?
In any event, that's the latest.
Oh, we were able to visit with her today. She was very sleepy and heading off for a nap because of the meds. They brushed her hair in two curly pig tails! She seemed happy to see us.
This morning, John and I met with the psychiatrist and social worker assigned to Áine's case.
The psych's "dream plan" is that Áine be discharged from the NPH on Monday, go in for g-tube placement and be discharged from the pediatric floor on Wednesday. This seems unlikely however because of the GI doctors inability to look at the whole person despite the explanations given by many of Áine's doctors. We will allegedly have the final word on the g-tube situation by the end of today.
The back-up plan is that barring any unforeseen circumstances over the weekend, Aine will be discharged from the NPH on Monday.
She will have to see her neuropsychiatrist at UCLA every two weeks. She will be scheduled to see the head of the sleep medicine dept in an outpatient appointment.
I am struggling with the fact that until sleep and g-tube placement issues are solved, in essence nothing has changed except that there is now another medication for me to try to get in her.
Additionally, the nutrition/dietitian team at UCLA has switched her to Vanilla Elecare --five 8 oz. bottles per day. The cost of this of course warrants a third mortgage on our house, but if she has a g-tube then it is covered by insurance.
I am not so frustrated about the sleep issue as I am the g-tube issue. Because if all her meds were in her on a consistent basis, she would naturally be "knocked out" and then of course the positive effects on her behavior. But I guess that's too obvious, right?
In any event, that's the latest.
Oh, we were able to visit with her today. She was very sleepy and heading off for a nap because of the meds. They brushed her hair in two curly pig tails! She seemed happy to see us.
Sunday, December 05, 2010
And a Good Time Was Had By All
Brendan's 18th birthday party went on as planned despite the absence of Miss Áine Clare.
A good time was had by all as we feasted on pizza and salad and cupcakes and enjoyed hot coffee and hot chocolate stations. Many thanks to Amy (who was unable to join us) for the heaters. They were much appreciated. So many people who have journeyed through life with Brendan were able to celebrate with us... therapists who became friends, friends who became family, and family who supports us still.
THANK YOU TO EVERYONE FOR LOVING OUR BOY!
Brother and sister before the festivities.
The Dad
The Birthday Boy!
Some of the group
Saturday, December 04, 2010
Laughing Áine
While at Target with Ciara yesterday, my cell phone rang just before noon -- Áine's pediatrician. Long story short, I was to get Áine to the ER at UCLA post haste and have her neuropsychiatrist paged. He would admit her to the Resnick NeuroPsychiatric Hospital.
No question about it, despite knowing that she is in good hands and will be helped, it was a rough day as I missed being with Brendan on his birthday and had to leave my baby at UCLA with her not knowing what was going on. Parents cannot stay overnight at the NPH. In fact, visiting hours are quite limited. Mondays through Fridays 7-8pm. Saturdays and Sundays 2-4pm and 7-8pm.
She will be there indefinitely while the team stabilizes her medications and helps her with her self-injurious behaviors and such.
On a happy note, during our 8 hour ER visit, Áine gifted me with this moment of pure joy. Enjoy!
No question about it, despite knowing that she is in good hands and will be helped, it was a rough day as I missed being with Brendan on his birthday and had to leave my baby at UCLA with her not knowing what was going on. Parents cannot stay overnight at the NPH. In fact, visiting hours are quite limited. Mondays through Fridays 7-8pm. Saturdays and Sundays 2-4pm and 7-8pm.
She will be there indefinitely while the team stabilizes her medications and helps her with her self-injurious behaviors and such.
On a happy note, during our 8 hour ER visit, Áine gifted me with this moment of pure joy. Enjoy!
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