Abby spent 11 weeks (77 days) in the hospital from May 20th to August 5th. Those were the longest (and shortest) days of our lives. Looking back now it seems like time has just flown by. But each individual day trapped inside that hospital seemed like an eternity. Here are some of the things that went on during that time.
- May 20th - brain surgery to remove ruptured AVM
May 26th (Day 6) - MRI shows part of her brain is damaged due to lack of blood flow - she is fully sedated again to allow her brain to focus on repair- May 29th (Day 9) - given another Priesthood blessing
- May 30th (Day 10) - continuous EEG monitoring put in place to determine if her shaking fits are seizures
- May 31st (Day 11) - ICP drain removed from her head
June 2nd (Day 13) - breathing tube removed and we got to hold her for the first time
June 4th (Day 15) - opened her eyes for first time - only slightly- June 8th (Day 19) - central line removed; EEG monitoring stopped; last sedation medication is stopped
- June 10th (Day 21) - turned her head to look at Anthony; followed commands to wiggle her toes
- June 12th (Day 23) - moved out of the ICU
- June 15th (Day 26) - flew from Rady Children's Hospital in San Diego to Phoenix Children's Hospital
June 16th (Day 27) - placed in a SHARED room; pulled feeding tube out in middle of night- June 21st (Day 32) - began rehab program - physical therapy, occupational therapy, speech therapy - got wheel chair and we can take her wherever we want around the hospital
June 22nd (Day 33) - all monitoring removed- June 23rd (Day 34) - moved into her own room after we complained that sharing a room was not acceptable - decorated wall with pictures colored by Primary and Nursery kids
June 24th (Day 35) - squeezed my finger- June 28th (Day 39) - staples removed from back of head
June 29th (Day 40) - successfully swallowed a small taste of baby food without coughing or gagging- June 30th (Day 41) - making more vocal noises; licked flavored chapstick off lips; pulled feeding tube out again
- July 4th (Day 45) - pulled feeding tube out - new one goes into stomach instead of intestine
July 5th (Day 46) - wears eye patches to train eyes to uncross- July 9th (Day 50) - has thrown up every day since new feeding tube was placed
- July 15th (Day 56) - therapy dog came by - Abby was very focused on him - had great head control - was reaching for the dog
- July 16th (Day 57) - had surgery to place G-tube (feeding tube) directly into stomach - no more tube going down nose/throat and taped to her face!
July 17th (Day 58) - Spencer came to see Abby - she was very focused on him - reached out to grab his arm
July 18th (Day 59) - much timelier swallows with out feeding tube down her throat - previous delay: 20-30 seconds - now delay only 8-12 seconds - tasted pureed strawberries, pureed macaroni and cheese
July 21st (Day 62) - still throwing up; painted her fingernails and told her to blow on them -she did- July 25th (Day 66) - G-tube came out during therapy - line got caught on wheelchair and popped out - nurse put it back in and started up feeds again but it was not put back in the right place - formula was pouring into her abdominal cavity - vomiting and moaning - rushed into surgery to replace G-tube and flush out abdominal cavity
- July 26th (Day 67) - doesn't even look like she had a horrible day yesterday - very purposeful in therapy - tried to blow whistle; rode tricycle - immediately reached for handle bars - pushed with legs
July 28th (Day 69) - said "mom" - has to try really hard, but she can say it- August 1st (Day 73) - held book by herself and pushed buttons
- August 3rd (Day 75) - passed swallow test - no aspirating - ok to have 2oz pureed foods 3 times per day and nectar-thick liquids (still has to have feeding tube for main source of nutrition)
- August 4th (Day 76) - held toy in left hand and switched to right hand all on her own
- August 5th (Day 77) - DISCHARGED FROM PCH 6:54pm
Holly, Physical Therapist
We are so grateful to have Abigail back home with us. Our little family is complete again! We really feel that Abby will do much better now that she is here with us (and Spencer!) and in her own familiar environment. She will continue on with her therapies and we are confident that with time she will be able to regain her speech and her strength.
Abby's AVM was in the middle of her brain - just above her brain stem - in the cerebellum. The cerebellum controls balance, movement, and coordination. The front part of your brain controls all your thinking, memory, and other cognitive skills. This area of Abby's brain was completely unaffected, so this whole time she has been fully aware of her surroundings and understands everything. She just has difficulty getting her body to do the things she tells it to. In essence she is trapped inside her body. But we have seen tremendous progress through her therapies over the last several weeks. Abby can now hold up her head on her own, reach for things and hold on to them, swallow (still with some difficulty though), roll over onto her tummy.
We love you Abby!!!
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