Last Updated:
August 9, 2003
 
 
Medical Updates

Future: Lots of Theraphy
Some day, I will soar like an eagle!
For now, we have cancelled many of Alex's doctor's appointments for the winter season per the suggestions of the doctor's, "You really need to keep her home and healthy for a while". We will resume our normal hectic schedule of doctor's and therapy appointments in the early spring.
Jaunuary 21st, 2002 - We are very excited to say that Alex has been home from the hospital for two weeks straight, YEAH! We have spent most of the past 3 months's as inpatient at Ann Arbor's Mott Children's Hospital. It feels wonderful to have been home for 14 days straight. Alex finished her antibiotics on Saturday, so we are keeping our fingers crossed that we will be able to remain home free from infections for a while.
January 15th, 2002 - We spoke to Alex's general surgeon today, our plan is to try and keep Alex healthy and home from the hospital through the winter season in hopes of beginning her colostomy reversal surgeries in the spring time.
January 10th, 2002 - Alex's Physical and Occupational Therapies have begun in the home again. Her therapist comes to the home because we are unable to take her out during this winter season due to all of the viruses and infections lurking about.

January 6th, 2002 - Home again! We brought Alex home today and we really hope to keep her here for a while. We won't be taking Alex out of the house for quite some time, friends and family will be asked to wash their hands immediately upon entering our home, and asked to please stay far away when they feel the least bit ill. We can't keep her infection free by any means but we can do our best to try to prevent them.
December 31st, 2001, New Years Eve - UGH! We are back at our home away from home, Ann Arbor's Mott Children's Hospital for yet another infection. As the clock struck midnight and people were ringing in the New Year, Alex had an episode where she couldn't breath, her room was full of nurses and doctors working feverishly to get her airway open and her breathing again!
December 22nd, 2001 - Alex was released from her home away from home today (Mott Children's Hospital), after a 5 day stay. We are taking her home in hopes of enjoying the holidays as a family. We will have to return for another stay after the holidays for some more inpatient testing.
December 14th, 2001 - Alex was fitted for her speaking valve today. We are very excited about the new valve, she can wear it during the day when she is awake, and it will enable her to talk again, YEAH! We haven't heard her voice since October 26th, 2001, when she had the tracheotomy surgery.
December 8, 2001 - Alex is again home after spending most of the last month back in the hospital, (she was home for a couple of days during Thanksgiving). She continues to fight ongoing infections and gagging/eating problems. She will be back in the hospital next Tuesday for minor surgery to remove her Broviac tube, in hopes that the Broviac is the source of entrance for the infections.
November 6, 2001- Alex is back home after almost 3 weeks in the hospital. What started out as another infection and problems eating extended into Tracheotomy Surgery. Mom and dad have been trained to deal with the latest developements and are continuing to treat an infection of the "trach" and pneumonia at home. At this point we have equipment and supplies to rival most any hospital.
September 2001 - Alex has again been in the hospital for recurring infections. This time the infection has made it's way to her blood. At this writing, she is home on IVs and medications after 5 days at the hospital.
- Alex continues to receive physical therapy to reverse the stroke damage. And through speech therapy and testing it is apparent that she will again be able to eat by mouth. This therapy will increase once the cleft palate is corrected.
- Alex has become considerably more active, playing with her toys, laughing and interacting more with the family and visitors.
August 27, 2001 - Surgery - Throat, (Laryingomalacia, CSOM) Plan DL/Bronch, Laser Supraglettoplasty, one side at this time. Tests will be conducted in approximately 4 weeks to determine success of surgery or if additional surgery will be necessary.
August 8, 2001: GREAT NEWS! Alexandra had an Implanted Cranial Pressure Monitor placed within the upper cranial portion of her head. The pressure reading is NORMAL. What a relief!
July 25, 2001: Left leg was "casted" to help minimize surgery that may be needed to correct the damage, straightening and rehabilitation.
July 24, 2001: Met with Dr Gieger to discuss reversal of colostomy and rectal reconstruction, to be scheduled in approximately 6 months after completion of pending surgeries.
July 21, 2001: UTI (Urinary Tract Infection) again, hospitalized 4 days.
July 20, 2001: BIRTHDAY, 1 YEAR OLD!
July 20, 2001: Scheduled surgery for PICU for internal monitoring of pressure on the brain was again canceled due to new infection and recurring UTI's (Urinary Tract Infection).
July 13, 2001: Urine still shows rare strain of yeast, will be referred to Infectious Disease Clinic for treatment.
July 6, 2001: Appointment with Dr. Reddy, results of the sleep study shows obstructive sleep apnea worse during sleep and associated with moderate hypoxemia. Some central apneas noted @ 10.7 Apneic episodes/hr. This is likely due to severe reflux which is causing tissue to swell and overlap the airway. Surgery will be immediately scheduled to remove some tissue.
July 6, 2001: Appointment at the hospital for Neurology follow-up.
Appointment at Audiology, mild hearing lost, tube inplant in her ears are required.
July 3, 2001: Pediatrician re-check of pneumonia and UTI. Found a rare strain of yeast in urine, placed on suprax.
July 02, 2001: Urgent Sleep Study preformed, hospitalized overnight.
June 19, 2001: UTI Pyelonephritis / Citrobacter Freundii and pneumonia, hospitalized 4 days.
June 8, 2001: Experienced seizures (4) in hospital and put on Phenobarbital.
June 7, 2001: Uriteral Re-implant Surgery by Dr. Parks, hospitalized 3 days.
May 30, 2001: Sent home on IV antibiotics pushed over 3 minutes every 8 hours.
May 28, 2001: UTI, hospitalized 3 days.
May 22, 2001: Barium Swallow test at the hospital with Speech Therapist.
May 21, 2001: Appointment with Dr. Murasko at the hospital for a physical and to review results of MRI's Cat Scans and Ultrasounds to plan additional crainial surgeries.
May 18, 2001: 9 month check-up with Dr. Kowalski.
May 17, 2001: Feeding evaluation at Mott's Childrens Hospital, directed to go ahead and try feeding baby food with 3 bolus's daily.
May 8, 2001: Appointment with Dr. Ayyanagar at the hospital - ordered 60 min PT, 90 min OT and 60 min Speech therapy at Mott's Childrens Hospital weekly. Reviewed possibility of "casting" left leg and foot.
May 02, 2001: During above stay, Broviac Surgery was preformed, the Broviac tube will stay in place approximately 12 months or longer if needed.
May 01, 2001: UTI, Admitted with several test preformed ( upper GI, VCUG, Renal Ultrasound, and Blood Tests), hospitalized 5 days.
April 20, 2001: UTI - Visit to University of Michigan Emergency room, per Dr. Parks, unable to obtain IV access, given a shot of antibiotics and discharged.
April 2, 2001 : Rotavirus: Must have been infected during previous stay, hospitalized 6 days.
March 3, 2001: Urinary Tract Infection (UTI), Hospitalized 6 days.

Where we are now....3/17/2001

Now that Alexandra is going to live, there will be numerous surgeries required in addition to major therapy to correct the results of the brain damage. The damage, equivalent to a stroke in an adult has left her unable to swallow and the left side of her body, partially paralyzed. she is now being fed through a "G-tube" directly into her stomach.

The Hospice program has now ended their care and they were a Godsend. They offer moral support and during the time they were involved, financially covering a lot of what the insurance didn't, including the initial physical therapy. This therapy has given hope that there will be the opportunity for Alexandera to lead somewhat of a normal life.