Here is a timeline of events to help others gain some insight into Getty’s life:
March 2010 (Month 0):
- Getty born.
June 2010 (Month 3):
- Noticed Getty was not achieving developmental milestone of lifting her head. Attributed it to a larger than average head circumference and perhaps slow development.
July 2010 (Month 4):
- Noticed Getty was not achieving developmental milestones of lifting her head or sitting up. Initially attributed it to a larger than average head circumference and perhaps slow development.
- During routine pediatric visit, pediatrician sent us to pediatric neurologist. Tentatively diagnosed with SMA on July 30. Diagnosis is Type 1 because Getty cannot sit upright without support.
- Immediately reached out to SMA community for help and support and very thankful for it.
August 2010 (Month 5):
- Established contacts with SMA community; signed up for SMAspace
- Began crash course in SMA education. See SMA Links for Newly Diagnosed.
- Tentative SMA diagnosis confirmed via blood work. Getty has zero copies of SMN1 gene and has 2 copies of SMN2 gene.
- Visited pediatric pulmonolgist, gastroenterologist, nutritionist, and geneticist.
- Performed barium swallow study, results normal. [Although we did a swallow study, we now STRONGLY advise AGAINST them for SMA Type 1. We are happy to explain upon request.]
September 2010 (Month 6):
- Began planning surgery for gastronomy tube (G-tube) placement and preventative Nissen Fundoplication procedure, although this planning should have started asap after the diagnosis.
- Planned for Getty to get monthly Synagis immunity booster shots to get her through Respiratory Syncytial Virus (RSV) season, which runs roughly from November to March.
October 2010 (Month 7):
- Began home visits with County Office of Education.
- Got first first annual flu shot and monthly Synagis shot for RSV season.
- Noticed gradual increase in coughing during oral feeds, indicating loss of swallow function and increased risk of getting food in the lungs (aspiration) and related pneumonia risk.
- Continued planning G-tube & Nissen surgery for mid-November 2010. Doctors are split on whether to do a preventative Nissen. We decided it was better to have a Nissen than risk reflux aspiration pneumonia. Although Getty was not presenting reflux at the time, eventual reflux is common in SMA and also may be caused by G-tube placement.
- Held personal fund raisers with help of friends and family.
- Getty experienced constipation as is common with SMA. Switched from regular infant formula to Enfamil GentleEase plus 1 teaspoon Miralax daily. Use 1 PediLax glycerin suppository as needed if Miralax is not enough for the day.
- Adopted sanitary and sick protocols. All hands must be clean at all times in the home. No sick visitors allowed. Sick parents must wear gloves and mask at all times. Limit Getty’s exposure to indoor public places as much as possible during RSV season, including medical offices. Sickness is very bad for an SMA baby due to lack of swallow and cough function.
November 2010 (Month 8.):
- Had nasogastronomy (NG-tube) placed on November 4 due to loss of swallow function occurring before G-tube surgery could occur. Used small diameter (size 6 French) to maximize comfort.
- Received home stethoscope.
- Received hand percussor device to perform chest physical therapy (CPT)
- Stopped oral feeds and performed only NG-tube feeds leading up to surgery to minimize risk of aspirating formula into lungs.
- Received suction machine with oral suction catheters (size 8 French then 10 French) and nasal suction devices (olive tips) to remove secretions (saliva and mucous) from mouth and nose due to swallowing difficulty and reduced strength of cough.
- Received Hope Car Bed on loan from Families of SMA to replace child car seat to avoid risk of choking while sitting up. Using sideline restraint system to allow laying on her side to avoid risk of pooling secretions in the throat by lying on her back.
- Received Philips Respironics CoughAssist machine, starting pressure 15/15 then increasing to 20/20. Inhale, exhale, and pause settings are 1 second each. Probably should have continued increasing pressure slowly to 30/30 at this time, then slowly to an ideal setting of 40/40.
- Began twice daily CPT, suction, and CoughAssist routine. More secretion suction as needed. Additional CoughAssist as needed.
- Philips Respironics Trilogy 100 home bipap machine on order.
- Admitted for pre-op bipap acclimation on Nov. 13 (Settings 10/4 with backup rate of 30).
- G-tube & Nissen surgery performed Nov. 16; extubated directly to bipap to preserve energy for healing instead of wasting energy on work of breathing post-op (Settings 12/4 with backup rate of 30). NG-tube removed.
- Taken off post-op bipap Nov. 17.
- Discharged Nov. 20.
- Blood work confirms each parent is missing one copy of SMN1 gene and is thus an SMA carrier.
- Received Kangaroo Joey feeding pump for home use with feeding bags.
- Established feeding regimen of 36 oz (1,080 ml) of formula per day spread over 6 feeds at 7:00, 11:00, and 3:00 a.m. and p.m. The three feeds at night at 11pm, 3am, and 7am, are one continuous feed of 18 oz (540 ml) refrigerated formula at a rate of 55 ml/hr but increasing feed rate to 400 ml/hr when we awake to ensure feed is complete before formula expires after about 9 hours. The three feeds at 11am, 3 pm, and 7 pm are “bolus” (quick) feeds of 6 oz (180 ml) each at a rate of 300-400 ml/hr. Mix one fresh batch of formula for the day and keep it in the refrigerator.
- Received ambu-bag for emergency use.
- Replaced upright sitting stroller with flat bassinet stroller to prevent choking while upright.
December 2010 (Month 9):
- Received oxygen supply at home for emergency use.
- Getty re-admitted to hospital to get bipap machine for home use and adjust proper settings, Dec. 7-9.
- Received Trilogy 100 bipap machine for home use while sleeping. (Settings 12/4 (ipap/epap); backup rate of 30; S/T Mode).
- Received pulse oximeter (Masimo Rad-8) and pulse ox probes through SMA Medical Supply for constant 24-hour use to monitor blood oxygen levels and heart rate. Altered minimum O2 alarm setting to 94. Increased maximum heart rate alarm to 170.
- Received humidifier for bipap (Fisher Paykel HC150, setting 2.0)
- Received Farrell Bags to permit proper air ventilation of stomach via G-tube while continuously feeding when asleep on bipap.
- Received oxygen adapter for cough assist and bipap for in-line oxygen feed in case of emergency.
- Learned emergency plug protocols if secretions plug the airways, leading to a “desat” (desaturation of oxygen levels in the blood in a single event < 90% or chronically < 95%).
- Began daily postural drainage position 15 minutes twice per day (hips higher than head) to allow drainage of secretions while on an empty stomach.
January 2011 (Month 10):
- Ordered specialized medical stroller (Tomashilfen Exomotion EASyS Stroller). ETA 6 weeks.
- Performed overnight sleep study to determine more accurate bipap settings. Recommended bipap setting of 11/5 as optimal based upon sleep study results.
- Put all of Getty’s electrical medical equipment on a rolling cart with a power strip attached with zip ties to allow equipment to more easily follow her through the home. The cart is 3-shelf metal rack shelving from Lowe’s hardware, replace feet with rolling casters. Attach feeding pump to shelving post with c-clamp. Attach hooks to shelving to hang feeding bag.
- Received nebulizer for saline treatment in case of thick secretions.
- Increased cough assist pressure slowly to 30/30, which probably should have occurred a month sooner. Will probably slowly increase to an ideal setting of 40/40 soon.
- Adopted protocol to always suction secretions before moving head to avoid saliva clogging throat, causing choking events and desats.
- Getty overfeeding; reduced feed from 36 oz. (1,080 ml)/day to 33 oz (990 ml)/day. It is easy to overfeed an SMA baby because they have less muscle mass to burn the calories.
February 2011 (Month 11):
- Received Tomashilfen Exomotion EASyS medical stroller to “get moving”
- Increased Miralax with feeds from 1 teaspoon to 1 tablespoon per day to “get moving” in a different way
- Began slow increase of cough assist pressure from 30/30 to an ideal setting of 40/40. Inhale, exhale, and pause timers are set at 1 second each. Performing 3 sets of 5 coughs twice per day and additionally if needed.
- Bipap setting changed from 12/4 to 11/5 based upon sleep study results.
March 2011 (Month 12):
- Getty Owl Foundation launched in Getty’s namesake
- Received Canadian bipap mask; reduced bipap humidifier due to rainout in new mask on first use. Canadian mask superior to blue gel mask in that it is much quieter, has a better seal on the face, and causes less skin breakdown.
- Received arm and leg slings and bipap hose wrap from InsideSMA
- Getty experienced sweating bouts; changed bipap settings back to 12/4 from 11/5
- Received minivan as a gracious donation from Citrus Heights Kiwanis Club
- Received Powersonic PS-12180NB 2v/18 Amp hr. sealed acid battery for mobile power to cough assist while on EASyS medical stroller
- Received Power Bright APS300-12 300W/12V Pure Sine Wave Inverter for mobile power to cough assist while on EASyS medical stroller
- Received Power Bright APS600-12 600W/12V Pure Sine Wave Inverter for mobile power to all equipment while in van
- Received Battery Tender to trickle charge stroller battery
- Had all mobile power equipment set up and installed by local stereo shop.
- Van inverter is hardwired to van battery with a circuit breaker using 4 gauge wire. Van inverter is mounted to van floor.
- Stroller battery is connected to stroller inverter with 10 gauge wire.
- Installed quick-connect wire connectors to all wires connecting batteries to inverters and the trickle charger to allow quick connecting and disconnecting as needed.
- Getty still gaining excessive weight. Want to avoid weight gain putting stress on her lungs. Adding stress to lungs can cause increased dependency on bipap. Increased bipap use can cause her to do less work of breathing, burning less calories, causing even more weight gain. Reduced feeds from 33 oz (990 ml) per day to 26 oz (780 ml) per day Enfamil GentleEase, plus an additional 9 oz. (270 ml) water.
- Kaiser endocrinologists denied DEXA scan to evaluate bone density. Low bone density is common in SMA, causing unexpected fractures during routine activities.
- Getty’s 1 year birthday!
April 2011 (Month 13):
- Received EZ-on vest for transport because Getty became too big for the Hope car bed
- Getty goes to Sacramento Zoo as first outing utilizing all mobility equipment
May 2011 (Month 14):
- Getty goes to Monterey Bay Aquarium
June 2011 (Month 15):
- Bipap settings change from 12/4 to 16/4 based upon sleep study
- Getty admitted to PICU via ER on June 27 for nearly 2 weeks with viral atelectasis likely from the common cold. Bipap settings raised to 20/6 then brought slowly back to baseline. Treated with aggressive pulmonary toilet every 4 hours.
- X-rays confirm suspected low bone density (osteopenia), which is common in SMA due to lack of weight-bearing
- Received ankle-foot orthotics (AFOs) to prevent ankle contractures
- Kaiser approves Getty for Vivonex Amino Acid Diet
July 2011 (Month 16):
- Received percussive vest, using 3 times per day at 15 minutes per treatment at 8 Hz
- Getty returns to baseline after illness
- First Diagnosis Day (D-Day) anniversary
August 2011 (Month 17):
- Accepted by Shriner’s Hospital to get orthotic care. Attempting to get a stander, chest bracing, knee bracing, DEXA scans to accurately monitor bone density, vitamin D supplements, calcium supplements, and possibly bisphosphonates to promote bone density. SMA kids typically have low bone density due to lack of weight-bearing on the bones.
- Began Vivonex Amino Acid Diet on August 24
September 2011 (Month 18):
- Received custom knee-ankle-foot orthosis (KAFOs) through Shriners Hospital to correct and prevent muscle contractures caused by general immobility
- Received Prime Engineering Super Stander to enable standing upright with bracing to enhance digestion, breathing, and bone density
- Performed hip and femur x-rays to assess low bone density caused by lack of weight bearing on the bones
October 2011 (Month 19):
- Removed Bard gastronomy tube, replaced with Mic-Key Button gastronomy tube
- Received annual flu shot
- Began second annual round of monthly Synagis shots to protect against Respiratory Syncytial Virus (RSV) during RSV season, which runs from late autum through early spring
- Approved for California Children’s Services through California Department of Health Care Services
- Attended first CCS appointment for physical therapy evaluation
November 2011 (Month 20):
- Received custom ankle-foot orthosis (AFOs) through Shriners Hospital to correct and prevent muscle contractures caused by general immobility
- Performed spinal dual-emission x-ray absorptiometry (DEXA) scan to assess low bone density caused by lack of weight bearing on the bones. The scan was an adult scan, not a pediatric scan. While the results have no independent value, they will be used as a baseline for future scans to monitor bone density over time.
March 2012 (Month 24):
- Getty turns two! 🙂
May 2012 (Month 26):
- Getty begins Tobii Gaze eye-tracking computer & communication device trial
October 2012 (Month 31):
- Getty approved for Tobii Gaze eye-tracking computer & communication device
November 2012 (Month 32):
- Began third annual round of monthly Synagis shots to protect against Respiratory Syncytial Virus (RSV) during RSV season, which runs from late autum through early spring
December 2012 (Month 33):
- Getty begins power chair demo trial
March 2013 (Month 36):
- Getty turns three! 🙂
April 2013 (Month 37):
- Getty begins pre-school in-home services (Speech Therapy, OT, Teacher)
- Received new portable Philips Respironics Cough Assist T-70
- Shriner’s appointment to recast AFO’s.
- Getty got 3 chickens: Ethyl, Agnes, Mildred)
May 2013 (Month 38):
- Shriner’s appointment to receive custom AFO’s.
- Neuromuscular clinic at Kaiser. Getty saw all of her pediatric specialists for routine matters.
- Road trip to Calistoga
June 2013 (Month 39):
- Shriner’s annual check-up and adjustment to braces
- Lab draw re nutrition
- Arboretum walk at UC Davis
- Visits to local duck pond
- Road trip to San Francisco
July 2013 (Month 40):
- Visit Folsom Zoo
- First trip to movie theater (Turbo)
- Independence Day fireworks
August 2013 (Month 41):
- Visit Sacramento Zoo
- Appealed denial of Synagis antibody re RSV season
- Power wheelchair training
September 2013 (Month 42):
- In-home preschool, occupational therapy, speech therapy
October 2013 (Month 43):
- Visit Gibson Ranch, walked daisy the horse
- Received pedicure from Angie
- Photoshoot with Morgan
- Visit pumpkin patch
- Implemented Monday Bake Day
- Visit classroom to meet fellow preschool classmates
- Synagis appeal approved
- Begin Synagis for the RSV season (October through March)
November 2013 (Month 44):
- Attend Neuromuscular Clinic
- Lab Draw re nutrition
- Start VGo robot in preschool classroom for virtual classroom
December 2013 (Month 45):
- Getty approved for power wheelchair upon filing grievance with medical provider
- Made gingerbread house
- Greeted Mom at finish line of California International Marathon (CIM)
March 2014 (Month 48):
- Getty turns 4! 🙂
- Getty’s first trip to an indoor hardware and gardening store to get garden flowers
April 2014 (Month 49):
- Getty goes bird watching
- Getty releases raised butterflies
- New custom TLSO from Shriners
May 2014 (Month 50):
- Neuromuscular Clinic
- Getty & Mom take first twosome overnight trip to the beach
- Getty received custom outdoor swing
- Getty registers normal readings on overnight heart monitor
June 2014 (Month 51):
- Graduate preschool
- Attended summer school
- Attended Zoo School
- Received aquarium with 3 fish (Jacques, Marlin, & Gil)