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Letter to Gwendolyn's caretakers

June 01, 2008 by Bill Strong
This is a letter that Victoria and I wrote to provide to Gwendolyn's night nurses and other caretakers that come into our home to introduce them to our precious Gwendolyn, her disease, her needs, and our wishes.

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Hello and welcome to our home. We wish we were meeting you under different circumstances, but here we are...and we need you. We need you to listen to what we have learned works best for Gwendolyn, but also guide us with your experience. We need you to jump in when necessary, but also allow us to care for our baby. We apologize for being exhausted, and we appreciate that you are helping us get some rest so that we can be better parents. Having said that, please never hesitate to wake us for the slightest concern.

Gwendolyn is 8 months old and has Spinal Muscular Atrophy Type 1 or SMA. It is a genetic disease that impacts her muscles, especially her respiratory breathing. It is a terminal illness. Gwendolyn's life expectancy is 1 to 2 years, however, with the regular noninvasive treatments we are doing (nebulizer treatments, chest percussions, cough assist machine, bi-pap breathing machine, and diligent suctioning) some children with this disease are living longer. She is fed via G-tube and has had the Nissen fundoplication surgery to decrease her risk of reflux. Gwendolyn has had three emergency room visits after she stopped breathing due to mucus plugs, one of which lead to a collapsed lung; she has had three extended hospital stays two at Cottage Hospital in Santa Barbara, and one at Stanford in Palo Alto, almost all in the ICU; and she has spent countless hours at doctors appointments. She is immune compromised and may not be able to recover from even a simple cold, so regular hand washing is vital. PLEASE DO NOT COME IF SICK or feeling the slightest bit sick we will gladly welcome you back when you are feeling better.

Here are some specific things we have learned are important for Gwendolyn:

1. FLAT POSITIONING. We know it goes against the norm, but Gwendolyn cannot tolerate being inclined -- even while eating or in respiratory distress. She must be flat or declined or she will plug.

2. REGULAR SUCTIONING. Gwendolyn needs suctioning after pretty much any movement and sometimes when just lying in the same spot. We have found that on a 10 French suctioning tube, we get the most mucus at about 7 depth. Please avoid deep suctioning. We also use the olive tip for her nose not the 10 French.

3. 94% OXIMETRY MEANS DISTRESS. Gwendolyn has no reserve energy and so at 94% she needs suctioning immediately and repositioning to her back. If her numbers do not immediately jump back up after suctioning, please wake us immediately.

4. HEARTRATE OF 180 MEANS DISTRESS. Her baseline heart rate is between 130 (when sleeping) and 140-160 (when awake) at 180 she is in distress.

5. BI-PAP. Gwendolyn relies on Bi-Pap to breathe. However, if something goes wrong with the machine or if the mask shifts and covers her nostrils it could suffocate her. If she is in distress and suctioning doesnt work, please check the mask take it off if necessary and please watch her nostrils when putting it back on.

6. THINGS HAPPEN FAST! When Gwendolyn has had episodes in the past she has first told us with fussing and a panicked look in her eyes, then her oximetry and heart rate, and then she just crashes. Please wake us at the earliest signs and begin suctioning until we get there.

That is Gwendolyn's disease. Now let us introduce you to our sweet daughter. Gwendolyn is very social and wants to be included. She will study you and listen to every word you say. SMA does not impact her mental ability at all only her muscles. She is paralyzed in her legs and body, but can feel everything (she loves having her toes tickled and massaged). She can grasp toys in her hands and bring toys to her mouth with assistance. She can turn her head slightly. Gwendolyn loves music and being sung to, both lullabies and interactive songs. Sometimes she will sing along! She loves touch and having her body exercised. Gwendolyn listens intently when read to and loves to touch the pictures. Gwendolyn loves falling asleep while having her bottom patted and sucking on her pacifier.

We hope you will have the chance to get to know our little girl, but we should warn you that you will probably fall in love with her ? And THANK YOU for helping us through this trying time for our family.

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