Georgia Medical Care Foundation
TEFRA/Katie Beckett Review Nurse
PO Box
105406
Atlanta, GA 30348
To Whom It May Concern:
I am writing this letter in support of Joshua Folden’s renewal
application for the Katie Beckett Deeming Waiver. Joshua’s application has been denied because
the criteria for Nursing Facility Level of Care (LOC) has supposedly not been
met.
Joshua most definitely requires and receives daily skilled nursing
and/or rehabilitation care. It just so
happens that I, his mother, am the trained professional providing his care on a
daily basis. If I were not willing, not
properly trained, or physically incapable of providing Joshua’s daily medical
care due to illness or injury, he would require immediate placement in a
nursing facility or multiple visits from a skilled nurse per day.
Following Joshua’s birth in July 2012, I lived in the Children’s
Healthcare of Atlanta (CHOA) NICU with Joshua for 18 weeks,
working side by side with his team of nurses learning how to provide care for
his various conditions. I learned CHOA
protocol for maintaining his Central Venous Line (CVL) including changing the
sterile dressing, changing the end cap, performing a Heparin lock, performing
an Ethanol lock, and emergency procedures in case of a line breakage. I learned how to prepare Joshua’s IV fluids
and connect/disconnect him from the fluids following CHOA protocol. I learned how to inject the proper additives,
operate and troubleshoot the pumps, and set up and prime the tubing. I learned how to administer his many
medications, prepare his specialty allergen-free diet, and interpret the signs
of diarrhea, malabsorption, and dehydration.
I learned how to speak the language of the hospital, navigate the
different departments, and push doctors for more information. And I continue to use these learned skills at
home to care for Joshua’s chronic medical condition 24 hours a day, 7 days a week.
Joshua’s daily care can be broken down into the following
categories: TPN & Lipid preparation,
Connect/Disconnect CVL including Heparin Lock, Sterile Dressing& End Cap
Management, Ethanol Lock Administration, Medicine Preparation &
Administration, Allergen-free Food Preparation, Diapering & Skin Care,
Supply Management & Storage. Each
section will be explored in more detail with notations for tasks that are performed
by a skilled nurse in a hospital or nursing facility setting.
*TPN
& Lipid Preparation
On a daily basis, all necessary supplies are
gathered and the work surface thoroughly cleaned. Following standard CHOA protocol, including
being gloved and masked, I inject three medications (Infuvite, Addamel, &
Ranitidine) into Joshua’s TPN bag after thorough cleaning of the injection
port, connect four sets of tubing, spike both bags of TPN and lipids, and prime
tubing to remove all air bubbles from the line.
*In a hospital or nursing facility setting, this task is performed by a
skilled nurse.
*Connect/Disconnect CVL
Joshua requires connection and disconnection
from his IV fluids on a daily basis. The
pumps are turned off and all lines are clamped.
Following standard CHOA protocol, including being gloved and masked, the
CVL end cap is thoroughly cleaned. For
disconnection, 2 mL of saline are flushed through the line, then a Heparin Lock
is performed to prevent clotting in the line.
For connection, an empty syringe is used to draw back until blood is
returned, then 2 mL of saline are flushed through the line, and the IV line is
connected. The TPN and lipids pumps are
turned on, the programs started, and all lines are unclamped. Extremely special care now has to be taken
when handling and supervising Joshua to guard against line breaks which can
lead to Central Line-Associated Bloodstream Infections (CLABSI’s) known to be
life-limiting, which can lead to sepsis, coma, shock, embolism, endocarditis,
losing catheter access for life-sustenance, up to and including death.
*In a hospital or nursing facility setting, these tasks are performed
by a skilled nurse.
*Sterile Dressing &
End Cap Management
Joshua’s CVL must be clean and free of bacteria and protected by a
sterile dressing and Biopatch. The
dressing and Biopatch must be changed at least once per week and more often in
cases when the integrity of the dressing has been compromised. Following standard CHOA protocol, including
sterile technique, I perform the dressing change in times of need. Although our home nurse performs this task on
a routine basis, I have been required to change the dressing myself when the
dressing has come off inadvertently and during inclement weather when the nurse
is unable to travel. In addition to the
dressing, the CVL end cap also must be changed on a weekly basis or more often
in the case of soiling (this happens frequently since the end cap naturally
falls around the top of the diaper area).
Improper cleaning and maintenance of the CVL end cap can lead to
potentially life-threatening Central Line-Associated Bloodstream Infections
(CLABSI).
*In a hospital or nursing facility setting, these tasks are performed
by a skilled nurse.
*Ethanol Lock
Administration
Twice a week Joshua requires an Ethanol lock in the CVL to help
prevent potentially life-threatening Central Line-Associated Bloodstream
Infections (CLABSI). Following standard
CHOA protocol, the CVL end cap is thoroughly cleaned, blood return is
confirmed, 2 mL of saline are flushed through the line, then 1 mL of 45%
Ethanol solution is allowed to dwell in the line for 4 hours. Following this 4 hour period, the Ethanol must
be withdrawn from (not flushed into) the CVL and a Heparin lock performed.
*In a hospital or nursing facility setting, these tasks are performed
by a skilled nurse.
*Medication Ordering,
Preparation, & Administration
Joshua’s medication schedule requires multiple medicines a day on a
rotating weekly schedule that must be carefully followed. Care and planning must go into obtaining the
right compounded formulation of his medications with no excess sugars,
artificial sweeteners, and dyes due to his GI system’s sensitivities. Joshua receives medications throughout the
day and night which must be specially prepared and administered. His medication schedule is as follows:
Loperamide, 1 mg, 4x a day: to combat chronic diarrhea caused by Short
Bowel Syndrome; capsule is twisted apart releasing 2 mg of Loperamide powder,
this is suspended in 2 mL of water and 1 mL is placed in his bottles of
Pediasure Peptide at 9 am, 3 pm, 9 pm, & 3 am.
Simethicone, 0.6 mL, 3x a day:
to help with gas and cramping, administered in bottles
Metronidazole, 85 mg, 3x a
day on Days 1-7 and 14-21 of each month:
to treat ongoing Small Bowel Bacterial Overgrowth (SBBO) caused by loss
of the Ileocecal Valve. 1.6 mL of
specially compounded Metronidazole suspension is administered by mouth. Medication
requires cold storage.
Nystatin, 100,000 units/mL,
2.5 mL, 4x a day on Days 8-14 of each month: to treat yeast and fungus overgrowth often
caused by long term antibiotic use.
Lactobacillus GG, 1.5 billion
cells, once a day on Days 21-28 of each month:
to reintroduce healthy bacteria to the gut after extensive
antibiotic use
Ranitidine, 20.8 mg/0.83 mL
syringe, injected into TPN once per day: to treat acid reflux
Infuvite, 5 mL syringe, add
contents of 1 mL syringe to 4 mL syringe then inject combination into TPN once
per day: vitamins
Addamel N, 1.6 mL syringe,
injected into TPN once per day: trace elements
*In a hospital or nursing facility setting, these tasks are performed
by a skilled nurse.
Allergen-Free Food
Preparation
Joshua requires a special hypoallergenic diet due to food allergies
and sensitivities. His current formula
regimen includes 7 three ounce bottles per day of Pediasure Peptide 1.0 at12
am, 3 am, 9 am, 12 pm, 3 pm, 6 pm, and 9 pm.
He receives a ratio of 2/3 Unflavored and 1/3 Vanilla flavored Pediasure
Peptide to limit excess sugar. Pediasure
Peptide is a specialty formula that must be custom ordered and costs between
$6-9 per bottle. Pediasure Peptide
requires cold storage after opening and use within 48 hours. Joshua also eats limited solid foods. Special care must be taken to offer only the
foods which his nutritionist has approved.
Joshua has been diagnosed with a dairy allergy and wheat
sensitivity. He is also not allowed
nuts, soy, eggs, shellfish, most fruits (except bananas), beans, and anything
with excess sugar. Failure to follow
these guidelines could result in a serious allergic reaction including bloody
stools. Joshua’s food and formula intake
must be closely monitored and immediately adjusted in the event of diarrhea,
vomiting, or other symptom of GI distress.
If left untreated, excess diarrhea and vomiting will lead to dehydration
and potential acidosis requiring an extended hospital stay.
Diapering & Skin Care
Short Bowel Syndrome results in an excessive number of stools per
day, for Joshua this can be as many as 14-16 stools per day in times of
illness. These stools are usually loose
or even watery in consistency and can quickly cause serious diaper rash that
affect skin patency and increase risk of infection. Swift diaper changing and a strict skin care
regimen, including a specially ordered hospital-strength diaper cream, are
adhered to throughout the day and night to protect the integrity of Joshua’s
skin. Loose stools often escape from the
diaper and can expose the CVL to bacterial contamination potentially leading to
Central Line-Associated Bloodstream Infections (CLABSI’s). Excessive cleaning of surfaces, clothing, and
anything else the CVL comes in contact with is necessary to help prevent potentially life-threatening
infection.
*Supply Management &
Storage
Treating Joshua’s condition from home requires a significant amount
of equipment and supplies. I must be
ever vigilant in planning, ordering, storing, and maintaining Joshua’s medical
equipment. The TPN & Lipids pumps
and chargers must be routinely calibrated and verified. The pumps must be charged on a daily basis to
insure they are ready to use each night.
The TPN, lipids, Zantac, and Infuvite require cold storage, but also
must be allowed to reach room temperature before infusion to prevent
significant cooling of Joshua’s core body temperature. I must always have enough gloves, masks,
alcohol wipes, saline syringes, heparin syringes, empty syringes, three
different types of tubing, needles, and dressing change supplies. A sharps container must be maintained and
hazardous materials properly disposed of.
*In a hospital or nursing facility setting, these tasks are performed
by a skilled nurse.
Emergency CVL Procedures
CVL’s are prone to breakage and the formation of small holes at
junctures in the line. Line breaks and
holes in the line have serious consequences.
A line break must be immediately clamped to prevent blood loss and
minimize exposure to harmful bacteria that cause CLABSI’s. Failure to clamp off the line can lead to
potentially life-threatening excessive blood loss. Holes in the line form slowly and can be
difficult to identify until an infusion is running which leads to fluid and
blood loss until the hole is discovered and the line clamped. Joshua has had two holes form in the
line. One was discovered when our home
health nurse flushed the line during a lab draw. The other hole formed in the middle of the
night and I found Joshua lying in a pool of blood and fluids during a routine
nightly check. Joshua has had his CVL’s break
three times. Each time I have had to rip
his clothes off and pinch the line off with my fingernails to prevent blood
spurting out while I located the regular line clamp or a pair of hemostats. Every time this happens requires an ER visit,
placement of a peripheral IV while the CVL is being repaired, and close
monitoring at home for development of a CLABSI in the two weeks after a line
break. Joshua must be supervised at all
times by an individual trained in emergency CVL procedures. A CVL can become compromised at any time of
the day or night. My nightly routine
includes checking on Joshua every 1-2 hours at minimum for confirmation the CVL is
infusing properly. I am also always on
alert for pump alarms to clear air bubbles from the line in the middle of the
night. Since Joshua may require
emergency attention anywhere we go, an emergency kit that includes hemostats,
alcohol wipes, an end cap, saline syringes, heparin, gloves, masks, and a
dressing change kit is always packed with us.
After reading about Joshua’s daily care regimen, surely anyone can
agree he requires daily skilled nursing care.
How fortunate that he has a mother concerned and capable enough to
provide the around the clock care and supervision Joshua requires. I have been at the bedside every day and
night he has spent in the hospital, have attended every GI clinic, every
Developmental Progress clinic, every pediatrician’s appointment, every nurse’s
visit, every Physical Therapy, Occupational Therapy, Speech Therapy and Music
Therapy session. There is no one better
equipped to provide the continuity of care Joshua’s chronic GI condition and
developmental delays necessitate.
Please allow me the opportunity to continue caring for my son in the
way he deserves by renewing his application for the Katie Beckett Deeming
Waiver as soon as possible.
Sincerely,
Kristi L. Folden
