Monday, March 18, 2013

Kayli needs spine surgery

Kayli saw a pediatric spine surgeon today, to get an evaluation of her spinal conditions (Kypho-scoliosis).  The Surgeon stated Kayli has more than one spinal condition, and they are significantly affecting her health.  The following are her current curvatures and degrees:

Key: * = degree, T = Thoracic (middle) spine, L = Lumbar (lower) spine, S = Sacral (pelvic or Sacrum)

Kyphosis (outward hump in spine/hunchback look) and Lordosis (inward hump in spine)

1. T1-T9 =  -25*, +20* of Thoracic Lordosis at 45* Abn (this is secondary issue, caused by #2)

2. T9-L1 =  +85* (this is the most concerning issue and root of the primary curvatures)

3.  L1-S1 = -23*

This is a side view of Kayli's Kyphosis and Lordosis:  The pointed "hump" is #2 on the list above.  Above the point of the hump (going up to her neck) is #1 on the list above.

Scoliosis ( "c" shaped curvature from side to side of body)  Kayli has 2 Scoliosis curvatures.

4.  Scoliosis #1: The left curvature has a 54* at the T1-T12 that corrects at 40* when pulled straight

5.  Scoliosis #2: The right curvature has 68* at the T12-S1 that corrects at 40* when pulled straight

This picture shows her scoliosis pulled straight (a 40* correction).  Kayli's curvatures are much worse (than shown here) when she is sitting (with gravity).

The following I do not understand...yet! lol

PO is 20*,  Left HP is up, LL (lower lumbar?) is -52*, and TLF is 41*

The surgeon is recommending correction of her spinal within the next 3 months, because her spine is currently pliable and much easier to "fix".  It is not typical to be pliable/flexible with her complex conditions...Kayli is extraordinary (we know that! :-D).  Kayli's spine is rapidly and grossly worsening, so if Kayli does not get spine surgery soon, she will lose the opportune window of time and flexibility.  The following are options for Kayli, presented to me by the pediatric orthopedic surgeon:

Plan A: Do nothing.  Kayli will have a short life, shortened by the grossly abnormal cavity structure.

Plan B: Veptr titanium ribs.  Kayli would need good bone structure, with no underlying complex conditions.  Kayli's ribs are not only deformed (to compensate for the curvatures and crowded chest organs), but also appear to be very weak and fragile.  Her bones are so fragile, that the surgeon is referring Kayli to see a pediatric endocrinologist to further investigate a possible Osteomalacia or Osteopenia condition.  This plan is not a great choice for Kayli, because it would take time to correct the weak bone issue....and time is not on Kayli's side right now (she is fighting against time).

Plan C: Growing Rod Surgery.  Rods would be attached to the top and bottom of Kayli's spine (T2 and S1) and then lengthened over time.  Kayli would go back into the OR (operating room) every 4-6 months, to lengthen the rods.  Pro's = Spine is guided to grow in a proper formation.  Spine grows as Kayli does and makes proper room for Kayli's organs, which eliminates all current complications.  Con's = risk of infections, skin break downs, rods separating from spine, no bending in entire spine, under anesthesia every 4-6 months.

Plan D:  Definitive Fusion.  The surgeon fuses Kayli's entire spine to a rod.   Pro's = Most effective for  permanently stopping malformation of spine, less operations equally less risk of infections.  Con's = Kayli's spine will not be able to grow which means; when her organs and body grow there will not be enough cavity space and her lungs and heart will not have room to function.  This surgery puts a "cap" on Kayli's duration of life, but gives her immediate comfort and her organs a space to function for the near future.

We will be revisiting the surgeon in 3 weeks, with our decision for plan of care (POC), and the following results in hand; Endocrinology report, MRI (brain and spinal screening), and CT (occiput + pelvis levels).  We will also have an additional consult with one (or all) of 4 dr's that today's surgeon has recommended on getting additional opinions from (Dr. Betz in Philedelpha, Dr. Smith in Utah, Dr. Thompson in OH, and a dr at Shriner's...who has already called Kayli a Vegetable and refused to treat her).  Since we have already contacted a Dr. on the team at Rainbow Babies and Children's in OH...we hope to set up a conference call with that team, also including the Dr that today's surgeon recommended.

While driving home today, my mind was racing with the pro's and con's, of the decision we are to make of Kayli's care plan.  I asked God to give me guidance or a SIGN, and kept thinking..."what should we do?!!"  At a stop light, I turned to my left, and saw a man standing at the corner, holding a SIGN that said "Trust God". LOL  And that my folks...we shall do!  <3


  1. I would recommend you talk to Dr. Tony Nalda at the Scoliosis Reduction Center in Celebration, FL. He has had a lot of success in straightening curves without surgery! Surgery is so invasive. I don't know if he has worked on children so young but I was impressed with what he did for my 16 year old daughter. He is very good.

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