Saturday, March 31, 2007

Kaedra's story (so far)


This is the story of Kaedra, our miracle girl!
(I am just going to keep adding stuff to the bottom of this so it is somewhat updated, regularly)



While pregnant with Kaedra, we tested positive for Trisomy 18, a typically fatal genetic disorder. We opted for a second level ultrasound (rather than an amnio) so different parts of Kaedy could be measured and we could find out what we were dealing with. Thankfully, she showed no signs of Trisomy 18 or any other disorder. Later in the pregnancy, our doctor saw what he thought was a sac of fluid around her heart. We went back for another 2nd level ultrasound and the doctor did not find anything wrong, although she said she couldn't get a good view because "the ribs" were in the way.

Our doctor had scheduled an inducement 2 weeks before our due date on Nov 9th. I awoke just around midnight of Nov 5th with my water broken. I was so excited! My water has never broken naturally before. I showered and we got the girls in the car, my mother in law called to meet us and get the girls, and we headed to the hospital. The labor was uneventful and Kaedra was born.

They put Kaedy on my belly for approximately 10 seconds until they realized she was not breathing. From then on, everything went extremely fast. They whisked her from the room, intubated her and gave her xrays before I even knew what was going on. When born, she looked like she had a tumor on her left side, right underneath her armpit. It turned out that she was born without most of her ribs on the left side and the thing that looked like a tumor was actually her little lung poking out the side. She was also born with hemivertebrae. Here is her first picture.



Right after this picture, she was taken across town to another hospital. Michael went with her while I stayed in the hospital where I had birthed her, wondering what was going on.

We were told at first that she would not make it. I am not sure if they gave us a time limit on her life or not, but we refused to accept their diagnosis anyway. At 6 weeks she was given a trach, which broke my heart, but made her much easier to hold. At 3 months she was given a stomach tube and two tummy surgeries. She was diagnosed with Jarcho-Levin disease and accepted into a program in San Antonio, Texas called the Vertical Expandable Titanium Rib Project (aka VEPTR). We had to wait until she was at least 6 months old for her to be big enough for the smallest titanium rib. We had the surgery scheduled for when she was 7 months old but we couldn't get her on a portable vent so we had to reschedule for a later time. After a few more months, through the help of a GREAT RT named Aaron and a wonderful person from the manafacturer of the home vent who came all the way to Tulsa, we got her onto the portable vent.



We finally took her to San Antonio 9 months after her birth and had 2 titanium ribs implanted. They also took one rib from her right side and implanted it on her left side. They moved her large intestine back down where it was supposed to be (it had migrated up into the left lung area because her diaphragm was not attached) and they reattatched her diaphragm to the rib implanted from the right side. While there, we were told that she did NOT have Jarcho Levin. Her problems were not genetic in anyway just "a series of anomalies." Praise the Lord!! We had hoped to be in San Antonio for a week and ended up staying 28 days. When we got home, we went back to the hospital for about a week and she was FINALLY, after 10 months, allowed to come home!!! HALLELUJAH!



Once home, she made great strides in her development. She started walking and learned sign language. We started out with 24 hour nursing and have cut back to 12 hour nursing. She has had another surgery in San Antonio and a surgery in Kansas City. She will need to keep going back for rib expansion surgeries every 6 months until fully grown. Her last surgery she also had tubes put in her ears. What an incredible difference! She went from being able to speak about 5-6 words in November 06, to having a vocabulary of over 60 words in March 07.

Our greatest struggle right now is getting her to eat by mouth. She receives all of her food through her gtube at the moment, but we are working with a speech therapist to "teach" her to eat.

We are also working to get her off of her vent. She is now off of oxygen and off of her vent all day and 5 hours at night. We can't wait until she is off the vent completely! Other than her equipment, she is a totally normal, healthy toddler. She likes to get into everything, climb everything, make big messes and be the center of everyone's attention.

OKAY, that is all the medical stuff....the "natural" stuff. Now for the TRUTH.........


Kaedra is the Body of Christ. She is redeemed from the curse, because Jesus bore her sicknesses and carried her diseases in His own body. By His stripes she is healed. We forbid any sickness or disease to operate in her body. Every organ, every tissue, every bone functions and is formed in the perfection in which God created it to function.
(Gal 3:13, Matt 8:17, 1 Peter 2:24, 1 Cor 6:20) found in Prayers that Avail Much by Germaine Copeland

Please join us in agreeing with The Word that she is healed and that her healing is manifested. We are rejoicing that she will soon have no tubes, machines or surgeries.

This blog actually started while she was still in the hospital. You can see her story begin here.
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Update from 5/21/07





Explanation of the surgery: Kaedra has vertical expanding prosthetic titanium ribs. (aka VEPTR or titanium ribs) Here is an idea of what they look like:



(however Kaedra does not have as many natural ribs as the picture) She has two of the VEPTR devices (just like the pic). Approximately every six months she has to have them extended vertically so she can keep growing. She will grow in between 1-2cm this expansion and then she will also have some growing room until the next surgery. The surgery for the expansions is laproscopic and fairly quick. The longest part of the procedure has more to do with ventilating her, rather than working on the "ribs." She has to be switched to a different trach and put on their ventilator before they will begin the surgery. Every few years, they have to change out the VEPTR devices and put in a larger one (until she hits around 13 and her trunk is considered fully grown). Those surgeries are far more complicated and are much longer. The "expansions" are really fairly easy and relatively painless, from what we can tell. She usually does not stay on pain meds for more than 4 hours post op.

Another note:
Kaedra's Respiratory Therapist, Kent, came out the other day to give her a lung volume test. When he hooked the device up to her trach, the device would not pick up any breaths. (I could have told him that she barely uses her trach to breathe!) He said it would be "no problem" to decannulate her. (decannulate = get her trach out) HALLELUJAH! Another answered prayer. I believe that as soon as we can get her off of her vent 24 hours a day, we can take that trach out. HALLELUJAH! (I am REALLY excited! God is SOOO Good!! He's a mighty working God!) We are very close to getting her off of the vent 24 hours. She is ABLE to do it now (and has done it on occassion), however she might be tiring herself out a little while doing it. We are still weaning her off of the vent slowly to get her body used to it. Right now she is only on it 5 hours a night. If we do 1 hour a week, after giving her time to recover from surgery, we could have her off of it by the end of summer and decannulated by her birthday!

God has big plans for this little girl and the enemy will not rob her of them! I thank everyone for your prayers! God is working through them and Kaedra is the evidence of it all! HALLELUJAH! Thank you Almighty Father!


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update from May 08

Kaedra had a rough summer concerning her ribs. She had the expansion surgery but then one of the ribs broke through her skin. Although we attempted to treat it in the body, we eventually had to have it taken out. She was on IV meds most of the summer and was in the hospital the greater part of 3 months.

She had a good fall and most of winter. She graduated from speech therapy in November. She was also not accepted into therapy at the school level because they said she was "too normal." She was off of her oxygen on and off over the fall and winter. In January she got pneumonia and was hospitalized for a week. She went back on the vent while in the hospital and took awhile getting off of it. She finally came off of it completely in April. She is on a low amount of oxygen and doing great. She loves to go outside and play, ride a tricycle and play with bubbles. She talks incessantly. We go tomorrow (13th) to Kansas City to see if she is ready for an expansion. She hasn't had one in a year, so I am guessing yes.
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Update January 2009
Kaedra is doing fabulously! She is completely off oxygen and we are working on decannulating her (getting her trach out). We cap off her trach every day and let her get used to the feeling of completely breathing on her own. I think she will be able to be decannulated in the next few months. She is doing great! Developmentally she is completely normal for a 4 year old. She runs, skips, jumps, does dare-devil acts...all the things that drive mom and dad and sisters crazy! She is doing PK4 with me at home and loving it. She is still not eating by mouth but she does drink water throughout the day. That is a huge step! We are still believing that she is eating everything by mouth and able to get her g-tube out. We have a confession we say over her at our meals:

Kaedra knows that food created by God is good, and is not to be rejected. She eats and is satisfied. Kaedra is blessed because she eats. She eats her food with gladness and simplicity of heart. Hallelujah!
(taken from 1 Tim 4:4, Psalm 22:6, Luke 14:15, Acts 2:45)

We are constantly blessed by Kaedra. We are amazed that the doctors wanted us to "put her in a home" and said she would have "no quality of life." We were told she would never walk, talk, she would be a midget and there was no reason to prolong her suffering. Sometimes I want to take her and leave her on that doctor's doorstep, after a really long and typical 4 year old day of her running, jumping, yelling, testing every limit. He shouldn't mind, right? I mean, she is SOOO disabled! HA!


Fourth Birthday



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 Update October 2009:
Kaedra was decannulated (trach removed) in March of this year. She has done fabulously since then! No need for oxygen (although she has nasal cannulas if needed). We moved to Yukon in July and she has been on NO regular medications since then.  She has received albuterol/pulmicort when she had a cough, but not regularly.  Her hole from her trach never closed up and we are hoping to have it stitched up during her next expansion. Because of that, she was unable to swim this summer.  We can't wait until next summer when she plans on swimming all summer long! We are still working on her eating orally, but we know that she will do it when she is ready.  We have a blog we started to journal that journey.





Had to put together a history for a new dr. Here is Kaedy's history in short form:

Kaedra Lynn History

Born 11/06/04, weighed 7lbs. 13oz.


6 weeks: trach

3 months: fundo, pylorectomy and g-tube placed

9 months: two veptrs placed

        spent 28 days in hosp in San Antonio because of wound

                        not healing well

10 months: came home from hospital

May 2006: ribs expanded in San Antonio

July 2006: fifth's disease, regressed on eating, vent, O2

October 2006: came for eval in KC

November 2006: second expansion

February07: fell on tile floor and got 'owie'

May 21, 07: third expansion, did not expand rib under the arm because of 'owie'

May 31,07: took duoderm off of rib with 'owie' and skin peeled up

6/1/07 admitted into Children’s Mercy KCMO

June 2, 07: taken off of vent        

June 4, 07: surgery to clean up skin, elliptical shape cut out of skin, flushed

June 6, 07: picc line placed

June 13, 07: back to CMH/KC for follow-up, she had fever(from cold), admitted into hosp, blood culture, results back in 48 hrs. negative, *started not                          tolerating foods, released on 5th

June 20, 07: Carey: wound good, follow up in one week, add 2tbsp rice cereal to feedings

June 22, 07: Shannon: increace prevacid to 15mg/day

June 26, 07: Sharma: Changed her from penicillin to Merrem aka meropenom

June 27, 07: Rachel: put tegaderm on wound

June 29, 07: Rachel: decrease feeds to 30cc q 1/2hr

July 3, 07: Sharma-good, Carey: good

July 6, 07: high fever, blood culture (res. neg), back on O2

July 10, 07: blood on tegaderm, Sharma: good, prob bump, 6pm go to redress, can see titanium

July 11, 07: admit into CMH/KC

July 12, 07: surgery to take out one VEPTR

Nov, 07: cold, ended up on too much O2, eventually weaned down again

Jan 08: pneumonia, hospitalized for 10 days, back on ventilator, IV Meds

Sept 8, 08: VEPTR expansion in CMH/KC

Sept 08: began blocking trach for decannulation

Oct 08: Pneumonia, 7 day hospital stay, IV meds

March 21, 09: decannulated

May 15, 09: trip to KC, told no expansion until Feb-May 2010

July, 09: all medications discontinued (prn)

July, 09: feedings 1500 cc/day
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We are still thanking God everyday for her healing. She is a miracle through and through. We give God all the glory for her and her health! Hallelujah!!


4 comments:

jennifer said...

I think that Kaedra has one heck of a wonderful family, and her continued medical miracles are living testimony. I am so thankful that you are such a strong delightful, fun blogger, it makes me see that you are a half full type person. This is what all your family needs.
Praise God that you are sharing your family and the story of your faith!
Some day I will share my miracle baby, and her road to 11.

annie said...

I found you through Susan (penless writer), my daughter Izzy was a near drowning survivor and I love your truths that you listed. I agree with you and with the Word that she is healed and that her healing is manifested. I am also believing the same thing for my Izzy.
blessings
Annie

sara - The Estrogen Files said...

She is so gorgeous and a real keeper. I found you through Annie and Izzy's site. My prayers for her and you all.

randi---i have to say said...

I just read through Kaedra's story and I am blessed by your faithfulness and trust in God alone. Her smile is absolutely beautiful and a testament to God's joy in her heart! Thank you for being so open about her struggles and successes!