Reflections on Life’s Challenges – Kaet’s year in review

Our children go through this life facing things we would never have been able to imagine, yet they continue to grow and thrive defeating all odds. The longer they stay with us the more they teach us and allow us to grow with them. They are an inspiration even to the professionals that treat them.

As this year comes to a close I take this this moment to reflect on our experiences; some good, some bad; nonetheless all lessons in life.

Our year was filled with many challenges this year:

Challenge #1:  Very difficult choices to have Kaetlyn go through a hysterectomy. The procedure itself was uneventful. The surprise found during this procedure was that at the age of 15 and less than 6 months after she first began her journey into womanhood, she had developed endometriosis. This finding was actually a relief, we found a cause of what was bothering Kaet and causing her so much discomfort and a confirmation that our original choice to do this was the right one.

Challenge #2: A week into recovery from the hysterectomy, Kaet was faced with excess bleeding and pain; off we went to the ER; not finding anything evident, she was admitted to the hospital for further observations and diagnostics. Without the ability to communicate, the medical professionals are left with only the tools of their trade to go through the process of elimination. All proved negative to the source of her discomfort. A mystery to remain unsolved; Kaet improved progressively and was discharged to return to her “normal” routine.

Challenge #3: Just a week after the last challenge, we were faced with yet another… During a routine dental examination one of Kaet’s loose teeth had come out.  After watching her struggling for air and beginning to lose consciousness, she was intubated in the ER. The tooth was found to be lodged in her right Lung; she had aspirated the tooth!  After being stabilized and prepped, she was off to the ER to have the tooth removed from her lung through a procedure called bronchoscopy. Again, another challenge, another lesson…her dentist with 23 years’ experience in caring for children (including special needs) had never seen nor imagined that one could aspirate a tooth.  Kaet, true to herself bounced back from this ordeal seemingly unscathed…

Challenge #4: Two weeks after the aspiration episode, as Kaet had begun to return to her “norm” routine of school and after care camp, she began to have difficulties breathing and started to become cyanotic. Upon arriving at the ER, her body temperature was 107 degrees, she was on fire. Once her temperature was under control, she was transported to the children’s’ hospital in Fort Myers for Diagnostics and recovery. Again all the diagnostics done proved to find no explanation to the cause of the fever episode; we were again sent home a mystery to remain unsolved.

Challenge #5: Just a couple weeks after the 1st fever episode I received a call from Kaet’s school, she was again having difficulties and I needed to come pick her up…immediately upon arriving I told them to call 911 – she was having difficulites calming, breathing and was again beginning to turn cyanotic. This time upon arriving at the ER, her body temperature had elevated to 108 degrees…Kaet was stabilized and and the decision was made to have her transported to yet another children’s hospital, Joe DiMaggio on the east coast of FL that had more extensive experience with diagnosing and treating. For the 1st night she was in the ICU. Her fever remained under control and she was able to move to a regular room. This time she went through more extensive infectious disease testing to no avail. ECG, EEG, CT scans all proved negative. The palliative care Dr came in to talk to me about “quality of life” and my intentions for Kaet should a fatal emergency arise; WOW ! I was not ready for this discussion…I listened and reflected and spoke to a friend as well as my husband (as far as he would listen). I still to this day have not signed the paperwork of my intention, but I know if and when the time comes, I am at peace with my choice. The Dr’s at “Joe” could only come up with a “best guess” diagnosis of an “allergic reaction to her medication” …MAYBE…

After that episode we finally got a reprieve, Kaet remained well for 3 months – no Dr, ER, drama – wow it felt good to be back to normal…

Challenge #6: After a wonderful family road trip, Kaet developed “out of control” crying and screaming. We were off again to the ER…this time they found her insides full of air! – Medicated and finally home, we were able to reflect on what could have caused this; our best answer came to us in remembering the ride home from our trip. Kaet had extreme episodes of hiccups while we were driving. At the time, we never thought much of it, but now we realized those hiccups had trapped the air in her body and was causing her discomfort that she could only express through crying and screaming…Now we pay very close attention when she has the hiccups; luckily none of them have been that extreme again.

We again had a reprieve from the medical world for the remainder of the summer, but that did not last long…

Challenge #7: One week into the start of the school year, I received a call from the nurse at Kaet’s school…”she is having another episode” – I met the ambulance at the ER; again I was told her body temperature was 108 degrees. This really took me by surprise as it had been 4 ½ months since she had the last fever and we took her off the medication they suspected; how can this be again? …This time the Dr’s left the choice to me; I could stay local, go back to Fort Myers, or back to Joe DiMaggio (east coast). After a short contemplation, I decided that there was no need for Kaet to go through all those test/diagnostics again.  I would have her stay local and just go through the recovery process (takes about a week for her body to stabilize enough for discharge) at the hospital in Naples.

During this recovery process, the Dr. on staff as well as her pediatrician spoke to me about needing to prepare ourselves and have our intentions ready for emergency staff; OMG, again they were making me reflect on the inevitability that I most likely will be facing my daughters mortality someday…this time my talk was with Kaet; she knows that when she is too tired of all this that it is okay to “go home” and be whole with God.

Our highlight this year was an AWESOME celebration of life for Kaet’s Sweet Sixteen…She had come a long way and has defeated all odds; my girl is absolutely the strongest most, amazing young woman. I am so proud of her and all she has accomplished and all I know she will continue to do…challenging all who come into her life and teaching them that the only one who knows what is happening to her is she herself and God and He will, when it is His will allow us all to know and understand….until then my girl will remain a mystery.

As I write this, we are yet again on to another Challenge; trying to get to the “bottom” of Kaet’s ongoing GI issues, this is how we will complete this year and how our new year will begin…more tests and diagnostics.

This is my Angel’s story…  I know there are many of us special families facing challenges everyday…we must hang in there and reach out to each other in realizing we are not alone; we were chosen by God and our Angels to help them through this journey of life because they knows we can do it…

God Bless! 

May you all have a Healthy and Prosperous New Year!

Christine

3 Responses to Reflections on Life’s Challenges – Kaet’s year in review

  1. Tami says:

    My friend – you have more strength and courage than anyone I know. God Bless you and Kaet – you will have answers and peace this year.

    • Christine says:

      Thank you my friend for the kind words of encouragement; yes, I hope your confidence rings true that we find some answers this year…at the least, I am hopeful for a healthier 2013.

  2. Nancy Powers says:

    Christine,

    Beautiful as usual! <3

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