My Angel at 108 Degrees

As a mom of a special child I am resigning myself to the fact that there may be some things that occur to our children that are beyond the scope of knowledge of the medical profession. A very difficult “pill” to swallow as we want to believe that they can find the source and “fix” or prevent these things from happening…

As I write this, we are on day 6 of hospitalization from yet another fever episode. Kaet, without warning started showing signs of an “episode” and the school staff called 911 and then me. The school nurse describes the episodes as turning cyanotic and grey/clammy skin color along with respiratory distress. By now (as this is the 3rd time this year), we know that means the fever is coming; the nurse checked right away and got a reading of 99 degrees, shortly before EMS arrived she attempted another reading and it was just above 100 degrees; by the time EMS arrived at the ER, she had skyrocketed to 108.1 degrees!! – yes AGAIN, my baby girl’s body was “cooking”.

In the ER they proceeded to get the fever down and control the vomiting that comes along with it (amazing in and of itself as she HAD a FUNDOPLICATION a couple years ago…(she should not be able to vomit). Sitting there I knew hospitalization was inevitable; the Dr, once she had Kaet stabilized gave me 3 options, go to Ft Myers- Healthpark, Ft Lauderdale – Joe DiMaggio, or stay here in Naples. The choice was pretty simple as the last two times we went to those hospitals respectively with no answers as to the cause of these episodes. We stayed here in Naples to be closer to home, family and our supportive friends. There was nothing the other hospitals could do that could not be accomplished here.

The treatment protocol did in fact mimic EXACTLY what they did elsewhere. Once in her room and settled she was started on IV solution which included sodium bicarbonate and other things to help her kidneys produce and flush themselves (her CK (muscle breakdown) numbers were through the roof again – bad for kidneys as were her ALT and AST (liver enzymes) – the kidneys and liver keep taking hits from these fevers. The liver isn’t too concerning as it repairs/regenerates itself fairly easily. The kidneys on the other hand once damaged do not…therein is the big concern and as such the course of the IV “cocktail”.

One Possible “answer” to these episodes has yet to be explored (we have been waiting 5 months now to see an endocrinologist) – with that appointment now around the corner, Kaet’s pediatrician contacted him to see of there was any testing that could be done now while she is hospitalized that would help him in the evaluation of the situation. The Pediatrician at the direction of the endocrinologist ordered a “cortisol challenge” test to see she is producing cortisol. They injected her with the hormone ACTH and drew blood 3 times, 15 minutes apart to evaluate. At this time I do not know the results of this and may not until the visit with the endocrinologist in 10 days. The doctor on staff said the results are in but did not offer to explain – she just asked me again when my appointment with the endocrinologist was…UGH – I can’t stand waiting…I guess the upside is that at least it is one less test to have done later.

Day 2 we attempted to resume her feedings. This did not go well at all – she lost her entire AM feeding and then some…Again, cause of concern to me as I am beginning to believe the surgery (fundoplication) has come undone. As her pediatrician put it, a discussion necessary for another time 🙁

Day 3 – Vitamin K injections were added – again no surprise here (same as previous episodes). – her CK and liver enzymes are coming down gradually now.

Day 4 – we sit and wait for blood levels to continue to drop to acceptable levels, feedings were resumed at 1/2 strength today; all went well 🙂

Day 5 – Thought we were going home today – not yet! – IV comes out – Catheter comes out and we get back to a home routine here while under medical supervision. All in all a great day 🙂

Now during all this, my looming concern is that Kaet seems to be unable to adequately clear (swallow) even her own saliva. She is now drooling profusely. At first I was chalking it up to the trauma, but this is definitely a NEW effect. My husband and I keep trying to give her some of her favorite treats (applesauce, pudding, yogurt) she may take a little of it and get it down, but for the most part, she holds her mouth open and the food just seeps out. It is breaking my heart to think that she has possibly sustained some additional brain damage…I know it is always possible during events of extreme fevers, but it still does not make it easier to actually see your child lose functions.

Even though the Dr thinks she may have lost this ability, I am still not giving up; she loves her treats and I know in my heart she is resilient enough to bounce back from this set back as well. The Dr is writing orders for OT and ST to evaluate and help treat this. My husband and I will also be working with her full force. There are few things in this world that make Kaet happy and having her treats is a big one. I will do EVERYTHING in my power to give her back that pleasure.

This part of the story is very emotional, but I feel the need to share (I know I can’t be the only one facing this dilemma): 

As each of these episodes happen, the doctors all have the same question for me…Have I thought/talked about advance directives with anyone. To this I reply yes, but even though I have the paper, I have yet to make the decision to sign it. The doctor at Joe DiMaggio signed it and gave it to me after our heart to heart to sign when I was ready…How can a parent make that decision? Kaet is my life, my world and I couldn’t imagine my life without her in it. That is the selfish answer…

The less selfish way to evaluate is to look at the quality of life our children have…how many of these episodes can her little body go through ? …how much more damage can occur? what will her quality of life be like with less ability? is it fair to her to let her continue to suffer through all this?

I try to discuss this with my husband, but I know it is tough for him too. It is not something very pleasant, but a necessary reality that needs to be decided BEFORE we face the emergent situation. The last thing I want is for me to have to make the decision myself and then be faced with the ridicule of “she/you let it happen” being thrown in my face for the remainder of my life.

Please God, I pray you give me the strength and the knowledge/acceptance to make the right decision when the time comes.

All I do know for sure is that my angel is here with me now and I will cherish every moment of every day I have with her. She is my Light, my Life!

 

5 Responses to My Angel at 108 Degrees

  1. URL says:

    … [Trackback]…

    […] Read More here: rileyssmile.com/my-angel-at-108-degrees/ […]…

  2. Eric says:

    With no further update here I can only hope your lives are more settled now and your daughter is on the mend.

  3. Nancy says:

    Christine, that was the most beautiful thing I have ever read by anyone. That just shows you are a very caring person who happens to love her daughter with every part of her being with no conditions.

    I’m so sorry that Kaety has to go through with all these episodes as well as you and the family with no results at the end. I don’t think any of us can truly feel the pain that you are going through but hopefully we can in our own way give you comfort.

    I can’t imagine having to make a decision as to Kaety’s life, but I’m sure that no one would ever hold any decision that you make against you. You have gone through so much in her short life that any decision that you do make would be for Kaety and her quality of life.

    You have been the strongest Mother with so much love for your child that I have ever seen. How many more people out there could do what you are doing and what you have done.

    God Bless You sweetie and if I can ever do anything, or just sit and listen please let me know. I’ll be here for as long as you need me.

    xoxoxoxox

  4. My heart aches for all of you! and I’m praying that Kaet will get better soon and continue back and surpass to where she was.

    You are stronger than you think, and as I have said to Stacie before about Riley – I will say to you, Kaet choose YOU to be her mother, her spirit knows that you are strong, loving and will make the appropriate decision if one is needed.

    The love you have for your daughter comes through in every word you wrote. Kaet is a strong girl too! and has many Angels by her side, she WILL get through this.

    Many hugs and blessings from across the miles, xo C. (HHL)

    • Christine says:

      HHL,

      Thank you so much for your beautiful words of encouragement…at times like this we need all the help we can get.
      In my heart I know her strength; she has always fought her way through her life and I know she will not give up now.

      Christine

Leave a Reply

Your email address will not be published. Required fields are marked *

Powered by WordPress | Rileys Smile