Back at Children’s

Faith & Hope, Parenting, Special needs children

We are back at Childrens Hospital. And we’ve been here since Friday night.

Here is what brought us back.

This past Monday, our family doctor did a throat culture in addition to blood work and an IV. Friday afternoon they got his results back from the culture.  Gideon has a bacterial infection called pseudomonas aeruginosa. And apparently, the only antibiotic that it’s not resistant to is an IV antibiotic called Fortaz. And it needed to be administered every 8 hours for four consecutive days.

Home health was going to come out to our house to do IV and the first dose…then we would have to dose him daily after that. But home health couldn’t come until Saturday; and since Gideon had not eaten since Friday morning, we went back in the ER so they could start the IV antibiotics and fluids to get him through the next four days.

Unfortunately Friday night Childrens did not start the IV antibiotics for the pseudomonas aeruginosa. Long story short, they wanted to do their own throat culture. (Which they could have done when we were here Tuesday but they said what he had was probably viral.) And apparently our family doctors results were not sufficient for them. Which meant more waiting for a new culture to grow.

In the meantime they started him on a stress dose of steroids for adrenal insufficiency… which have proven not helpful. He’s not perking up like he usually does. His appetite is not increasing like usual. He has been more irritable and fussy the past two days then he has been all week (and he had no continuous steroids when we were here Tuesday-Thursday).

We requested decreasing steroids overnight to see if that helps his irritability. All they want to do is give him more medication to compensate for the side effects of more medication. Our little guy hasn’t been on any meds for five years (except for a small time when we tried steroids and they did more harm than good…so we weaned him off).

Hopefully we will get culture results back today or tomorrow and we can either treat the bacterial infection or go home (if it is negative).

Kevin and I are discussing options for Gideon. Our next possible move could be a G-tube.

The staff here has been great, but we want to go home. Coming back to Childrens has been very disheartening. Not how I envisioned spending my Mother’s Day.

 

 

 

 

 

20 thoughts on “Back at Children’s”

  1. Sending all good thoughts of loving kindness to you and your family. Hope you can all be home together soon.

  2. I wondered the other day if g-tube was an option. Just to have just in case. Makes it so easy to give fluids and meds at home when intake isn’t sufficient.

    1. It would make things easier when he’s sick. We’ve just been fortunate (so far for his first 5 years of life) that he’s not had this problem before. Talking with staff about it tomorrow. 🙂

  3. Praying for precious Gideon!
    Lord, undertake for him, in Jesus’ name!

    We had to have the use of a G-tube for some time and it was what was needed at the time. Our fellow (11 years old, now) now eats by mouth but the g-tube was a life-saver when it was needed.

    Praying fervently for you all.
    Happy Mother’s Day to a fantastic mommy upheld by the Lord.
    You are an inspiration to so many.

    1. Thank you for your encouragement and your prayers. We are discussing options for it tomorrow. Blessings to you and yours!

  4. Poor little guy! How frustrating and chaotic!
    Happy Mother’s Day, fellow Mama. I hope you get the results soon. What if ER’s test says negative while his primary doctor’s say yes? Ugh!!!

  8. I am so sorry to find Gideon has had to go back to the hospital. My heart just aches for you guys. You all truly are amazingly beautiful strong and resilient family.
    While reading your blog and thinking of the endurance of strength I see from you & your family..an old song came to mind by Dr. D.L. Moody called “I am a soldier (in the army of God)”It’s message seems to strengthen the spirit. Its a sermon/message with music. Maybe 3min or so long. If you decide to check it out,It maybe a little loud, you might want to have volume lowered.
    Also just wanted to say I understand what you’re saying about the steroids and going through with the hospitals and all the medications they push and push. How wonderful that you are such an awesome parent and advocate for Gideon and are aware of and conscientious of the actual necessity of certain medications compared to what they will try to prescribe. Personally(unfortunately) the hardest thing for our family as far a having a special needs child is dealing with all the medical politics. We 💘 the Creator’s natural medicines, “they” don’t like it..it’s not what theyre taught in the AMA )My heart goes out to you and Gideon’s dad& family and especially Gideon.
    On this mother’s day, give the babes an extra squeeze.. & all be especially thankful for the gift of beautiful Gideon! 💪💘. My family and I are sending positive and loving thoughts and energy your way!

    1. Hi A. Rice!

      Thank you for your prayers and encouragement. Thanks also for sharing your story. It’s been hard having a son with special needs. I know the doctors mean well, but I feel like I’m constantly having to remind them that Gideon is terminal. I’ll give medicine if it will improve the quality of his life. But if we have to go down the slope of “well this medicine causes this, which needs this medicine… which will causes this, which means he’ll need this medicine…” I’m not on board with that because most of this medicines cause further harm to his already declining system.

      Blessings to you and yours!!

  9. Oh gosh I am so sorry to read this. It breaks my heart to think about your little guy being so miserable and to think about your disappointment. I am going to pray so very hard for things to improve quickly. Please do all you can to have a Happy Mothers Day knowing you are an outstanding Mama. Again, thank you for the updates and for allowing me to pray for you and your sweet family. God bless!

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