Another example of downtown street art from our recent Vegas trip.
Today was infusion day for my son. It didn't go as planned and I'm rather exhausted from it all. We decided to come back to my sister's house instead of making the journey home. I don't have the energy to explain all that went down so I've just copied from FB post:
Such a frustrating day... we're back at Children's Hospital for Entyvio infusion #3 (week 6). Upon check in we learn that Gage's weight is DOWN 1.0kg (2.2lbs) since he was last here 4 weeks ago - I want to scream!! His heart rate and blood pressure are also elevated (from dehydration) and although they could get the IV into the vein they couldn't get any blood out (so we wait for a lab person to come jab him manually) - again I want to scream! Instead, I sit in the corner with tears rolling down my cheeks uncontrollably for quite some time trying to distract myself in fear of totally losing it. I'm sad, frustrated, angry and mostly so fucking tired!!! When will this nightmare end! We're doing everything they say and still Gage is in pain and shrinking away. He can't play baseball and he hasn't been to school since mid November. He spends his days in bed or on the couch and doesn't want to see friends (thankfully he plays video games on line with them) or leave the house. After a long wait, Gage gets his 30 minute infusion of Entyvio plus an extra hour of saline fluids. We have a new plan and another drug added to the mix and he's under doctor's orders to eat and drink more (and he promises not to fight me)!! We have to call the doctors in two weeks. Depending on how he's doing then, we'll determine when he returns for the next infusion and see if this super slow acting drug is even working. Good news... my tears have dried up, Gage is feeling more hydrated and the sun is shining. I'm back in Colitis fighting mode - we will get through this!
I can't imagine how hard this is on your whole family. Yet, in spite of your struggles you are strong and brave. I really do pray that this treatment will do what it's supposed to do in the long run and that you'll all make it through with shining colors. Hang in there and know that there a many people who are rooting for you and praying for the best.
I know it is so hard for you to be part of this treatment but perhaps you could think that Gage won't feel so bad if his Mama is not suffering too! Inside you can be, but on the outside a happy confident smile might make him relax. Think about some silly jokes and share them while this is happening!
You are so good to get a good photo here!
My heart breaks as I read your post here. I hear your frustration and hurting for the sake of your son. I pray specifically that he will be able to eat more and gain weight. I also pray for you as his mom who is overwhelmed and taking on a lot of emotions and the weight of this situation. Take care of yourself and know there are a lot of prayers being lifted on your behalf.
I’m so sorry you’re all going through this. I know it can be both frustrating and exhausting. I hope you’re little one starts to recover with this new meds. Hang in there, mama.
I feel your frustration. I pray that Gage's new treatment will help him turn a positive corner. I'm glad you're back in fighting mode because dealing with the medical community can drain you as well. Take care.
My heart goes out to you. As a mother I cannot even begin to imagine what you must be going through. Wishing, hoping and praying that this nightmare will soon become more bearable and that the treatment will do the job.
Oh honey, my heart aches for you. What a rollercoaster of a day, no wonder you are tired inside and out. Glad it turned around for you at the end of the day. Sending you my warmest love and praying for you guys as I type. Photo is so apt, what a brilliant find!
I am so sorry you have to go through this. I can't even imagine what it is like to see your child suffering like that. I hope it will all get better for you from now on.
I feel sad for you reading your post. Such a frustrating and scary time for you all. I hope the drugs start to help and Gage is feeling better very soon.
Sending you virtual hugs across the ocean to help you deal with such a sad situation with your son. i can't begin to imagine how difficult it must be. keep up your positive attitude!
My heart goes out to you... I belong to an online group of caregivers .. We are older - taking care of parents or spouses. Even when we have completed our caregiving we stay because offering our experience and comfort. You have to take care of yourself - which means being able to vent your frustrations. I hope the loving 365 community offers some comfort.
This too will pass ... but I can only begin to imagine what you're going through. I hope something positive happens very soon - for you and for Gage. This is a fantastic image from LV!
I’m so sorry that he hasn’t been responding to treatment as hoped, but I pray this new drug is a new beginning for him. I’m not a mom but can only imagine the heartache in all of this. Praying for better days ahead!
So very sorry to hear all this , and my heart goes out to both you and Gage and indeed the family . May you have the strength to remain positive and hope that with this new added drug that things will improve in the near future . Take care of yourself and keep strong - the photo is so apt ! My thoughts and prayers are with you ! :)
Great photo to depict your frustration. I know the battles with dehydration and trying to find a vein for the infusion. I do pray the new drug will help. It also appears aGave has turned a corner promising not to fight you on eating and drinking more.
Bless you. Such a trying time and you feel helpless seeing your child suffer like this. I'm so glad you swore in your narrative - get the anger out. Now back to fighting mode. Fingers crossed there will be improvement very soon and you can start to put this whole terrible ordeal behind you all.
A few hours does make a tremendous difference, let's hope Gage continues to do OK & he starts to put weight on & thrive but it it must be be very disheartening!
Oh how sad to read that you have had to go through this. The tears must have done you good - I hope you have understanding friends around you. I pray that the eating and drinking go well.,
Oh Kim what a post...................no wonder you are so frustrated, poor Gage what a hard thing for a kid to go through! So happy to read things are starting to turn around..........wishing you and your family strength to carry on :)
Oh dear...and you are not alone..so many children and parents fighting challenging health issues. I guess we "read" art/street art always with the sum total of our life's experiences...and for you this piece of street art is particularly poignant at this moment. Hoping for the best..sending good wishes.
Please take all these comments coming your way to heart - every one of us is pulling for Gage - and you - and trying to send our strength to help things along. Do hope you feel it. You're so much stronger than you know. Prayers continuing.
It must be so very difficult being the mother of a chronically ill child. Sometimes you can't (and shouldn't) hold it in or it will eat you alive. I can see the mural being a reflection how you and your son must be feeling. Thoughts and prayers for comfort are being sent your way.
Great shot!
I honestly know how your feeling & I truly hope things work out well for your son.
Treatments and hospital stay are no fun,very frustrating and all that unknowing makes us want to tear our hair out.
Prayers. xx
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Your image here says it all - I can't even image what you are going through. Prayers for your son and your family - hang in there, things have to improve.
What a horrible ordeal, I do hope they get the mix right for Gage soon and that he starts to feel better and gain weight. Keep strong, we're all sending positive thoughts and hugs.
I am so sorry to read about this very frustrating time. I pray that your new plan brings positive results and that the sun keeps shining for you, Gage, and your entire family.
Belatedly, so sad to read this and learn that the tough times are still lingering. 😱. Lovely street art, but it’s hard to watch your kiddo suffer. Hoping for better days!!
March 23rd, 2018
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You are so good to get a good photo here!
I’m so sorry you’re all going through this. I know it can be both frustrating and exhausting. I hope you’re little one starts to recover with this new meds. Hang in there, mama.
Great artwork, very fitting.
Tonight I watched yet another programme on TV about Fecal Microbiota Transplantation it was very interesting.
It must be so heartbreaking for you all to see your son suffering. Sending big hugs. xx.
I honestly know how your feeling & I truly hope things work out well for your son.
Treatments and hospital stay are no fun,very frustrating and all that unknowing makes us want to tear our hair out.
Prayers. xx
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