So Frustrated I Could Scream!

Well I am pretty upset right now to say the least. The doctor just came in to speak to me and there is talk of A going home!!!!!!!!!!!!!!!!!!! They say he is stable. Stable?!?! Dropping oxygen saturations to the 30s, 40s, 50s etc 223 times in 6 hours is stable?! The answer…he does this at home!!! I just don’t know what to do anymore. This is absolutely crazy. I told the doctor this the other day when he said he wanted to admit him. I said that nothing would be done. And it seems that I am yet again right. I just don’t understand. I am angry, hurt and frustrated.

To top it all off A has a fever so they did blood cultures and a swab for RSV. Yes, RSV. The floor he is on contains tons of sick kids with RSV and rotovirus. I’m so flippin mad!

Is there ANYONE out there that will EVER help my little man?

11 responses

  1. The Walsh's

    Is there any way of just refusing to go until you get some answers?

    January 11, 2008 at 6:25 pm

  2. The Preemie Experiment

    Shannon, have they given you any ideas as to what is causing him to desat? What tests have they done? (EEG, lung function, sleep study, ph probe, MRI, etc)What have the docs told you that you should do when this happens at home? (o2, call 911, position change, etc)Stacy

    January 11, 2008 at 6:27 pm

  3. Melissa

    Oh Shannon. I was so hoping this would turn out differently. All I can say is stand your ground (which I know you will) and tell them your not leaving until something is done. I mean you are his Mom and you know him best and YOU KNOW that something is causing these episodes. Thinking of you. Hugs to Ashton. Stay strong!!!

    January 11, 2008 at 6:34 pm

  4. Emily

    Keep pushing, Shannon! I will be praying that someone will finally start listening.

    January 11, 2008 at 7:48 pm

  5. Kathryn

    Shanon, I know it’s not related to this, but I was talking with a close friend about Ashton and his ‘spells’. She said her daughter had spells like that and they were seizures. They thought they were airway issues until they did a VNS implant and they went away totally. Anyway, I just wanted to let you know that while it was on my mind.

    January 11, 2008 at 7:54 pm

  6. BusyLizzyMom

    It always happens like that. You get so excited that someone will help and then you get slammed. I don’t know what to say to help. I have worked with a family who had said that the will leave the hospital and leave their child there with them because they want answers. Things were done but it was an extreme measure.I know you hate hearing that Ashton’s spells are seizures but what if they were seizures but there is something underlying that makes him desat so much more ie)floppy airway as well or poor lungs.We are thinking of you. It sucks that it has to be so difficult for you to get help and answers.

    January 11, 2008 at 8:14 pm

  7. The Hull Munchkins

    Oh Shannon… I feel your frustration! I would be in tears.Someone needs to take responsibility for this precious child (doctors I mean)!!Good grief. Maybe if he has rsv they will keep him and see him desat even more there in the hospital. Gee, do you have to konk them over the head with a problem before they do something?!I’m praying for you and Ashton.-Patty

    January 11, 2008 at 9:49 pm

  8. Vickie

    I can’t believe they consider him stable with those desats! Did they do any tests while he was there other than the cultures? If his sats are constantly dropping this poor guys little heart is working overtime. I’m not sure if your home or still in Toronto, but I’ll touch base with you soon.

    January 12, 2008 at 12:27 am

  9. Mal

    What a turnaround in 24 hours from worried Doctors to OK so you can go home now! Wow no wonder you are so frustrated! Hopefully with your determination they can get to the bottom of this once and for all. My thoughts are with you all.

    January 12, 2008 at 1:27 am

  10. Aidan's mom

    This is bordering on the ridiculous with these doctors. You are Canadian right? Can you hire an attorney to help you? Or maybe see if one is willing to help you pro bono?I would be so mad I would plant my feet and refuse to leave too!

    January 12, 2008 at 4:22 am

  11. baby james

    Oh Shannon I just logged on to your post and my mouth dropped. OMG I am so sorry. You just keep being the strong, persistant mom that you are and eventually you will come across that person to help Ashton. Your strength will prevale.tarcy

    January 12, 2008 at 11:58 pm

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