Finally at 5:30pm this evening the GI resident doctor came to see me. She explained that the GI team was half way through re-viewing Logan's barium x-ray results, then basically it was time to close it up for the day and go home. Say what? I asked her what happened to Dr. Zachos - I thought she was coming to explain the results to me today. That is what I was told. The GI resident just said yes I know, I'm sorry, blah, blah, blah and every other excuse under the sun. By this point I was so frustrated, crying and as she was ready to leave with no answers I gave her a piece of my mind (in a kind, yet firm way!) I just explained that I'm sick of it. Since we were admitted almost a full month ago everytime Logan has a procedure done they tell me in the morning that someone will be by to explain it to us, and that never happens. Sometimes we've even had a couple days go by before someone tells us the results! This is getting a little bit ridiculous, and if they aren't going tell us the same day, why do they keep saying they will and getting our hopes up high?? I should know better by now then to believe we will actually get answers on the same day that ultra sounds, x-rays or bloodwork is done on, but I still hold on to a bit of hope each time that maybe this time they will actually explain everything before the end of the day. I also explained how I am frustrated that Logan has had bloodwork 6 or 7 times and everytime I inquire as to why he is having bloodwork & what they are testing for, I never get straight up answers. They always just tell me it comes back fine but never tell me what they are testing for. We are sick of just letting the doctors do tests that we don't even know what they are testing for! My mama bear insticts are kicking in strong in the last couple of days, mainly because I'm so sick of never getting the straight up truth around here and not being kept in the loop with all these doctors as to what's going on with Logan and our plan of action. The resident doctors we do see are so vague with their answers, so I feel like we don't even know anymore what they've tested for and what hasn't been tested for.
Thankfully after the GI resident left the room, our nurse Heather told me straight up that you can't always believe what they say. If they say they'll be in to give us answers by the end of the day, count on 24 hrs before they actually do come to talk to us. She also said if we have any questions, to seriously just ask our nurses! They are in the loop and have our chart, so they will be able to help us quite easily. Lastly she told me she's been working here long enough to see that parents need to push. Push the doctors to run more tests, push them for answers and push them to do all that they can for your child. They see so many children in one day that, as harsh as it sounds, we are just another patient to them. She says we need to remind them everyday that we are still here, we are a priority and keep asking what we are doing next to keep a coarse of action going. Heather also reminded me, as have many othe people, that we are Logan's advocate. We need to voice our opinions on behalf of him and make sure the doctors are doing all that they can to help him. We are not here to make friends. We are here to get to the bottom of what is causing Logan to have failure to thrive.
This is not the way I wanted to end our day. I was emotionally exhausted and just frustrated that we still have no answers. Maybe with some much needed sleep and a new day tomorrow, we will get somewhere. I am so thankful that Adam has taken the day off of work to stay with me while Logan is put out for his scope. We pray that the Lord will guide the doctors as they perform the scope on Logan tomorrow and we also continue to pray fervently for answers. Even if we may not receive the asnwers that we ask for, it would just be nice to know what is wrong with Logan so we know where to go from here, what to do for him and to finally see a light at the end of the tunnel.
I'm sorry that I didn't have great news to share, I was really hoping I would have had some! For now I need to try to get some rest. We have another long day ahead of us tomorrow. Please pray that the Lord will guide the anaesthesiologist & the doctors as they perform the scope, pray for strength & patience for Adam & I as we wait around for Logan to wake up again & as we wait for the answers to all these tests.
"Be of good courage, and He shall strengthen your heart, all you hope in the LORD." Psalm 31:24
How discouraging Jenn! I want to drop everything I'm doing and run over to give you a hug!! Since that's not possible I will say, we love you so much and are praying often! When you feel like your strength is sapped remember that your Lord carries not only Logan, but you too!! He does not sit by and see your tears, He feels your sorrow too! "Yet this I call to mind and therefore I have hope! Because of the LORDS great love, we are not consumed, for His compassions never fail! They are new every morning!" Lamentations 3:21-23
ReplyDeleteMuch Love: Kathleen
Jenn,
ReplyDeleteI have spent the morning reading Logan's story. It's like we had the same baby 4 months apart! It's crazy. I know that getting time to write, is difficult for me, with Oliver being very high needs and waiting for Dr.'s, tests etc. I totally agree with everything the nurses said and I too, yesterday, LOST it in a kind way at the nurses. Today, I am on a mission, as they are gearing up for discharge, but we still don't have answers. Since time to write, is so few and far between, I would love to get you my cell to have a chat (and I hate the phone, so that says a lot :) ), but would rather do that safely. I sent you an email, so feel free to reply, if you're up for a phone chat and maybe we can troubleshoot something together, that neither of us have thought of. Your "Sick Kids" Mom, who's right there with you,
Lee-Anne
Still reading your journey & praying that you get some answers soon! Logan certainly is a handsome little guy :)
ReplyDeleteHi Jenn, you probably don't know me. I am a friend of Teresa's, and a cousin to AnnaMarie Wassanaar. I heard about your little boy and wanted to share with you the story of my cousins' little boy who had the same story. He was diagnosed with FPIES. Food protein induced enterocolits syndrome. I know it has been an extremely difficult journey for them, but now knowing what he has and what foods he can eat has given them some hope. Check out FPIES canada. I could send you more of her info if you are interested.
ReplyDeleteJanelle Dekker