Tuesday, February 1, 2011

A Really Hard Day

Today has been a hard day. A really hard day. I don't know why but it seems like just when I've gotten it all together and feel like I have a little control over Evans' health, thinks get turned upside down.  Up until now I have been handling this hospitalization well, taking it in stride.  Today, that all changed. 

During this entire hospitalization I have been meeting with a multitude of doctors discussing Evans upcoming surgery.  I expressed to the doctors, more than once, my desire to get this done during this hospitalization.  I felt like we were all on the same page and moving in that direction.  We had to get clearance from many different doctors due to his recent respiratory infection.  I had the go ahead from our hospitalist, gastrointerologist, neurosurgeon, surgeon and pulmonalogist.  They were waiting to decide exactly when to do surgery until we had the swallow study done, which occurred this morning. 

Around 2:00 the hospitalist resident came in and told me as soon as we got the ok from the anesthesiologist the surgeons would give us a surgery time.  She came back an hour later and said that anesthesia got the ok, so the surgeon put us on his schedule....for February 9th.  I'm not sure what the rationale was behind that date.  I can't imagine that we are going to sit in the hospital for 7 more days when Evan is healthy and wait... Unfortunately, when I asked to speak with the surgeon, I was only able to talk with his resident.  I expressed my concerns/frustrations to her about waiting.  If we were to go home, Evan would return to daycare and which leads to more exposure to germs.  He could and probably would be in the same respiratory distress that he is now.  I explained that I have a young daughter at home who's live has been turned upside down and misses her mom and brother and to send us home for 7 days then admit us again for at least 3 days, really is a roller coaster for her.  I tried to reason with her about the financial aspect.  We are here, we will be responsible for our $500 copay and if we come back in 7 days, I will be required to pay an additional $500 copay.  Her response to me was that I could keep talking, but there was nothing she could do, there was absolutely no open time in any of the operating rooms until then. 

The next few hours were very emotional, angering, and inappropriate.  The hospitalist resident came and sat with me and made phone calls and fought for what she felt was the right thing to do, to get this surgery done now and not later.  She was yelled at by the surgeon, and continued to stand up for herself and for Evan.  When the door was shut she sat down and shed tears with me because she felt like she should be able to do more, but felt she was powerless because she is just a resident.  She is going to be an AMAZING doctor.

After all this I was informed at 9:00 pm that surgery is tomorrow at 7:30 am.  I will be alone because Jeff has to get Lauren to school and with this short of notice it's too late to make any arrangement.  I will send him into surgery hoping  that I am making the right decision.,  I fear that if we don't do this, he will get another cold, aspirate and we could end up right back in this situation.  That terrifies me.  This time we were lucky and I got him to the doctor in time.  What if I miss the signs the next time and it's too late.  Being a parent is so hard.  Being a parent of a sick child is even harder.  You have to advocate for your child when they have no voice.  I will always fight for my kids. 

I need prayers for strength for me and even more prayers that Evan will do well in surgery and he will finally start to heal. 

Tomorrow has to be a better day...


  1. It will be a better day!!
    I'm sorry this is so hard. We REALLY struggled with our experience at that hospital... too many snotty people who need to get a swift kick in their egos! Too bad too because there are also a lot of great people there. It's really a shame when you have to fight and advocate SO VERY HARD... it seems wrong on so many levels. Praying all goes smoothly and you can get back home and reunite the family again SOON!!

  2. You will both be in my thoughts and prayers. I am thankful that they bumped up the surgery, but wow, that's a lot of junk to make you go through first! Please keep usupdated!

  3. Keep your chin up. You are doing a great job. Good luck tomorrow..we will be praying for you.

  4. Oh Lisa, my heart aches for you right now. I am happy to hear that they are moving forward with the surgery in the morning - it's for the best. I know you feel alone without your husband there but please know there are SO MANY of us praying for you and Evan. We are there with you and I hope you are able to feel it, at least a little tomorrow.

    You are doing an AWESOME job. Keep it up and know that very soon you will be home snuggling both your little ones. Stay strong momma!

  5. You fought hard for what you feel is the right thing! Evan will do great! It is infuriating how the doctors don't consider the whole person, just the piece they want to operate on.
    Thinking about your family!!

  6. Oops, just saw this. Hoping his surgery went really well!
    Thinking of you guys.
    It is so hard when you feel your child isn't getting the care they need, at least you had someone who would listen to you.
    You are doing fantastic (don't forget that) and I hope tomorrow will be a better day!

  7. Lisa,

    I just discovered this...I didn't know you had a blog! My heart aches for you....the dilemma you faced is so real and raw and we can only do the best we can do!! You're an awesome mom and amazing advocate for your sweet boy! I need to go to FB next to see what update there might be on you two. Hang in there dear!! You're gonna get through this....

    Cheryl V. - Cassidy's mom