Tuesday, August 11, 2009

Bang Head Against Wall

The sound of the air conditioning fills the room. Alarms and announcements that visiting hours are over break the sound of the electric blow. The vision of home fills my head. My pillow, my bed. It is like watching a faucet drip while someone drives a nail into your back. Slowly the medicine drips. (Ok I will stop the dramatic novel talk). Thank God for my husband who drove up to hospital to give me a break. Gary is not tolerating his IVIG treatment very well. His blood pressure has been going up and down. I can tell he does not feel good. He wants me to lay on his bed for comfort. Then he wants to pound me over my head with his toy. Then he wants me to get out of the bed, oh wait, no back in. All day. Poor baby. Too think he has been laying there all day as well. The swallow study went OK. JUST OK. Grrrrrrrrr. He went from a moderate problem of not being able to clear his food, to a mild problem. The coordination of his swallowing muscles have improved so he is having no nasal regurgitation. We knew that because he was cleared to drink water. It appears there is a little lagging in the esophagus. The fun part about this is the radiologists. Of course you want to know what they think. What I have to remember is they don't know Gary or what his disease is. The radiologist talked about putting a G-tube in. That would mean surgery for direct access to his stomach. She said that she thinks that the NG tube is contributing to the difficulty to clear. So let's take it out right?! Yeah, I wish things were that simple at a hospital. Nothing ever is. I seriously was willing to take the NG tube out right then and there and do the test again. But obviously that is not realistic. I could though. The official report has not come back yet. I talked to the doctor this morning and she asked how it went. I told her. I told her about the talk of the G tube. I shared that they were lucky that I have been blessed with high maternal intelligence so I "psssshhhhhhhhh" it out of my head. Dismissed it has the words rolled off the radiologists tongue. Appreciate the idea but no. No way will I let them put a G tube in. The doctor said she will call me at home about whether or not the NG tube stays or not. I am not sure what they will say at this point.

Our new neighbor is a cute little Hispanic boy whose blood count is off. They think he has leukemia or a virus. Not that I want him to have leukemia but a virus????? Hello, why are we in with a patient who has a suspected virus. Third person: She bangs her head against wall.

I won't moan and complain about the nurses and how things have gone once again this time. Our poor nurse seemed like she didn't want to be there today. I ended up setting up his formula and giving him his medication. And we sat and sat. I know I said I wasn't going to complain but I did, so there. But the new nurse we have is great. I really enjoyed her today. She has been in every 15 minutes taking vitals. Our morning nurse I didn't see very much. I had a feeling she didn 't have the time to do our IVIG therapy so we won't leave tonight till close to midnight. I told them that if we get past midnight I didn't want to have to take Gary out to the parking garage in the cold rain by myself to drive home. My hubby has to leave at 9 because we didn't get very much sleep last night. I didn't get to shower today because we didn't have our own bathroom. I didn't even feel comfortable using the room's bathroom because I had to walk across the other patients space. Wine or Whine I mean. Breaks over.

Levels stayed the same this week so we will be back next week. Think I will play dead when they try to set the appointment up.


  1. I'm so thankful for the okay to drink water!!!! AMEN! I'm also thankful that you had an afternoon nurse who has the passion for nursing in her belly. Amen that she came in frequently :) I'll be praying for the NG to stay out.
    Tell Gary we love him and that Cam has taken a very special interest in praying for his little buddy. My sensitive boy who I love, cries along with me while we keep track of your blog. I wondered if I should have shared Gary's diagnoses with him and his progress, I chose to share this news with him. Having another child praying over the other is a beautiful blessing that I feel the Lord would charish from His child....Strength in numbers right? I love you my friend...always!

  2. Thanks Michelle. You are so sweet. Tell Cameron that God has Gary in the palm of His hand and he will be ok. The NG tube did not come out :(...but that just means he is not ready and that is ok. Tell Cameron that his prayers over Gary mean more than I can explain to him. Cameron joins many precious kids that are also praying for him. Glorious. You are wonderful.