Maybe sleep puts things in a better light, but I am not nearly as happy about Alex's current state. He has been in a great deal of pain and the only reason he went to the potty (he was carried by Dad) was because the catheter and lack of underwear upset him terribly. Yesterday afternoon, Alex was transferred to a room on the 5th floor. It has another child in it and is excruciatingly small. I stayed with Alex during the night but neither of us got much rest. My goal for the day is to get Alex into a private room. The nurse said he should be in a private room and would be if they were not all filled with chronically ill children. I just can not tolerate my child crying because he is tired and wants the alarms to stop. This situation has made me incredibly upset and frustrated. I just can't believe a boy that has gone through brain surgery is being left to such insufficient care. The nurses are overbooked and I had to ring twice and wait for several minutes while Alex screamed and cried to go to the bathroom. He was pleading "Please, Mom, I need to go potty, get this off me" and I was helpless to do anything. Our nurse was dealing with another child's seizure therefore we had to wait. I am sure you can understand how that makes a tired parent feel. I have called our pediatrician to see if there is anything she can do. I just have to try everything to get Alex in a room where he can rest, otherwise we'll be there forever!
Dr. Foreman, the Neuro-oncologist came in this morning with the pathology results. It is a JPA tumor. We will meet with him next Wednesday and chemo will start once Alex is healed. He hopes it will be by the middle of July. Steve is with Alexander now. I hope to nap, shower and get some things off my list but first and foremost work on getting Alex moved.
Alex either sleeps, watches a dvd or cries. He has not smiled in so long that my heart aches to see his beautiful smile. He drank some apple juice this morning but was sick last night after drinking some root beer. Steve's goal today is to get Alex to walk and/or eat. Please continue your prayers and if anyone has any insight on how to get Alex moved please call!!
Gwendolyn
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6 comments:
Gwen and Steve:
Have not stopped thinking about all you have been going through. These are tough days. Let's hope they are the toughest and that things only get better from here. I pray for that.
Hospitals are a difficult place to be and do nothing to bring out the best in your situation. You are seeing that you need to advocate for Alex every step of the way. As exhausting as that is, keep it up. Alex needs that and it is becoming part of your job now. Believe me, you will see the pay-off for your efforts.
Thank you for your postings. We all need them. So many are thinking of you and praying for you all.
Laure Levin (and Gary and Ben & Ari who are thinking about their friend)
Alex is lucky to have parents that are capable of and willing to stand up and fight for what he needs. I applaud your efforts, and can only suggest that your continued persistence is the best way to get his needs met. Hang in there...
Annie and Sam Tunheim (parents of Jackson and Alex)
Gwen -
My heart goes out to you. You must be so exhausted and stressed. I think Jodie is or was chief of staff at childrens, so I am holding out hope that she can cut through some red-tape and get you a room where Alex can rest and recover. Connor made a rainbow picture for Alex because he said Alex likes rainbows. I hope you and Alex have a better day and night.
Stephanie Blue (Connor and Ryan's mom)
Gwen and Steve. So sorry you are going through this and for poor little Alex to be in pain. I wish there was something someone could do. I will think about who we may know who could help. Until then, know we are all pulling for you all and Alex.
Susan
Our thoughts and heart go out to you all. We are so sorry to hear what has been going on with Alex and have been thinking of you all day since we heard the news for the first time this morning at MAC.
If there is anything we can do to help please let us know. We are sending our best wishes and thoughts to you.
Adrian, Margo, Oza & Milan Klanjsek
Great site loved it alot, will come back and visit again.
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