Infusion

I am a little behind on my blog here.  Been busy and very distracted.

Gary's infusion was on Wednesday the 20th.  We had a clinic appointment then to the floor for an admit.  The 38 admission I think, or something like that.  The appointment seemed to go fast.  It wasn't that they didn't have time or anything it was just the same old same old.  Ok honestly it was very much a blur.  We are continuing on the same course with treatment.

We exited clinic and went to have the front desk call admitting.  Like we always do.  We then go to sit on the boat (a large canoe that is really a bench).   It was there I received the news.  My phone had a message on it that said, "I just heard, so sorry, praying for his family."   First.  What?.  Next, instantly, I knew.  My face contorted, my breath left.  My heart sank, then broke.  My stomach wrenched, my chest tightened.  Heat and pressure rushed to my face.  I threw my hands over my head.  Rocked once.  Forward then back. Gary's face filled with fear.  I felt someone sit next to me, and a hand come over my back.  She whispered into my ear, "what can I do?".  Another mom, with a baby girl strapped to the front of her.  She talked to Gary who started asking questions and was getting agitated.  He thought I was crying because of him.  I couldn't speak.  My throat was too tight.  I came back quickly to get myself under control because I needed not to scare my five year old son.  The woman told Gary so very gently, "sometimes Mommies get sad."  I finally said a very good friend went to heaven.  Then Gary would not stop until he knew who.  My mouth could not form his name.  I could not tell Gary who.  But Gary doesn't fully understand and I would rather give him the information he needs to know.  The unknown can be terrifying.  My lips wouldn't even make the sound.  But in between a brake of sobs, I was able to say it.  Mason.  Our friend Mason.  Gary asked if Mason was where Ray's Dad is.  I said yes.  He said, Oh that it sad.

When you are admitted to Children's from clinic, they send an escort out to walk you down to your room.  I have gotten know most every escort.  In fact, if I don't recognize the person I ask if they are new.  This time there was two of them which was weird.  I couldn't speak.  I thanked the lady for her help.  What an angel.

The two gentlemen who were helping us down asked if they could help.  I said no, I had everything.

The elevator was just great.  It was stuffed full of people, with me sobbing.  I could tell the other people were very uncomfortable.  I hid my face and gently cried.  That is all you could hear.  A few of the ladies tried to chat to cover up my sobs.  We finally got to our room.  The staff was a buzz.  You could tell they were forming to make bring in whoever and whatever for support.  I was able to turn it off.  I put the brick wall up in my mind.  Got down to business.

First order of business was Gary suddenly got a bloody nose.  No big deal.  It happens.  Then he complained he felt pukey and kept making these throat clearing noises.  The blood nose stopped.  I was chatting about the nurse, answering the usual intake questions when Gary made a gag noise.  He coughed and there, on the couch in our hospital room was a bloody sticker.  Gary had stuck a cars stick up his nose.  He coughed it out.  I was stunned.  I asked him when he stuck if up there.  I think it was on the way to the room.   The nurse was just as stunned as I was.

I really really wanted to ask for a room to ourselves.  I really really should have just gone home and come back later in the week.  Our room mates was very nice.  They were treated to me coming in to the room and listening to be sob.  I still can't believe it.

The infusion and IV start went good.  From what I can remember.  I told the IV team that Monday we were scheduled to have a port put in.  She looked at me, eyes big, and said, "that is like Christmas to my ears. He is one of my hardest pokes.  I never know if I am going to hit or miss.  I am so glad you are doing this."  Well that was one vote for yes.

I was so out of it and so exhausted I forgot things.  I forgot to remind them to slow the IVIG down.  When I woke up around 5am, the next med was up and running.  I asked the nurse about it and she said she didn't see anything in his file.  Right because the five allergies he has listed as different types of IVIG's didn't tip you off?  Oh wait.  No allergy band.  Next time, I will gather myself, and go home.  I need to be on my A game. And for one of the first times in the 3 years Gary has been receiving treatment, I was not.  Next time, when I am upset like that and can't watch over everything like a hawk, we will just have to come back.
The IVIG went in over normal rate.  He did fine with it.  He did get pretty sick that night but I have no way to tell if it was from the infusion or what.  He had Cytoxan, Pamidronate, IVIG, and a pulse of steroids on 6/20.  that part is for me and my records : )

PORT SURGERY
Port surgery was yesterday.  It was very well.  I was calm and clear.  The only part that was difficult when he realize they were putting him to sleep.  At the surgery doors he began to cry when he realized what he didn't realize before.  I am not sure why he didn't put two and two together because he usually does.  When doctors came to get him they thought he would simply just walk back.  I am always hoping for new happenings, like when he had the MRI.   He is still just a babe, and with everything he has been through these past three years, he is just not there.   So they aborted the mission to find me some scrubs.  I gowned up and picked my baby up and walked him into the surgery room.  He cried.  Alligator tears rolled down his cheeks.  He sat on the table in his underwear and hospital gown scared.  It was minutes before they were ready with the gas.  An intern anesthesiologist, who was being closely monitored, fumbled nervously.  He wanted to hold the gas next to Gary's face instead of on it.  The mask pointed toward me.  His senior resident quickly grabbed it from him and said, "no no no, your gonna gas mom."   I briefly thought for a second, "I don't mind."  LOL.  Of course they way Gary giggled, then his eyes rolled back in his head, pass on hitting the floor.  The doctors and nurses always look at me so compassionately and almost sorrowful. "He'll be fine Mom."  I kind of do phhhhfffttt, grin, huff, and then with a straight mean face I look them all in the eye and say, "he better be".  lol.   Nah I didn't say that.  I appreciate their compassion so much.  If it was any other way it would be difficult.

The procedure was to take only 30 minutes they said.  It took a little more.  I tried to enjoy my time with my latte but was anxious to see him again.  My pager went off and it was time.  They only said two people.  So I brought his best pal with me, Uncle Ray.  They put us in a room where he wasn't.  Then they came and got just me to go into recovery.  It was what I expected.  He was angry, disorientated, and in and out.  They wanted me to hold him.  They promptly layed him in my lap.  I looked down at him.  He told me hated me gasping for air and crying.  He then went back to sleep.  He woke up every few minutes to cry and complain of a headache.  I asked for Tylenol.  The nurse and I chatted about whether it was from the surgical site or if it was an actual headache from the narcotic they ran through his IV.  I said a headache.  I could tell by the way he winced at his eyes.  I have seen that look all too many times.  They couldn't give him tylenol until they did an xray to confirm the port was in the correct place.  I expected to be transported to xray but they did a bedside xray!  So nice.  Minutes went by.  The nurse wasted no time at all.  She called the doctor right away and said, "Gary Bradford's xrays should be up now."  I held him in best position I could.  I was relieved for two thing.  When the tylenol went in and when I was able to put him back on the bed.

They wheeled him back to second and final phase of recovery.  This time I wanted him to take his own sweet time.  They wanted him to drink.  He didn't want yet.  The next nurse of that phase said if he didn't drink we couldn't go home.  She wanted to go to lunch.  I so get that and that was ok.  If I had sit in that all day and all night I would have.  When he had his teeth done we were pushed own way too soon.  Gary came out out of the anesthesia smoother suddenly.  He was talking to his Auntie and sister.  I kept him snuggled and wrapped up until he wanted to move.  He finally took a sip of apple juice cooperatively and stood up.  I was proud of him.  He can't see his port without looking in the mirror.  He was trying to see it.  I was so impressed.  He seemed prepared for this.  He for the first time, I could tell, understood what this was all for.  It made me feel so proud and relieved as his mother.   This was my decision to make for him.  A very difficult one to make indeed.    Gary Bradford, you are awesome buddy.  I love you.

Another Pulse

Forgot to Post this.....
Another pulse and this boy is a mini man. He could move mountains. Wish it didn't take steroids to get him there. Hunger keeps him awake at night. Think that why I have been wanting to nap during the day. Cuticles look pretty good. They are still showing signs of capillary change but the anger is subsiding. Our doctor called on Tuesday to talk it all out with me. I told over weekend he was fabulous. I said the 500mgs of steroids works nicely. Monday he complained here and there of trouble getting off the floor. A little tired but good. I said I was on the fence about whether he needed another round. She immediately replied if your on the fence then do is his disease. Well, let's push that little bully off the fence. (speaking of Jdm not my son). Of course after my lip and moments after I may had something different to say, but it was short lived.

KINDERGARTEN
Tears. Fear. Sad. Scared.
I think back to my daughter and oldest son. Elexis is ten, McGuire 13. How different this child has been. Elexis did two years of pre school. She was strong, smart, sassy, full of energy. Mommie did cartwheels when this wee one went to school. I didn't worry about her. McGuire, he had been in pre school since age of three. I did worry some about him because he was always a step behind the rest but Gary, Gary will be my ultimate final heart wrenching last to enter into kindergarten. We met with the school today after physical therapy. They wanted to meet him to see exactly what they needed to do for him the best they can. It was very helpful for me knowing they care. They are taking his health and his education seriously. He drew some pictures for them. He did great. Copied a triangle, a plus sign, and a square perfectly. His cutting was up to par as far as they could tell. He even put down the first letter of his name! Around and hook it back is how we make G. I also told them he had experience with smiley faces.  Now onto immunizations.

Finally

He looks so much better.  Things are kicking in!  Yes.  On Thursday we had our 500mgs of methoprednisone followed by a dental procedure.  It started with the standard, nothing by mouth, so naturally that was the night before.  I was so thankful to have my sister with me.  They let me carry him back went it was time.  He had fallen asleep waiting on them.  So he woke up to going into the surgical room.  I was in the gear they give you to simply enter the room.  He was most displeased with the fact I had on a surgical hat.  But soon none of that matter because he was snoring again.  They fixed his cavities, cleaned his teeth, and scoped his throat.  The scope was on order from the voice doctor who asked the next time Gary was put under, he wanted a peak.  Here is what he found:

I know ewww.
But this is what they are suppose to look like:

They are suppose to be thin and white.  I know my friend Summer has struggled with the same thing.  The hoarse voice.  What to do about it.  The doctor explained if this was Gary's only concern we would inject steroids right into the vocal cord.  Gary, however, has much more to deal with.  He wants him to start voice therapy for now.  We hope it will get better with time and age but as long as JDM is at work, what is the point.  Least of our worries I suppose.  What bothers me a little bit is his colon looked the same as the lesion looking vocal cord.

The great thing right now is he is feeling better.  Walking better.  Talking better, everything better.  I do have a fat lip from being head butted by him.  He thought a good wrestling move was a full on face slam.
Spent Friday night as Angelina Jolie.