Update on Hunter

As I sit here, Hunter lays next to me with a 101 fever. He's in pain and uncomfortable.  He's woken up from his sleep several times and has had a migraine so bad that it made him vomit.  This is a strong little boy.  I guess it was my fault, trusting a 4 year old to tell me when he didn't feel well or to slow down if he was doing too much.  Instead, I let him go to a birthday party, run errands with Dad and jump in the bouncy house with his brother.  I wish I hadn't.  I wish I had been the mean mom, as I usually am, moderating his activity level.  I thought he felt better.  The doctor said he might have side effects up to 24 hours later.  It's been over 24 hours. I thought he was fine.  I was wrong. Now we need to wait and see if tonight warrants an ER visit. The nurse's line says to wait on his fever and the on-call doctor at Children's Hospital says to wait it out and give him Motrin.  I guess I'll sit here and wait.

Here's the story: 

As many of you know, two years ago Hunter was diagnosed with an autoimmune disorder.  His original diagnosis was hypogammaglobulinemia. He was expected to outgrow it by his 5th birthday.  We have visited the immunologist and done blood work every 3 months for the past 2 years.  Unfortunately, his blood has taken a turn for the worse.  After getting 3 doctor's opinions, and a new diagnosis called Common Variable Immuno Deficiency (CVID) we went with an aggressive treatment.  Hunter will get blood infusions every week for the rest of his life.

The main problem that Hunter has is that he doesn't make antibodies.  Where many people are vaccinated for different illnesses ranging from chicken pox to polio, Hunter cannot make antibodies so he doesn't get the vaccinations.  This is one reason it is so important to vaccinate our children.  We protect those around us who cannot get the vaccinations themselves.  There are children who are so immunocompromised that they will not survive any complex illness.  If Hunter contracted chicken pox, for example, he would not be able to fight that and would not survive.  Consequently, the blood infusions he gets are pure antibodies collected from over 10,000 people at regular blood drives.  The antibodies are collected and sterilized and then the patients who need them get them either via IV or subcutaneously.  Hunter's first treatment was via IV on Friday.

We got up at 7:30 am and went to Children's hospital, arriving at 9. Yes, 16 miles in 90 minutes, but I digress.  We met with the doctor while the numbing agent worked on his cute little arm.  He was super brave.  They did the IV and he didn't even feel it.  About 10 minutes into the treatment I was talking to a social worker and heard him cough. The next time he coughed I looked over at him.  His face was red and swollen and he was struggling to breathe.  I calmly asked the social worker to get the nurse.  The nurse came in and I heard the panic in her voice as she said "Call Dr. Church." He came in a moment later and, in a concerned voice, said to stop the treatment and push prednisone, Benadryl and hang saline. He came back every 5-10 minutes for the next hour.  Hunter quickly calmed down and his breathing returned to normal.  He was overwhelmed by the 2 nurses, doctor and social worker staring at him and started crying.  Then he calmed down.

I texted Brian and he wasn't available because he was taking care of Landon and Aspen.  I called him. No answer.  I texted my friend Tami, as tears streamed quietly down my face and she called me back.  As soon as I heard her voice I lost it and had to walk into another room so that I could sob without him seeing me.  She offered to come home from Anaheim and take my kids so that Brian could come up to the hospital with me.  Tami is an amazing friend. I got off the phone with her and walked back into the room with Hunter.  I pulled him onto my lap and snuggled him for 10 minutes, as long as he would let me.  The rest of the treatment was smooth sailing.  He had the nurses wrapped around his finger and, after getting a happy meal, he was much happier.

Today we had a good day, going to a birthday party and then he ran errands with Daddy.  When he came home he had a massive migraine and I had him sit and rest with a face mask on his head and some cold water.  After awhile he said he felt better and wanted to play.  Then he went in the bouncy house with his brother.  That was the final mistake of the night.  He vomited, presumably from the migraine because his head was pounding.  He isn't used to feeling good though, so why would I think he could moderate his own activity? Why did I let him go in the bouncy house?! He spiked a temp and is in and out of sleep complaining of being sore and achy. This sweet little boy just shouldn't feel so ill. I love him too much. I wish I could take it all away and be sick for him.

Waiting to start

Hiding from the IV. Silly goose.

 Brave boy

 His antibodies. Funny that something that comes out of vials are so important to his life.

 His favorite nurse, Christy.  She was a gem. Can't say enough good things.

 Restless and ready to go to the playroom. Despite sitting for 5.5 hours and a big dose of Bendaryl.

 Christy taking out his IV.

SO happy to be needle free!!!!! Handsome boy.

 After he finished we met Daddy at his office where he had picked up this GIANT cookie for Hunter.  He shared it with the people in Daddy's office and then brought it home to share with his brother and sister (and mommy.) Sweet boy.  He really wanted to share it with the nurses, so when we go for our next appt, we will bring them cookies or chocolates.

Many people keep asking me "how can I help?" I didn't know how to answer but I appreciate the sentiment that so many people care and want to help. I organized a blood drive.  The blood will not go directly to Hunter, but the more blood the bank gets, the more people it can help.  I appreciate all of the people who come out in support of Hunter. 

March 29th 2-8 pm

2000 W. Artesia Blvd

Torrance, CA

Friends are also currently organizing blood drives in San Francisco and Salt Lake on behalf of Hunter! How kind are they?!