What's new?

Isaac has had 2 IVIG infusions up at the hospital since the beginning of September. He has handled it well with no major side effects. 

It does make for a long day and increased stress taking Isaac somewhere for 5 hours every 3 weeks to have this done. I personally don't know if it's worth the stress. I am working on getting an alternative treatment that can be done in the home that may not take as much time. 

In case you missed why we are doing this...

-Isaac has a condition called hypogammaglobulinanemia

-This means that he is very prone towards infections that normally are defended against by antibody responses. He also has a low white blood cell count which makes him very prone to illness. 

-IVIG is called intravenous immunoglobulin. It contains antibodies from over a thousand blood donors. Isaac gets this through his port a cath so he doesn't feel any pokes or any pain during the administration. It usually takes 3-5 hours to administer and is usually done every 3-4 weeks. 

We could use some prayers that 

-We have wisdom to know what avenue to take next with this. 

-We can get it done eventually in the home  (before I go insane). 

-He can start attending his school again by the spring. 

Happy fall everyone! 

Decisions

Isaac has been seeing a new Doctor for his immune deficiency. She was hoping that a shot called Prevnair would help him build antibodies to the kind of infections that he is prone to. The lab work showed that it did not. It's clearer now that Isaac may need further treatment, which would be an infusion of antibodies called IVIG therapy. 

This treatment does not go without side effects so it's hard to know if it's the best decision. The only way to find out is to try it. If he doesn't handle it well, I wouldn't want to put him through anything that reduces his quality of life (a smiling boy) so it may not be worth it. If it goes well it could increase his quality of life as he could potentially go to school and places without getting sick as often. Win! 

The other tough decision is school. The Pulmonologist doesn't really want him there, but my plan was to send him there on a modified schedule. He really loves it as long as we can eliminate the possibility of getting sick all the time. Can we just have the best of both worlds? I'm the kind of person who has trouble deciding what to have for breakfast so mega decisions like these and a peace of mind does not come easy. Thank you for your good thoughts and prayers as we decide what is best for our sweet boy! 

Update

It's been a really rough couple of months for us for many reasons, but there seems to be a glimmer in the clouds this week. 

1. Isaac continues to get ill often even after removing him from school. Lately he has been getting these mysterious fevers that last for a day or 2 and then disappear. We are left wondering what he is catching this time. We saw a new Immunologist the other day. It would be hard to explain what Isaac has to the non-medical field. 

Isaac was born with a condition called Hypogammaglobulinemia. You may have to google it:) Basically his body doesn't make certain antibodies to prevent infection. The Doctor gave him a shot called Prevnair 3 and will draw labs later to see how his body responds to that. If he does not respond to this then our next option is IVIG therapy. This is pretty invasive so we will take this one step at a time. 

2. Isaac is getting much bigger and in turn is causing us to lose and then not gain valuable nurses. He only weighs 41 pounds, which in my opinion isn't that huge since I've seen special needs Mamas with kids almost twice his size. People ask how I do it. What can I say? When you have a child you love you would jump off a cliff for them....and lift them if needed. 

This week we got a new bath system where we don't have to lift him at all! It has a chair that slides into and out of the bathtub. Then we just wheel that chair to the room. That will be a lifesaver for all of us. We also got a hoyer lift. Since most kids are at least 50 pounds before getting a lift, Isaac is very little for it. However, I'm happy to have it available in the home as needed. 

Again we wait patiently for the stair lift and a chair I'm trying to get for him. That process is SLOW. 

Thank you for your thoughts and prayers on this. I know very few people still read our blog because of Facebook.