Immune deficient

I want to do a post for each of Lily's main diagnosis'. I am gonna start with her immune deficiency simply because we have IvIg in the morning and this diagnosis has so far been the cause of most of her hospitalizations.
Lily has been diagnosed with hypogammaglobulinemia. That is fancy doctor speak for she is missing part of her immune system. Our Immune system is found in our blood and is made up of 5 different immunoglobulins: IgG, IgA, IgM, IgE, and IgD. All are important but the MOST important are IgG, IgM, and IgA. Lily is missing most of her IgG and all of her IgM.This makes it very hard for her to fight off sickness and infections and basically guarantees she will catch whatever she is exposed to. Yes I have thought of putting her in a bubble and No I am not going to. Though I bet she would have a grand 'ol time of it crawling around in a GIANT ball, it just isn't gonna happen.

OK, back to the sciency stuff, Her doctor says it is possible that it is Transit  hypogammaglobulinemia of Infancy or THI which would mean she would grow out of it by age 6. I would LOVE for this to be the case but THI always just involves IgG and NEVER IgM (I do my research). So how could that be the case with Lily? she is missing her IgM! I think the Doc is just trying to be optimistic. But I can still hope.

The treatment for this is IvIg therapy which is basically a blood transfusion of just the IgG part of the blood. Now that Lily has her IV port its not quite as big of a deal. She gets IvIg every 3 weeks.

A typical IVIG day:
We get up early and drive to PCH (Phoenix Children's Hospital). We go to the oncology/hematology building and wait. (For some reason blood disorder patients and cancer patients are always treated together). They send us back to a room and we wait. After a while Three nurses will come in and two will hold Lily down (shes stronger than she looks) and a third will attach the iv to her port. We have a lovely cream I put on her port site an hour ahead of time to numb it so she doesn't feel a thing. She still screams though because she is being held down by nurses with masks and in yellow sanitary robes.

Now we get to go to the treatment area and pick our seats and get comfy. and wait :) The treatment area is a long room with a bunch of reclining chairs. It is filled with children receiving IvIg, chemo, and hemophilia treatments. There's a Ton of toys and therapy animals frequent the room. Its very bright and colorful and full of happy chatter with the nurses and children laughing and playing, but every kid there is very sick. About half of them have cancer. My heart breaks everytime we go. Some of these kids will die. I recognise the pain, exhaustion, and fear in the other parents eyes. Its the same thing I see when I look in the mirror. Knowing the treatment will make her sick, knowing she will scream and hurt and be sick for the next 36 hours, knowing its absolutly nessecary for her. It helps keep her alive. I have found myself completely avoiding eye contact with the other parents. Their pain and fear makes my own pain and fears closer to the surface, harder to hide and ignore. Now I know Lily doesn't have cancer. I am not comparing what I go through with what a cancer parent goes through. The only similarity is we are treated in the same rooms and floors of the hospital. And our childrens medicine makes them sick, and its NOT a sure thing. All of these parents have to wonder if it will work or not. If it will be enough. And what will happen if its not enough.

Ok enough with the heavy, IvIg takes about 3-4 hours, its a slow paced infusion and they must continually monitor her vitals. When we are done a nurse comes and removes the iv from her port and we can go home.

Over the next 36 hours Lily gets sick. she cries most of the time, vomits a lot and has lots of loose stool. I hate that it has to make her sick to keep her well. I also HATE that she doesn't understand. I wish I could find a way to make it all better.

After 36 hours or so, her smile comes back and she gets a bit more energy. She is happier for a couple weeks. The color comes back to her cheeks and the dark circles under her eyes nearly disappear. And HOPEFULLY we stay OUT of the hospital! And then in three weerks we repeat.