Tuesday, September 28, 2010

Pneumonia, Take Five

More illness, another trip to the ER.

Luke's official diagnosis was asthma trouble and pneumonia. The poor boy can't get a break. This was the result of catching Cody's cold earlier in the week. We spent five hours there, and left with steroid and antibiotic prescriptions. During our stay he had an hour long nebulizer treatment, dose of steroids, a second short neb treatment, chest xray, and a nap while his Pulse Ox levels were monitored.

He is on a regime of nebulizer treatment every four hours. The first 48 hours he got it round the clock. Now it's just during waking hours.

Did I mention that my husband was out of town during all of this? Awesome.

DH is home now though, good timing too, because I was to the point of being pretty darn tired.

We saw the pulmonologist today, she said we are to continue drugs as we already were. Tomorrow we meet with the new allergist/immunologist. We need to get his immune deficiency figured out.

Friday, September 24, 2010

Doctor Disappointment

Last week I made the decision to change allergists. A couple months back I decided to see a different allergist in the same practice, although I had some nagging feelings about the office in itself.

In March, after doing the blood work following his anaphylactic reaction to peanut butter, I called the allergist's office to get the results. The secretary then told me that Luke "passed the peanut challenge and could have peanuts". I pointed out to her that he didn't have a challenge, he had blood work done. She said it must be what the allergist called a blood test.

Um, no. A challenge and blood test are two totally different things. Thankfully I knew that, and knew it didn't sound right. She read a doctor's name to me, saying it was Luke's pediatrician. Again, no. Turns out she was reading SOMEONE ELSE'S chart to me. What if I hadn't known the difference, and had turned around and given Luke something with peanuts thinking it was ok?

So that's the basis of my discomfort with the office. Throw in general confusion at every appointment, the original allergist not knowing if there was egg in mayonnaise, and the lack of easy communication (his nurses, etc, seem to have trouble with English), and I wasn't too thrilled with the support staff.

Last week I called to find out where I was supposed to take Luke for his blood work - the allergist had said they would call my insurance company to get authorization for us to go to Fairfax Hospital's Children's lab since he is so difficult to get blood from. When I talked to the secretary, not only did she not know anything about it, she was nasty with me. That was my final straw - I made an appointment with the allergist/immunologist at the lung center that he's going to for pulmonology, and requested that his file from the original allergist be sent there. I'm hoping that this will be our final switch, and that we will be happy with the treatment we receive from there.

He doesn't see her until mid October though, and I have a strong suspicion right now that he has pneumonia again. It started as a cold that he caught from his brother, and has morphed into heavy/hard breathing. I've been doing the breathing treatments and his inhaler, but it hasn't seemed to be helping. For now I'm waiting until the doctor's office opens in an hour - I'm hoping they can get us in right away, and that I'm wrong.

Tuesday, September 7, 2010

Vacation



We made it to the beach!

My grandfather's party was a lot of fun - lots of confusion, but lots of fun too.

It was nice to get to visit with him and his wife, although I'm a little disappointed that we didn't make it into Charleston. Next time though.

We arrived at the beach Sunday evening, and have been enjoying ourselves greatly.

Yesterday the beach was a little crowded from the holiday, and super windy, so we went to Brookgreen Gardens instead.

Lots of fun, although it was pretty hot and everyone was worn out by the time we got back to the condo. So dinner was grilled cheese for the boys, and Krystal Burgers for the adults.

Allergy wise, the trip has been a success. I had a mild freak out at the party, when they poured a nut mix into a bowl on the buffet. Images of people eating the nuts, then touching Luke, caused a little panic. Luckily Luke was a little wildman, and spent his time running, so no one had a chance to touch him. Which meant I spent the party chasing him. That wore me out too.

I love South Carolina, especially the area we're in right now. South of Myrtle Beach, in the Garden City/Litchfield Beach/Pawley's Island/Murrell's Inlet area. Beachy, but not overly touristy. Very clean and well kept area. Stuff to do, but not overwhelming like Myrtle Beach is. I could stay here forever.

Thursday, September 2, 2010

Six Month Anniversary - What I Have Learned

This Saturday, September 4th, will be the six month anniversary of Luke's first anaphylactic reaction. In some ways I can't believe it has been six months already - it feels like it happened not that long ago. In other ways, I feel like it has been a lifetime since we entered the world of having a child with a life threatening food allergy.

So what have I learned in the six months?

I'm stronger than I ever realized. I can handle whatever is thrown our way, and I am capable of keeping my child safe.

Not all anaphylactic reactions look exactly the same.  I learned that when Luke had an ANA reaction after eating at Burger King (which doesn't serve any kind of nut product).

Having an allergen free home is completely worth it. You'll hear the phrase "safe haven" when people speak of keeping their homes 100% allergen free, and it's true. It's the one place that I know I can feed Luke whatever is in the house, where I don't have to worry about what he might get his hands on. It's a sacrifice at times, but well worth it.

Having the right allergist is worth the headache of trying out different ones.  Not all doctors will be the best fit for you, take the time to find one that you are 100% comfortable with.  

The internet is a wealth of information and support. I don't know what I would have done without sites like Kids with Food Allergies  or Allergy Eats .  Another that has been a big help is NOVA Food Allergy Support Group.

What am I still learning?

I'm still not completely comfortable in social situations.  Seeing someone bring out food, especially if it's not in a package where I can read the label, causes me anxiety.  I know that I'll never be totally comfortable in social situations...you really can't be if you're going to always be diligent.  But I am trying to work on being better about speaking up, instead of just jumping and removing Luke from the situation.  I need to work past the self conscious part of worrying about looking like a crazy person for either drilling someone on what's in the food, or asking them to remove it from Luke's reach.


Speaking of social situations, we have a doozy of one coming up this weekend.  My parents, the boys and I are traveling to South Carolina for my grandfather's 80th birthday.  It's going to be at the VFW, dinner and dancing.  To say that I'm not nervous would be a complete lie.  I have food packed for Luke, and my trusty Foogo to add some kind of hot dinner for him to take with us.  But staying in someone's house, and being around food with a bunch of strangers, is a little bothersome.  Especially knowing that it'll be older, southern people.  Because if you're familiar with southerners, you know they love to keep people fed  =)   I know, because I'm one of them!  My game plan is to keep Luke with me at all times, no exceptions.  My husband is staying home, so that will make it a bit more difficult, but I'll make it work.  I'll probably, once again, come across as a crazy person at some point in the evening.  But I'm ok with that.

Wednesday, September 1, 2010

Pneumonia Round Four

My poor little dude


Friday Luke woke up with a cough.

Saturday we were out of town, and the whites of his eyes started looking a little red.

Sunday morning he refuse to eat or drink anything, and his eyes were even more red. Cough was worse.

Sunday afternoon I called his pediatrician because he also had a fever. She had me alternate Motrin and Tylenol, and said we'd have to take him to the ER if his fever didn't go down with medication. It did, so we stayed home.

Monday we had an appointment with her at 11:30. His temperature was fluctuating between 101 and 102 at that point. The whites of his eyes were so red that you couldn't hardly see any of the actual white. His chest was rattly, he was still refusing to eat or drink anything other than Pedialite. She sent us for chest xrays and gave me an order for blood work.

After naptime my husband met us at the imaging place to watch Cody while I took Luke in. Xrays were done, but it was too late to get the results back from the doctor's office.

Tuesday morning I made plans with my BFF to head to a local hospital to have Luke's blood drawn -the doctor wanted to check for a possible mold or pet allergy, as well as his immune system. Before we could leave though, the doctor's office called - xray results were in, pneumonia had progressed to fluid on his lungs, and she wanted me to take him to INOVA Fairfax ER, because they have a good pediatric pulmonary department. A quick stop to pick up xray films from AAR, and we were heading north.

My BFF is a nurse in the adult ER at Fairfax, and she came with us. Huge relief for me! Husband stayed home to watch Cody. They got blood from Luke (while he was yelling ALL DONE the entire time), and the results showed normal white blood, but slight anemia. BFF says it's probably from him not eating over the last couple of days.

They wouldn't do the allergy testing - they were convinced it was the skin prick test, no matter how much I explained that RAST was a blood test they wouldn't listen. Doctor is hoping that they took enough blood for the lab to check the RAST anyway. He was given antibiotics through an IV, and a breathing treatment. They were going to keep us, but sent us home since I am able to give his treatments here.

So now we're waiting for a Sept 14th appointment with a pediatric pulmonologist. Cystic Fibrosis was mentioned a few times in the ER, which of course has made me very uneasy. I am hoping and praying that he tests negative for it. Doctor says that it's the worst case scenario, but that they have to rule it out.