Infusion baby

On Thursday after I did Ezra's prophy he told me "baby's turn." So we poked a water baby. This all happened while Eve was at school and when we talked about it I could see she was interested. She asked me if the water baby was leaking water (a concern I had but I thought oh well) which it wasn't. I thought that would be the end of that. Then this morning when we started putting the numbing cream on the boys Eve and Ezra both wanted to infuse their babies. Don't worry we did not push real factor into the babies... Ian was thrifty and recycled the syringes from the boy's infusion so we could use them on the babies. The kids were thrilled... and there were Dora the Explorer band-aids to go around.

Yet another ER visit...

How did we go over a year with Ezra having a port before we had to take him in because of a fever? I think it is probably because I was pregnant and had a new baby and we never went anywhere to pick up germs. Yesterday we went to gymnastics.... the breeding ground of all good germs in Ketchikan. Ezra sure loves it there... my nerves don't love it there so much. One time he fell and magically cut his head open while at the very padded gym. If I remember right this was before Evan was born. Can you imagine watching two little boys going in different directions while other kids run wildly around them... this is what I decide to do for fun on a Wednesday? Anyways...

Evan woke up from his nap yesterday afternoon feeling a little warm. I thought I better keep track of this fever. Easier said than done. I spent an hour cleaning the house looking for the darn thermometer that actually works. The one that doesn't really work said his temp at 99... not much to worry about. Then I had to 

torture my one year hold by making him hold still enough for the thermometer to read. Is it just me or do they take forever? Well it didn't finish reading but it got up to 101.7 before he decided he just wasn't having it.

 I thought the earlier we got to the emergency room to have his blood drawn out of his port the better. But I was also in the middle of making dinner and making our bread for the week. So I called my mom to come watch the kids and my bread while we went to the ER and we set down to eat dinner. Then we called the hemophilia nurse to give her a heads up about what was going on.

At the ER the doctor was not on top of his game... I think that is a nice way to put it. Doesn't anyone read a chart? So he said Evan had an ear infection and was ready to send us on our way with antibiotics... I said so  don't we need to have blood drawn out of his port to check for infection. He was like oh he is the one with the hemophilia.... A real gem of a doc. I know he was probably tired. It was the end of his shift but come on! Then the lab came to draw blood out of Evan's vein. Ian said what about his port... they had to check to see if that was okay. It better be okay because that is where it needs to come from. So they had us access his port and they drew the blood out. Then we flushed his port and they sent us home with antibiotics.

So today I had to go follow up with our pediatrician. Evan doesn't have an ear infection. Just as I suspected. He does have a cold... just as I thought. We have to keep an eye on him and wait to see what happens while they grow the cultures (takes 5 days). I wish these things would happen when our clinic was open. Our doctor is really amazing... can't she just be there 24/7? At least we have a hemo nurse on call at all times.

Double Prophy day...

My least favorite day of the week is the one day a week when we have to infuse both boys. Ezra's prophy schedule is every other day... Evan's is twice a week. So depending on the week their prophy schedules align on a Tuesday or a Friday. For some reason in my mind it just seemed like that would be easy; line them up and get it done. I think maybe it wouldn't be so bad if we could do it at our own pace... but there is a rush to at least get Evan infused before Ian goes out the door to work... and usually we try to get set up for both boys while we are at it. Try is the important word... looking at my records Evan usually happens at 8... so Ian is late for work and Ezra has to wait until after Eve goes to school and Evan goes down for a nap. That just makes me feel like I spend half of the day dealing with prophy.... but that is way better than spending half the day in the emergency room... or even the doctor's office.

It's the Protocol

It's been a long night.

I know it is a terrible picture but we are waiting to be released from the hospital and he was sleeping on my arm..  Since Ezra had his port placed we have not been able to give Tylenol for fevers.  Fever is a sign of a possible infection in his port.  So, when he has a fever we wait to see if it will go over 101.  Sunday was the first time Ezra had a fever that broke that barrier, 103.3.  A quick call to a hemo nurse and we were off to the ER.  I walk in and tell the receptionist Roskam, Ezra like we were there for an appointment.  I get a blank stare and the doctor behind the counter says "we've been expecting you" and we get walked right to a room.  Now that is what I call service.  The whole reason for this visit is to determine what is causing his fever.  One blood culture from his port, one from an arm, 4 additional vials from his arm for other tests, some unexpected chest xrays, and a fight for a urine sample and we were both exhausted.  Then we had to wait almost an hour for the prophylactic IV antibiotics. Tylenol kept his fever down for the night and he didn't need it the next day.  Now he is nearly back to normal.  Tomorrow we should find out what the cause was but it is pretty clear it was bacterial.  The real question is where the infection was.  During the follow-up appointment Ashley asked what we should do if Evan developed the same fever.  The answer?  The same thing, it is the protocol.  Feels strange to say this but I am looking forward to when the boys infuse IV.  Of course that has it's own set of problems but at least a fever doesn't mean a trip to the ER and blood tests.