Sorry-been a stranger...

Sorry I haven't posted in a while, but not much has happened in the couple weeks that Leo's been home from the hospital. Good news is that he's kept away from infections and fevers, but he's still been going to U of C three times a week for blood and platelet transfusions. So like last week, for example, he went Monday, Wednesday and Friday and got both platelets and blood each time. His counts are still dropping fairly quickly and it makes him tired all the time. The doctors said that it is a bit odd that the cord blood hasn't kicked in yet, but they're not overly concerned at this point. They will start to let him see his doctor here in Elgin a couple times a week starting next week so that he doesn't have to go to the city all the time. So this week, he will see his local doctor on Wednesday after going to U of C for a transfusion. Then hopefully after that, he will be able to see his Elgin doctor twice a week and go to the city once.

We spend most of our time at home, as Leo can't go out in crowds of people or outdoors with all the spring pollen and such in the air. Easter was very low key for us. We usually hit a nice brunch or something, but decided just to order some food and have the immediate family here to celebrate. Leo was exhausted, but still glad to be with family during Easter. We also celebrated Alaina's 2nd birthday on April 15th and had a couple people over that evening. Lola made some pancit and we had some fried chicken. Such a Filipino meal! Good times were had by all. We are having a little party this Sunday for the kids to celebrate, but Leo will not be able to go.

I told you there wasn't much happening. I will be sure to update again soon! Take care!

Doing well...

Just wanted to let you know that Leo's been doing better. He's still pretty tired, but is so much happier to be resting here at home with his family instead of at the hospital. He's got a whole lot of medication going on, with the 30+ pill in a day, one suspension and 2 IV antibiotics a day, it's a job in itself to keep track of it all. He needed a platelet transfusion on Wednesday and a blood and platelet transfusion earlier today, so he's still having them pretty frequently. He also had a bone marrow biopsy on Wednesday to see what his progress is. The doctor told us today that the good news is that the CML is no longer showing in his marrow, but for some reason the "thing" (sorry forgot the term...megakerosytes, maybe?) that produces his platelets are not yet present, which is why he's getting so many transfusions. They expected to see these "things" in his marrow by now, which would be a good sign that the cord blood has taken, but say it's not unusual that they haven't showed up yet, so they're not too concerned. The other good news is that the nasty cough that he couldn't get rid of in the hospital seems to be gone now, which is great. Baby steps...

We'll be home all weekend enjoying the nice weather and some Easter activities with the girls. I'll be sure to have pictures to share with you all on my Facebook. May you and all your families have a wonderful Easter! Take care!

Going Home Again!!!

Leo is going home tonight! His doctors were still on the fence as to whether or not to let him go, because he had a slight fever last night, but after consulting with the infectious disease group, decided to let him go as the fever was not that high. All his blood cultures came back negative, so there's no other infection that's lingering in his system, but they are speculating that the fevers might be caused by his Hickman line. They will continue to monitor it and decide going forward if they will remove it. For now, he'll be sleeping in his own bed tonight and will be back for a doctor's appointment on Thursday.

Thank God!

Maybe...

Rumor around the nurses station is that maybe, just MAYBE Leo might be able to go home tomorrow. But here's what might hold us back. He had another fever last night of 101, so if that indicates some sort of infection again, he cannot leave. So last night the did a bunch of blood cultures to make sure there wasn't an infection looming in his system somewhere. But the good news is that his WBC is up to 2. The doctor did indicate that there's a chance that he got his fever as a result of his counts going up and his body adjusting. So let's hope that's the case and he may be able to go home tomorrow. I will be sure to update you all tomorrow.

Have a good evening!

Better

Leo's doing better, as he has been fever free for several days. They have been able to confirm that the infection was from his central line. Not from this inside (otherwise they would have removed it), but on the surface at the point of insertion. His blood counts have been still pretty low, as he needed both platelet and blood transfusions over the past couple of days. His WBC today is at 1.2, so up a bit, but pretty consistent this week. Not much else to post, but that we hope his condition will continue to stabilize so he can go home soon.

Thanks so much to Octavio and Fevin for coming by today to donate platelets! As Leo has been getting so many platelet transfusions lately, it's great to know that he's got great family and friends to give this wonderful gift. Thank you!

Better, but worse

So at least Leo's fever seems to be under control, which is a good sign that they've controlled the infection. But unfortunately, his blood counts have gone down. So his WBC is now at 1.2. They're pretty sure now that his mom's stem cells have expired. This was sooner than expected, likely because of the RSV virus that he had the other week. Now their hopes are that the cord blood will kick in and start bringing up his counts again, but it doesn't seem like it will be anytime soon. At the earliest, the doctors have said he may be able to go home next week sometime. His days are pretty uneventful here in the hospital, basically getting his medication and antibiotics and just being closely monitored. He's still fairly transfusion dependent, so I'm back to donating platelets for him now that I'm off the antibiotics for my tooth. (My tooth is ok, btw, it's just weird that I now have this gap in the back of my mouth where a molar used to be.) So if anyone can come by this or early next week to donate platelets, that would be great!