When it rains it pours…

Where do I start?!? 2 weeks ago we got to come home from a 3 week stay at the hospital. What was supposed to be 3 days of prep work for a colonoscopy turned Into not feeling good, going in 5 days early and all hell breaking loose. We changed some of Bo’s meds around since we were going to be staying put for a bit, well with trying to clean him out and this crazy leg pain he has been having everything fell apart. He got a picc line, I never thought I would ever say I was so sad not to have a port, but boy do we miss it. When we first got there he was super dehydrated with blood sugars all over, so it took 6 pokes and Finally the PICU DR coming in and put a line in his foot. The next day we got a PICC line so much easier,Ugh… The day before his colonoscopy he had a very bad seizure, one that scared me half to death and we had to call a rapid response on him, which means the whole hospital comes running. Scary shit! He got a gigantic dose of phenobarbital and was out of it for most of the night, we changed something’s around with his seizure meds and cancelled the colonoscopy, he had another one the next day but was nothing compared to the day before. He has been having some pretty severe leg and ankle, well really joint pain, since rheumatoid Arthritis is a clinical diagnoses we started him on some meds to see if the pain would subside, instead his counts went crazy and he was pancytopenic Which means all,of his counts were dangerously low. His ANC was only 200. It was a very rough 2 weeks, this is kind of how he works, he just falls apart for no reason. So we changed the RH meds and are giving him something different for that, it sucks it really does. Having your 5 year olds little body hurt so bad that he doesn’t want to get up and play, it’s heart breaking! We all had a pow wow about what our plans were, what is next. Well were home with nursing 5 days a week, he gets to go no where. But at least we’re home. I just need him to be home for the holidays for all of our sake. We have moved IVIG to every 2 weeks instead of 3 and we’re hoping we will have some results soon from the long term bone marrow biopsy. Monday Dec 1st he spiked a crazy high fever, we got some labs and his white count was 2, which is really good considering where he was. Today were getting IVIG and checking counts again. One of the hardest parts about this whole thing is yesterday I have to start prepping Bo for this. I have to tell him all day long, remember we’re getting IVIG tomorrow and remember your going to have to get a line, and remember it will only hurt for a few seconds, and remember mommy will be there, and remember it is only for a small period of time. Then all day he says to me mommy, why does it hurt, mommy, why do I have to go, mommy, why do needles hurt, mommy, way is their blood, mommy, why do I have to go to the hospital, mommy, why do I have to wear a mask, mommy, what time is it. Which means when are we going! Ugh, he asked me and everyone else at least 50 times a day what time it is, not sure if it’s because he takes so much medication, I’m not sure if it’s because he is so used to hospital time, I don’t really know. What I do know is in life you don’t realize just how when you have a family you always knew you were going to have to divide and conquer. John and I have to do that. We both don’t get to go to Leksi and Johnny volleyball and basketball games, thank god my father in law is willing to miss them, yesterday,they both played at the same time, thank god Leksi and Johnny are ok with the life we have become so accustomed too. Is it fair absolutely not, is it just the way it has to be yes. We’re so blessed to have such great kids, who just roll with the punches and blows. Please keep us in your thoughts and prayers to get us through these holidays!

C