Out of the hospital

We're "home"! After spending just about a week in the hospital, we were discharged yesterday to my parents house to complete or IV antibiotic treatments. Drew got a PICC line placed on Friday morning and they sent us on our way Friday afternoon. We are having Jake baptized this weekend as originally planned, but now in PA instead of CT because we can't take Drew that far with the IV schedule. Our crazy busy lives just got a little crazy busier for a while, but its all in the interest of making Drew better so we will do what we have to do. When things calm down next week, I will [hopefully] have the chance to talk more about our experience at CHOP! Happy weekend!

Health Update

For those who don't know, we ended up going down to CHOP on Monday night around midnight. Drew continued to throw up all day Monday and into the night, and we couldn't get his fever down. He couldn't sleep because his chest was so tight, he just groaned and coughed until I decided it was time to take him down. When we got there, his fever was at 102 and his oxygen level was only at 87 (normal is 99-100). They immediately put him on oxygen and started IV antibiotics to fight whatever was causing the infection. They did a bunch of cultures to see what is causing the problem and it will take a couple of days for that all to come back. In the meantime, he has stopped throwing up and has had a little to eat and drink. He has some toys in his hospital room that he is thrilled to have all to himself. Martin flew in yesterday morning and stayed with him overnight so that I could come home and be with the girls. The doctors said that what most likely happened is that he got a stomach bug and got dehydrated. CF kids are already somewhat dehydrated in their disease, so when you add on dehydration from vomiting, that dehydrates the blood and in turn the mucus in his airways that is already thick and sticky and bacteria laden. He may have had the virus move into his airways where bacteria had a time with it and just started attacking. His inability to breathe is because of an infection in his lungs. This morning his oxygen is still low so he will remain in the hospital until that gets back to a normal level. Hopefully the antibiotics start to kick the problem. He will get a PICC line in the next day or two, and once his oxygen returns to normal we should be able to go "home". Unfortunately the only way for us to get back to Cincinnati would be via ambulance because he needs these IV antibiotics every 8 hours and we can't make that in the car. We will not be taking an ambulance back, but rather staying at my parents for an extra two weeks where we can work with homecare nurses to administer the antibiotics ourselves from here. None of this will happen though until his oxygen levels go back up. Thanks for all of the thoughts and prayers. We will keep you posted via the blog on what's happening!

Off the grid

Hey there world wide web! Long time no blog! We have been relaxing in Pennsylvania since July 5 and by relaxing I mean living our normal, crazy life in someone elses house. We are heading up to Connecticut at the end of this week to visit with some of Martin's family and we are also having Jake's baptism up there next Sunday before we drive back home to OH. This has been our longest stay back east since we moved out to OH about 9 years ago. It was so nice seeing so many friends and family over the course of 3 weeks and not having to squeeze in a quick coffee or setting up shop someplace for a night and asking everyone to come to us just so we could get to see our friends. Its also nice to still have so many close friends here.

We had pretty good luck while we were here, healthwise. Well, until yesterday. Drew woke up yesterday coughing pretty good. It was a very dry, tight cough. He also had a small fever. I gave him some tylenol and did a couple of extra treatments, but around 4pm the fever went up and the puking began. And it didn't stop until around 4pm this afternoon. There was lots of crying and sweating and coughing and whining and not eating and puking and laundry being done. He was sleeping periodically here and there but never for long. Around 4am this morning, I finally emailed his doctor. We aren't sure what the puking was about, but she called in a prescription for a steroid because he just sounded so tight to me. Usually the coughs are very wet and junky when he has an infection, and the lack of that sound kept us from putting him on an antibiotic. The extra inflammation could be from anything and right now we are assuming a virus. After about 24hrs, the puking finally stopped, the fever broke, and the poor boy got some color back. He pooped too, which is good because I was mildly concerned that the puking could be because he was blocking up, but after he had something to eat, he pooped and he seems like hes coming around. The coughing isn't much better. As I type, he's up in bed coughing away. I will probably try another breathing treatment before I go to bed, just so that he can get a good night sleep. I hate all of these random sicknesses and infections out of the blue. He was fine two days ago, and this afternoon I was on the fence about taking him down to Philadelphia Children's. Hopefully we get better overnight and get over this and can deal with whatever is going on when we get back to OH. Fingers crossed.

I'm totally exhausted. I wish I had more time to write some things on here. Hopefully when we get back home and things settle down I can give some updates on the work I'm doing at Children's and with the CF Foundation. Happy summer!