hospital stay #5...diruetics

(first off, thanks to everyone for coming to the fundraiser, it was AMAZING and so much fun!!! we made over $6k for Gavin's transplant fund!!!! Pictures to come soon!)


One day after Gavin was released from the hospital last week, we left to go to UCLA for his monthly check-up, and so I could do live donor work-up. We took the kids with us this time so they could see the hospital and the hotels, and meet the doctors and such. Driving there was HORRID, the rest was fun. First day I had appointments all day long...ranging from pediatric surgeon, running on a treadmill with electrodes stuck on my chest, chest x-rays, getting 9 vials of blood drawn, giving urine and stool sample (um, ya....strange), speaking to a social worker "Have you tried drugs before?" Me: no. "Are you sure?" Me: yes. "No little marijuana?" Me: no. "No little cocaine up the nose? No little heorine in your arm?" Me: um....no. {looking at her with crazy eyes}, speaking to a psychiatrist (he asked me 10 questions "what does 'don't cry over spilled milk' mean? Spell world backwards, and Name 3 cities in the US....I got them all right, he pronounced me "very intelligent, in the top 10%." UMMM hahaha, I fear for the nation if those questions measure intelligence. I think he says that to patronize people.), and getting a ctscan on my abdomen....they stuck iodine in my veins, and it feels like an INTENSE heat rush all through your body. When it hit "down there" I swear I thought I had peed my pants, especially cause they make you drink 4 glasses of water first!! Hahaha! It was crazy. It was an interesting day. No word yet on whether I'll work out or not.

The 2nd day we were there was Gavin's appt, and as soon as his doctor looked at him, she said "he's going to need more Lasix" (the heavy duty diuretic he received in the hospital last week). His stomach had swollen up again and got all hard. She gave me the option of having him admitted there at UCLA right then, or promise I would fly home with him first thing in the morning. I chose to fly home! :P She also said if we wanted to do living donor, we needed to make a decision within the next 4-6 weeks. So if we do decide to go down that road...it will be done within the next 2 months (once we decide, the transplant can be scheduled within a week or two, as soon as everyone's schedules can line up). A little nerve wracking to say the least....we have a lot of big decisions to make.

Flight was uneventful once we made it onto the plane. We missed our first flight because we were late getting to the airport, and then I got lost inside and couldn't find the gate. I ended up bawling until a lovely TSA worker took pity on me and walked with me through security and let me cut through all the lines. We missed our flight by 10 minutes, but the worker rescheduled my flight for an hour later and we were all set. Gavin slept the whole way.

By that evening he was once again admitted to the hospital. He has been getting Lasix and Albumin once a day for the last three days. It isn't working as well as it did last time. In fact, its really not working at all so far. :/ He is stuck here till they see some improvement. They have cut back his liquids during the day...he is only allowed 2 ounces every 3 hours. Its not that big of a deal though, he has already been limiting himself because he cant fit that much into his tummy. They are giving him TPN (total__something__nutrition) through his broviac, so he is getting calories that way. Hopefully we'll see some good weight gain.

I am beginning to get used to "living" at the hospital. I've only slept in my own bed 3 times in the last 2 weeks!!!! The one thing that is hard is that they don't have wireless internet, so its hard to keep up with his blog. But hopefully they'll let him go home Sunday. They'll be sending him home with the daily Lasix now, and the nightly TPN.