Lauren was not too keen on the idea of taking her "tubies" out. We had mentioned it to her a few times so it wouldn't come as a surprise. She kept asking why. I told her that there was a very tiny yucky bug/germ in them and that if the "medicine" didn't get rid of it then we would have to take them out so she wouldn't get sick again. At first she got upset. Then one day she looked at her lines and turned to me and said "but mommy my "tubies" don't look yucky ....they look fine and I don't have a fever anymore so the medicine IS working." Then she would say "but I like my "tubies" I'll miss them." Some people may think this weird but you have to remember that Lauren was only 19 months old when she got the central line and has had it for almost 17 months, so unlike the older kids she doesn't remember what it's like NOT having "tubies".
By the time Tuesday came she had adjusted to the idea and was ok with it. She even asked the doctor, on the way to the operating room, if she could keep them and take them home with her.
Once her line was gone we no longer had a permanent IV access so they put a regular (peripheral) IV in her hand (which Lauren was not thrilled about) to continue the antibiotics. We couldn't go home with this IV and since I really didn't want to hang around the hospital for another week (no offense guys!) I asked for a PICC line to be put in. This is similiar to the old line in that it goes directly to the heart but it is a single line in the arm, much smaller and only temporary (2-3 months). So on Wednesday, Lauren was sedated in the PICU for the new line. Afterwards they told me that she would probably sleep for a few hours due to the fact they had to give her a whopping dose of sedative because she kept fighting them. But, true to form, Lauren was back in her room within 15 minutes of waking up, fighting the drugs and consuming large amounts of food!
So now that we had a more permanent line we were free to go. She's home on 2 antibiotics which she gets every 8 hours for the next week. She also started her 4th cycle of Accutane this past Saturday so we have another 10 days to go with that. We have to go to the Valerie Center next Thursday for another blood culture and counts then over to the eye doctor for a checkup. And next Friday we go back to the orthopedic to check her back. Then on Monday the 9th we head back to the city for round 5 of antibodies. Whew ..... is 6 weeks up already?? Where does the time go?
I have to say, being inpatient wasn't high on my list of things to do this month but it was really great to see everyone on the floor. A lot of them haven't seen Lauren since transplant in November and were amazed at how great she looks. Judy and Diane from the radiation dept both came up to see us. Thanks guys! I also had the chance to "catch up" with a lot of people and to meet some new (well new to me) families at the Valerie Center.
I hope everone has a safe and happy 4th of July!
Thanks for all the thoughts and prayers!!
