Saturday, December 27, 2008

Back at Children's

So, here we are back at Children's. We had been meaning to update again, but we've been pretty busy with Christmas and trying to get organized at home. Keegan has been throwing up at least twice a day since we came home, and his dirty diapers had gotten worse. We would tell the transplant coordinator every time she called, but we kept attributing it to the stress of adjusting to home. Additionally, the home healthcare company sent the Neocate Junior instead of the Neocate Infant formula he was on at the hospital. The only difference is a higher concentration of vitamins and minerals, but we thought it may have been enough to cause a little stomach upset. We weren't afraid Keegan would get dehydrated because of his TPN/lipids. On Christmas Eve at Maddie's parents' house, Keegan threw up right as we were getting ready to leave, and on Christmas Day at Gray's parents' house, he had an accident while opening up presents that wiped out his and mom's clothes. We were starting to get nervous, but he didn't have a fever yet. His drippy nose that started a few days before he was discharged from the hospital seemed to get a bit worse, so we cranked up the humidifier and put his crib on a slant to help him drain. We held tight, just letting the transplant coordinator know what was going on each day. We were up to our elbows in toys, Christmas presents, medications, and medical equipment, and we continued to hope it was just the stress of being home again that was throwing him off.

Yesterday, he threw up about 5 times, and by 5:30pm, he was quite fussy. Gray picked him up for a cuddle and called me in to take his temperature. It was 100.8. We don't have to call the transplant team until he reaches over 101. Well, 10 minutes later, he was 101.6. We waited 10 more minutes, and it had climbed to 102.5. We had the team paged, and by the time the transplant coordinator called back with a plan 15 minutes later, his temperature had reached 103.6. The spike in fever got everyone on edge, and we were told to bring him across the street to the Legacy ER. As Gray was loading him in the car, he threw up everywhere - all over Gray, himself, his car seat, the car. He was tomato red all over his body and just radiating heat. It took two doses of tylenol and a good bout of screaming bloody murder while they reaccessed his port to get get his temp down even a little bit. We reaccessed him because there was a slight tear in his port dressing, leaving him open for a severe infection. He fell asleep when that was over and broke into a clammy sweat as his fever came down into the upper 99s.

The ER team drew blood cultures and a blood count. The epogen we started last week has bolstered his red counts up a bit, not to normal levels but better than when he was discharged - VERY encouraging! However, he was back down to the extreme neutropenia (ANC was below 70 this time), so his hem/onc doctor decided he needed to be admitted. This is new for us to be admitted by someone other than his transplant team, and at first, we were told he would be taken to the hem/onc floor downtown, not the cardiac floor. The transport team came to pick Keegan up at about 11pm from Legacy ER and take him by ambulance downtown. Maddie had to ride in the front of the ambulance, so needless to say, Keegan was not happy - that is until the team popped in a Bob the Builder DVD, and the nurse gave him her badge and pager to play with during the ride! When we arrived, they found out he would in fact go to the 8th floor (cardiac, yeah!!), and they were even going to put us back in Keegan's old room. The charge nurse stopped us as we were loading back into his room and said she thought a different room might bring him better luck this time! All the night nurses came in to say hi. He was discharged Tuesday right before they came on, so they joked that if he had wanted to see them, he only needed to visit, not be admitted!

We struggled getting his fever down until about 5am. He's still having some tummy upset and is pretty drained of energy, but he can turn on the flirting immediately when his favorite nurses walk in. He's on IV maintenance fluids until they can get his TPN here tonight, and they started him on a broad spectrum antibiotic last night. His RSV and viral studies came back negative this morning. We are still waiting on his bacterial cultures for another 36 hours (earliest discharge would be Monday morning probably). The hem/onc attending came in to see him and said they will be starting him on another round of GCSF (the white blood cell stimulator) today. Blood counts will be drawn daily until his numbers come back up. The transplant team checked on him this morning, but they said he is hem/onc's patient until he tests positive for something that could affect his heart. In all honesty, he likely picked up the stomach bug that was going around the hospital for the last few weeks.

Thank you for keeping Keegan lifted up in prayer. We are so thankful to have been home for Christmas and to be blessed with so many friends, family, and loved ones that care so much for our precious Bug. We hope your Christmas was wonderful and slightly less uneventful than ours! ;)