| March 13, 2004 Saturday Day +9 of transplant Day 17 in the hospital I apologize for the website not being updated in a few days. The system here at the hospital has been giving me problems. Besides a few minor setbacks Paige is going OK. The diarrhea has become a major problem that has resulted in some skin breakdown. The pain is severe enough that they've started her on a morphine PCA that seems to be helping with the diaper changes. The mouth sores are definately getting better and she's had no vomiting for 48 hours. Her appetite seems to be coming around slowly and she's enjoyed a few popsicles, french fries, yogurt, and of course a few sips of coke. I mentioned in the previous update that Paige had a positive blood culture (drawn on March 6th) and was started on antibiotics. We found out Wednesday that the second set of blood cultures (drawn on March 7th) were also positive for acid fast bacilli (mycobacterium). Since it's an uncommon bacteria the specimen is being sent to the state for further testing in attempt to identify the specific bacteria. This type of infection usually occurs in immune comprimised patients and treatment is often difficult and requries prolonged multi-drug therapy. We will keep our fingers crossed that her counts start to rise and with the combination of antibiotics, she will be able to fight off anything major. For those of you curious she's on Amikacin, Vancomycin, Clarithromycin, Meropenem, Acyclovir and Fluconazole. Because of the positive blood cultures she went to the operating room early Thursday morning for removal of her broviac catheter and insertion of a temporary IV (PICC line). They want a few day of antibiotics before placing another broviac, which is needed for long term IV access. Since she has so many different medications running they also placed a regular IV in the same arm. She is such a brave little girl. How did Paige get this bacteria? The air we breathe, the food we eat, the hands we shake, the items we touch - everything we contact in daily life is a potential source of bacteria, viruses or fungi that can cause infection. For a normal, healthy individuals these daily encounters with sources of infection are not a problem. Our bodies' immune systems protect us from infections. For transplant patients, however, it's a different story. Special proteins called antibodies that normally help destroy bacteria and viruses are depleted. Until the transplanted cells engraft and produce new white blood cells, patients are extremely vulnerable to infections. The CT of the chest done in February showed questionable new neuroblastoma cells vs inflammation. To rule out any new inflammatory (infection) process in the lungs they repeated the CT Wednesday,which showed no change. When we arrived in the radiology department we all assumed she would required generanl anesthesia for sedation. We were pleasantly surprised when she cooperated fully with no sedation. The tech was very good with Paige and referred to the CT machine as a spaceship ride. Paige was so cute, when we arrived back to the room she said, "go back, more ride." We were encouraged by her labwork this morning. Her WBC count is starting to rise and she finally has an ANC. This means that the stem cells are most likely starting to engraft, which is reflected in the rise in the WBC. Her hemoglobin was low today at 5.3, so she did require a blood transfusion. Have a great weekend and thanks for taking the time to check on Paige and our family. Love, Andy, Sandi & Paige |
| Labwork March 10th WBC 0.2 (200) Hemoglobin 10.4 Platelets 8,000 ANC 0 *Received platelet transfusion |
| Labwork March 11th WBC 0.2 (200) Hemoglobin 9.0 Platelets 26,000 ANC 0 *Received platelet transfusion for surgery on the 12th |
| Labwork March 12th WBC 0.3 (300) Hemoglobin 8.4 Platelets 77,000 ANC 0 *Received platelet transfusion |
| Labwork March 13th WBC 0.6 (600) Hemoglobin 5.3 Platelets 62,000 ANC 200 (yipee) *Received blood transfusion for hemoglobin of 5.3 |
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