Diary April & May 2002
Apr 7 2002 News: Sorry for the silent treatment. More web site problems--and no time to correct them--prevented us from updating the site last week.
The good news is that Saffy has been doing very well off the ventilator. She still requires supplemental oxygen most of the time, but she's been in a very good mood with no signs of reflux. Her feeding tube was changed from ND to NG (switched from her duodenum--where reflux isn't possible-- to her stomach) on Thursday, and she hasn't had a problem yet.
If she continues to do well, she may be able to come home in a week or so. We're trying not to get too excited, since her four previous extubation attempts failed--the longest lasted 10 days. Today is day eight off the vent, so keep your fingers crossed!
Apr 9 2002 News: Saffy continues to improve and was moved to a regular hospital room yesterday. This is the first time she has been out of intensive care since New Year's Eve. She was breathing fast last night and this morning--a cause for concern--but seemed to improve later in the day. Hopefully no problems will surface, and Saffy will be able to come home soon.
Saffy underwent an echocardiogram last week. Her heart is still enlarged but is slowly returning to normal size. Her valve leak is now described as "trivial."
Apr 10 2002 News: Saffy is still doing well, but respiration and feeding issues continue to be a concern. She is being fed via NG tube and up until this point she was on continuous feeding, where formula is slowly fed nonstop. On Monday, she was switched to bolus feeding during the day, where she is fed a larger amount every couple hours--which is more like how we normally eat. She is still receiving continuous feeds overnight.
Right now, the plan is for Saffy to come home with supplemental oxygen and a feeding tube. However, her doctors want to confirm if she is aspirating minute amounts of formula into her lungs. They have scheduled a milk study for tomorrow and Friday where she will be fed a nuclear contrast agent, so any evidence of aspiration can be detected via x-ray. If a problem is found, she may require another feeding option--such as a G-J tube (surgically inserted through her abdomen). Hopefully that won't be necessary, so she can come home next week.
Apr 12 2002 News: The milk scan found no problems, so things are looking good. Saffy is scheduled to come home next week. (Cross your fingers!) We received her medications today--more than a dozen different drugs--and the oxygen tanks are being delivered tomorrow.
To ease the transition from hospital to home, Saffy will have a home care nurse during the day for the time being.
Apr 15 2002 News: Good news! Saffy was discharged from the hospital this evening and came home for the first time since December. Yay!
You may now uncross your fingers, but please cross your toes to keep her home.
Apr 17 2002 News: Saffy is keeping us busy, so no time for a detailed update. She is at home with supplemental oxygen and a feeding tube (bolus during the day and continuous at night). She currently has a home care nurse for 12 hours per day.
Saffy had her first transplant clinic appointment this morning. The clinic checkup and blood draw at Mount Sinai in NYC is currently twice weekly; but the frequency will be reduced if she does well. Unfortunately, her blood tests showed a very high platelet count, which could be an indication of a problem with her hepatic artery. She will need to return for another blood draw tomorrow to confirm the results.
We're overjoyed to have Saffy at home. She's been in a good mood most of the time with plenty of smiles and laughter.
Apr 18 2002 News: Saffy received another blood test today, and the results were the same (high platelet count). However, her hematologist didn't find evidence of immature or deformed platelets, which would be a sign of a significant problem. Hopefully the count will come down by itself. She will be retested next week.
Apr 21 2002 News: Besides the drill about her platelet count, Saffy continues to do well. She has even gone for several hours without supplemental oxygen at times. In addition to her twice weekly visits to the liver transplant clinic, she has upcoming appointments with pulmonary, cardiology, hematology, and endocrinology. She will require another CT scan next month to watch for angiosarcoma recurrence.
Many have inquired about Poopsie. We're happy to report that he was--coincidently--discharged from the hospital the same day as Saffy. He is doing well but currently requires supplemental honey via BT (button-tummy) tube. His mother has been visiting from the 100 Acre Woods to help Saffy with his care.
Saffy and Poopsie thank all their well-wishers.
Apr 23 2002 News: Saffy is 8 months old today. Three months post-transplant, she continues to improve and has barely been on oxygen for the last couple days.
Apr 27 2002 News: Saffy continues to do well. She has barely needed supplemental oxygen, and her pulmonologist changed it to PRN (as needed). However, her doctors are unsure of the cause of her high platelet count, and are ordering further tests to determine if it's a sign of cancer recurrence.
Developmentally, Saffy is behind but will hopefully catch up. She is about to start physical and occupational therapy at home. Socially and emotionally, she is very responsive, smiles a lot, and sometimes laughs. She gazes at faces and startles easily. She is further behind physically and with language. Her head control is improving, but she is not yet rolling over. She clasps her hands and sucks her hands and fingers. She reaches for toys and babbles. She is also sleeping through the night. Overall, she is probably about two months behind her six month corrected age.
May 7 2002 News: Saffy has been a bit fussy lately, since she's teething. We're attempting to teach her to bottle feed again, but it's slow going, since she has been tube fed for months. After all the problems getting her off the ventilator, we're happy to report that she continues to do well with only room air. She is scheduled for a CT scan later this week to detect any cancer recurrence.
May 13 2002 News: Saffy was not able to undergo a CT scan last week, because the radiologist thought she was wheezing and was worried that sedation could cause her to go into respiratory distress. A CT scan is really the only effective way to detect tumor recurrence, so we are discussing options with her anesthesiologist and other doctors. Hopefully she won't need to be intubated for the procedure.
The good news is that Saffy's platelet count has come down to more normal levels by itself. The not-so-good news is that the FDA has announced that one of Saffy's immunosuppressant medications (Rapamune--also called rapamycin and sirolimus) should no longer be used with liver transplant patients "because it appears to increase the risk for blood clots and death." Saffy's transplant surgeon doesn't necessarily agree with the findings and has left it up to us to decide if she should continue taking it.
Even if Rapamune does have an increased risks of hepatic artery thrombosis (which mostly occurs immediately after transplant), we will probably decide to continue using it because of its potential upside. Some research has shown that Rapamune is not only an anti-rejection drug but also acts as an angiogenesis inhibitor, which prevents the development of new blood vessels. Typically immunosuppressants promote tumor growth but can not be discontinued because the transplant will reject. This is why transplantation has a poor success rate for malignant tumors and why we have been unable to find a single report of a survivor who had angiosarcoma treated with liver transplantation. Saffy has a very high risk of cancer return; however, Rapamune may inhibit the growth of new blood vessels--cutting off the blood supply to any growing tumor. That's the hope at least. Rappamune's anti-cancer capabilities are in the very earliest stages of research.
May 20 2002 News: We decided to continue Saffy on Rapamune. We were heartened to read a promising news report [link updated] today about a different anti-angiogenesis drug. Hopefully the possible dangers of Rapamune will be outweighed by the potential benefits.
Saffy is making significant improvement with bottle feeding. She is still being tube fed overnight (on a slow continuous drip) but is taking her daily feeds via bottle. However, all her medications--currently nine different drugs up to four times per day--are still being given via NG tube.
Saffy had an echocardiogram today, and the results were very positive. Her cardiologist believes her heart has returned to normal and doesn't require further monitoring.
Hopefully all the news will be good this week, because Saffy has been rescheduled for a CT scan in a few days.
May 22 2002 News: Great news! Saffy had a CT scan today, and no evidence of tumors was found. We're overjoyed! Further, she didn't even need to be intubated for the procedure (after much debate by her doctors). She will need another scan in a few months, but this gives us renewed hope that Saffy will pull through. Saffy will be nine months old tomorrow, and everything is looking up!
May 31 2002 News: Saffy is doing wonderfully. She is taking all her formula and medications via bottle, so we removed the feeding tube. She even started eating some baby food.
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