It's been a busy week here at the hospital and there isn't much news to report. Emilia is about the same as she was last week. LIVER Her bilirubin has continued to climb each day to 28.4 yesterday but actually went down one point today. This is the first time it has stopped climbing since she started showing signs of GVHD 3 weeks ago when it was 1.8 and we didn't want to see it go up. It's been a challenge getting her pain under control but Halidol seems to be helping her and they are going to adjust some of the other meds she is taking to get a balance that keeps her comfortable while not completely zonking her out. KIDNEYS She has had dialysis several times and it has helped with the chemical balances/electrolytes in her blood and will continue until her kidneys improve. Her blood pressure, which had been on the high side, is now a little high but much closer to the normal range.EYES The amniotic membrane that was surgically inserted into her eyes came out on the right and dissolved on the left so I had to come in today to sign a consent for them to insert amniotic membrane contact lenses. The doctor who did the surgery said he is early in his career and I am not sure where he came from but has only done about 6 of the surgeries. The surgery is used a lot to treat firefighters who are injured or those w/ chemical burns. Apparently it is not a very common practice in the BMT world and we are VERY lucky that someone at Hershey was familiar with it and willing to do it. The placement of the contact lenses is more common but in this case, being at a university medical center really was a bonus for us. Our transplant team has never had a patient need this level of eye care so we are hopeful that this intervention will give us a chance at some normal eye health for Emilia and reduce the damage to her corneas from the GVHD sloughing off the top layer of the eye. This morning she was able to see shapes and could tell it was us but the contact lense is occluding her vision and she can't see at all for now. SKIN The GVHD of her skin looks good, she is very tan since it started as a sunburn type rash and then darkens. GI The gut GVHD remains unchanged so we are waiting for that to get better but know it can take a lot of time. Waiting seems to be the name of the game at this point, waiting for the gut to heal, waiting for the kidneys to start doing their job again, waiting for the liver to turn around. Our team started a third line agent to shut down the GVHD yesterday since the steroids and immune suppression haven't really touched it. They do not make the decision lightly b/c further immune suppression means a greater risk of infection. As they describe it, dormant viruses can "pop off" and fungal infections can become life threatening. Emilia did not have any fungal infections during transplant and continues to be negative for viruses in the blood, except for one, HHV6 but it responded to the anti-viral for the adenovirus, which is also now gone. She was already at risk but infection now becomes an even larger concern with this third agent. All in all, stable for now with no improvement but no progression either so we will just have to be patient and hope this third drug does the trick. Thanks for checking in.
Wednesday- day 47 in the hospital