Wow...where do I start?? Okay. Let me start by saying that Elise's transplant evaluation is complete. It has been two very long, exhausting, somewhat overwhelming days....but now it's done. The next step is for Dr. Fishman (Elise's GI/liver doctor) to present her case to the medical review board, at which time a decision will be made regarding whether or not to actually list her for a transplant. If she is in fact listed as her doctor expects, she will be given a PELD (pediatric end stage liver disease) score to determine her priority on this list.
So, here's the play-by-play of Elise's transplant evaluation:
9:30 am- Financial Counseling
So apparently there are a lot of transplant- related expenses not covered by insurance, such as copays for at least 10 medications each month, frequent office visit and possibly ER visit copays, daily hospital parking fees, and percentages of medical equipment and supplies that may be needed for such things as home IV meds and/or enteral nutrition. Mary, the financial counselor, suggested we look into COTA (Children's Organ Transplant Association), which is a fundraising organization which basically assists in raising funds for uncovered transplant-related expenses and actually acts as a trustee and manager of the funds, ensuring that the funds are always available throughout Elise's life. As it was pointed out, she will be a "transplant patient" for the rest of her life, and her insurance coverage and financial status may not always be what it is now. I'm still not sure if we will actually get involved with COTA, but it's definately something to think about.
10:00 am- Visit w/ Child Life Specialist- Mary
Our child life specialist seems wonderful!! Basically, her role is to help Elise and her brother, Ethan, understand and adjust to medical procedures and the transplant surgery. She will asset with coping positively with medical experiences and reducing the emotional trauma.
10:30 am- Psychosocial Assessment w/ Social Worker- Barbara
Well, it was sort of interesting being on the "other side" of this social worker's psychosocial assessment. I'm more comfortable being on her end, but it was fine. She asked all the basic questions. I may have gotten a little irritable with her when she began acting as though my anxiety was something unexpected. I pointed out to her that any anxiety I am experiencing is what we call "situational anxiety," which is related to Elise's chronic illness, and quite normal.
11:00 am- Appointment w/ Infectious Disease physician - Dr. Munoz
Dr. Munoz reviewed Elise's medical history, particularly her history of infection and effective treatment. We discussed Elise's history of Cholangitis, urinary tract infections, RSV, Adenovirus, and Pneumonia, as well as the antibiotics that were effective vs ineffective. She recommenders that Elise have her 12-month immunizations early-- at 9 months-- since "live" viruses are involved and will be contraindicated post-transplant.
12:30 pm- Sedated Echocardiogram & EKG
Well, this was the major stressor of the day, for multiple reasons. First of all, Elise had to be put on NPO status, meaning she was not allowed to eat from 6 am until after this test, due to the sedation. She was allowed to drink clear liquids such as Pedialyte until about 10:00 am, but still, Elise was NOT a happy camper. She was sedated with an oral sedative, Chloral Hydrate. About halfway though the echocardiogram, Elise's oxygen saturation dropped to about 80-85 for several minutes. The nurse had to try to wake up up somewhat and was preparing to put her on oxygen when she happily resumed breathing normally again.
2:00 pm- Lab Work
Can I just say that "Carole" in the 3rd floor lab at TCH is AWESOME!! One stick and done...and it was
several tubes of blood!! Elise didn't even cry!!! :-)
8:00 am- Abdominal Ultrasound w/ Doppler
Well, I received the results of this ultrasound this afternoon. It actually showed no evidence of Ascites or Portal Hypertension. Despite these results, her doctor says he still suspects that she is suffering from at last mild portal hypertension, and properly a little Ascites as well. He didn't really have an explanation as to why it is not showing up on doppler ultrasound.
9:30 am- Chest X-ray
As far as I know, the chest x-ray was normal.
10:00 am- Lab Work
I requested the same phlebotomist that we had on Wednesday, because she was really great. Again, she got Elis's blood quickly, with just one stick. We will be requesting "Carole" from here on out.
10:30 am- Meeting w/ Transplant Coordinator- Julie
Very informative meeting. She reviewed a very handy, dandy little book which attempts to predict and explain a multitude of questions regarding the transplant process. I have a copy of the book for reference at home. It's quite good...and very well-written...however, there are still SO many questions/ answers that it does not even begin to address.
2:00 pm - Meeting w/ Hepatolgist- Dr. Fishman
Dr. Fishman reviewed the test results which are in at this point and then went over the "informed consent," which I signed. He patiently talked to me for over an hour and provided very good responses to all of my questions. It was a good visit...and it was the most that I have ever heard him talk. He obviously feels very strongly that listing Elise for transplant is the best treatment plan at this point....and I bet that if he presents his case to the medical review board like he presented his case to me this afternoon, they will vote to list her, despite her decent labs and ultrasound. Also, he pointed out that Elise will need a "split liver" transplant, as opposed to a "whole liver" due to the fact that she has bowel malrotation, a condition related to Biliary Atresia, as is "polysplenia," another condition found with Elise. I was not very happy to hear about this, as "split liver" transplants are a little more complicated due to being associated with a higher risk of bile leaks, etc.
So, here's the play-by-play of Elise's transplant evaluation:
Wednesday, May 16--
9:00 am- Meeting w/ Dietician- Stacey
Yay! Elise actually got a GOLD STAR from Stacey- she has been gaining approximately 35 grams/day since her last appt 3 weeks ago, which is an excellent trend! Elise now weighs 14 lb 6.5 oz. She is 25 in long, and has a head circumference of 43.5 cm. From a weight-age perspective, she is now in the 15th percentile!! So, I suppose the NG tube is doing the job....but that doesn't mean I have to be a fan. As it was explained to me, her nutritional status is so critically important to her recovery post-transplant, that the best plan is for her to keep the NG tube in place until the time of transplant. While we're on the subject, her overnight feeds via NG tube have been increased to 40 mL per hour x 12 hours....just in case anyone is interested in the details.9:30 am- Financial Counseling
So apparently there are a lot of transplant- related expenses not covered by insurance, such as copays for at least 10 medications each month, frequent office visit and possibly ER visit copays, daily hospital parking fees, and percentages of medical equipment and supplies that may be needed for such things as home IV meds and/or enteral nutrition. Mary, the financial counselor, suggested we look into COTA (Children's Organ Transplant Association), which is a fundraising organization which basically assists in raising funds for uncovered transplant-related expenses and actually acts as a trustee and manager of the funds, ensuring that the funds are always available throughout Elise's life. As it was pointed out, she will be a "transplant patient" for the rest of her life, and her insurance coverage and financial status may not always be what it is now. I'm still not sure if we will actually get involved with COTA, but it's definately something to think about.
10:00 am- Visit w/ Child Life Specialist- Mary
Our child life specialist seems wonderful!! Basically, her role is to help Elise and her brother, Ethan, understand and adjust to medical procedures and the transplant surgery. She will asset with coping positively with medical experiences and reducing the emotional trauma.
10:30 am- Psychosocial Assessment w/ Social Worker- Barbara
Well, it was sort of interesting being on the "other side" of this social worker's psychosocial assessment. I'm more comfortable being on her end, but it was fine. She asked all the basic questions. I may have gotten a little irritable with her when she began acting as though my anxiety was something unexpected. I pointed out to her that any anxiety I am experiencing is what we call "situational anxiety," which is related to Elise's chronic illness, and quite normal.
11:00 am- Appointment w/ Infectious Disease physician - Dr. Munoz
Dr. Munoz reviewed Elise's medical history, particularly her history of infection and effective treatment. We discussed Elise's history of Cholangitis, urinary tract infections, RSV, Adenovirus, and Pneumonia, as well as the antibiotics that were effective vs ineffective. She recommenders that Elise have her 12-month immunizations early-- at 9 months-- since "live" viruses are involved and will be contraindicated post-transplant.
12:30 pm- Sedated Echocardiogram & EKG
Well, this was the major stressor of the day, for multiple reasons. First of all, Elise had to be put on NPO status, meaning she was not allowed to eat from 6 am until after this test, due to the sedation. She was allowed to drink clear liquids such as Pedialyte until about 10:00 am, but still, Elise was NOT a happy camper. She was sedated with an oral sedative, Chloral Hydrate. About halfway though the echocardiogram, Elise's oxygen saturation dropped to about 80-85 for several minutes. The nurse had to try to wake up up somewhat and was preparing to put her on oxygen when she happily resumed breathing normally again.
2:00 pm- Lab Work
Can I just say that "Carole" in the 3rd floor lab at TCH is AWESOME!! One stick and done...and it was
several tubes of blood!! Elise didn't even cry!!! :-)
Thursday, May 17
8:00 am- Abdominal Ultrasound w/ Doppler
Well, I received the results of this ultrasound this afternoon. It actually showed no evidence of Ascites or Portal Hypertension. Despite these results, her doctor says he still suspects that she is suffering from at last mild portal hypertension, and properly a little Ascites as well. He didn't really have an explanation as to why it is not showing up on doppler ultrasound.
9:30 am- Chest X-ray
As far as I know, the chest x-ray was normal.
10:00 am- Lab Work
I requested the same phlebotomist that we had on Wednesday, because she was really great. Again, she got Elis's blood quickly, with just one stick. We will be requesting "Carole" from here on out.
10:30 am- Meeting w/ Transplant Coordinator- Julie
Very informative meeting. She reviewed a very handy, dandy little book which attempts to predict and explain a multitude of questions regarding the transplant process. I have a copy of the book for reference at home. It's quite good...and very well-written...however, there are still SO many questions/ answers that it does not even begin to address.
2:00 pm - Meeting w/ Hepatolgist- Dr. Fishman
Dr. Fishman reviewed the test results which are in at this point and then went over the "informed consent," which I signed. He patiently talked to me for over an hour and provided very good responses to all of my questions. It was a good visit...and it was the most that I have ever heard him talk. He obviously feels very strongly that listing Elise for transplant is the best treatment plan at this point....and I bet that if he presents his case to the medical review board like he presented his case to me this afternoon, they will vote to list her, despite her decent labs and ultrasound. Also, he pointed out that Elise will need a "split liver" transplant, as opposed to a "whole liver" due to the fact that she has bowel malrotation, a condition related to Biliary Atresia, as is "polysplenia," another condition found with Elise. I was not very happy to hear about this, as "split liver" transplants are a little more complicated due to being associated with a higher risk of bile leaks, etc.
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