News and Other Updates
Hello! I hope that you're all enjoying this bleak and cold winter weather. I do not like the cold, but I do love the sight of the snow. I just don't really care to be out in it. Celtan has really been enjoying all of the snow, and he and Jason built a snow castle and a snowman in our back yard. We just have a few updates that we wanted to share with our followers. I cannot believe that the blog has reached over 5000 page views. It is amazing to me that we have so many people checking and rechecking the blog for updates and to learn more about our journey with Elizabeth. We appreciate all of you!
Insurance Company:
On January 28th, Dr. Vigliotti's office (Elizabeth's Pediatrician) called to let me know that they had received word that UPMC Health Plan had granted our First-Level Grievance and had agreed to pay for the Microarray Genetic Testing. We were thrilled, because this testing is going to be really important for us to get answers regarding Elizabeth and her many medical and special needs. So, I spent the afternoon calling and letting her team of doctors know that the testing had been approved. Her DNA has been waiting in the lab since November when the test was ordered, and now Neurology could tell the lab to go ahead and perform the Microarray testing. Her neurologist, Dr. Safier, ordered the testing, and so the lab would need for his office to notify them to go ahead even though it is a genetic test. However, I received a call later that day from Dr. Safier's nurse. She informed me that she could not contact the lab without written verification from the insurance company.
I had to call UPMC Health Plan to get some kind of written verification about the testing. So, I called and after being put on hold for approximately 30 minutes on and off, I was finally transferred to someone who could help. I was very upset, and less than kind, because I found out that they had reached a decision on the Microarray Testing on January 6th. It was the 28th of January. I had called them at least a dozen times to check the status of the grievance between the 6th and the 28th, and each time I was told that they had not reached a decision yet. Furthermore, my anger at the insurance company increased, as did my blood pressure, when no one could explain to me why I had not received notification from them in writing of a decision that was made by them 22 days earlier. The customer service person also agreed that she could not understand why I had not been notified. I told her that I needed verification today, and that she had five minutes to have a copy of the letter sent to my email or faxed to me, and that I would be on the phone with her until I received it. I also said that I wanted a copy mailed to me. She did email me a letter immediately. I received a written letter from UPMC yesterday in the mail. I printed the email copy of the letter and faxed it to Neurology. They then sent the verification to the lab, and the testing is currently in the process of being done.
Their inefficient and inept handling of our grievance really upset me. It takes a lot to make me as mad as I was at UPMC Health Plan. However, as far as I'm concerned, their careless and inept handling of the notification process cost us weeks and precious time in regards to the medical care necessary for Elizabeth. I don't mind waiting for them to make decisions about expensive testing, but I do mind them waiting three weeks to notify us about their decision. Especially since if I had not called, and if the Pediatrician's Office had not notified me, then we STILL may not know that we had won the appeal. The other frustrating thing to us is that this Microarray testing will take 4-6 weeks for us to get back. If they had notified us promptly when they had made their decision we would be getting results back any day now. There is really no excuse for them wasting precious time.
I also recently found out that another local special needs parent also had a similar issue with UPMC Health Plan. She was notified two weeks ago that her child's genetic testing had been approved in NOVEMBER! That's right, in JANUARY she was sent a letter stating that they had made a decision in NOVEMBER. This family has been waiting all of this time for notification, and again their inept handling of notification on grievances made a family needlessly wait and waste precious time for answers for their child. So, I drafted and sent them a scathing letter about my disgust and recent experience. I encouraged this other mother to do the same as well.
On a positive and happy note, we are getting closer to more answers for Elizabeth. Also, I was informed by Genetics that it is rare to win a first-level grievance on genetic testing, and that we should be pleased. I am pleased that the insurance company made the right decision. I just wish they had been more timely in their notification. The moral of the story is that persistence pays off!
Gastroenterology (GI)
We did receive more good news from her GI doctor, Dr. Lindblad. He called me on Friday evening. Dr. Lindblad reported that Elizabeth's remaining stool samples came back normal. Also, he decided that we are going to push the scoping back at this time. He had wanted to do an upper endoscopy and colonoscopy to check her digestive system for signs of inflammation and other abnormalities that may be causing the diarrhea and failure to thrive. He does want to do these tests in the future, but since she has again had so many viruses recently he wants to hold off until she has a period of good health. Dr. Lindblad said that this would ensure that any abnormal findings would not be due to her digestive tract being irritated by a virus. It was so nice to receive a phone call from him, especially on a Friday night after 6 p.m. It means a lot to us when the doctor's themselves take time to personally call us.
Hematology:
I did speak to Dr. Cooper, her Hematologist, last week as well. Right now, we are not going to follow up with Hematology on a regular basis. We will do so if her anemia becomes more frequent or other issues arise. He did say that when she reaches adolescence/ adulthood that she should not have any products with estrogen due to her Factor V Leiden. Estrogen produces increases chances of developing a blood clot, and so does her having Factor V Leiden, so it is recommended to avoid estrogen products. Dr. Cooper also reinforced a discussion that I had previously with Dr. Larkin (her Immunologist). He said that they have marked in her permanent record that if Elizabeth should ever need to receive a blood product that it needs to be cleaned first. Since she has low levels of IgA, which is an immunoglobulin, she is at a higher risk for adverse reactions to receiving blood products. Cleaning the blood products first helps to reduce the risk of a severe reaction to receiving a blood product. So, hopefully she never needs a blood product, but if she does it is something that we will need to alert medical professionals to and remind them that it is in her chart, if they didn't already see it.
Consults and Trips Scheduled for this Summer:
Due to the recent and overwhelming flood of generosity, the amazing people who surround us (ALL OF YOU) have made it possible for us to take Elizabeth to some important consults at leading Children's Hospitals in the country at Boston and at San Francisco. Her physicians at CHP have recommended consults with them due to their expertise in some of Elizabeth's areas of medical complexity. I have been working on scheduling appointments in both locations. So far we will be seeing the following providers this summer:
Boston:
Dr. Janet Soul, Neurologist/ CVI/ White Matter Disorders in the Brain Specialist, June 17th
Dr. Andrew MacGinithe, Expert Immunologist, June 18th
San Francisco:
Dr. Elliott Sherr, Neurologist/ Corpus Callosum Deficits Expert, June 22nd
Dr. William Good, CVI Expert/ Pediatric Ophthalmologist, June 24th
Dr. Morna Dorsey, Expert Immunologist, June 24th.
There may be additional providers added to those lists, especially as we learn more through the genetic testing. There may also be additional scanning or testing done at both locations. Both locations have been so cooperative in helping us to coordinate multiple appointments over those dates. We are looking forward to taking Elizabeth to these experts to gain their insight into her many issues. We cannot thank you all enough for your love, support and prayers for making this all possible. We truly, truly appreciate it.
More Movement and Improvement:
Elizabeth received her Gait Trainer this fall. We had an evaluation at the Children's Institute to get a gait trainer for Elizabeth to provide her necessary assistance with being upright and walking. Her hypotonia and other neurological issues prohibit her from standing or walking on her own. The gait trainer is like a scientific baby walker that gives Elizabeth support to gives her the ability to try to walk. The insurance company did pay for the gait trainer, which was great. It is clearly a piece of adaptive equipment that increases her quality of life and promotes her independence. She does take steps in her gait trainer, has walked across our dining room floor in it, and she sometimes just likes to stand in it. Jason and I love to see her face when she is in her gait trainer. It is an incredible feeling to see how proud she is that she is standing and walking. I've included some pictures below so you could see her in her gait trainer.
Elizabeth has also been attempting to crawl on more occasions, which is great. The Periactin, which is the medication that the GI doctor gave her to stimulate and increase her appetite, seems to be working. It definitely makes her sleepy, which is good for her. She has never been a good sleeper, but has mostly been sleeping all night since we started the medicine. Elizabeth also seems to have an increased appetite on most days. There are some days when she has very little interest in eating, but on days when she is hungry she eats or wants to eat a healthy amount of food. We are glad to be seeing this improvement in her appetite.
We are continuing to give her Pediasure to help her gain weight and to replace milk. Elizabeth coughs and chokes while eating less with the Pediasure, because it is thicker than milk. She cannot have any other liquids at this time, because until we have a second swallow study in March other liquids are still considered unsafe and an aspiration risk. She also still only uses a bottle with a medium flow nipple. Anything that flows faster, especially sippy cups, are a major aspiration risk for her. So, the only thing she drinks from is a bottle, because nothing else is safe. The Pedisure does a good job of keeping her full, which is good. We are seeing small gains in weight, but the doctor's and nutritionists would like to see bigger gains. Right now, she is averaging around 3 ounces of gain per week. It is better than 3 ounces of loss, but it would be even better if it were a greater gain than 3 ounces. So, we have started adding a calorie supplement called "Duo-cal" to her foods. This gives her approximately an extra 250 calories per day. We can mix it into her food and liquid, and she seems to tolerate it well. Here is a picture of our princess in her princess slippers eating her favorite snack: Gerber Puffs.
We were also finally able to get her Pediasure covered by her Medical Assistance, which is great. It is about $40/ case, and we go through about a case per week. This is very helpful to us financially. The insurance is covering it, because the Pediasure is considered to be medically necessary to help with her poor and slow weight gain and growth. There is a possibility that if the Duo-cal supplement helps with weight gain that we may be able to get it covered as well, which would help because it is also expensive. However, no matter how expensive, we will continue to give her whatever necessary and recommended to help her weight gain. We want to avoid the G-Tube if at all possible, although some days it feels like a losing battle.
Thank you for reading, following, and for your thoughts and prayers. I leave you with a few other pictures of sweet Elizabeth. Enjoy your day!
No comments:
Post a Comment