Since Daddy was let go from his job, we have been doing a lot of thinking about what to do next. Should he find a job here in Texas or do we take this opportunity to move closer to family? More specifically, do we remove Hannah out of the care of local wonderful doctors, especially her amazing pediatrician and wonderful infusion nurses, in order to give our family the support that we don’t have here, a chance for the kids to grow up right by the grandparents, aunts, uncles, and cousins?
That is really what it comes down to.
At one point, we were just an easy flight away. But now, with Hannah’s illness, nothing is easy anymore. We have a few friends here, but I think at this point, especially since we know that Hannah’s disease course is progressive, that we all need to have our family close by. Especially the kids. If something were to happen, just being able to drop them off at the grandparents house or aunt and uncle’s house would just be so reassuring. Having the kids grow up with their cousins, especially being able to see them all the time, would be wonderful. Even for Hannah, who will have two younger girl cousins to grow up with and socialize with.
But it definitely comes at a cost. We are leaving such a top notch medical community. As silly as it may sound, losing our pediatrician, Dr. Bhakta, scares me so much more than I realized. He is truly a gift to our family, someone who I know is there for our kids without question and always with honesty and an open mind. We also will be losing the TCH infusion staff nurses, the ones who have saved Hannah from getting a port surgically implanted because of their skill and caring. We also would be losing Dr. Roy, Hannah’s ENT, who is one of the best in the country and who truly seems to care about Hannah’s progress and care.
Las Vegas, where my inlaws live, is going to be a medically difficult situation for us. They have no lysosomal storage disease program in any of the hospitals (of which Gaucher is one). They just don’t have medical team with the expertise and experience that we have at Texas Children’s Hospital. Lastly, will we even be able to find a pediatrician who is half as good as Dr. B?
We also have to start all over with Medicaid and other special needs services. Just trying to figure out the Texas maze of how to get Hannah’s services was a chore. Now we have to start all over again in a new state, new city.
The bright spot is that the doctors at the National Institute of Health and Dr. Schiffmann will still be our backbone and have agreed to help out however they can. We plan to go to the NIH every 6 months, and we will be seeing Dr. Schiffmann in Dallas (just a plane ride) every 6 months. This way, Hannah will be seen by a Gaucher expert every 3 months. They also recommend us getting in touch with a expert team in Los Angeles that they are going to help us find.
You know, it is just such a hard decision to have made. I know that moving closer to family is going to be such a huge and wonderful thing for our family, especially all the kids. But I just hope I’m making the right decision and can find the right new medical team in Las Vegas to give Hannah the attention and support she needs.
maybe you should have robert look for jobs and see what comes up? may even get a relo package???
moving is always such a hard decision, but the medical issues make it worse. But yes, being near family now would benefit all of you.
xoxo
Family will be key, I’m sure of it. You’ll find another great team for Hannah, afterall, you’re the head of this team and look at what you’ve put together.
.-= Melissan´s last blog ..Private Disability Insurance and Social Security Disability Benefits =-.
I have a fantastic Gaucher Doc in LA. He treats about 80 gaucher patients and is one of the most kind and caring docs I have ever met. Check out Gaucherwest.com if interested.
Hey Care Bear,
When we left Oregon we had the same decision to make. Family or care. My husband has Crohn’s disease. We were thinking of going to UC Merced but there was not a hospital or any specialists for hours around. We are 4 hours away from Jack’s parents and 4 minutes from his specialists. I do make a trip to the inlaws about every 6 weeks or so, depending on the sport season! But I do know that they will be here asap if I needed them to. We made a list of what we needed in a city/town and Davis fit almost perfectly. I will be praying for you and your family as you make this difficult decision! love to you and your family!
Check with Cyndi at the ngf…she can help guide you too. Good luck!
Family support is SO valuable. I don’t think you’ll regret your decision. Let me know if there is anything I can do. I’ll be only 6 hours away! 🙂
.-= Cristina´s last blog ..Discovering the Unseen Risks of Genetic Diseases =-.
I think it would be worth it stay for Dr. Schiffman, maybe I am partial because I know him personally. I do not know much about Texas, if you want good Gaucher doctors you should move the North East, if you want the truth. I don’t know of any in California, not that their isn’t. If you could get a job in Philly, Pittsburgh, NYC, Washington, New Jerse. You want to move somewhere with a top medical school Baylor is in the top ten. As for the North East and Mid Atlantic states these places have doctors I know…personally and or i just know of. If you want to move somewhere where there are doctors you can get a list form the NGF…if you move to say PA, Maryland, New York. She will automatically be subsidized by the children state health insurance. I don’t know how Texas medicaid works, but simply being a child intitles you for health insurance in Pennsylvania. All children are covered by the states health insurance program. The same i know is for New York, and New Jersey. I don’t know if that helps you. What kind of Job does your husband want?
I am not sure I could do that. Leaving outstanding medical care and going to a place that does not have as good as you have now. For the flights who is to say she may not be well enough at some distant point she can’t fly normaly.
Family support is a great thing, but what if you cant get quality care, or doctors that care as much as they do here since they know her so well. Getting set up with a new doctor and having to start all over, they might not be as accomadating as they are where you are at. I will support your choices I am just trying to give you another point of view which I know you have already looked at but may need to be really prayed over. Have you done any research on doctors, and the like there yet?
I totally understand the need to be near family. Praying for some great Dr’s for Hannah!
.-= Deborah´s last blog ..Welcome to FeedBurner =-.
You know that you always have a place to stay when flying out for Dr. S!
I think once you move, you are going to feel a big relief just having others to help carry the load. I am sure they are grateful that they will be able to help and be a more active part of the kid’s lives.
Your doctors will help you find the best care and be a resource to them and you as needed. {{{{{hug}}}}}
Carrie, I know the struggle you are facing, as we were facing that this time last year. Richie was out of work for six months and I, too, worried about the insurance and the possibility of a move out of state. I didn’t want to give up our doctors here and start “fresh” with ones who do not know my daughter. All I can tell you is that in the end, Richie did find a job and we didnt have to move, but in terms of insurance, our change in insurance was a blessing. I always feel that God opens doors that at the time seem almost impossible to open, but in the end they usually end up serving some need. In terms of the family, I can’t imagine being anywhere else but right here with my family. It is such a blessing to know that Cameron is taken care of whenever we have a need with brooklyn, and above all else, that brooklyn knows she is loved and accepted unconditionally by the people who matter the most. My main goal for Brookie is to give her a life where she is happy and loved and by golly living here In Asutin she has that because she is surrounded by family. Medical needs are important, but ultimatey love and support in my opinion rank the highest on the scale of what I and what my daughter needs the most. You will make the right decisions for you, and for your family and for Hannah. There are wonderful medical facilities in California (I grew up in Southern California), and I am almost positive that your doctors here will make sure you are set with new doctors for Hannah’s sake. Anyway, you are in my thoughts!
.-= Laura Romero´s last blog ..Our Little Star =-.
That IS such a hard decision, but family and friends will make all the difference. I wonder….could your present circle of care facilitate co-treatment with doctors there? If they wanted certain tests done etc, could they contact your chosen doc in your new neighborhood to have the tests done? You said that it’s a short flight away….I’m not certain how often you meet with the docs, but could you fly there when needed?
I can hook you up with the BEST doctors here. That said, many many doctors are not at all good here. We have never found a general ped we like. But we really don’t use them much here. General peds are for people who have nothing wrong with them in Vegas life. We actually use our NIH doc for coordinating care. Alfreda Maller for nuerology. The hematolgists name is escaping me right now but she’s lovely as well. Her first name is Nic though. She works a Childrens Cancer Center on Maryland Parkway. She works at a great trasfusion center with awesome vein finders. You probably want to live reasonably close to UMC. People will tell you that other hospitals are better and they are certainly more pretty and have a higher class of patients but UMC is the only place qualified to treat high needs kids. Its easy to get medicaid going here, so don’t stress about that.
FWIW, I think you are doing the right thing. Its almost impossible to raise a medically fragile kids without family around when you have other kids. I know when DD was in the hospital for 6 weeks, we had to fly family in to help because there was just no way we could make it work.
I sent you my contact info on facebook. Feel free to call!
I have followed Hannah’s story for quite a while. She is such a lovely and precious child. I live in Las Vegas–have been here for three years. This city grew very, very fast between 1997 and 2007. The medical community did NOT in any way keep up with the growth. The other issue you raise is MEDICAID. This state is at the present time cutting resources to every agency possible to try balance an $800,000,000 budget deficit. Education is on the chopping block. Unemployment is at 13+ percent–almosts NO construction is going on. I hate to be so negative but I want you to know the truth before you make this huge decision.