The Learning Curve - An Update on Sarah

As a good amount of you know, Sarah was hospitalized again last Wednesday because she was losing her vision again. We came home from the hospital yesterday, and are enjoying being home immensely. The power of home has always had a strong pull on our hearts, but ever since Sarah's diagnosis that tie has only strengthened.

I feel like I have learned a lot in the past week, and that I am getting better and better at knowing not only Sarah's disease, but the way that hospitals and doctors work (or in some cases - don't work). Here are some of the things that I found particularly interesting:

1.) Not all hospital's are created equal. Sarah has been to both Akron Children's Hospital and The Cleveland Clinic. Most people would assume that the Cleveland Clinic would be the, hands down, better hospital, but I did not find that to be the case at all. Now, let me say that the Cleveland Clinic is an awesome place for a lot of people, and many, many, many people that I know, and have talked to have had wonderful experiences there. What I am about to say, is just my opinion based on my experience, and nothing more, so here goes nothing:

• There is a pecking order at the Cleveland Clinic that I did not find at Akron Children's. To me, a pecking order means that one doctor (or doctors) feels that he/she is superior than the others that they are working with. I came into contact with these doctors in droves as they congregated in Sarah's room most mornings to discuss things with my family related to Sarah's care and upcoming schedule. If someone feels and acts more superior than someone else I get the impression that what the "lesser" doctor has to say is valued less in the "higher" doctors eyes. I don't like that. I don't like that because sometimes doctors with a lot of experience get so set in their ways that they over look the individuality of each patients case and clump everything into general terms based on the entire population that a doctor has treated instead of seeing Sarah as an individual with needs that may be different than said doctors other patients. Whereas a newer doctor hasn't developed that "experience" yet and can see Sarah for what she is - a unique and individual person. A newer doctor might also be open to new ideas and studies and medications that might benefit Sarah. A pecking order also makes me, as the mother of a patient, feel like there is not uniformity and ease among the staff. I don't like that either. I want to know that everyone is on the same team - even if each person has their own opinions - I don't want to feel like there are competing interests that are trying to treat my child.
• The Cleveland Clinic is too big for my liking. Sarah had to have another MRI while at the Clinic and was told that she could not eat beyond midnight the night before her MRI, and could not drink past 8 am on the morning of for a 1 pm MRI. I thought that was a bit ridiculous to ask of a child, but I agreed. Sarah was hooked up to an IV and received fluid so that she would not become dehydrated. Her 1 pm MRI ended up being pushed to 5 pm because there too many patients that needed an MRI that day. This should have NEVER happened. The Cleveland Clinic should have enough equipment that they can service all of their patients in a timely manner - especially a child. Sarah's MRI was 2.5 hours, plus an hour in in the recovery room because she was put under general anesthesia, so she didn't end up eating until 9 pm that night. She had gone 26 hours without food. I wonder if her MRI would have been pushed back even longer if I had not had a mini meltdown at 3:45 (after MRI had been pushed back for the second time), and told the nurse that if someone didn't come get Sarah for her MRI by 4 pm Radiology could just reschedule it because I was taking my daughter to get something to eat. (Thank goodness for the great nursing staff we had because at 4 pm a wheel chair and doctor came up to take Sarah to her MRI which still didn't start for another hour after all of the hoopla that needs to take place to prepare a person for one of those.) I feel that if the Clinic has more patients than it can take on then it should either lessen its caseload or buy more equipment. An 8 year old should NOT have to go through what she went through for that.
• The Cleveland Clinic (unlike Akron Children's) does not provide private rooms. Sarah was lucky enough to not have to share a room, but twice during her stay she was informed that she most likely would be getting someone put into her room because they were running out of space to keep patients. People are in hospitals for very private and different reasons. I don't think that anyone should ever have to share a room. I don't care about the room size - even if the room is tiny - as long as it is private I am happy. I feel so strongly about this issue that I will not go back to the Cleveland Clinic if I have a choice. I would much rather take my daughter to Akron Children's where we have privacy, and are in a place where, for the most part, only children are staying.
• I will say that I LOVED almost all of the nursing staff at the Cleveland Clinic. There was absolutely no pecking order among the nursing staff, and I found Shannon, Stephan, Ali, Alison, and our favorite nurse, Amanda to be the most amazing group of care givers (outside of Natalie who works for Child Life in the ER at Akron Children's) that we have had. They were all hands down amazing people. They made Sarah's stay manageable, and they all kept us from losing our minds and going crazy at certain points during our stay.
• I also really like the neurologist who is overseeing Sarah's care at the Clinic. He is a good doctor who explains things in a way that I can understand, and takes as much time as needed to make sure that we are informed about Sarah's care.

2.) Because there is not a lot of information about childhood MS (particularly in children among Sarah's age group) I will essentially need to earn a doctorate in Sarah's disease. There are no true experts, I have found, especially since so much is still unknown about MS. Doctors generally take the information that they have on adults with MS, and play around with it to try and match it to children the best they can, but in the end it is still a guess. MS is so tricky and individualistic that our family will have a more intimate view of what her disease looks like than any doctor. Therefore, when a treatment is recommended or a condition is diagnosed it will be up to Bob and I to determine if that seems right for Sarah. I have had a doctor tell her that she didn't have MS, but rather, ADEM, a more common disease in children that mimics MS symptoms., and then that same doctor changed his mind after testing her and determined that she did indeed have MS. I have had 2 doctors tell us that Sarah has Optic Neuritis, and 1 doctor tell us that she is fine, has no eye damage, and he wasn't sure why we were even told to come see him. (I almost punched this guy in the damn face). We are her advocates and we need to make sure that we are looking out for her best interests. Doctors are trying to help her, but I wonder about whose interests some of them are looking out for, and after a particularly incredible appointment this weekend (and I don't mean that in a good way) I feel very confident in telling a doctor to go sit and spin if I don't like the way he is treating my child, or me, or my husband, or if I think he/she is blowing smoke up my butt (this, in case you didn't guess, is the same doctor I wanted to punch in the face).

3.) I learned that there are two types of childhood MS, unlike the 4 types for adult MS. Remitting/Relapsing, and Progressive. We are hoping that Sarah has remitting/relapsing verse progressive, but we will not know for another 6 months or so which kind has taken over her body. I also learned that these last 3 hospital visits fall under the same episode or exacerbation (using MS speak) which is a good thing, but it also means that Sarah's MS is not going into remission as of yet which is the place we need it to go for her to be able to live a normal life. I also learned that most children do not have to have the IVIG treatment that Sarah had this past week because the steroids alone usually clear up most children's (and adults) Optic Neuritis. The Cleveland Clinic also sees between 18-20 patients a year with childhood MS although most of them are in their teens. I learned that this may not be Sarah's last time in the hospital. Anytime she begins to lose her vision she will need to be hospitalized (or so we are told) to be given steroids as well as another round of IVIG (which takes 3 hours to give both drugs intravenously). I have also learned that Optic Neuritis usually only affects 1 eye, and the fact that both of Sarah's eyes are affected is another rare and almost unheard of symptom that makes her case so unique.

4.) Finally, I relearned the power of the human spirit. Sarah is the strongest, most amazing 8 year old girl ever . She carries herself with such grace and dignity that I am in awe of her, and have much to learn from her. This is the straw that she drew in this life, and she carries the burdens of this disease ever so lightly on her back. I am completely humbled (as I have been so often lately) by her inner light, and her will to carry on.