The Wilson Family

Chris, Cindy, Melanie and Morgan

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December 6th
 
1:30pm - Melanie received another transfusion this morning.  After the one last night, her blood counts did not improve.  Her hemoglobin is currently at around 5, and normal for someone her age is 11 or 12.  They want her to be stable at 8 or 9 before they will send her home.  When she arrived Friday, she was at 4.5, so this is not really significant progress.  They are going to increase the amount of blood they give her with each transfusion, as well as increase the dosage of prednisone to up the game a little bit. Her spirits are good today.  Still planning to create a site for her on the hospital's system.  I will provide an update on that as soon as I can.
 
8:30am -  This is the first email I sent to friends and family.
 

Dear Friends and Family,

 

I wanted to write to make sure we let everyone know what is going on with Melanie.  She has been in the hospital at Vanderbilt Children's Hospital in Nashville since late Friday night.  She has a condition called Autoimmune Hemolytic Anemia.  I included a link so you can read more about it if you are interested.  Basically, she must have had a virus or some other kind of infection that her body had been fighting off, and when that infection was gone, her immune system started attacking her red blood cells instead of just calming itself down and waiting for the next infection to come along. 

 

She had been complaining of a stomach ache on and off most of last week, and Thursday evening she started feeling fatigued.  I noticed her skin starting to look yellow on Thursday.  Friday morning she complained that she felt like she was going to throw up and had a headache, so she stayed home from school.  She slept most of the day.  Her skin was definitely yellow by Friday, and even the whites of her eyes were yellow.  I took her to her doctor Friday afternoon, and they suspected she had Hepatitis because she was so yellow.  They sent us to the lab at the local hospital for some testing that night.  Her condition was deteriorating pretty rapidly by now.  She didn't have the strength to stand up on her own, and she passed out as I was zipping her jacket to leave the hospital.  A few minutes later, before we even got home from the hospital, I got a call from the doctor who said she needed to get to Vanderbilt Children's Hospital immediately and that she needed a blood transfusion due to the extremely low levels of red blood cells. 

 

So I rushed her to Vanderbilt where they did all their own blood tests and confirmed that she was severely anemic and needed a blood transfusion.  By this time she was passing out if she sat up, even if someone was supporting her.  At one point she was looking very confused, and I asked her if she knew who I was and she said no.  That was a really scary moment.  But a minute later she looked alert again and she knew who I was.  They admitted her at 3am and at 5:30am started her transfusion.  It took them about 5 hours to find blood that they could give to Melanie, because the blood bank was testing her blood's response to all of its A+ samples, and they wanted to find the one that was the closest match to hers so her hyperactive immune system would not destroy the donor blood cells as soon as they entered her body.  They have to give her small amounts of blood over a long period of time (1/4 unit of blood over 4 hours) so that they don't overwhelm her hypovolemic body with fluids.  They gave her another transfusion Saturday afternoon and then tested to see what her blood counts were after the two transfusions.  There was little improvement, so she had a third transfusion last night.  As far as I know, as scary as all of this is, she is out of serious danger.

 

They are also giving her the steroid prednisone to try to weaken her immune system so it will stop attacking her blood cells.  Their plan is to continue the transfusions and prednisone until her hemoglobin reaches a safe (not normal, but safe) level and her own red blood cell production is outcompeting the autoimmune attack (meaning, her blood counts remain steady).  Then they will send her home and continue the steroid treatment and monitor her often until her blood counts reach normal levels.  Her attending physician told me last night that this process could take 2-4 months.  She is expected to remain at Vanderbilt Children's Hospital for 3-5 days.  As we are on day 2 with not much improvement, my guess is she may be there closer to 5 days.  She is a lot more stable now though.  She is much more coherent than she was Friday night, and she smiles and talks.  They give her benadryl with every transfusion to minimize the risk of an allergic reaction to the new blood, so she sleeps through those, and is just generally very tired all the time due to the lack of oxygen to her body, which is a result of her low red blood cell count.  She is not allowed to get out of bed to use the bathroom or anything else, even with assistance, because they fear her falling down.  She is not too happy about being there.

 

They don't have any explanation for why this happens.  It appears to be a completely random thing that may or may not ever happen again over her lifetime.  It is uncommon, but not rare.  Chris was TDY in Bethesda, MD when this happened and he wasn't supposed to be home until the 18th.  He flew home yesterday and will have to go back to redo the class he was taking some other time.  I did not sleep at all Friday night, so I came home last night and got some rest and Chris stayed with Melanie.

 

By the way, we think the headache and stomach ache complaints were because she had Strep Throat,  which we didn't know about but found out from a rapid test they did at the doctor's office on Friday afternoon.  They treated that with an antibotic injection.  They think that was too recent to be the trigger for the Autoimmune Hemolytic Anemia.

 

We have help, for the time being.  My parents were already on their way here when this happened, so they have been able to take care of Morgan this weekend.  Chris's mom is coming today and plans to stay until Thursday.  Hopefully by then Melanie will be able to come home.

 

If you are thinking about visiting Melanie, she is on the 6th floor on 6B.  That is the hematology/oncology ward, so if you are even a little bit sick or think you might be coming down with something, they ask that you do not come.  Not because of Melanie's condition so much, but because most of their patients are children with cancer who have compromised immune systems.  Melanie does not have cancer.  Don't be alarmed by that.   

 

The staff at Vanderbilt Children's is wonderful and the hospital is amazing.  They are so good at taking care of kids and talking to them as much as they talk to the parents.  So far I know without a doubt she is in the best hands she could be in.

 

We are trying to set up a webpage where we can post updates about her condition.  Hopefully that will be set up today and you will be able to look there to see how she is doing instead of waiting for another email.  If the one that the hospital provides doesn't work out for some reason, I will figure out a way to update our website http://wilson4ontheweb.com.  I will let you know when one of those is available.  If you have questions or want to talk to us, either email me (cindywilson3@gmail.com) or Chris  (beav1@lifetime.oregonstate.edu), or call us Cindy (703-943- 6628) or Chris (703-399-5375). 

 

We thank you for all of your love, prayers and support.  Melanie will get through this, and will be back to her usual self soon, we hope.  It has been a wild couple of days, but we are very comforted knowing that once they get this under control, she will be fine.

 

Regards,

Cindy