The ER visit

On Aug. 20th we took Jenna to All Childrens hospital ER.  We had not even been home from Boston a week and we were right back in the frying pan.  I had never seen these spots turn so quickly before and it had me very concerned.  She was feeling so badly and was so tired.  Here I was thinking that we had gotten a bit of good news from the Doctors in Boston, but there we sat waiting for yet another Doctor to come in and gives us his/her opinion.  I think that I should of gone to medical school with everything that I have been through with my two kids...it sure would of made my life a bit easier. LOL.  We were seen by a few Doctors that evening and they were all so interested in what Jenna had...I'm sure they'll never see it again.  She is one of the few patients that has this panniculitis complication and from what we have learned to date...there are not even 30 cases in the country.  They did admit her that evening and started her on IV treatment...1000 mg of solumedrol and then the IVIG would start.  The IVIG is given very slowly so that there are less side effects and it takes about 13 hours for that to run ( 6 big glass bottles) Once we were in our room the Doctors kept coming in to examine Jenna.  I was so suprised at the number of them that came in and out that night.  We had seen two ER Physician and one resident before going up to her room.  Once there we had visits from a couple more residents and the hospitalist.  The next morning we saw another resident and the Pediatrician that was on call, then her Rheumatologist came in and he had a resident with him.  I can never say that we didn't get attention from the staff that night.  It was no suprise to learn that her labs were all out of wack.  The Sed rate was even more elevated than before, the crp had gone up and vonwillebrand factor Ag was high as well.  Her Doctor spend alot of time answering my questions and went over her "new" treatment plan.  We would be going back on all IV meds (IV solumedrol & IVIG) he would increase her cellcept dose from 1000mg to 1500mg per day, the prednisone would stay at 15 mg per day, naproxen would be 750mg per day along with the lansoprazole 30 mg per day, fluoxetine 40 mg per day, calcium, and vitamin D.  We were back where we had basically started from.  It is like taking 3 giant steps forward and 10 back.  It has taken it's toll on me, I can't even begin to think about how she feels.  Never feeling good, never having the energy to just be a kid.  This was the point that we also decided to do homebound schooling. The Doctor thought that it would do her some good to get the rest in the hopes that it would help her get better.  After everything that this kid has been through she still has the ability to laugh.  While we were waiting for the nurse to get her discharge papers together, I noticed that Jenna was playing with her IV...well, what I thought was playing.  Actually, she was removing her IV!  I was so suprised & I think that the nurse felt the same way, she said to Jenna could I check to make sure you got the whole thing out.  Sure enough she had taken that IV out and had cleaned the arm and put a band-aid on it.  Kids do the craziest things sometimes.

The next two weeks would be about Jenna resting.  We went back on Sept 3rd to get her Iv solumedrol treatment and have her labs done again.  I knew that she had been a bit better and her panniculitis spots were looking better than they had the week before.  I guess when they say..."never judge a book by its cover"  they are right because when we got her labs they were higher than they had been the night of our ER/hospital stay.  How could that be?  They had increased all of her meds what were we going to do now?  Her Doctor came over and saw her while she was in the infusion center and had said to just keep the meds at the dose that they were at until our appointment with him.  I sit and watch Jenna and she just amazes me the way that she acts and the way that she speaks to adults.  There are no better patients than kids. They don't hold anything back, they tell it like it is, and they are not afraid of being wrong.  She has the best nurse ever at the infusion center.  They have beome such good buddies.  I am sure that her job is not fun all the time due to the amount of sick kids that she sees, but I know that she has a very rewarding job, you can see it in the kids eyes when she walks into the room.  Jenna has had a rough road but I can at least be thankful that we have the medical staff that we have, they are all wonderful.  The home schooling is turning out to be a good decision on Jenna's part.  She has a wonderful teacher and she is getting all A's.  She works well one on one.  Sometimes in a large group of kids she lets her mind go and doesn't focus on what the topic is or what they are working on.  I hope that maybe by the end of Oct. she wil be able to at least go to school 2 days a week.  I know that she misses her friends and the social part of going to school.  Most days she is too tired to really care, but I know that if she had the choice she would be there in a heart beat. 

We had to go back on Sept. 15th for another infusion and to see her Doctor.  Her infusion went well and they did another set of lab work.  We had our appointment with her Rheumatologist and again he decided to change her meds...again!  Now he has taken away the cellcept and the IVIG and is going to start to lower the oral steriods dose...WHY???  her labs were so screwed up two weeks prior, why would he do this?  She has no new spots at this time, just the same 12 or so that she has had for the past few months.  This is the part that drives me crazy.  Not that I want her to be on all of those horrible meds, but the last time he took some of her meds away, we ended up in a crisis and had to be admitted to the hospital.  I am not a Doctor, but I am her mother and I spend every second of every day with my child and I know when she feels good and when she feels bad.  We are going to have to see where she is in a few weeks and I can't wait to see what the labs showed.  That will be the most interesting to me.  If things are up, then who knows where we go from here.  The biggest problem I think in treating this panniculitis is that it is so rare and patients don't respond the same way to treatment.  I just have to have faith that things are going to start to get better for Jenna and that she gets to feeling better soon.  I am now up to date with her current treatment.  I hope that I have not confused any of you.  To my JM family...I don't know where I would be without you all.  I am so happy that you came into my life so that we can share our stories with each other.  Nobody could ever get through this alone.  We all wish for the day that we can find a cure so that no child has to suffer.  To my family and friends that have been there for me...Thank you.  I know that there have been times that I just breakdown and cry...thank you for listening to me and being my support.  I will keep you all posted and up to date.  Until next time...please remember that life is very short and we are here for only a short time.  Remember that PEOPLE are the #1 thing in our lives, they are the ones that get us through the bad times, the sad times, the happy times, and the good times!!!!