Tuesday, November 1, 2011

Home Sweet Home.....

Hi Everyone,

I am happy to report that Julia was discharged Sunday afternoon from Sick Kids and more importantly has remained home! She is still not quite herself but we are still trying to work that out. She is on overnight hydration and receiving daily injections (which her home care nurse is giving), to try and boost her counts. She will be back at the hospital tomorrow for an ENT consult, bloodwork, and clinic. We will see tomorrow's results if the injections are working. She may also require a blood transfusion tomorrow as her hemoglobin remains very low.

Julia's heart biopsy came back showing minor rejection (this is expected in every transplant patient). The good news is that its nothing serious that requires intervention. Her PET/CT showed some small lymphnodes in her lungs that also lite in the PET scan but doctors believe this may be from the pneumonia she had a few weeks ago. We have moved her to oral antibiotics for a 2 week course and will re scan her after this to see if there is any improvement. The puzzling piece is that her PET scan lite in her throat although CT did not pick anything up in that area. So once again doctors don't know what to do with this piece of information. Therefore we are seeing ENT tomorrow to see if then can shed any light on the situation. Especially because Julia is still not eating and is losing weight quite quickly. Hopefully they will have some ideas for the team. She will also have some special Rheumatology bloodwork drawn tomorrow to help guide doctors. Everyone is working hard to try and figure out what is making Julia feel so unwell. At this point they are thinking out side the box and running whatever tests they can to help them. Her bone marrow biopsy also showed that she is iron deficient and this is why her red blood cells are so low. Her last EBV remains negative which means she is not ready to go to NY. Sloan Kettering is ready for her and now we wait until her EBV becomes positive and off we go. At this point we test it weekly and wait for a positive. It may have been a blessing in disguise because I can't imagine being in NY while shes been so unwell. I just hope they figure out what's going on before we need to go to trial.

Although we are home things are far from normal. I feel like we went from being a prisoner in the hospital to a prisoner in our home. Julia is not well enough or strong enough to go out (nor can she be around anyone due to germs), home care is coming in daily, I have to hook her up to hydration every night, and it takes me 2 hours to convince her to eat. Even after the 2 hours I can only manage a bit or two of toast. At this point my days are consumed taking care of Julia and trying my hardest to help her feel stronger.

I apologize for once again being very distant from all of you but this latest hurdle has really taken its toll both physically and emotionally. I appreciate all the positive thoughts and encouragement but I'm finding it very hard to remain positive and optimistic at this point. I can not even begin to explain the fear I am feeling as I watch Julia deteriorate in front of my eyes. And cant help but worry that if we don't figure this out soon or Julia does not start to improve we could be headed for trouble. Part of me is also angry............angry at the constant battles that are thrown her way.....its just not fair. She has missed so much in her short life and instead of moving ahead and getting back some sort of normal life for her we continue to take steps back each year. It is already November and Julia has had 3 days of grade 1......another year passing her by.

I will continue to keep you all updated and hope and pray that in my next post I will be able to tell you all things are back to "normal" and Julia is back to herself. Thank you for your continued support.


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