Port replacement surgery

Day + 375
Port replacement surgery - out patient

Last week, Ms. Katie (BMT Nurse Practitioner) called me with the results of 1 year evaluation. Thankfully, most of tests came out normal: ECHO(even better than a year ago), thyroid, PFT(pulmonary function test), IgG & IgA. However, the MRI scan showed that her Ferriscan (iron concentration within liver) was way too high: normal for her age is around 5, hers was at 37.  I kind of expected this result because Viki had received way too many blood transfusions for 1.5 years prior to her BMT and as a result of that, her iron level is at where it is.  Interestingly enough, there is no natural way of getting rid of the iron in our body. There needs to be a external help of getting rid of it.   I was hoping that we would be able to remove her port by 1 year mark post transplant but, it turned out to be opposite. Viki will need to have her port replaced with a new one so she can  continue with monthly phlebotomy. According to ferritin specialist, she will need at least an year or two of monthly phlebotomy to bring her iron level down to a normal range.   What a disappointment!! I thought we were so close to being back to normal but, it looks like we will be in this dilemma for another year or two. Viki will also continue aerosolized pentamidine for Pneumocystis prophylaxis. She will not begin post-BMT re-immunizations at this time because she is still taking cyclosporine. She will start post-BMT re-immunizations once she is off immunosuppressants for 3-6 months.

Viki had 2 surgical procedures done on 11/11/13: Removal of previous port and inserting a new one (at a different location of her body).  The reason for the port replacement was that Viki had her port placed when she was only 3 and naturally, as her body grew, the catheter was stretched at her main artery to the point where extracting out her blood during the phlebotomy was getting impossible.

Dr. Parker removed the old port in middle of her chest and inserted a new one around her left shoulder near the main artery.

 I've never seen Viki cry this much after a surgery. Maybe it's because she had two big incisions this time.

I was so heart-broken. My poor little baby.

We've tried everything to make her feel better: pain medicine and even with popsicles.

 

As far as Viki's eczema goes… the magic of Elidel cream didn't last long.  Rash comes and goes, even goose skin is accompanied by rash.  Looks itchy and blotchy. Now I understand why they call this a CHRONIC atopic dermatitis. Obviously there were moments where I was getting upset about all the recent issues but, I'm forcing myself to look on the bright side. Just hoping and praying that she will grow out of it.