Wow, I cannot believe how far I have actually came. When Jax was only 3 weeks old, I researched the entire web to find something, ANYTHING to try and help my baby boy. That is when I learned about the BMT/stem cell transplant. This became a dream of mine, to get my baby out to Minnesota and to make my dream come true. In the following months, each and everyday has been so extremely difficult for both Jax and I. I remember telling myself during a tough dressing change that one day, Jax will get his BMT and I will not have to hold my baby down for 4 hours, bathe him in bleach, lance each and every blister, listen to him scream in pain, give him over 27 different medications daily, and deal with the issues with his feeding tube, and many other EB related issues. Our latest EB related issue is that Jax’s finger nails have started to fall off down, unfortunately this is a common thing for EB children. Also, Jax’s toes are starting to “fuse” together, I am not too concerned about this because I know that I have been doing everything possible to try and prevent that from happening, I now wrap each tiny little toe…which is beyond difficult because Jax is VERY ticklish on his feet. With all this being said, I just could not wait to get Jax out to Minnesota for his BMT.
I still cannot believe that it took 7 very long months to get us out there. I am just so glad that we are finally where we are at.
So, to catch up on all that has been going on… Jax, Grammy, and I flew to Minnesota for the week of April 9th-12th. During this time we were very fortunate to have had a very special encounter with a 2 EB families. Jax had on average 4-5 appts. daily, each where they would examine Jax and make a determination as to whether or not Jax is a good candidate for the BMT. On Wednesday Jax was scheduled to have a few OR procedures done. These included 7 skin biopsies, an endoscopy, yet another change out of his feeding tube…he went from the BARD to the Mickey button, Jax also had a blister suction test to see just how fast he blisters, AND surprisingly they were able to get in an IV. Dr.Tolar, the main doctor who is over-seeing Jax’s BMT also examined Jax’s skin and took many pictures to document Jax’s EB…The OR team was wonderful, they let me stay in the OR room until after Jax went under, then they let me back in when the doctor’s were finished with their procedures to begin my “procedure” of 2 hour long dressing changes….yes, 2 hours, Jax was still under for that change which felt to different…normally I have to wrestle Jax to get his bandages on and this time he was very still…TOO still for my comfort…but I managed. That was also the VERY second time that I have ever seen Jax without ANY bandages on…it was a little overwhelming, but I didn’t pay much mind because I wanted to quickly cover his bosy with his bandages to help protect his skin. Jax then had a CT scan because there were a few concerns. While Jax was in recovery the doctors decided to admitt Jax for pain management, observation, and later on Pneumonia…Yes, pneumonia?? I suppose the CT scan revealed Jax had clearly a significant amount of fluid in the bottom of both of his lungs. So, needless to say he is on 2 very potent antibiotics and is currently still recovering from pneumonia. Jax was discharged from the hospital and Dr.Tolar felt that it would be in Jax’s best interest for him to stay local for a few days just in case Jax needed to be re-admitted. We were very lucky to have had a room at the Ronald McDonald house. We met a very specialy little girl named Sahar who also had the same skin condition as Jax. She had underwent the BMT as well. Her parents taught me SO much about EB and gave me hundreds of tips. I think god had planned us meeting, because they helped me so much, they also gave me hope…Sahar is doing well after her transplant and it was very comforting to know that.
Jax was finally got the okay to go back home after a follow up appointment by Dr.Tolar. He assured us that while we are back home in NY, he will continue to work on Jax’s case rentlessly. He then explained what to expect next, which is to go back home, rest up and be prepared to come back in mid-to-late May!! He explained how he will be looking in the donor registry for a match, ideally a perfect match. Once he hand picks a match most suitable for Jax, then he will have to manipulate the marrow and “do a few things to it.” Once that process is complete, then I should get the call to bring Jax back out to Minnesota. Once we arrive, Jax will undergo further testing to do a complete check of all of Jax’s organs to determine if Jax will be ready for 10 days of Chemotherapy, and then the transplant, and then the 160 days of recovery. Once Jax is cleared and is ok for transplant, he will receive Chemo, then the BMT, and then it is recovery time. It will take about 4-6 weeks to determine if Jax’s body has even accepted or rejected the new donor’s cells. Jax will stay in the hospital for a while, then he will be able to live at the Ronald McDonald house for a little while after. He will need to constantly go back and forth to and from the hospital on a daily basis, then weekly until it tapers off. Then once Jax is healthy enough, we can come HOME! …but until then I must stay one step ahead of EB and make Jax as stable as possible and keep him in as good health as I possibly can.
We have been home for a few days now and we are still adjusting to getting back into the routine of things. Now with the new medication, I cannot being Jax out in the sunlight at all or else it will do a great deal of harm to Jax, I have to keep a close watch on Jax’s pneumonia symptoms, and still keep up on all of Jax’s doctor appointments. Thank god that Jax has been newly approved by his insurance for home nurse aids to help. Especially since my mom (grammy) will be having surgery on both of her hands for carpal tunnel and she will not be able to help as much as she previously did. Which means that the nurse will have to help me with daily dressing changes along with many other daily routines for Jax. This is an absolute miracle and I am so excited about it!
Once again, I apologize for not updating sooner, but I have been pretty busy. I will keep updating but until then keep your fingers crossed that Dr.Tolar can find a match. Thank-you all for your continued efforts in supporting Jax.
- I spy with my little eyes…. two teeth. surprise, surprise!!
- What a ham!!
- Asmaa, Halim, and Sahar-such a cutie!!
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