Anakin Baldwin Update
Update from Anakin's Mom (Samantha)
Anakin has been released from MUSC, which is great, but still has a ways to go. The story of his journey from the beginning, told by his Mom:
This is going to be long so bare with me!!! I’m going to tell you all from beginning to now the journey we have all been on!
On April 11th we took Anakin to the family doctor to have a rash checked out on his feet! They gave us a cream and after a couple days all seemed great they went away! Well just a few days after that he started getting these red raised bumps on his feet and legs. In just a couple days these spots grew and multiplied. We went to the hospital where he was diagnosed with impetigo, given antibiotics and sent home. After a couple days of that not working we went to the family doctor who changed his antibiotics and did cultures on his sores but he still believed it was impetigo. Within three days the sores had reached his face and fingers, so we went back to anmed. They told us they didn’t know what this was and their best guess was Epidermolysis bullosa (EB) or butterfly disease. They gave us more antibiotics and skin cream and told us they could not treat him there he needed to be somewhere special. Well Austin and I both decided we wanted a second opinion. So we stopped in and let family know what was going on, we packed a bag and went to Greenville. When we got to Greenville they said this is not impetigo and we don’t believe this is eb. So they admitted him. They ran blood test after blood test! Dermatology came in and did a biopsy. Wound care came in and couldn’t help because they were afraid of making it worse so Austin and I had to make the call to dress his legs because he would rub them none stop on the bed till they bled. He kept low grade fevers his heart rate stayed high then his breathing started to become impaired ! Every day he had to work harder and harder to breath he was in pain he didn’t sleep more than 15 minutes at a time. He wouldn’t put his legs down because the sores were so bad on his legs and bottom!!! They were doing breathing treatments and Tylenol every chance they could! We were moved from general floor to intermediate because he was having to have high flow oxygen! We were in intermediate for that day and the night. The next morning they moved him to the picu! All of this has took place in a 1 week time frame! After a week of him getting worse and the doctors with no answers still we were sent to musc! They started over new blood test. Bone marrow. Hip biopsy. Genetic panel. Skin biopsy, skin culture. The works. based on his biopsy results he was diagnosed with neutrophilic dermatosis (sweets syndrome) Everything started narrowing down and little by little most things were ruled out! No malignancy praise Jesus!!! The same day we had to make the decision to have our baby intubated because his body was working so hard they were afraid it would give out!! They wanted to do this while it was still to just help him and not emergent while trying to save his life! For 9 days he laid there medically paralyzed and sedated! Then three more once they felt he was strong enough to wake up!!! While intubated his lungs collapsed twice, he had to have a chest tube put in and his heart started acting up!!! They found thickening in his heart on the left side! They finally removed his intubation tube but had to leave his chest tube and feeding tube! He spent a week strengthening his lungs on high flow oxygen.!!! Finally he got to come off all the oxygen. We finally moved to the 7th floor still icu just not as hectic! And for two weeks they managed meds and kept a close eye on him. Then finally after 6 long hectic, heartbreaking scary weeks we were discharged yesterday around 6:30pm thank you lord for helping Anakin to overcome so many horrible things!! As the end of phase one of our journey is complete we pick up and start phase two!!! Still continue to pray because he isn’t out of the woods yet !!! Thank you all so very much for your love support and kind words through all this and what’s to come! I know I have left out so much but I wanted to wrap it up some!!! Thank you all we love you all!!!