October 1st, next weekend, will mark such a special day for us. Ethan will be turning 2! I can not believe it. Oh the roller coaster we have been on. This boy is one of the most precious gifts that God has given us. We are humbled and covered in grace daily because of him. Ethan has been through more in his short little life than most have. I want to give you an insight of what my little man has been through in these 2 years.
Ethan was born term October 1st of 2009 already a sick little baby. He came out with extremely high numbers in jaundice and was wrapped in the blue light blanket and blue bed for days. Thankfully no transfusion was needed. We got him home and the first month went pretty well besides all his spitting up. I mean this stuff could have won an award for projection. We tried all different types of formulas and he finally was keeping most of the stuff down with a specialized one. He then began getting ear infections and RSV. We got a nebulizer and rotated steroids and albuterol to keep the pneumonia away. He continues to spit up all the time. Then he was diagnosed with GERD an put on Zantac. Still was not helping. He got RSV again and continued to get ear and sinus infections. Then referred to GI doc and he added Prevacid on top of the Zantac. By this time we are on our 14th ear infection so we get tubes put in. He is underweight and can not go under for tonsils and adenoids yet. He still continues to get ear infections....We then are referred to an immunologist. Weak immune system but no deficiency. We begin to notice a ridge that has been developing vertically from bridge of nose to top of head and then his "soft spot" sunken in. Go to neurologist and dismissed as all is well because he was comparing him to Nick and autism. GI doc had swallow study done. We find out he has been aspirating this entire time on his formula. Ethan was put on thickener and he began to eat again but continues to spit up and vomit. Then things went down hill. Many nights in a row we are woken up to Ethan choking and gasping for air in his sleep......What is going on?!?!??! We find out he is choking on his saliva and aspirating.
All this time, we still have no diagnosis and no one seems too concerned. We thankfully have friends that know of places so we were immediately referred to inpatient at OCH. Ethan was there for 36 days, had VitaStim done and put on a feeding regimen. Went to new neurologist and he took at CT scan and MRI. While in the hospital Ethan had more ear infections and got RSV again. Jackie and i started researching about the ridges in his head. We found out and confirmed with neurologist that he had Craniosynostosis. 2 of his 4 sutures in his skull fused too early. We come home discharged from OCH waiting for appt. with neurosurgeon and then Ethan stopped eating and became really sick. Three trips to the ER and we finally were admitted. After 11 days in the hospital Ethan had to get a tube placed in his stomach to keep him hydrated. Come home. He gets sick and go to ER and g-tube became severely infected. Had to go back to surgeon and then had to burn the infection around his g-tube site, which they still have to do to this day. While in the hospital for the do another MRI and looked at the pressure on his brain. We saw craniofacial surgeon and he stated no surgery is needed at the time. This is when they find that Ethan has Chiari Malformation. We go to neurosurgeon. Ethan's 2 fused sutures are ok for now but will need to be monitored, however, her needs to have brain surgery for the chiari. We schedule the surgery. In April he had a 6 hour brain surgery to decompress the cerebellum and widen the C1 vertebrae. We stay in ICU, move to floor then get transferred back to OCH for another month of Rehab and feeding. We get home May 12th and thankfully have only had 3 emergency room visits since then and no hospital stays. He is now being followed by 8 doctors and we continue to monitor his brain pressure on a semi-regular basis. ENT today said 90% of kids after tubes fall out which Ethan's are about to, are fine. He said Ethan will fall in the 10%. So soon he will have his adenoids and tonsils removed.
So, in 2 years our little guy has had over 140 doctor's appointments, 3 surgeries, seen by 17 doctors and 8 continue to follow. He gets ECI, speech, OT, PT nursing services and a WHOLE LOT OF LOVE.
God has been with Ethan through this all He is a fighter and stronger than I know I will ever be. I am amazed at the perseverance of this wonderful son my God gave me. Will he know what he has been though and more importantly, what he has accomplished and overcome? Only time will tell, where Ethan's path will lead. I pray everyday that no more surgeries are needed, that the pressure in his brain stays within normal limits, that he will drink again and not have to rely on his tube.
What we do know is that he is a miracle, he is a blessing and he is our son perfect in every way! Happy 2nd Birthday to Ethan on October 1st! You amaze me everyday!!!!!!
