Eli was born August 2010. He weighted 8 pounds 9 ounces. We had him tested at birth for a genetic disorder that my husband has called osteogenesis imperfecta, it is also known as brittle bone disease and OI. At 2 weeks old we got the news that he tested positive for OI type IV. We knew the chances of him getting it was 50/50 but since our first son Dakota didn't have it we were hoping he wouldn't either. We accepted his diagnoses and decided to just live life and deal with things as they come up.
Eli would randomly projectile vomit, after an ultrasound and upper gi we were told everything was normal and he will grow out of it as he gets bigger. The throwing up went from random to after almost every feed. The doctor didn't seem concerned and said his low weight was from his OI and that he "looks" healthy. At 6 months when we tried to introduce solids he would either refuse or end up choking on the baby food. After a few months I spoke to his doctor. She suggested therapy and if that didn't work they would send us to childrens to see a specialist.
In the end therapy didn't work and the appointment was made. They couldn't get us in for 3 months so we would just have to keep working with the therapist until then. During that 3 month wait I noticed his lymph nodes were very swollen, most of the time they were bigger than a golf ball. The doctor said it was probably just from all his ear infections, but gave us a referral to an ent at childrens. Again the wait time was 3 months.finally the day had arrived to visit the gi doctor. We went over all of his symptoms, even the ones that were not gi related. I told her I felt like everyone was blaming things on his OI and he wasn't getting the help he needed. She was amazing and listened and agreed that what was going on had nothing to do with his OI and she wanted to run a series of tests to see if we could figure out what was going on. She ordered a chest x ray to check if he was aspirating, an upper gi to make sure his anatomy was correct, a swallow study and an mri of his skull to check for a fracture that could cause the vomiting.The chest x ray and upper gi was scheduled for the same day. Everything seemed to go well and we went home expecting a call saying the same. The next day my husband got a call saying the chest x ray showed a possible mass in his chest and his trachea was shifted. They scheduled a ct a month out. We were worried but didn't want to spend the next month worrying about something we didn't even know really existed or not. About a week later Eli got a staph infection on his butt. After 2 visits to the ER they admitted him for IV antibiotics. They then decided they wanted to do surgery and put a drain in the infection to help keep the wound open and the bad germs draining out. I was fine with all that so we headed down to pre op. The anaesthesiologist came in and was going over his history and what to expect. I told him what we just found out about the possible mass in his chest shifting his trachea and he immediately cancelled the surgery and scheduled him for a ct scan. He didn't want to put him under until he knew what was going on with his trachea. Later that day they took us down to the ct room and I had to help hold his hands above his head. I think I was still in denial about this "possible" mass and wasn't prepared for the results. Later that day they came in and showed me the ct. It literally looked like a tree branch was going throughout his chest. They said that this mass was also going into his neck and abdomen and they wanted to run an mri the next day. They said they weren't for sure what the mass was but it looks like some sort of lymphatic malformation. I had no idea what that was but I was scared and all alone at the hospital since my husband had to work. The surgeons came in and explained that Eli would have to be sedated for the mri so they were going to place the drain in his staph infection before sending him down to the mri. The next morning we went back to pre op and I waited for them to take him back. Its so hard to watch your sweet little baby being wheeled away on a gurney with doctors you barely know. All I could do was pray. After the surgeons placed the drain they took him down to the mri room and came and got me so I could see him before they started the mri. They showed me the drain and I got to give him a kiss before I was told to go wait in the waiting room. Time stood still that day. I was still all alone and just wanted to cry. They updated me about every 45 minutes. It was only suppose to take 2 hours but they found the tumor was going further down then they expected. I was crushed and just wanted this all to be over with. Finally they came a got me and took back to him. He was already awake and crying. I held him and rocked him until it was time to take him back up to his room. Later that evening a doctor came in and introduced himself as an oncologist and I was terrified at that point. They said they were not sure what the mass is but it looks like something called neuroblastoma. They said the tumor starts at the base of skull and goes all the way down to his kidneys. They wanted to sedate him and do a ct guided needle biopsy of the mass to figure out what it is. The next day they took us down to the ct room and once again he was sedated and taken away. After the procedure the doctor told me that the mass was very hard, but she was able to get a small amount from the biopsy. She was going to send it to pathology and they would be able to tell her if it was enough of a sample. She said if it wasn't enough they would have to sedate him again and do a regular incision to get a bigger biopsy. The next day they came in and told me that they didn't get enough and they were scheduling the regular biopsy for later in the day. They also said that if it was neuroblastoma they would be putting in a port while he was sedated so they can do chemotherapy. It was all very overwhelming. When it was time for him to be sedated again I felt like an old pro at that point, I kissed him goodbye and once again watched them wheel him away for the 3rd time in less than a week. I was praying that it wasn't neuroblastoma and he wouldn't need chemo. when the doctor came out he told us it was good news he wouldn't need a port the tumor is something called plexiform neurofibroma. I had never heard of it and had no idea what it was and what we were facing, but at least we had a name.
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