They called his Interventional Radiologist (basically a vascular doctor) who said the lesion is likely shrinking. He said normally this process happens slowly over time, but in a small percent of cases it clots and involutes very quickly and is a very painful process that we would have to wait out. The next 2 weeks were awful. Jacob was in constant pain, despite pain medicine around the clock. The nights were the worst, as if he laid flat it would fill with blood and wake him because of the pain. I spent most nights sitting up in the rocking chair in the nursery holding him while he slept fitfully and cried at intervals. By the end of the 2nd week, I was very worried. He was starting to walk crooked, leaning to the side of the lesion, and his head was tilting that way also. I called our IR and he said it could be now involving nerves and we needed to get an MRI now. That day (Friday afternoon) he had another MRI. It showed rapid growth of the lesion, extending to wrap around his spine and growing between the vertebrae in the nerve tracts. It also showed poor expansion of the lung on that side and consolidation at the lung base (which we later discovered was blood). It needed treatment, which involved injecting a sclerosing agent (toxin) into the lesion to cause the vessels to shrink. He said a very small number of such lesions requires this treatment, especially at his age. But his lesion was atypical anyhow, so we needed to proceed with treatment. The medication was not on hand, so we scheduled the procedure for Monday morning. By Monday, he looked awful. We did the sclerotherapy procedure (under anesthesia of course), and went to recovery. The procedure itself went well, and the doctor was confident, now that we "told" his body that this lesion was foreign and unnecessary, it would finally go away. In recovery, he slept most of the day. They kept us all day to watch him, and I felt progressively uncomfortable with how he looked. He had been extremely pale for a week and it felt like his heart was racing, but we attributed it to the pain he was in. Now that I saw him monitored, to see his heart rate so high (greater than 150) even when sleeping was a red flag for me. I mentioned it several times, but all agreed it was pain. He also turned blue and dropped his oxygen saturation to the 60's anytime he cried. I was very frustrated with our nurse in recovery who simply thought it was all just from strain on his lung from the lesion, and residual pain. Exasperated, and being told he was clear to go home, I left with him at 5pm, long after all other patients had left. In retrospect, there are so many things I would have done differently, and I vow to never fail to advocate for my baby if things seem so off. We went home, and that night and the next day were much like the previous week. Horrible pain, and a puny little boy. The following night (Tuesday) was awful. He was ghostly pale and could scarcely lift his head. I knew something was wrong, and was sitting with him on our pediatrician's doorstep Wednesday morning when it opened. He sent us to the hospital for a chest x-ray. My friend who works in radiology came out and got me after they shot the film and said, don't go anywhere, the radiologist is on the phone with your pediatrician now. Jacob had a huge pleural effusion (collection of fluid in the chest which compresses the lung). We were sent immediately upstairs to the ER. They drew blood, which revealed Jacob was severely anemic.
His hemoglobin was 6 and his hematocrit was 18. All were pretty sure at this point that the fluid in his lung on the x-ray was in fact, blood. He was sent to PICU to be given a blood transfusion and have his lung drained.
They started his blood transfusion and then sent him back to the Vascular Lab with our IR to look at his chest. There, they put a needle in his chest and drained 10 ounces (300mls) of blood out of his chest. He was brought back up in stable condition and finished transfusing a full adult unit of blood to replace all that he lost.
We talked with the doctors in PICU and our IR, and all were perplexed by all that transpired. Looking back, it was decided that the "consolidation" on his MRI was likely blood and that the lesion in his chest had probably been bleeding for a while. It was a mystery to all why that would happen, as such lesions rarely bleed or cause such harm. It was a freak thing they had no explanation for, but agreed he should be fine from here on out. After the blood transfusion, he looked much better, and began to feel a little better each day.
We left PICU on day 4, and after a week, he was his old self again. The lesion on his back was shrinking, so we expected it was inside his chest as well. Our doctor scheduled a follow up MRI in January to see how it responded to treatment. January rolled around with Jacob doing great, and being a normal 18 month old. The follow up MRI showed a drastic reduction of the lesion in his chest, being only about 3cms down from about 14cm previously. Our IR assured us that since the lesion has started the process of involuting, they never regrow. It will simply continue o shrink until gone. We were thrilled and they set a MRI date for a year from then to assure it was gone. On we went with life, not thinking about the lesion at all. Jacob turned 2, became a big brother, and we adjusted to being a family of 6. Jake is the pistol of the group, and though not jealous of Luke, does test us with his fiery personality. But his health was great. Intermittently, David would mention that he felt that the lesion on Jacob's back was starting to get bigger. I refused to even acknowledge the possibility, as it went against all we were told. I did mention to our pediatrician at his 2 year checkup several skin markings that he had. He has had about 5 small bluish spots scattered on his body that he's had since birth. At birth, they were very small, like a pinpoint, or petechiae for my medical friends. We figured they were birthmarks. As he has grown though, so have they. They now feel nodular, like a ball under his skin, except for one, which resembled a strange looking bluish hemangioma. Here are a couple of them (on side of finger, thumb, and heel):
Our pediatrician wasn't sure what to make of them and referred us to a dermatologist. Our appointment was set for September 15th. I wasn't too worried about it, as how bad could a few birthmarks be?
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