Friday, September 7, 2012
Logan's medical story
I'm sitting here with tears coming down my face after listening to a friends post about her child with some of the similar medical conditions as Logan. Logan's story-- It's actually quite an amazing journey. Logan was born at 37 weeks, he was given normal apgar scores, but when I was holding him in the room, I kept saying, he looks blue. Logan was taken out of the room for some of the normal hospital stuff. After what seemed like too long I sent Aaron to go check on him. Aaron walked up to the doctors working on Logan, apparently he had stopped breathing. By the time I saw him again, he was in the NICU having an ECHO by the cardiologist. At that time we learned that he had tricuspid atresia. The plan was for him to have 3 surgeries to make his heart the most functional. After about a week we went home with our little baby, who was finally eating and doing pretty well. The next 6 months are quite a blur. During that time we saw many specialist, he was on home oxygen at one point, transfered via ambulance from Naperville to Chicago. He also had 2 open heart surgeries. We had friends, family, and great doctors keeping us going- oh, I should add in the Ronald McDonald House too. During this time we also learned that he had a significant hearing loss, and possible vision problems. So, as time went on Logan kept getting respirtory infections until they finally decided he was aspirating on his formula because of a paralized vocal chord. So, at this point we were doing ok. Heart condition, I can handle- I understand- I have a heart condition, it makes sense to me- he will live and be ok with it. Hearing loss, at that time was ok because most of the loss was in one ear and the ENT felt like Lo would learn language without hearing aides. And his vision loss also seemed to be just one of his eyes. So, with Early intervention coming into the house constantly. Lo was starting to make some progress. Our next wave of bad news started with a scheduled MRI- Logan would need to be sedated. When they did the blood test, they found that his blood sugar had drooped really low- after several rechecks, an edocrinoligist was rushed in- At some point, they diagnosed him with Septo Optic Displasia (The diagnosis the eye doctor thought Logan may have and it was the reason he was having the MRI) So, the very reason he was having the MRI actually caused his low blood sugar. The awesome endo that saw Logan noticed that his liver was enlarged. More bad news coming in the same hospitalization. They did some ultrasounds and found that Logan had portal vein thrombosis. This is extemely rare in young children. He was only alittle over 1 at the time. We also learned that his veins are wired very strangely so the traditional shunts used to "fix" it wouldn't work. The next discussion was a liver transplant which was also quickly dismissed because of Logan's complex heart condition. They sent us home to wait and see. Logan wasn't having any major symptoms. Logan got a hearing aide when language wasn't developing, he was still drinking thickened liquids, very picky about eating any foods except for crunchy. We discovered that he had a milk and soy allergy. The milk allergy is significan enough where he could have an antiflatic response. The soy allergy was diagnosed because Logan kept throwing up over and over again after eating foods with soy. Logan was still receiving EI as much as he was healthy enough to participate. I found an infant massage class and the PT had a ton of ideas of how to get Logan to walk. Soon after he started at BDI and was pushing a walker and actually moving upright. We were thinking about last summer at the lake house and he was still using the walker. Logan walks indepentently now. His speech continues to get better. Logan had major sugery on his stomach 2 years ago. The portal vein thrombosis began to effect his life. He had no energy, had constant GI bleeds because there were varices in his esophogus and stomach. Dr. Superina removed the varices, placed a G-tube because prior to the surgery Logan didn't have enough energy to eat, he also placed a nisson. Logan did fantasitc after this surgery- he was like a whole new child. This past spring, Logan had 4 pneumonia's in a row- which prompted us to see a pulmonologist who thought Logan may be aspirating even on honey thick liquids- and the FEES (type of swallow study) confirmed it. Logan is now using the G-tube for all liquids. We have had several follow up appt. this last week. Cardiology is happy with how his doing. Pulmonalogy was also happy to see an active 3 year old. Endo couldn't believe how much he was talking. His recent endoscopy showed only very small varices- he did have a very inflamed stomach though. I have an amazing little miracle here. Yes, he is delayed and small. But, he is constantly making progress. Logan goes to a special needs pre-school. He also has Physical therapy and speech therapy. When I think about how much this little guy has been through, I am totally amazed!