Patrick's Fight: From Ascites to New Liver

Hi everyone, this all started a few years ago when Patrick started getting bigger in his stomach. Everyone ran blood tests, X-rays, and ultrasounds on him and just said it was his bowels and constipation for a kiddo with Down syndrome, he is just constipated. We have talked to his pediatrician and then when he felt Patricks stomach, he felt that his spleen was big. We were then referred to a Hematologist/Oncologist to see what they think. He didnt know why Patricks Spleen was soaking up all his platelets but that’s what it was doing also known as Lympoproliferactive Disorder with Splenomegaly and Thrombocytopenia. So now to 7 years or so later after that diagnosis, I am still trying to figure out Patricks big stomach. We went to MNGI to see a doctor as soon as we could when I realize that Patrick looks too dang big for constipation and the doctor didn’t listen to me and didn’t do any testing on him, just told me to do a CLEANOUT. Patrick hated that and made him hurt. The Down syndrome clinic closed at the Children’s Hospital a while back and now we hear there is a new downs clinic opened in Minnetonka. So I decided to give them a try to see what’s going on. I hated hearing that she thought Patrick could have just an oversized bowel system for having constipation a lot. But then we also said Patrick has been saying his neck hurts now for the past week and we don’t know why. She figured it out after some x-rays and said he has Atlantoaxial Instability in his neck and should definitely see the Neurosurgen to get this looked at ASAP to see what they think. We went back to Children’s Neuro and they confirmed it and said we should get this taken care of right away and definitely before we get his vocal cord repaired. We were having issues thinking too much about whether or not we should do it now or after bowling, since he loves bowling. So we decided we didn’t want to take any chances and said lets get it done now. Everything went good, only in the hospital for almost a week. Get home and within 3 days his stomach went from 36.5inch to 38.5inch. So I was able to get him in to MNGI Friday afternoon and saw a different provider and she told us that we should go to Children’s ER to get all the scans done and testing done and get the results quicker than waiting for the clinic to get the results. We went in as I was already looking this all up online and seen that Ascites was the only thing that matched him to a T! So I brought it up to the ER doctor and told her what I feel he has and that we need a ultrasound and CT scan right away and she said yes I definitely see your point and concerns but let me grab my colleague quick to make sure that grabbing a CT would be the best way to go about it. That other doctor came in and said she wouldn’t want to do a CT if this is just constipation without looking at him first and I was furious! I laid in on her telling her that’s not what this is, I know constipation and we are on pooping meds to keep it nice and smooth, he ain’t constipated! CT, x-ray, blood and ultrasound was done and guess who was right?????? ME!!!! It was Ascites and they put a drain in his belly to get that fluid tested to see what was cause this to happen. Took a while for the results but they came up with MNGI doctor we had when Patrick had to get a Gbutton for feeding when he was a baby. They said that the blood came back fine cause Patricks liver is still about 15% to 30% good and working still while the fluid testing and CT scan show Chronic Liver Disease and that Patrick needs to be transferred to the U of M Children’s to get a biopsy and get a liver transplant. Now we wait to be transferred….. still at Minneapolis Children’s. I had to take off working at the school bus company to stay home and help my son recover from his Occipital-cervical fusion with rib graft. Now we are back in the hospital for Ascites due to stage 4 Liver failure looking for a liver transplant. I am always at the hospital, my husband goes there on the weekends so I can go home and shower and rest but I still can’t think about getting answers. My head is spinning, I’m crying all the time thinking about if I never would have brought him to see the Down syndrome doctor, we wouldn’t have had this surgery that then led us to Ascites that led us to push for answers but only get an answer we never thought we would hear. If we never brought him to see that doctor at the downs clinic, who know how much time Patrick had left and if we ever would have caught this in time. We are now behind on bills, low on food, don’t feel like cooking cause I am crying and stressed out. My husband works 9am to 5pm on weekdays and doesn’t have time to even think about feeding the dogs or kids but pushes his way through for the family as he is thinking about how Patrick is doing. He even comes to the hospital to see us on the weekdays and brings Patricks siblings with to see him.

Please find it in your heart to help us out so we can keep our life going as we are going through this hardship with our son now needing a liver transplant. We are behind on our elect, cellphone, car insurance and my car payment. Not to mention we all have to eat and spend money on gas and pay for parking. I just can’t see how other family’s can go through this, I am completely lost in my head and have no room for anything else right now. We need help and this is me asking for help.

Thank you for everything that you do and say and send us. You can send Patrick letters, or a picture too and that would help him keep his mind off of everything too. He. Loves sponge bob, wrestling(wwe and ufc), basket ball(timberwolves), coloring, playing with his dogs, cars and car shows and collecting toy cars,