So a lot of medical stuff has been going on the past few months. In the beg of august I took you to see an allergist. You have always had a little bit of a tummy issue. You never really went poop a lot like a regular person. I don't ever remember you being a regular pooper…ever! So since I always hear that autistic kids have a lot of allergy problems I thought that I would see if you were allergic to anything. When we got there they told me that they couldn't really do much until I took you to a GI doc to rule out more tummy issues. When we went to the GI doc he told me it was just a classic case of constipation and that we needed to increase your fiber and you should start going again. So back to the allergist we went. He did the tests and it all came back fine! You were not allergic to anything food related. We were so happy!
So we go back to GI for our follow up. I tell the doc that increasing your fiber did not really do anything at all. So he said…let's do a few tests and see if that shows anything. So we did an x-ray and blood work for celiac disease, testing your thyroid, and then just a normal blood count. I didn't hear back from the doc for a few weeks so I figured everything came back fine. One day daddy called me and said…um Jacob's doc office has been trying to get a hold of you. You never gave them your new phone number. I had forgotten that they had the cell phone number and I no longer had that phone anymore. So I get a hold of the doc and they tell me that your x-ray showed that your colon was full of poop. And that we needed to put you on a clean out. We needed to give you miralax and xlax 6 times a day for 4 days. So we did that….and nothing happened. I called the doc the next day after the clean out ended and she said…well do it again. Sometimes if it's been sitting there for a while it takes a little bit of time to break up. Try it again and it should work. So that next weekend we tried it again. I had an appt with the GI on Monday so I went back to him and told him…nothing worked. He wanted us to get another x-ray done ASAP. And if it showed that he still had poop in his colon, Jacob would have to be admitted for a clean out that they do in the hospital. So we took you right away and went to the x-ray. They called me the next day and said that sure enough, it showed MORE in your colon. So a few days later they called me and said they were ready for you to come.
This was our first hospital stay for anyone in our family. I was not sure what to expect and I know you didn't know what to do either. They called us at 5pm and by the time we got there and up to our room it was around 7pm. That's also when the nurses change shifts. So it took a while for us to get things started. I was just anxious for things to get started and to get out of the hospital. Around 9pm they told me that they were going to take you and put a NG tube in. They took a small little tube and put it down your nose and down your throat and into your stomach. They sedated you so you were a little sleepy but you definitely felt what was going on. I could hear you screaming from the other room and it just broke my heart. As your mom, I really hated seeing you in so much pain. I just cried because I wanted all that pain to go away. I didn't want you to feel like that anymore. When you came back you looked so sad. I could tell that you were crying and it broke my heart even more. Well you started crying again because you couldn't swallow or close your mouth with that tube in. And you cried and cried until around 11pm. Finally we got you to calm down because you wanted to go on a little walk. So I told you that you had to stop crying if you wanted to go on a walk because we didn't want to wake up the other kids that were on the floor. We also had a roommate and we didn't want you to wake him up either. 48 hours later you were released because you were cleaned out!! Yipee!! I was so excited to be out of that place and not have to deal with the yucky clean out process again.
That night you told me your head hurt. I just told you to go lay down and you kinda shrugged it off so I did the same. A few days went by and you complained again of another headache…and same thing happened again. You just shrugged it off so I did the same. Tuesday night you started just screaming! Daddy and I were so scared we had no idea what was going on. When you scream in pain like that we know something is seriously wrong because you have such a high pain tolerance that nothing hurts you. You said that your head hurt so very bad. So we told you to go to bed and you did. About an hour later you came back out seeming fine and sat on the couch and watched tv. I looked over and you were lying on the chair with a blanket and a pillow over your head. I am pretty sure you either had another migraine or that it never went away. The morning came and I asked if your head still hurt. You told me it did so I said well you will have to stay home from school and you can't go to scouts tonight. He told me…I think I need to stay home but I still can go to scouts. So I figured you were faking and sent you on your way to school. Just in case you were not faking I wrote a little note to your teacher just saying that if you got a headache to call me ASAP and I would come get you. About 9am I get a phone call from the front desk lady at your school and she said that you were in class and complained that you had a headache. Your teacher asked if you wanted to go lay down and you said yes. So she got you up and started to walk across the hall and you then passed out. So I ran out of the house and ran to the school. When I got there I got another phone call that said to not freak out but they had to call the fire dept to come and check you out. When I got there you were on the couch and you just looked so sick. Your teacher said that when she saw you, you were so pale. You looked almost grey! So they were taking your blood pressure and you had to stand up for it. When you stood up you passed out again! So they decided that you needed to be taken to the hospital. They called an ambulance and they took you to PCH (Phoenix Children's Hospital) When we got there they told me that while you were in the ambulance they pressed on your tummy and you said that it hurt. So they wanted to do more x-rays and see where you stood from there. So once the x-rays came back they told me that there was MORE poop in there than there was when you went in the first time that last week. The doctors were all confused on why it was coming back so fast. So once again, they wanted to admit us to the hospital to take care of it. So we went home with them saying that we needed to wait for a call. Wednesday went and came…so did Thursday, and Friday…and most of Saturday. You were still having headaches and your stomach hurt and we knew that we had to get you into the hospital. Grandma and Grandad were really worried and so they called the doc themselves and told him that you really needed to be admitted and fast! So our doc told us to take you back to the ER. That way you would be there and they would have to admit us. So we did. They did more x-rays and again showed that there was a lot of poop in there. So we were in the ER for 4 hours before they FINALLY took us up to a room.
This time around we knew what to expect. It was so much easier on us all. You knew what was going on and we also knew what to do. We were prepared for the long nights and for the bed and diaper changing every 20 min or so. Well when we got up to your room we found out we had a roommate. It made it hard because your roommate needed a lot of attention also. So it kept us up most of the time. We didn't get much sleep. You got admitted on Saturday night and we were told that nothing was going to happen until Monday morning. So we were just hanging out in the hospital until Monday when the procedures would happen. You had to get an MRI and also a barium enema. Those are not fun tests for you. The MRI you had to be put out. So while they put you out we requested that they put the NG tube in while you were sleeping. It was so much easier being able to get it done that way because you woke up and it was already in! All the tests they did on you came back fine. They said that you did not have any of the diseases that they had thought you had. So that was very good to hear!
Right now you still are not going poop like we want but you are definitely going more than you were before. We go see the doc on Nov 1st so hopefully they will get us on something that will help you. I hope all of this madness is over with but your doc told me that this is probably going to be a way of life for us. And that you will need many clean outs. Let's just hope it's not every week!!
Love ya buddy
Mommy
