I arrive there, still crying of course, the nurse at the window told me they want me to come right back. I don't have a cell phone so I had not called my husband yet to tell him what was going on. The nurse told me if it was that low that we would probably be going to the hospital which just freaked me out even more. I called James at work to tell him what was going on, and he said he would find a way to the hospital(we only have 1 vehicle), but to call him back and let him know if we were going for sure. I told him I would, and went back to the room. The nurse took some measurements and weighed him again. She also took his blood pressure. The doctor came back asked me a few questions,a nd then told me that we weren't going to be going to our local hospital, but to the children's hospital in Charlotte to the ICU. She then told me that she had to call them back to let them know I was coming which seemed like it took forever. Once everything was settled I called my husband to let him know that I was on the way to get him because we had to take him to Charlotte.
I arrived at his work,a nd he was already outside waiting. We swapped so that he was driving, and off we went. We got there about 30 minutes later, and they were waiting on us. When I got there I called my mom to see if she could come up from Myrtle Beach to watch our oldest daughter Jade. There was alot of information given while we were there. I cannot remember it all to be honest. I know they said they were going to be giving him a blood transfusion which is why we were in the ICU. They wanted him in the ICU just so that if he had any adverse reations to getting the blood he would be in the right place for it. They also said they were going to give it to him over a 4 hour period. I know I spoke witht he hemotologist,a nd she said when they measured his blood there it was at a 4.8 and it was supposed to be between a 10 and 13. They gave me some other numbers too, but they basically said that it was due to his diet. Since Riley is such a picky eater he wasn't getting enough iron. We didn't notice any changes because this happened over a period of time. Riley has always been pale so I never though anything of how pale he was. I figured he was just a pale person.
Riley got his first transfusion, and everything went well. While he was getting his transfustion my mom arrived and stayed for a bit. I filled her in on what was happening. A little bit later she took Jade and went to my house. A little while later they told us he would be getting another transfustion in 6 hours that would last for another 4 hours. The hemotologist said that it was ok for him to be moved to a regular room so they had one waiting for us. They had to have the main doctors ok before they could move us to a regular room. The dotor came by at about 10:30pm to give us the ok, and we finally got moved to the room at about Midnight. We were exhausted. At 2am it was time to start the next transfustion.
The next transfusion started and we were all sleeping. It was exausting. I was tired. Riley was fed up with people messing with him, and you never get any sleep in a hospital when someone is contantly coming in to change the iv bag or to take vitals. We all slept through most of the second transfustion. They had told us after the 2nd transfusion they would be taking blood to check his levels. They came in at about 8am to take his blood. They had to stick him to take the blodd because for some reason that is still unknon to me they couldn't do it from his iv. The nurse poke him in his hand and kind of poked areound for a bit. Then when that didn't work she went for his arm. She poked him in his arm and all I could see was wehre she was shoving the needle around like she had no idea what she was doing, but was kinda hoping she would get lucky and find the vein. This made me so mad I had to walk out of the room before I said something I regreted. Riley stayed int he room with the 2 nurses whild James held him. I came back later,a nd they had gotten the blood they needed after having to poke him another time. The nurse later told me that they had so much trouble getting the iv in because his blood volume was low. This sturck me as they thought I was stupid so someone plese correct me if I am wrong. Having low iron shoudn't have anything to do with having a low blood volume, and even if it does he had just finished getting a transfusion so it shouldn't have been low anyways. I think she was full of it, and just coming up with some excuse.
The hemotologist came in a bit later, and said that his iron levels were up to 6.8. She told me that there was still part of the unit of blood left so they were going to give him that too which should take about another 2 hours, and then after that they were going to give him some iv iron which would take an hour. After the iv iron they would do blood work, and then about an hour after the blood work we should get to go home. She also told me that she was going to prescribe an iron supplement that I need to give him by mouth 2 times a say. She said it doesn't taste that great so I might have to think of some crative ways to give it to him. She also siad that until his levels get back up to where they are supposed to be and they get built back up that I would probably have to bring him in once a wekk for iv iron. She said that the second time they give him the iv iron it wouldn't take an hour it would only be 30 minutes. The first time they give him the iron they wanted to give it to him slower so that they could make sure he didn't have any adverse reactions to it. Riley got his 3 transfusion, and then the iron. Everything went fine. Then they came back in to get blood. The nurse poked his hand first, and of course couldn't find the vein which was just making me mad all over again, and I think they could tell bec ause she called to have a nurse named Deb come in and put it in to draw the blood. Deb had it in and ready to go in under a minute. That's what I am talking about. Of course the other nurse was trying to say she was having troubles because of his low blood. Anyways they took the samples a little bit later the student nurse came in to check vitals, She was a really sweet lady. She said she would find out when we would getting discharged. She came back and told us within the hour. About an hour later we got to leave yippie.
As of right now Riley's diet needs to change to include more iron which is challenging because of the sensory issues he has. Also he is going to be getting the iron supplement, and then I meet with the hemotologist on Tuesday to get the iv iron for him. I have to take Riley to speech therapy tomorrow. I had to cancel the play therapy that was for today, and that might be getting reschedueled for Friday, and then I also have his new speech therapist that is going to be coming out to the house this Friday as well. Also while we were in the hospital the occupational therapist called as well so I will be having to call them back tomorrow as well. All of this plus his birthday coming up on the 17th which we are going to be having in Myrtle Beach. My days are running together. I know it will get easier with time, but it just seems like alot right now. Really I am just happy that Riley is ok, and he is going to be fine.
Riley is happy to be home, and has been playing with his toys. I am going to post some before and after photos of Rileys skin tone to see if you can tell a difference as to if he is less pale.
Here is the before picture. This was taken on May 22nd.
These are photos that were taken today when we got home from the hospital.
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