So after our last hospital stay, things were going good! Jacob had finished his antibiotic and was feeling pretty good. We decided to take him out to see fireworks. That is something we NEVER do, but we really felt like we should this year. So we took him out and had a great time. He fell asleep in the middle of it...but who cares. He loved it and thats all that matters.
A few days later he started throwing up. Its weird because he has NOTHING go in his stomach except meds. And so he shouldnt be throwing up. We knew something had to be up but the doctors didnt seem concerned so we werent either. Doc gave us meds to help the nausea but that didnt seem to help much. He was throwing up 8-10 times a day. And it was all just bile. And when he threw all of that up, he would just dry heave. After a week of throwing up, we took him to the ER because things just were not getting better. They did blood work and a bunch of tests and said everything looked good. There is nothing indicating a problem. Gave us different meds that seem to be working. It would help for about 4 hours and as soon as the 4 hours would come, he would be throwing up again!
He started sleeping A LOT. We thought it was the meds because it is a mild sedative and we also have to give him benadryl before because he had a little allergic reaction to it. So that would make anyone sleep. But he was sleeping 18-20 hours a day. And I would only give him the meds like once or twice a day. He would wake up to throw up and then go back to sleep. We realized that he was getting worse and not better. His heart rate was also a little elevated. So we took him to the pediatrician. He didnt say much either. It was all the same advice. Just make sure he isnt getting dehydrated and watch him closely. The next day he started getting a fever. With the broviac, if he has a temp over 100.4 we need to take him to the ER. His temp kept getting up to that point and then would go back into the 99 range. So we just watched it all day. Around afternoon it was staying around 100-101 and his heart rate was a little higher. So his nurse told me that it was time to take him back to the ER. This time we went with more symptoms and they really took us serious. They were thinking of admitting him straight to the ICU because of his heart rate. The ICU doctor came to look at him and said he seemed ok enough to go to the regular floor. So they admitted us to our favorite 4th floor. We got there and his favorite nurse was on staff and she was so excited to see him. We got all settled in and just waited while he slept...and slept...and slept. No one saw any smiles from him or any jokes. This is NOT typical Jacob. Even when he is sick he is still smiling and talking. Especially about minecraft. But no one could get him to talk about minecraft either!
A few days passed and things were still more of the same. He was getting anti nausea meds around the clock so his throwing up got less and less which was good. We were in the process of moving. So I had left and we went to our new house to look at some things. On the way there I got a call from the oncall ped saying that due to his heart rate going even higher we needed to get him to the ICU right now. I called my mom because we were not even close to going back to the hospital and someone needed to be there with him. So she hurried up down to the hospital to pack up our room and stay with him until they got to the ICU. When we got back, he was still in his regular room, thank goodness. They transferred him about 20 min after we got back there. It was crazy when we got down there. Lots of nurses and doctors in the room trying to do all kinds of tests. The doctor did a spinal tap and Jacob was a rockstar!! He did so good. They took more blood to test for different things. When they were getting the spinal tap, someone called from the lab with critical lab results. They said his lactic acid was at a 6...normal is 1. But no one seemed really concerned. I was, because I know a little bit about high lactic acid. Its VERY common with mitochondrial disease.
Things in the ICU were a whole lot different. We had 1 nurse and she was just for us. She would sit right outside his window and watch his monitor. We had to keep the door open and people were in and out all day and all night. The floor has their own doctor thats oncall at all times. And they are a whole lot more efficient on that floor. It was different, but we really liked it. I liked the attention that he got. We would have to wait 30 min sometimes for a nurse to come turn off his beeping pump upstairs on other floors because they have so many other patients. So this time, when his pump went off, she came right in to turn it off. We also loved the nurses. We had some great ladies who seemed to really care about him. And they were a great listening ear for me, as well.
Jacob started to have a lot of confusion and hallucinations. It was kinda scary. He would wake up and start saying weird things. And then go right back to sleep. They were taking his blood daily because it was changing so much. His levels were all over the place!! They had no idea why he was so sick. But something was going on. They did a spinal tap, blood cultures, lots of blood work, and ultrasounds and MRI...it was always something! But NOTHING was showing what was wrong. There was just lots of things that pointed to what was wrong. But they were all symptoms of something big. But no one could figure out that big thing. They knew he was VERY sick and most likely was not going to come out of this sickness. They didnt have much hope for him. I have never given up hope...but this time I did. We knew for sure this was the end for Jacob.
Then the scariest day of my life came. This day was odd because he just got really sick. His respiration's were in the 50's and 60's, his heart rate was 160-200, and his blood pressure was really low!! The doctor came in and said that they needed to get an art line put in him! That is an IV type thing that goes into the artery. And it is able to give us real time blood pressure readings. So they were able to watch it closer. She made us go into a different room while they did it. Tom had just gotten off work so I was going to take him back home while they did all of this. My mom and my sister were there with Jacob so I felt ok going home. I went home and I just felt sick to my stomach. I just couldnt stay here. So I went back up tot he hospital and I went to go in his room and they were still doing the procedure. It should of only taken them 5 min but it was going on 30 min. I found my mom and my sister and I was talking to them for a while and about 15 min later the nurse came in and said they are almost done. His blood pressure went even lower and they had to give him a lot of emergency blood pressure meds to make sure he didnt crash. It was so scary! But they got everything in, and let us go and see him. He was still very sick and sleeping but we were so happy he came through it all ok. We thought that was when we were going to lose him. I just kept praying over and over again to please dont take him yet. I am not ready! I wanted him to see our new house...his new room. I wanted him to turn 12! Have his birthday party this year. I wanted to do so much more with him. I was so scared. My dad and brother in law came over and gave him a blessing and prayed over him. My dad basically told him not to be scared. And to be comforted. We all felt a STRONG presence of angels in the room. I knew we were headed down from there. I went home that night and my sister stayed with him. And I guess during the nigh he made a HUGE turn around. He woke up and was up and talking for a while. His blood pressure was stabilizing. His fever went away and they were able to take him off one of the emergency meds. It was a miracle!! He should NOT of pulled through this. The doctors were all shocked. They kept telling me that he shouldn't of gotten better. All I k now is that there is a reason Jacob was not taken from us. There is a reason that he got better! We stayed about a week and a half longer, but he just kept getting better and better!!
There are A LOT of things that got taken from him that we wont ever get back. But at least I have my son! The doctors keep telling me that he is still very sick. ANYTHING can trigger the lactic acidosis and make his body shut down again. We have to keep him very calm and away from any germs. But I will do anything just to have him longer. We have had to modify our lives and Jacobs live a bit but thats all little things now. We will celebrate every single day we have with him. Because we dont know how much longer we will have with him. And we do not want to take anything for granted.
This is a blog about Jacob, who is 10, and his fight with Mitochondrial Disease (Kearns Sayre Syndrome) and Autism.
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