My heart has been very heavy the past few months. Just seeing Jacob suffer in the hospital is just horrible. I sit there and cry a lot because I just feel helpless. When he was so sick and had to be put on a bunch of meds to help him come back to us, I got in my car and I just cried and cried. I have done a pretty good job of holding things together until I get alone and start to think and then the walls just break. I cant be strong anymore. I cant be the rock. I am so beyond scared that the worst is coming. We have had doctors tell us that. That it seems like this is all the calm before the storm. We are very good friends with the ICU floor. Every nurse and doctor know us. Thats not something I want to be friends with. I mean they are all great people...but that just means Jacob has been there too much!!
This last hospital stay I realized that these people really do think of us as family. We were having nurses come from other floors to say hi and to check on Jacob. We have people from the respiratory team fighting over Jacob and who gets to see him. We have a girl from the line team who left to another job and she came to say good bye to Jacob. It was really sad and he ended up crying a little...which if you know Jacob, you know that he does NOT cry over things like that. We have doctors who work harder for us because they know Jacob and they know that he needs a little bit more attention. We have doctors that dont even have to look at past notes because they know Jacobs history by heart. We have nurses who bring Jacob his favorite things before we even get to the room because they know he loves seeing his gifts on his bed.
This is not a life that I wanted to live. I thought for sure that my 2 boys would move out and get married and give me lots of grandkids. And that Jacob would play basketball because he was so tall. But instead we get to worry about Jacob being sick all the time, and going to the hospital every few weeks, and what we are going to do with Tyler because he is left without a mom for a while, we deal with behavior problems with Tyler because he is tired of Jacob getting all of the attention. I wish that Tyler would understand that Jacobs attention is not fun! But of course he doesnt. He is only 9 and doesnt really understand a whole lot.
We know that Jacobs time is coming soon. When...well we dont know that part. But I just want Jacob to live a good life. I want him to experience things he should be able to experience. I want him to rest easy knowing that he had a good life. I am trying so hard to give him that life. To take mito away for just a little bit. To make sure that he gets experiences. To make sure that he knows that he is loved and that there are people all over who love him and pray for him daily. I try hard to make his life as normal as possible. I want him to get in trouble. I want him to do things he isnt supposed to do. He is supposed to be a tween! He is 12 years old and I want him to be able to enjoy things a normal 12 year old gets to enjoy.
Sorry this post is all over the place. I am struggling with emotions right now. I just wanted to write some of my thoughts down so I dont forget them...haha.
This is a blog about Jacob, who is 10, and his fight with Mitochondrial Disease (Kearns Sayre Syndrome) and Autism.
Friday, September 26, 2014
Hospital again?!?!
The title says it all. We were in the hospital AGAIN! UGH!!!
Last tuesday night I decided to randomly take Jakes temp. He wasnt acting very sick but I just thought I would take it. I am so glad I did because he had a fever!! Jacob never gets fevers so I knew he was sick. I waited for a little while to see if it would go down but it never did. It just got higher. So I took him to the ER. Jacob had been sick for a few weeks off and on. He has had a bunch of viral sicknesses. So the ER doc said that his blood work looked great and it didnt show any signs of infection. So we could go home because it was just a virus. I was happy because we had a very important doc appt to go to the next day. We have been waiting to see this doc and I did not want to have to cancel the appt.
I went and bought tylenol and motrin to give to Jake hoping that his fever would go away. When I gave him the meds the fever thankfully went away. So I went to sleep and woke up a few hours later to take Tom to work. I went in and took his temp and it was almost 104!! I gave him more meds and prayed that his fever would go away for this doc appt we had later that morning. Thankfully it did, but Jacob was very sick and you could tell. He had chills so bad and was in and out of sleeping. He would just sit there and whine because he did not feel good. We went to the appt and everything went good...until Jacob threw up!! It was so sad. I felt so bad for taking him out when he is obviously sick. The doc knew he was sick and wanted us to take him to PCH rather than cardons. He wanted us to see a doc at PCH and knew that we would get to see him sooner if we ended up inpatient there. I told him I would think about it and if we had to take him back to the ER, I would take him to the PCH ER.
After the appt we took Jake back home and I went to get gas because if we were going to go to PCH I needed gas and I knew that Jacob wouldnt be too happy sitting in the car while i gassed up. I got home and Karla (his nurse) said that his temp was back up to 102 and that we should probably take him back to the ER. Right as we were about to leave I got a call from Cardons ER. They said that the cultures they took of Jakes line last night came back POSITIVE for infection! And that we needed to get back there ASAP so they could admit us and start him on antibiotics. I hung up with her and the door bell rang. It was the district nurse here for our yearly appt! I was so stressed out haha. She came and I told her what was going on and to ask Karla all the questions because I was trying to get things ready. Her appt lasted about 10 min and I was ready to take Jake to the hospital.
We get there and get taken right back because they had been expecting us. So they take all kinds of blood work and cultures of his line again and we wait a few hours and finally they put us up on our floor. When we got there Jacob was getting really sick. His temp went up to 105! It was really scary. I have never seen a temp that high before. His body started to shut down. His blood pressure was starting to go low again. They made the decision to send us back to the PICU. So back down to the icu we went. We were only on the floor for 2 hours haha. Once we were there the doc was able to start him on a rescue med for his blood pressure to bring it up. Except it wasnt coming up! So he had to stay on this med for a whole day. Finally it started coming up and stayed up the rest of the time. He was on 2 different antibiotics to fight off whatever was giving him problems. They finally found what the bacteria was that was causing the infection and got us on the right antibiotic. And that did the trick. We were able to save the line and we only stayed in the hospital for 8 days! Compared to the last 2 stays, this was a breeze haha.
Last tuesday night I decided to randomly take Jakes temp. He wasnt acting very sick but I just thought I would take it. I am so glad I did because he had a fever!! Jacob never gets fevers so I knew he was sick. I waited for a little while to see if it would go down but it never did. It just got higher. So I took him to the ER. Jacob had been sick for a few weeks off and on. He has had a bunch of viral sicknesses. So the ER doc said that his blood work looked great and it didnt show any signs of infection. So we could go home because it was just a virus. I was happy because we had a very important doc appt to go to the next day. We have been waiting to see this doc and I did not want to have to cancel the appt.
I went and bought tylenol and motrin to give to Jake hoping that his fever would go away. When I gave him the meds the fever thankfully went away. So I went to sleep and woke up a few hours later to take Tom to work. I went in and took his temp and it was almost 104!! I gave him more meds and prayed that his fever would go away for this doc appt we had later that morning. Thankfully it did, but Jacob was very sick and you could tell. He had chills so bad and was in and out of sleeping. He would just sit there and whine because he did not feel good. We went to the appt and everything went good...until Jacob threw up!! It was so sad. I felt so bad for taking him out when he is obviously sick. The doc knew he was sick and wanted us to take him to PCH rather than cardons. He wanted us to see a doc at PCH and knew that we would get to see him sooner if we ended up inpatient there. I told him I would think about it and if we had to take him back to the ER, I would take him to the PCH ER.
After the appt we took Jake back home and I went to get gas because if we were going to go to PCH I needed gas and I knew that Jacob wouldnt be too happy sitting in the car while i gassed up. I got home and Karla (his nurse) said that his temp was back up to 102 and that we should probably take him back to the ER. Right as we were about to leave I got a call from Cardons ER. They said that the cultures they took of Jakes line last night came back POSITIVE for infection! And that we needed to get back there ASAP so they could admit us and start him on antibiotics. I hung up with her and the door bell rang. It was the district nurse here for our yearly appt! I was so stressed out haha. She came and I told her what was going on and to ask Karla all the questions because I was trying to get things ready. Her appt lasted about 10 min and I was ready to take Jake to the hospital.
We get there and get taken right back because they had been expecting us. So they take all kinds of blood work and cultures of his line again and we wait a few hours and finally they put us up on our floor. When we got there Jacob was getting really sick. His temp went up to 105! It was really scary. I have never seen a temp that high before. His body started to shut down. His blood pressure was starting to go low again. They made the decision to send us back to the PICU. So back down to the icu we went. We were only on the floor for 2 hours haha. Once we were there the doc was able to start him on a rescue med for his blood pressure to bring it up. Except it wasnt coming up! So he had to stay on this med for a whole day. Finally it started coming up and stayed up the rest of the time. He was on 2 different antibiotics to fight off whatever was giving him problems. They finally found what the bacteria was that was causing the infection and got us on the right antibiotic. And that did the trick. We were able to save the line and we only stayed in the hospital for 8 days! Compared to the last 2 stays, this was a breeze haha.
Jacobs birthday was AMAZING!! He first woke up in a very good mood, which is rare. But he knew it was his birthday so I was happy to see him happy. We surprised him saying that daddy AND Tyler were both taking the day off for this special day. So he was happy about that too. We let him rest and watch tv/youtube for a while until we had to get ready for the fun.
Around 1130 some of his cousins came over to say happy birthday. We invited them over, knowing what was going to happen. But Jacob still had no idea. He thought they just came to spend some time with him. A little after noon there was a knock at the door. Tom got the door and Tyler ran to the door and started yelling and laughing. Jacob looked at the door and saw Red Bird from the cardinals there!! He was so excited. He brought along some friends. Lots of people from the Cardinals organization and CHEERLEADERS!! Jacob was so embarrassed haha. It was really cute. They stayed for a little over an hour. They brought cupcakes from sprinkles and lots of awesome gifts. They even brought gifts for tyler and their cousins. Jacob got all kinds of cardinals gear. A jersey, hat, shirt, water bottle, footballs, a bracelet, ear phones, gloves, and more!! It was so nice of them to do this for our boy.
After they left we went out and did a few fun things and then it was time for more!! At around 5 some more friends and cousins started showing up for a little birthday party. We had a balloon artist and then SPIDERMAN!! Spiderman was AWESOME. He played with these kids until they all wore out haha. He was playing hide n go seek, tag, and other fun games with them. All the kids thought he was the best!!
Jacob had a pretty good birthday, I would say. The best part was seeing him open up all the cards. He was so happy. We are still opening some of them. We didnt get them all open. So we are taking our time with it. It has been such a great experience. I am overwhelmed by the support we have gotten. So many people praying for our boy and wishing him well wishes.
Around 1130 some of his cousins came over to say happy birthday. We invited them over, knowing what was going to happen. But Jacob still had no idea. He thought they just came to spend some time with him. A little after noon there was a knock at the door. Tom got the door and Tyler ran to the door and started yelling and laughing. Jacob looked at the door and saw Red Bird from the cardinals there!! He was so excited. He brought along some friends. Lots of people from the Cardinals organization and CHEERLEADERS!! Jacob was so embarrassed haha. It was really cute. They stayed for a little over an hour. They brought cupcakes from sprinkles and lots of awesome gifts. They even brought gifts for tyler and their cousins. Jacob got all kinds of cardinals gear. A jersey, hat, shirt, water bottle, footballs, a bracelet, ear phones, gloves, and more!! It was so nice of them to do this for our boy.
After they left we went out and did a few fun things and then it was time for more!! At around 5 some more friends and cousins started showing up for a little birthday party. We had a balloon artist and then SPIDERMAN!! Spiderman was AWESOME. He played with these kids until they all wore out haha. He was playing hide n go seek, tag, and other fun games with them. All the kids thought he was the best!!
Jacob had a pretty good birthday, I would say. The best part was seeing him open up all the cards. He was so happy. We are still opening some of them. We didnt get them all open. So we are taking our time with it. It has been such a great experience. I am overwhelmed by the support we have gotten. So many people praying for our boy and wishing him well wishes.
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