Tonight was a rough one for Jacob. He was supposed to be sleeping and I hear him crying. So I go to his room to see what is wrong. Naturally I thought he was in pain somewhere. But then he says hes fine and he doesnt want to tell me whats wrong. Finally I coax him into telling me whats wrong. He tells me that is he sad because he doesnt have a friend. I tell him that he has tons of friends!! He says no, he wants a best friend. I tell him that he has his brother who is his best friend and I kinda leave it at that. I leave and he calls me right back in. So I go in and he says, you want to know why I was really crying? He said he wishes he had a best friend. A kid who has no medical problems. So that he could cheer him on when he is in the hospital and someone to cheer him up when he is sick. This just about broke my heart. I feel so bad for him. I wish he had friends. I really do. I just wish I could do more for him. I cant make a kid be his friend. We have tried to have boys come over and play minecraft. But its not fun when they can only stay for a short time before Jacob is tired and needs to sleep. Or his TPN needs to be changed, or he needs his meds, or something that scares the kid off and he never wants to come back and play.
It got me thinking about my own life. I told him, I dont have friends either. I know what its like to not have any friends. Sure, I have lots of people I call a friend. But I dont have many who I can call at a minutes notice and go hang out. Or someone who knows when im having a bad day and we get to go out and forget about things for a while. I used to...but not anymore. I miss having my best friend here. I get lonely and wish I had friends to hang out with during the day. But kinda like Jacob, once they get to know my life...they leave. Its not a desirable life. I am stressed out beyond stressed, I rarely get time for myself, I have to put Jacob first. And in many times I have had to cancel last minute because of something with Jacob.
Moving into a new subdivision has been hard. Lots of awesome people I would love to be friends with. But the reality is that no one really wants to be my friend. I dont have little kids like everyone does. I dont go to playgroups or park days. I dont sit outside while my kids run around and play with the other kids on the street. The kids are all much younger than Tyler and Tyler has no desire to really play with kids who are a lot younger than him. I take Jake out for walks in his wheel chair. I see everyone starring. It doesnt bother me. It doesnt bother Jacob either. Thats our normal. I am sure its weird to some people. They see us and im sure they think that we would be much better off not being bothered. That we have enough to handle and we dont need people bothering us. But its the exact opposite. We would LOVE to meet more people and have them as friends. We NEED time away! We need to destress sometimes.
I guess the moral of this post is that we have each other and thats really all that matters. Jacob and Tyler are each others best friends. I know to Jacob, thats not enough. He watches all these shows on Disney and nickelodeon and they all have best friends. I hope that Jacob realizes he has a ton of people who are always cheering him on when he is in the hospital. I told him next time, I will show him all the posts from people. He has the biggest cheering section. He has tons of people who love him. He will understand that one day, I hope.
This is a blog about Jacob, who is 10, and his fight with Mitochondrial Disease (Kearns Sayre Syndrome) and Autism.
Friday, October 3, 2014
Friday, September 26, 2014
Some thoughts
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 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.
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.
Wednesday, August 27, 2014
Jacob's birthday
After our big scare at the hospital, we thought we wanted to do something really great for Jacob for his birthday. He was feeling really down and knew that his birthday would be so horrible this year. So I wanted to make him have the BEST birthday, yet! So I decided that I would set up a PO box and see if I could get a few people to send him some cards. I got the smallest PO box they have and thought I would just pick it up the day before his bday. I posted it on his facebook page and it blew up from there!! People were sharing his facebook page left and right. I was so shocked! I didnt think it would take off like it did.
A friend of Toms gave us dbacks tickets from his work. They donated them to us and it was amazing. And then Tom works with a guy who knows 2 of the dback players. So he talked to one of them and told him we were coming to the game. And what they did was amazing. They got a jersey for Jacob that had the name Priestley on the back! And he also gave him a signed ball. And then took him and Tyler to the clubhouse where they got to meet a few players. And the best day of Tylers life came, when he got to meet his idol, Aaron Hill!! So the game starts and we are all flying high! It has been a great game and then someone comes and sits behind us and says to tom "are you tom?" He says yeah, and the guy says "Is this your son?" And Tom says "yep, thats Jake!" And then the guy talks to Jake a little bit about his jersey and then says "here I got this hat for you to match your jersey" and gives Jake a hat!! It was so awesome. Then the next inning they put us on the jumbotron and says we would like to welcome Jacob Priestley and family to the game! It was awesome. We had such a great time and Jacob was so happy and smiling the whole game.
The next day Tom sends a message to all of the news channels about a letter he wrote to the dbacks saying thank you. Someone from Channel 10 emailed him back and said they wanted to do a follow up story on him and Jake. So they came over later that day and did a news story on him. It aired the next morning and it was great. Here is the link to that. http://www.fox10phoenix.com/story/26372078/2014/08/26/d-backs-create-special-day-for-boy-battling-life-threatening-disease
There is still tons more to come when his birthday actually gets here tomorrow. I cant wait!! It has been such a great week so far and I love seeing him so happy.
A friend of Toms gave us dbacks tickets from his work. They donated them to us and it was amazing. And then Tom works with a guy who knows 2 of the dback players. So he talked to one of them and told him we were coming to the game. And what they did was amazing. They got a jersey for Jacob that had the name Priestley on the back! And he also gave him a signed ball. And then took him and Tyler to the clubhouse where they got to meet a few players. And the best day of Tylers life came, when he got to meet his idol, Aaron Hill!! So the game starts and we are all flying high! It has been a great game and then someone comes and sits behind us and says to tom "are you tom?" He says yeah, and the guy says "Is this your son?" And Tom says "yep, thats Jake!" And then the guy talks to Jake a little bit about his jersey and then says "here I got this hat for you to match your jersey" and gives Jake a hat!! It was so awesome. Then the next inning they put us on the jumbotron and says we would like to welcome Jacob Priestley and family to the game! It was awesome. We had such a great time and Jacob was so happy and smiling the whole game.
The next day Tom sends a message to all of the news channels about a letter he wrote to the dbacks saying thank you. Someone from Channel 10 emailed him back and said they wanted to do a follow up story on him and Jake. So they came over later that day and did a news story on him. It aired the next morning and it was great. Here is the link to that. http://www.fox10phoenix.com/story/26372078/2014/08/26/d-backs-create-special-day-for-boy-battling-life-threatening-disease
There is still tons more to come when his birthday actually gets here tomorrow. I cant wait!! It has been such a great week so far and I love seeing him so happy.
Wednesday, August 13, 2014
The worst hospital stay, yet!
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.
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.
Darn TPN!!!
So around the 2nd week of June, I started to see some changes in Jake. He is normally very pale looking. Well he looked like he had some color. He didnt look so pale. So I kinda thought something was wrong. I didnt think much into it because he was acting pretty normal. His nurse came a few days later and I asked her what she thought and she agreed that something just didnt look right. So I called his pediatrician to get an appt in to see what he thought. I had talked to my mom about it and said he looks kinda yellow but it was hard to see. Well we went to her house and Jacob came with me. And when we got there, he was VERY yellow. I knew in fact that something was not right. Thankfully our appt with the doc was that afternoon. So we got in and he agreed that he looked yellow and wanted us to get blood test done right away. We had scheduled one for the beg of the next week but he did not want us to wait. It was a friday afternoon and I knew it would be hard to get a blood test done. We have to get our home health nurse to come and draw his blood out of his broviac. If we dont have a scheduled appt with her, its pretty hard to get her to come. The doc wrote a STAT order and sent it over to them. I called her and she said she was actually right around my house and she would come right then and take the blood. She came and got it to the lab just in time! It was supposed to close about 10 min later.
So we knew we would get the results back that following week so we didnt stress out much about it. Saturday came, and Tyler had a basketball game. So Jacobs nurse came that morning and we went to his game and had a great time. We decided to go get some lunch after his game. On our way to lunch I get a phone call. It is from a GI doctor ive never heard of. So I was a little confused why she was calling me. She said that Jacobs liver enzymes were VERY high and we had to get him to the hospital IMMEDIATELY!!! She said that something could be seriously wrong and he could be in danger. So the faster we get him there, the better things could be. We rushed home and packed up some bags and drove to the ER. We sat in the ER for 5 hours while they did test after test trying to figure out what was going on. I was just so worried because I had no idea what was wrong and they were not telling me much. They admitted us so that they could do more tests and watch him closer. When they did the ultrasound to see if his liver was enlarged, they found that his gallbladder was big and it was full of sludge. That was not the cause of the high liver enzymes but it was a problem we had to take care of. Thankfully we caught that because that could cause a lot of pain.
After all the testing it was proving that the TPN was the problem for all of this. Being on TPN is very hard on your liver. And so it was really effecting Jacob and his liver...and also his gallbladder. TPN is hard on almost every organ it touches! And being on it 24 hours a day is not good. The more you are on TPN the harder it is on your organs. So they took him off TPN for a few days and his numbers started to normalize. They changed around his formula and then said we could no longer be on 24 hours. Jacob gets dehydrated VERY fast and VERY easy, so it was difficult to take him off of 24 hours. So they upped his fluid in the bags and gave him supplemental fluid that would run at the same time as his TPN but once the TPN stopped, the fluids would still run. That is different on your organs because its just normal saline and has no long lasting effects.
The doctors were finally satisfied with his numbers and how everything was...and we were all set to go home!! And then they came in to change Jacobs dressing on his broviac. And it was draining some nasty stuff!!! So the surgeon was called in to look at it. And what do you know? He has a staph infection!! They took cultures from the drainage and sure enough, it was a staph infection!! So that kept us in a week LONGER!!! We were so mad. The ended up having to pull his line because it was not getting better despite him being on some really heavy duty antibiotics. So they pulled it and placed a PICC line in his arm. Its the same thing, but its just used for short term access rather than long term like the broviac. The day they placed pulled his line and placed the PICC line, jacob started having tummy troubles. It was then determined that he had contracted CDIFF. And then the doc told us just to go home haha. We had to wait another week to get his broviac placed again. But they said that since he was just getting sicker staying at the hospital, we should just go home!! So they gave us the meds he needed IV form and sent us home. It was pretty funny. But we were so glad to be home.
So we knew we would get the results back that following week so we didnt stress out much about it. Saturday came, and Tyler had a basketball game. So Jacobs nurse came that morning and we went to his game and had a great time. We decided to go get some lunch after his game. On our way to lunch I get a phone call. It is from a GI doctor ive never heard of. So I was a little confused why she was calling me. She said that Jacobs liver enzymes were VERY high and we had to get him to the hospital IMMEDIATELY!!! She said that something could be seriously wrong and he could be in danger. So the faster we get him there, the better things could be. We rushed home and packed up some bags and drove to the ER. We sat in the ER for 5 hours while they did test after test trying to figure out what was going on. I was just so worried because I had no idea what was wrong and they were not telling me much. They admitted us so that they could do more tests and watch him closer. When they did the ultrasound to see if his liver was enlarged, they found that his gallbladder was big and it was full of sludge. That was not the cause of the high liver enzymes but it was a problem we had to take care of. Thankfully we caught that because that could cause a lot of pain.
After all the testing it was proving that the TPN was the problem for all of this. Being on TPN is very hard on your liver. And so it was really effecting Jacob and his liver...and also his gallbladder. TPN is hard on almost every organ it touches! And being on it 24 hours a day is not good. The more you are on TPN the harder it is on your organs. So they took him off TPN for a few days and his numbers started to normalize. They changed around his formula and then said we could no longer be on 24 hours. Jacob gets dehydrated VERY fast and VERY easy, so it was difficult to take him off of 24 hours. So they upped his fluid in the bags and gave him supplemental fluid that would run at the same time as his TPN but once the TPN stopped, the fluids would still run. That is different on your organs because its just normal saline and has no long lasting effects.
The doctors were finally satisfied with his numbers and how everything was...and we were all set to go home!! And then they came in to change Jacobs dressing on his broviac. And it was draining some nasty stuff!!! So the surgeon was called in to look at it. And what do you know? He has a staph infection!! They took cultures from the drainage and sure enough, it was a staph infection!! So that kept us in a week LONGER!!! We were so mad. The ended up having to pull his line because it was not getting better despite him being on some really heavy duty antibiotics. So they pulled it and placed a PICC line in his arm. Its the same thing, but its just used for short term access rather than long term like the broviac. The day they placed pulled his line and placed the PICC line, jacob started having tummy troubles. It was then determined that he had contracted CDIFF. And then the doc told us just to go home haha. We had to wait another week to get his broviac placed again. But they said that since he was just getting sicker staying at the hospital, we should just go home!! So they gave us the meds he needed IV form and sent us home. It was pretty funny. But we were so glad to be home.
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