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Saturday, January 29, 2011
Day after surgery
We found out that his ultrasound was good. He didnt have any clots. They tried to do labs today and at first they were unsuccessful. The cardiologist came in and did his echo. The cardiologist told us that he found a decent size clot. The doctors talked it over and they are gonna start the anticolagant twice a day to hopefully keep more clots from forming and getting bigger. They have to take labs everyday. Humph they are concerned with the veins collapsing and not being able to use them. The thing is they dont have enough veins to keep taking blood. They are talking about putting a pic line in they want to wait however we feel that they may have to consider this earlier than they want. He will have to be on the antcolagant for 3 months and the antibiotics for 2 to 4 weeks. Due to the cultures coming back positive. thanks to all. Will update when we know more.
Friday, January 28, 2011
Surgery day update
Today eli had his surgery. Heather and i came up about 730 this morning. We talked to the docs as we do every morning. Explained what was gonna happen and said that there was as always no guarentees on the time. The infectious disease doc came in and told us that it would be most likely 2 weeks more after today. This was to allow the antibiotics to do there job and that they dont send it home with families. We also won't know about the anticolagent for his clots until we know if they were taken out during surgery. Eli also has to have 2 negative blood cultures which can take up to 6 days to get the results back before we know what else we need to do.
At 120 we went to the recovery room and met with the surgeon really nice guy and the anestiaologist. We really liked her she understood mito and was 100% willing to follow the protocal. It took about 45 minutes then he went back. The surgeon came out and explained that the port came out easy. He was unsure of the clot if it came out or not so he sent it out to be tested. He also took blood cultures and took some cultures from inside of eli where the port was to check on infection.
About an hour later i went up and had them call back to see how he was doing. They said he had a fever and that his o2 stats were not where they would like them to be. So they put him on a 1/4 l/hr and tylenol and fever broke quick and o2 levels came back to normal. When he came out he was wide awake. It was amazing he has never been that way after surgery. He usually is sleeping and very hard to keep stats at a decent level.
We went upstairs back to the peds floor which another thing that never happends always in the picu for atleast 24hrs. When we got to the room he wanted mama and he played abit and hung out with us he did very well. I must say i'm very happy that they followed the mito protocol that they followed i really believe that made the difference.
He is now sleeping he is beat. Too bad he has his ultrasound tonight at nine to see about anymore clots. Crossing fingers that all will be show none. Positive thoughts. I'm sure he will go back to sleep. Will update more when we can. Good night all and thank you for all the positve thoughts and prayers and help that we have recieve.
At 120 we went to the recovery room and met with the surgeon really nice guy and the anestiaologist. We really liked her she understood mito and was 100% willing to follow the protocal. It took about 45 minutes then he went back. The surgeon came out and explained that the port came out easy. He was unsure of the clot if it came out or not so he sent it out to be tested. He also took blood cultures and took some cultures from inside of eli where the port was to check on infection.
About an hour later i went up and had them call back to see how he was doing. They said he had a fever and that his o2 stats were not where they would like them to be. So they put him on a 1/4 l/hr and tylenol and fever broke quick and o2 levels came back to normal. When he came out he was wide awake. It was amazing he has never been that way after surgery. He usually is sleeping and very hard to keep stats at a decent level.
We went upstairs back to the peds floor which another thing that never happends always in the picu for atleast 24hrs. When we got to the room he wanted mama and he played abit and hung out with us he did very well. I must say i'm very happy that they followed the mito protocol that they followed i really believe that made the difference.
He is now sleeping he is beat. Too bad he has his ultrasound tonight at nine to see about anymore clots. Crossing fingers that all will be show none. Positive thoughts. I'm sure he will go back to sleep. Will update more when we can. Good night all and thank you for all the positve thoughts and prayers and help that we have recieve.
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Surgery day
Published with Blogger-droid v1.6.6
Wednesday, January 26, 2011
kc day 4
After doing some test they found that Eli has a blood clot on his port. They have also informed us that he has a full blood infection due to our last hospital stay. When eli was went to wesley in wichita they didnt check for any of these things. All they said was that he had an infection. If they would of checked is blood they may of found the infection of the blood and some of this may have been avoided.We talked to the hemotolgist and infectionous disease doctors and they say they say that there are two options on the clot and infection. One we maybe able to treat with antibiotics and blood thinners inorder to save the port. However if the antibiotics dont work then the port will have to be taken out. The main doctor on the PICU has made it clear however that if we need to do surgery then he wants the infection under control because they will have to put in an IV however this may spread the infection.If they cant get the infection to stop then they will have to due surgery. So it's very complicated.
We were told during the night last night that his port has stopped working and they may have to take it out.Eli's heartrate and respiration has been high since he has been here. He also had a fever. This morning we will be talking to the doctors on options on the possible removal of the port.
I just want to say thank you for all the support we have been given. All the prayers and postive thoughts. All the helpful suggetions. And the food and the snacks that have been brought up. It is so humbling to have such great people to give that type of support. Especially when we dont fell the hospital is really giving any of that.
I will try to post later when we know more. We are still kinda in communication limbo with very little ways to communicate.
We were told during the night last night that his port has stopped working and they may have to take it out.Eli's heartrate and respiration has been high since he has been here. He also had a fever. This morning we will be talking to the doctors on options on the possible removal of the port.
I just want to say thank you for all the support we have been given. All the prayers and postive thoughts. All the helpful suggetions. And the food and the snacks that have been brought up. It is so humbling to have such great people to give that type of support. Especially when we dont fell the hospital is really giving any of that.
I will try to post later when we know more. We are still kinda in communication limbo with very little ways to communicate.
Tuesday, January 25, 2011
communication
Sorry for the minimum communication phones don't work well, no labtop, and can't really use the hospital phone for long distance without approval everytime.
I will try to update later when computer becomes available.
Thanks to all of your prayers and postive thoughts
I will try to update later when computer becomes available.
Thanks to all of your prayers and postive thoughts
updates
Thursday we were discharged. We were not able to bring home any additional fluids. He was so sensory overloaded during the leave of the hospital. We were going to the car and something fell off the cart and he just cried. Heather and I tried to comfort him with very little success. We got home and saw the family. We then layed him down in his bed and all he would do is cry. I felt so bad for him I went into his room and talked to him. Heather went in and held him. Nothing seem to work. He finally fell asleep about 9:00pm
Friday... Our little man woke up and then fell back to sleep for 4 hrs it was not like him. We figured we would let him sleep.Since we thought that it was his way getting back to norm. He then got up and played all day. He was doing pretty well. He got a low grade fever and we put him to bed and he seemed to be doing pretty well.
Saturday... Eli seemed to be not himself. He was more tired than the day before and kept having a low grade fever thru out the day. Heather and I thought it was ok to go out since he didn't have any fever for awhile before we left. We went out to dinner and we just hung out it was nice. All thanks to our friends for the gift card. We got home and his heart rate had been up for awhile and he had a fever. It looked like the tylenol and ibuprofen wasn't working. Paula his nurse called the on call and he suggested with his heart rate that he go to the ER. Heather and Paula took him to the ER and the doctors seemed to be really good. They said that it was an infection and that it was safe for him to go to his appointment in KC.
Sunday...Heather and Paula came up to kanasa city. He was having some troubles keeping his stats up so they put him on oxygen when they were in the car. Otherwise he seemed pretty good. They checked into Ronald Mcdonald House. Really nice can't say anything bad about them. About 5pm is when all hell broke loose. Eli's oxygen went down into the 70's. he was retching and shaking. Things got worse. They had to call 911. In about 10 minutes they had a room full of people. I got a call and less than 45 minutes I was out the door. It was one of the longest drives I could ever made. My phone was nearly dead. Every so often some song would make me tear up. It's was very emotional. I got to the hospital in the best time ever. I saw heather,eli,paula, and a friend of the family. They were still in the er. He reached out for me. I almost cried. It's crazy how emotions run like a roller coaster.
Friday... Our little man woke up and then fell back to sleep for 4 hrs it was not like him. We figured we would let him sleep.Since we thought that it was his way getting back to norm. He then got up and played all day. He was doing pretty well. He got a low grade fever and we put him to bed and he seemed to be doing pretty well.
Saturday... Eli seemed to be not himself. He was more tired than the day before and kept having a low grade fever thru out the day. Heather and I thought it was ok to go out since he didn't have any fever for awhile before we left. We went out to dinner and we just hung out it was nice. All thanks to our friends for the gift card. We got home and his heart rate had been up for awhile and he had a fever. It looked like the tylenol and ibuprofen wasn't working. Paula his nurse called the on call and he suggested with his heart rate that he go to the ER. Heather and Paula took him to the ER and the doctors seemed to be really good. They said that it was an infection and that it was safe for him to go to his appointment in KC.
Sunday...Heather and Paula came up to kanasa city. He was having some troubles keeping his stats up so they put him on oxygen when they were in the car. Otherwise he seemed pretty good. They checked into Ronald Mcdonald House. Really nice can't say anything bad about them. About 5pm is when all hell broke loose. Eli's oxygen went down into the 70's. he was retching and shaking. Things got worse. They had to call 911. In about 10 minutes they had a room full of people. I got a call and less than 45 minutes I was out the door. It was one of the longest drives I could ever made. My phone was nearly dead. Every so often some song would make me tear up. It's was very emotional. I got to the hospital in the best time ever. I saw heather,eli,paula, and a friend of the family. They were still in the er. He reached out for me. I almost cried. It's crazy how emotions run like a roller coaster.
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