Heres what we know...
by Erin Castellano on Saturday, August 14, 2010 at 11:14pm
WARNING....Long read...Sorry....
So, its been a while since I've done a "Jake Update". I need to do this because, for one it gets all of this garbled up info in my head onto paper, and secondly we have such an amazing support group, YOU, who are awaiting an update. Jake is well. He was smiling and happy today. Compared to the day we had yesterday, hes great. We came in here on Wednesday for a fever. He had been fussy though out the night and very irritable, but no fever. In the morning he was running a fever so I took him into the pediatrician. (This would be his third fever. His first fever, he was 27 days old and admitted into Loma Linda for 5 days where they pumped him with meds and sent us home. His second fever, 3 weeks ago, we took him to the doctor and treated him with Tylenol and it went away in a few days.) With this fever, I took him into his pediatrician, whom by the way is the most amazing woman ever, and she did not like the way he looked or acted. She asked me if I had gas in the car, told me not to stop and to go straight to Children's Hospital in San Diego. She said he was acting like he was in pain, which happens everytime he has a fever. I thought he was screaming during the night with his fevers because he had a fever, body aches, etc. But with this particular fever, he screamed through the night and didn't have a fever until morning. So we ended up at Children's. We are here rather then Loma Linda because our doctor felt she could contact more doctors and had more pull here.
Once we were in the ER, they took his temp, ran some blood tests, etc. They were ready to send us home because he was acting okay. I called our pediatrician and she said, "They just don't get it do they?" Once she called them and told them we needed to be admitted, they realized that we were here to get help, for the long run. They were hesitant about admitting us because ALL of his previous tests, exams, BIRTH, everything, had been done at Loma Linda. Transferring care can be difficult. The ER doctors came to us and gave us three options. We could go home and head to Loma Linda in the morning to see our doctor we had been working with there. They could transport us to Loma Linda that day and have us admitted there, or we could be admitted at Children's, Not sure if we were making the right decision, Steven and I decided to stay at Children's and see what they could offer us in ways of what is wrong, what he has, and what treatment options they could provide.
So after being admitted, Jake was now on his 3rd IV because his other 2 blew in the ER. They took blood for tests and Jake was still running a low fever. They began treating him with antibiotics for an infection. We met with a hematologist and we were told that Jake could possibly be in pain, due to small blood clots. Some of his blood levels were high so they were going to continue to check it. They scheduled him for an ultrasound to see if they could figure out where everything was inside of him and how it was effecting his organs. ((Jake has clusters of veins that did not form correctly all over his right lower abdomen, his right butt cheek and down throughout his right leg. Everything has looked very swollen since birth, but it never seems to have effected him.)) After an unsuccessful ultrasound, he seriously screamed bloody murder the whole time, they sent us back to the room. The doctors contacted us and said they needed to sedate him for the ultrasound, but what they really want is a MRI. So since they were going to sedate him, why not do the MRI instead. We were nervous but glad they thought of it now. He was actually scheduled for an MRI next week at Loma Linda to compare his first MRI to one now.
Heres where things get weird...
The night before the MRI, Thursday night, I was changing Jake's diaper and I noticed a red blotch on the back of his leg. He had these blotches on his upper thigh when we came into the ER, but never behind his leg. When I touched it, there was a large mass underneath. The mass was the size of a grape. There was another one about a half inch above that one as well the size of a pea. I called in the nurse and she called in the on-call doctor and they poked at him for a while. They tried to bump up the MRI, which didn't happen, but they were thinking it could be a blood clot but wouldn't know until we have the MRI results.
That's kind of where we are now. I spoke with the on call doctor tonite and he said that there are several medical teams working on reading his MRIs and so getting information quickly is not really possible. He said the biggest thing is they want to compare his MRI now with the one he had at Loma Linda at birth. They are having their top radiologist do this and hopefully he will have a report on Monday. With the mass, he said there is great blood flow throughout his leg, and his blood levels are good, so it may not be a blood clot, but that's not completely ruled out until the final paperwork is written up. Jake is now on his medications orally, in hopes that we can go home soon and give him his meds and come back for tests to be ran. I asked what it could be if it wasn't a blood clot. He said that these malformations grow and change after birth before they get smaller, so it could just be growing, or it could be something completely different. He didn't know. I feel like we are in great hands here. Loma Linda was good to us, but I feel like Children's has the resources we need and are truly geared towards us. They actually have a vascular malformation clinic coming up in September. We are scheduled to be there. We will bring in Jake and show him to a team of doctors and they will discuss his case and how to treat him. Of course my biggest concern is that he is not in any pain. They have all been wonderful. Looks like we are transferring all of our care here. A huge thank you tho to Loma Linda. They are just as fantastic.
Jake is resting now. First time Ive had a chance to sit down and get all this out. Poor guy just looks exhausted. Its been a long 5 days. Poor Jakers is going on IV number 8, no kidding, has had blood drawn around 6 times and is over being poked and moved. Just loves to be held and rocked. Steven and Bryce are out here until Monday morning when Steven will have to go back to work. Blah! So visitors are welcome! LOL. The Ronald McDonald house here is amazing. Its a 5 minute walk across the street and a great place to shower, eat and rest. The place is brand new and beautiful. We have been so blessed.
Thanks to everyone who have had our little man in your thoughts and prayers. We are so lucky to have such an amazing support system. Thanks Moms and Dads for taking care of the house and dogs too since we cant be there.
Will keep you posted on results.
So, its been a while since I've done a "Jake Update". I need to do this because, for one it gets all of this garbled up info in my head onto paper, and secondly we have such an amazing support group, YOU, who are awaiting an update. Jake is well. He was smiling and happy today. Compared to the day we had yesterday, hes great. We came in here on Wednesday for a fever. He had been fussy though out the night and very irritable, but no fever. In the morning he was running a fever so I took him into the pediatrician. (This would be his third fever. His first fever, he was 27 days old and admitted into Loma Linda for 5 days where they pumped him with meds and sent us home. His second fever, 3 weeks ago, we took him to the doctor and treated him with Tylenol and it went away in a few days.) With this fever, I took him into his pediatrician, whom by the way is the most amazing woman ever, and she did not like the way he looked or acted. She asked me if I had gas in the car, told me not to stop and to go straight to Children's Hospital in San Diego. She said he was acting like he was in pain, which happens everytime he has a fever. I thought he was screaming during the night with his fevers because he had a fever, body aches, etc. But with this particular fever, he screamed through the night and didn't have a fever until morning. So we ended up at Children's. We are here rather then Loma Linda because our doctor felt she could contact more doctors and had more pull here.
Once we were in the ER, they took his temp, ran some blood tests, etc. They were ready to send us home because he was acting okay. I called our pediatrician and she said, "They just don't get it do they?" Once she called them and told them we needed to be admitted, they realized that we were here to get help, for the long run. They were hesitant about admitting us because ALL of his previous tests, exams, BIRTH, everything, had been done at Loma Linda. Transferring care can be difficult. The ER doctors came to us and gave us three options. We could go home and head to Loma Linda in the morning to see our doctor we had been working with there. They could transport us to Loma Linda that day and have us admitted there, or we could be admitted at Children's, Not sure if we were making the right decision, Steven and I decided to stay at Children's and see what they could offer us in ways of what is wrong, what he has, and what treatment options they could provide.
So after being admitted, Jake was now on his 3rd IV because his other 2 blew in the ER. They took blood for tests and Jake was still running a low fever. They began treating him with antibiotics for an infection. We met with a hematologist and we were told that Jake could possibly be in pain, due to small blood clots. Some of his blood levels were high so they were going to continue to check it. They scheduled him for an ultrasound to see if they could figure out where everything was inside of him and how it was effecting his organs. ((Jake has clusters of veins that did not form correctly all over his right lower abdomen, his right butt cheek and down throughout his right leg. Everything has looked very swollen since birth, but it never seems to have effected him.)) After an unsuccessful ultrasound, he seriously screamed bloody murder the whole time, they sent us back to the room. The doctors contacted us and said they needed to sedate him for the ultrasound, but what they really want is a MRI. So since they were going to sedate him, why not do the MRI instead. We were nervous but glad they thought of it now. He was actually scheduled for an MRI next week at Loma Linda to compare his first MRI to one now.
Heres where things get weird...
The night before the MRI, Thursday night, I was changing Jake's diaper and I noticed a red blotch on the back of his leg. He had these blotches on his upper thigh when we came into the ER, but never behind his leg. When I touched it, there was a large mass underneath. The mass was the size of a grape. There was another one about a half inch above that one as well the size of a pea. I called in the nurse and she called in the on-call doctor and they poked at him for a while. They tried to bump up the MRI, which didn't happen, but they were thinking it could be a blood clot but wouldn't know until we have the MRI results.
That's kind of where we are now. I spoke with the on call doctor tonite and he said that there are several medical teams working on reading his MRIs and so getting information quickly is not really possible. He said the biggest thing is they want to compare his MRI now with the one he had at Loma Linda at birth. They are having their top radiologist do this and hopefully he will have a report on Monday. With the mass, he said there is great blood flow throughout his leg, and his blood levels are good, so it may not be a blood clot, but that's not completely ruled out until the final paperwork is written up. Jake is now on his medications orally, in hopes that we can go home soon and give him his meds and come back for tests to be ran. I asked what it could be if it wasn't a blood clot. He said that these malformations grow and change after birth before they get smaller, so it could just be growing, or it could be something completely different. He didn't know. I feel like we are in great hands here. Loma Linda was good to us, but I feel like Children's has the resources we need and are truly geared towards us. They actually have a vascular malformation clinic coming up in September. We are scheduled to be there. We will bring in Jake and show him to a team of doctors and they will discuss his case and how to treat him. Of course my biggest concern is that he is not in any pain. They have all been wonderful. Looks like we are transferring all of our care here. A huge thank you tho to Loma Linda. They are just as fantastic.
Jake is resting now. First time Ive had a chance to sit down and get all this out. Poor guy just looks exhausted. Its been a long 5 days. Poor Jakers is going on IV number 8, no kidding, has had blood drawn around 6 times and is over being poked and moved. Just loves to be held and rocked. Steven and Bryce are out here until Monday morning when Steven will have to go back to work. Blah! So visitors are welcome! LOL. The Ronald McDonald house here is amazing. Its a 5 minute walk across the street and a great place to shower, eat and rest. The place is brand new and beautiful. We have been so blessed.
Thanks to everyone who have had our little man in your thoughts and prayers. We are so lucky to have such an amazing support system. Thanks Moms and Dads for taking care of the house and dogs too since we cant be there.
Will keep you posted on results.
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