I thought I would just put it all out there. I know there are many different versions of this story floating around among our friends and families...but here is how it all went...
In December, while I was pregnant Connor got a "cold". A few weeks later a bright red rash appeared on his face and arms. I took him to the doctor and they told us he had fifths disease (parvovirus, and NO not what dogs get!) Fifths disease is not harmful to older children and adults, UNLESS you are pregnant. It is one of those things that if you have it once you are never going to get it again. I figured I had probably had it at one point so it wouldn't be a big deal. It turend out to be a pretty big deal
I had labs drawn that showed that I actively had the virus and the baby was developing severe anemia. We delivered him at 32 weeks so that he could start producing his own blood cells. All was well considering. He spent 3 weeks in the NICU at St. Johns. That was, at the time, one of the hardest times in our lives. Leaving our baby every day at the hospital is something that is indiscribable. Bryson cruised through the NICU and did very well. No complications from parvo while we were there. We thought we were in the clear. We were wrong....
When Bryson was 5 weeks old I noticed that he did funny things with his eyes and lips and tounge. They were pretty brief episodes and I decided to watch them for a while. After a day of staying calm about it I decided this was not right. I called the doctor and she had us go to the ER. The next week was a total blur for us. Bryson was poked and proded everywhere. It turns out that the parvo virus had casued him to become very anemic. He had a blood transfusion and recieved IVIG for five days to help build up antibodies to fight the virus off. He was having little seizures as well. We left the PICU after a 1 week stay with our baby healthy.
Bryson curently is still having problems keeping his blood work levels normal. When we left the hospital his hemoglobin (red blood cell number) was a 11. His last check the count was down to 8.5. We are watching that level and if it dips below 8, he will get another transfusion. He is taking iron every day to help keep it up, but all that seems to do is constipate the hell out of him. The other concerning level now is called his ANC which is his neutrophil count number. Neutrophils are part of the white blood cell group and they are the guys that help fight off infections. A healthy ANC is greater than 1,000. Bryson's highest his whloe life has only been 480. We are now seeing a hematologist/oncologist and at his last visit it was 550, so that was good that it has gone up. For now we are pretty much under house arrest with Bryson because if he were to get even a little cold that could be pretty damaging to him because he doesn't have the cells to fight it off! The plan with that is give him a few more weeks, unitl he is 12 weeks old and hope that it continues to go up. As long as we see it go up on its own that is good. If it goes back down we will look at his bone marrow by doing a biopsy to make sure there is nothing else going on there. Hopefully we don't come to that. That is pretty invasive for him. The thought right now is that all of his counts are down due to the parvovirus but once he hits twelve weeks he should be strong enough to get those counts up on his own hopefully!
That is where we are at today. We have an amazing doctor who has been so helpful through all of this. He is also being followed by a neurologist, hematologist and GI doctor (he has severe reflux). There is not much out there on Parvovirus and we are told that what he has gone through is very rare. The only information that we are really able to find is the info we already know, or info on the dog version...which is totally different. This doesn' t make us feel any better, its actually worse because we just want answers for him!
We want to thank our friends and family who have been there with us through all of this. We really found out who our real friends are, that's for sure! We couldn't have done all we have without your support. Hopefully this is the end of all of this madness for our family and we can start enjoying ourselves again!
In December, while I was pregnant Connor got a "cold". A few weeks later a bright red rash appeared on his face and arms. I took him to the doctor and they told us he had fifths disease (parvovirus, and NO not what dogs get!) Fifths disease is not harmful to older children and adults, UNLESS you are pregnant. It is one of those things that if you have it once you are never going to get it again. I figured I had probably had it at one point so it wouldn't be a big deal. It turend out to be a pretty big deal
I had labs drawn that showed that I actively had the virus and the baby was developing severe anemia. We delivered him at 32 weeks so that he could start producing his own blood cells. All was well considering. He spent 3 weeks in the NICU at St. Johns. That was, at the time, one of the hardest times in our lives. Leaving our baby every day at the hospital is something that is indiscribable. Bryson cruised through the NICU and did very well. No complications from parvo while we were there. We thought we were in the clear. We were wrong....
When Bryson was 5 weeks old I noticed that he did funny things with his eyes and lips and tounge. They were pretty brief episodes and I decided to watch them for a while. After a day of staying calm about it I decided this was not right. I called the doctor and she had us go to the ER. The next week was a total blur for us. Bryson was poked and proded everywhere. It turns out that the parvo virus had casued him to become very anemic. He had a blood transfusion and recieved IVIG for five days to help build up antibodies to fight the virus off. He was having little seizures as well. We left the PICU after a 1 week stay with our baby healthy.
Bryson curently is still having problems keeping his blood work levels normal. When we left the hospital his hemoglobin (red blood cell number) was a 11. His last check the count was down to 8.5. We are watching that level and if it dips below 8, he will get another transfusion. He is taking iron every day to help keep it up, but all that seems to do is constipate the hell out of him. The other concerning level now is called his ANC which is his neutrophil count number. Neutrophils are part of the white blood cell group and they are the guys that help fight off infections. A healthy ANC is greater than 1,000. Bryson's highest his whloe life has only been 480. We are now seeing a hematologist/oncologist and at his last visit it was 550, so that was good that it has gone up. For now we are pretty much under house arrest with Bryson because if he were to get even a little cold that could be pretty damaging to him because he doesn't have the cells to fight it off! The plan with that is give him a few more weeks, unitl he is 12 weeks old and hope that it continues to go up. As long as we see it go up on its own that is good. If it goes back down we will look at his bone marrow by doing a biopsy to make sure there is nothing else going on there. Hopefully we don't come to that. That is pretty invasive for him. The thought right now is that all of his counts are down due to the parvovirus but once he hits twelve weeks he should be strong enough to get those counts up on his own hopefully!
That is where we are at today. We have an amazing doctor who has been so helpful through all of this. He is also being followed by a neurologist, hematologist and GI doctor (he has severe reflux). There is not much out there on Parvovirus and we are told that what he has gone through is very rare. The only information that we are really able to find is the info we already know, or info on the dog version...which is totally different. This doesn' t make us feel any better, its actually worse because we just want answers for him!
We want to thank our friends and family who have been there with us through all of this. We really found out who our real friends are, that's for sure! We couldn't have done all we have without your support. Hopefully this is the end of all of this madness for our family and we can start enjoying ourselves again!
5 comments:
We love you guys and are saying prayers for you every day. I am so sorry you are having to go through this. Please let me know if there is anything we can do. We love you. Tom, Ami, Grace & Max.
Yay, I'm so happy you guys created a blog, I love them - it's such a great way to keep up with how things are going and an even better way for you guys to keep your friends/family informed. Glad to hear that things are FINALLY starting to even out for your family. Can't wait to see it grow :)
Shelley Weber
PS Seanna, I have come to the conclusion that we have the exact same taste in music - some of the songs you added to the blog are my favorites!
Seanna, Your family is in my payers everyday. I'm so sorry you have to go through this. If you need anything let me know.
Love you,
Carolyn and Eddie
Hey Eisels,
So good to hear things are getting better for your family. I think of you all often and pray that things continue to get better! Miss you guys!
I think your blog is great. You are an amazing Mama and have a wonderful family! We love you- Emili, Gene & Lars.
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