Neurology

Ok, so today we had a follow up with the neurologist. Really nothing to exciting. He said that Bryson isn't tracking as well as he should be with his eyes (Brian and I aren't so sure about that) but that could be due to prematurity so we will give him some time with that. He just wants to see him back in 6 months (YEAH! Finally a doctor that doesn't want us back in 1 week!) Other than that we are just about done with the neurology stuff!

Bryson is doing well. His reflux is really acting up, but other than that he is doing good. He has awesome weight gain and head growth. He is not getting his vacinations right now since his counts are so low. I am kind of starting to go crazy being at home all week but I guess I will count my blessings, at least we are AT HOME! We do take him out some places with us, especially if its nice outside. But for the most part we are trying to avoid public places.

On a Connor note...his birthday is this weekend! He is going to be six years old!!! I can't believe it. I am so proud of how good he is with his little brother, he just loves him so much. He will just sit and stare at him. Its so sweet. He knows to wash his hands really good before he touches him and to only kiss him on the top of the head. Connor is such a great kid. We are so lucky to have him in our lives!

Socks from Bryson

Ok, so this may sound crazy but I think its a pretty good idea. And maybe its something that you just can't understand unless you have been where we were....

The PICU at St. Johns doesn't have any socks for the patients. I know you may be thinking so what but when your baby or child is hooked up to all different monitors the only thing that they can have on their body besides a diaper is socks. And sadly they aren't supplied. I just feel like its a bit of a comfort and slice of normalcy when you are going through some drama. I just wanted to do something from Bryson. I noticed that there is a basket in the PICU to collect socks for the kids. I thought it would be nice to get together all different sizes, especially the really small ones, and give them to the basket. I noticed that there were mostly larger sizes in the basket and the ones they gave to Bryson were way to big for his little feet. If anyone wants to participate you can either mail them to me or give them to me when you see me or if you work with me you can leave them in my mailbox. I will give them to the nurses back there from Bryson!

Thanks so much!

Final

So we got the chromosone study from Bryson's bone marrow back...its a boy! Just kidding...

Dr. Hanson said his chromosones all looked normal, there was a few abnormal things, but he said that is pretty typical of the autoimmune neutropenia. I have been doing lots of research on this and hopefully it goes away on its own. We just have to really watch Bryson and make sure that he doesn't get a fever. We will be doing counts again next week sometime. We are relieved that this isn't anything "life threatning" like we were all afraid of. The only scary thing I guess, is that this is autoimmune, so his body is attacking its own neutrophils (the bodies first line of defens against an infection) and there is no telling when it will go away or if it will ever go away. Time will tell I guess!

We went to the GI doctor and she told us to cut his medicine does in half. We did that and Bryson became so so fussy and miserable again with his reflux. We put him back on his old doses. I don't see why we should mess with a good thing right now and have him be miserable again! We will be following up with the neruologist this week also. That is all for now! I guess it seems like alot, but we just look at one thing at a time and its alot less overwhelming!

Autoimmune Neutropenia (???)

Ok, so I know I haven't updated anything. Sorry. Its just not been to exciting around here, which is good for once! We did Bryson's labs today and his hemoglobing went up to 9.4! Yeah!!! Dr. Hanson said we SHOULD be out of the woods as far as needing another transfusion goes. But, his ANC (the white count number) went down. Dr. Hanson called me (at 830 at night, which scared the hell out of Brian and I!) and he told us he is so happy to see his hemoglobin go up. He said that he thinks that what is going on with Bryson's ANC is that he has "autoimmune neutropenia" this is something that is a response to a virus or infection (shocker!) Here is a link that was pretty helpful...http://autoimmunedisease.suite101.com/article.cfm/autoimmune_neutropenia

For now we aren't going to do any of the threapies, we hope that he can come up on his own, plus we are waiting for the chromosone part of the biopsy still. The key with him is keep him from getting sick. Since its starting to get nicer out we can probably take him out when we need to, but its just not really worth the risk right now of him getting sick. Since he is so little a simple cold could put him back in the hospital!

So the next question is how long is this going to go on for? We got kind of a vague answer, I think no one really knows, which is very frustrating for us! Dr. Hanson said a few months to a few years! We can stop sticking Bryson as much now too, he said we just need to grab a count about once a month. However, knowing Brian and myself, we will be doing it more frequently. Our pediatrician is all about putting our mind to ease, and we will rest better knowing we are ok! I think that is something we are going to have to get used to, not know what his counts are every week...so we probably need to be eased into that once-a-month thing! God love our pediatricin, she has been awesome to us!

So that's the latest here, check out the link...it was very helpful and makes a lot of sense for our little man! At least we are out of the woods with the really scary stuff! No one likes to see their baby sick, but we can get through this! All our prayers have worked, and I KNOW that my Poppy was with this little baby the whole time making sure he was being taken care of! For now we are going to enjoy our family life and I am going to try not to waste my worries on things that can't be fixed and enjoy the moments we have right now! Love you all!

Biopsy

So the biopsy came back and it showed no abnormal cells, which means no malignancy! YEAH! They said that everything was just wiped out from parvo and we are going to give him some time to build it back up on his own. They said that it actually showed that he was producing ample amounts of cells, they were just mostly new cells and hadn't reached maturity quite yet. We need to see that he can get them out of his marrow and into the his system where they belong! There are some therapies that he may need to do to help him do this, but we are going to give his little body a chance first.

There are a few more tests that they ran on his marrow that take a few weeks to get back, that is one reason why we aren't starting any medicine now to help him. If any of these come back positive then the medicine would cause more harm than good. The doctors said that what they tested him for are really random things that could maybe be causing this to be as bad as it is for him, but more than likely they are going to be negative. So that is good!

We have this huge amount of relief now. He still has to stay pretty isolated because his counts are still really low, so hopefully in the next few weeks he can bring that up on his own and we can start to get some normalcy back to our family life.

Again, we want to thank all of our family members and friends who have been there for us through all of this! We know all the prayers have really helped as well. Thank you guys so much, it means so much to us! And again, we were able to see who truley cares and who we can depend on! Its kind of sad that you have to find out who your true friends are and who you can really depend on by going through something like this. This has been such an emotional rollar coaster for us, and they are telling us that we are headed out of it all now! Let's hope they are finally right! I don't know what else God could possibly throw our way, but after all of this we can handle it.

Answers

Finally some good news! Bryson's cells look healthy and normal. He just doesn't have enough of them, the theory now is that they are suppresed from the parvovirus. Dr. Hanson wants me to call tomorrow to verify with the biopsy (this takes longer than the asperate to get back, and his asperate sample wasn't the best he said) that this is all correct. The biopsy is what will tell us 100% that this is right. Dr. Hanson just went off the asperate...this is all really good news compared to what it could have been. He said that we will probably have to set up a treatment plan involving injections to help boost his system. We will discuss that tomorrow. Anyway, its about time we got some good news!

waiting again...

We just got back from the hospital. Bryson did so well with his bone marrow test. They sedated him and then we stepped out while they did the test. The hardest part for me this time was the IV. I have seen it done so many times, and even done it so many times, but for some reason I lost it today while it was being started on him. I guess he is just a really hard stick, and the fact that he hadn't eaten in forever didn't help his moodiness. He was just so miserable during that, I felt so bad for him. He woke up about an hour after the test and ate really well, so they let us go home. Dr. Hanson said that we will probably know something this afternoon. I am sure that it will be fine. Dr. Hanson was very positive about everything so that really helps. While it was good to see the friendly faces that we grew to be so fond of in the PICU, we hope to never have to go back there, unless its for a friendly visit! The staff back there was so great to us both times! Keep thinking positive thoughts and I will post once we know anything.

Thursday

Thursday morning is when we will be doing Bryson's bone marrow. They told me nothing to eat or drink after midnight, and I said "No way." There is no way this baby can be NPO for ten hours. Its just IV sedation, I would think maybe 4-6 hours, but he's so little, there is no way he can go that long and he wouldn't understand why I wasn't feeding him...this should be interesting. The nurse at the office said we will have all the results on Friday sometime.

Here we go

Dr. Hanson, the hematologist, just called me with Bryson's labs. They did go down, which is not what we wanted to see. The next step is to look at his bone marrow, which someone from his office is going to call me to set that up for sometime this week. We will be back in the PICU for one day for the procedure. Dr. Hanson seems to be pretty optimistic that this isn't going to be any sort of cancer, but probably still parvo-related. He just needs to look at the marrow and see if for sure it is, and then he can better understand what is going on and what we need to do to get over all of this. We shoudl have the results of all of that the next day. That's the news for now, I will let you all know when we will be doing the bone marrow. Keep thinking positive and say lots of prayers!

Waiting

I just got back from the lab to have Bryson's tests drawn. Now we just wait and see! Hopefully they have all gone up, I can't imagine that they wouldn't have, he is acting so much better and looks so much better! They should call me sometime today, but I guess no news is good news! So keep positive thoughts coming our way, I will post when I know what they are.

OOPS...

A few people have asked when Bryson's labs are being done again. Sorry I forgot to include that! They are being done on Monday, hope for the best. We really want to see his numbers go up some more.

And yes, I am aware that I am making a post at 2am. Its feeding time!

A glimpse of where we've been....

Bryson's Story

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!