HOME AGAIN - HOME AGAIN

Let's see... where to begin. We brought Noah home from the hospital on Tuesday the 13th. We were excitedly apprehensive. We still had no clues about what caused the clotting, and he was not really feeling any better than when we took him in on the 2nd.

A few days before we left the hospital his headaches started up again and got much worse the first day we got home. Dr. Bhonsack, the doctor everyone said was super smart, was not aware that we had been sent home and called as soon as he found out to see how we were doing. I told him that Noahs headaches were getting worse and he suggested that we should take him to the ER at Primary's if they got any worse. The concern was that if the original clot in his brain had caused the initial headaches, then maybe he was having more clotting in his brain with the presence of more headaches. (I'm typing fast so let me know if I'm losing anyone.) Of course, this was very concerning to me, so the next day when his headaches became worse and his face started swelling more, I took him back to the hospital. They kept us overnight and did a CT angio of his brain as well as an MRI. They found no evidence of new clots so they felt comfortable letting us take Noah back home.

At this point, all of the test results are in and the verdict is...... well, there is no clear verdict. However, they did get a positive test result. One of the initial tests they ran is called a venom viper test. This test is for ANTIPHOSPHOLIPID SYNDROME. This test result came back slightly abnormal(not really abnormal, just a hint of abnormal). Since they didn't find much else to hang their hats on, they ran some further tests to consider the possibility of ANTIPHOSPHOLIPID SYNDROME. Several secondary tests were run. Of these, one test result WAS positive. Sounds great right. Well not really. The one positive test result has a disclaimer. If this lab test, HEXAGONAL PHOSPHOLIPID NEUTRALIZATION, is done on a blood sample of a pt who is within the therapeutic range for heparin (which Noah was on the day the test was drawn), then the possibility of a FALSE POSITIVE is GREAT. (According to the literature the doctor gave me.)

So what does this mean for Noah. It means the Rheumatologists decided to start treating him with immunosuppressant drugs (steroids for now). Although I believe they are treating him for the wrong thing, the drugs really seem to be working well. This is probably because his body was having some kind of ACUTE INFLAMMATORY RESPONSE and corticosteroids are an anti-inflammatory.

I know this probably all sounds like a bunch of rambling. I just need to get it all off my chest, and this is my way to process it. I do have a new theory.... not sure I should say or not, but really, what the heck. My new theory is....no, I'm not going to say. But I am going to ask the doctor about it on Tuesday.

Long story short. WE ARE HAPPY TO BE HOME AND ECSTATIC THAT NOAH IS FEELING A BIT MORE LIKE HIS HAPPY CHEERFUL SELF.

Saturday Night

Hey, I'm at home tonight with Hunter and Jacob. Dan is staying overnight in the hospital with Noah. So I took the opportunity to post some of these cute pictures of Noah with all his visitors. I think the only people I didn't get pictures of are Melanie and Chads family, Sheila, and Janica and Madison Hillesheim. As you can see, Noah really loves to have visitors. Today he started out looking pretty low, and then Hunter, Jacob, Dan and Sheila showed up and he was a totally different kid.

I don't have any new news. Things are pretty much the same. I did hear a rumor from one of the nurses that they might be sending him home on homecare services on Monday. We shall see. In some ways that would be really nice. On the other hand, it could also be really scary. We will see. Love you all. Goodnight.

Even more hospital pictures

More hospital pictures

Hospital pictures

Honest and Upbeat

It's hard to know how to strike a balance between being honest here about how Noah is really doing and being upbeat and positive about the whole experience. But I'm gonna take a crack at it tonight. You can tell me how I do. Tonight is our one week annivesary of being in the hospital. (more specifically in room 3038). Noah and I have both decided that it's not the most fun we've ever had. It's almost midnight and what he wants most right now is just to go outside and get some fresh air. I told him that if the weather is nice tomorrow we WILL go out side to the "angel garden".

I wish I had an idea about noah's progress or prognosis, but I really don't. I think at this point they have a couple more shot in the dark tests and then they just say "well, this is one for the medical books". As of right now they are treating him with lovenox and hoping that the clotting will start to resolve. So far there is no evidence that it has. They also drew blood cultures tonight because he continues to get fevers xnd they need to make sure he isn't septic. (infection).

How am I doing so far?

I'm guessing maybe good on honest, not so good on upbeat. Just wait..... It's coming.

It always amazes me how generous and compassionate people are when we are in need. We are so incredibly humbled by everyones love, support, prayers and fasting, and willingness to help in any way they can. We are so grateful for our family and friends who have helped take care of hunter and Jake. And for those who have come to visit us in the hospital, and for the meals and phone calls and messages of concern and for all of you who are praying for Noah and our family. As hard as it is sometimes to go through trials, it really makes it easier to know we certainly are NOT alone.

Love ya everyone, goodnight.

Update on Noah 2

Noah seems to be slightly improved today. He hasn't thrown up today. He hasn't eaten much but seems to be tolerating what he does eat. He is definately in better spirits than yesterday.

As far as diagnosis, nothing new. The few things they thought they had found out yesterday, they actually took back today and said they were wrong. Today they took him for a short walk down the hall and tested his oxygen levels. They were low as he walked. So tomorrow they will do a CT angio of his chest to see if he has clots in his lungs as well.

Sounds like the plan right now is that he will come home with a feeding tube until he can gain weight and lovenox shots for 6 months at the very least. They will decide if they are comfortable sending him home with basically no answers and follow up outpatient. This also depends on if I'm comfortable bringing him home with all these problems and no answers.

I guess at some point I'll decide it's okay to have no answers, but today is not that day. :(

Update on Noah

No progress on what did cause the clot. Plenty of progress on what did not cause the clot. Unfortunately no one knows what is going on. They don't know why he's having fever, nausea, vomiting, anemia, weight loss, etc. They don't think the clot explains it all, must be underlying problem. He did seem a little bit perkier this morning, until they put a feeding tube in. Now he's just mad. (they told him it would feel "uncomfortable". Apparently it's not just uncomfortable. It's PAINFUL.

Thanks for everyones love and support. We are grateful for all of you!

Ps. I will try to keep updating either here or on facebook.

Thanks Easter Bunny

So Noah, as some of you know, is at Primary Childrens Hospital. He has been sick for the past two months and we couldn't figure out why. Two days ago we had an abdominal CT done and discovered that he has a blood clot that runs from his inferior vena cava down to his kidneys. We are waiting for test results to figure out a cause. As of right now it appears that he has all of the specialists scratching their heads a bit. Anyway, he is stable for now. He's just very tired and nauseated and keeps spiking a fever.

I'm so thankful to all of our family and friends for your love and support. Aside from being sick, Noah has enjoyed all the visitors and gifts and love from everyone! It felt like we have had little Easter bunnies dropping by all the time bring gifts and fun. And especially thanks to the Easter bunnies mom for filling in today!