Insurance fun

So, the next time your insurance company cheerfully tells you that they have approved a service for you, find out if they are applying it to your out-of-network lifetime maximum. It has come to my attention recently that several of Peter's services have been approved this way. Things that should be covered in-network should not be penalized as out-of-network if there was no one available to provide the service in-network. But that is not how the insurance company has billed it, nor is it how it was presented to me. I was just told the services were approved... and so I relaxed and we cruised along getting Peter the services needed. So now our lifetime out-of-network max is halfway met now, and the one justifiable out-of-network provider that we need every last out-of-network dollar for is Children's Hospital Boston.

"Well, you can still use unlimited in-network providers."

"Can you tell me the breakdown of just where all of these out-of-network costs are coming from?"

"Well, if you access the website and pull up your claim..."

"There are over 250 claims! AND there is NO indication of which ones you have paid in-network vs out-of-network. AND everytime I try to ask someone if this place or that provider are in or out of network I get a different answer! ... If my son needs a transplant at the out-of-network provider, is it still covered if we exhaust out-of-network benefits?"

"I can't tell you that it is covered, but I can tell you that since there is no one in network who does this type of transplant that you would be approved to have it done out-of-network."

"So it IS covered?"

"Well, I can't say that it is, but let's just say that since there isn't anyone in-network then you would have to go out-of-network, and transplant is covered. Do you catch what I am trying to say to you? In other words, I can't tell you it is definitely covered, but it is approved. And follow up services would be approved too since it is transplant and no one in network does that type of transplant."

So, is it me, or does this insurance-talk make no sense at all? I still can't figure out if Peter is covered for transplant if we blow through all of the out-of-network monies or not. And that was the case manager's explanation!! I'm not pushing for socialized medicine, just want straight, consistent answers and fair processing of Peter's bills. It is amazing how so many people in big companies can forget about being human beings and just treat you like a number. What if I were your sister or your mother or your daughter and asked you that same question? Well, enough ranting for now. There are more calls to make tomorrow.

Ultrasound results

Dr. Kamin reviewed the ultrasounds from CHOP and the good news is that there is NOT air in the liver as was initially feared. Yea!!

That being said, to be extra careful, we are going to wait at least one more week before restarting feeds, as to not blur a possibility of an unfound lingering infection rearing its head now that he is off antibiotics. Peter has had no feeds since he went into CHOP on March 14. As of yesterday though, we are allowed to give him fruit in a mesh bag again. He has been having water all along.

Peter's CRP is back down to normal. He ended antibiotics 8 days ago and is still afebrile and labs support that he is as good as he was before the emergency hospitalization. We are thinking now that maybe he did have a bowel obstruction... maybe. A piece of the wafer from the fistula appliance was found in the ileostomy appliance on day two of our admission. Possibly it balled up inside and caused a brief blockage inside his gut which is still quite unaccustomed to anything more than liquid at this point. The stricture towards the end of the ileostomy would be a likely place for something to back up. The other thing it may be though is a sort of intestinal angina, where the intestine cramps up as blood flow tries to increase for digestion but can't. The result is similar to heart angina, where a diseased heart tries to increase blood flow for an increased activity level but physically can't. I don't think we'll have an answer to this though until we retry the bowel with formula again.

We are thinking more about transplant these days... preparing for the possiblity that this bowel just doesn't work and/or this liver just can't go enough of the distance to avoid transplant. Peter still has a portal vein clot that will never go away, and only a portion of liver left from the initial surgeries, that is damaged, but spared enough by Omegaven to get our son as strong as he is now and to keep him home for over a year now. The ascites is still ever present, the spleen remains large... mainly thought to be from the portal hypertension due to the portal vein clot, vs from TPN cholestasis. The chances of Peter's bowel working well enough to get off TPN are a very long shot. This is not to say that we are done trying to use this gut yet... if the bowel works, we will praise the miracle that it will be. But if we still are getting nowhere in the next few weeks to months, then we can still say that we tried all that we could, and the new chapters of Peter's life will then contain the words "transplant" instead of "short gut."

In and out of hospitals

So the visit to Boston at the end of Feb. was a well-check. We reimaged the upper and lower bowel and ultrasounded the abdomen. Results are that the gut appears to be truly short at this time, but whether this is due to scarring or disuse is still to evolve. Peter still seems to have his own unique pathway from the stomach to the ileostomy, so it is possible for formula to pass the whole way through from stomach to ileostomy, although we do know that some will exit out the duodenostomy and maybe the jejunal fistula as well. The liver appears homogenous in the ultrasound, which I am told is a good sign. Dr. Kim, Peter's surgeon for transplant or reconstruction, was not very optimistic about Peter's abdominal ultrasound, concerned about the amount of ascites still present and the shortness of the gut we now see, as well as the usual concerns about bleeding times and portal hypertension. However, he and the GI and Omegaven doctors all felt that we should begin to try feeds again, and we will talk about the surgical prospects (or lack of them) after we have seen how the bowel actually is working and digesting food now. So we agreed to start feeding 1 Tbsp and clamping the G tube (which is usually to drainage) for 2 hours afterwards. After 4 days go to doing this twice a day. After 4 days go to doing this three times a day.

He seemed to be doing great until this past Friday, March 14. Out of the blue Peter began to fuss and act quite agitated, very uncharacteristic of him. I changed all of his ostomy bags, G tube dressing, examined all I could for irritation and could not pinpoint what the problem was. About 5 hours later his temp went up to 100 and we called Dr. Kamin for advice. He told us to go to the ER to check for bacteremia and for peritonitis, ASAP. We wanted to go up to Boston, but he felt that something acute could be going on and wanted us triaged up there if need be, but not to drive such a distance not knowing if Peter was in trouble. So we were admitted, cultured, started antibiotics, and had another ultrasound as well as abdominal and chest x-rays. Peter and I stayed in CHOP through Tuesday, and we still don't know what the problem was or is, but he is home again, on IV antibiotics and is to hold on feeds for now. It is possible it is just a cold. It is possible he has an infection of one of the pockets of ascites in the abdomen. It is possible that his gut can't even handle 3 tablespoons of formula a day. It is even possible, although not much more than a "hmmm" was accredited to this: that the little piece of fistula ostomy appliance that I found in his ileotomy bag caused a temporary blockage and a lot of pain and inflammation until it passed though the gut. As always with Peter, nothing is ever very clear as to what the problem exactly is or what the cause was. In CHOP he put on a lot of fluid and his albumin dropped down, both of which he does when he gets ill with virus or bacteria, but now he is back down in weight and edema. The good news of it all is that many people at CHOP saw how well Peter has done on Omegaven and I got the chance to talk about it to several nurses and residents and two of the attendings. Various CHOP personnel say it is "good stuff," and that they are working on getting it. But they have been "working on getting it" for a year, and that just doesn't make sense when so many other hospitals have been able to get it already. Peter isn't the best candidate to make a grand impression for Omegaven because of his portal clot and severe intestinal condition. But his liver numbers are impressive and the people who remember Peter also remember his liver numbers, so maybe that is statement enough for the benefits of Omegaven. Well, more to post later.

Taking a walk in the house Feb 22

I still need to figure out the lighting issue so videos don't come out so dark, but here is Mr. Peter walking in the house. PT wants us to have him hold hands to walk now... he was holding onto the shopping cart for support, but as you see in this video his sister found it useful for transporting his 3 drainage bags. Peter's daddy has the IV bag on his own back and Peter is holding his hands. We can't get over how quickly he is walking now! He can take some steps holding just one hand, but they are much slower steps and fairly wobbly. Judging by how quickly he has progressed in his walking, we think he'll be solo within a month. Not sure how we'll juggle the IVs and drainge bags then!?!

Happy Anniversary!

Tomorrow is February 22. It is Peter's one year anniversary home from Children's Boston... after being hospitalized for nine straight months. Way to go Peter!!

We go up to Boston again shortly. (I mentioned in the last post that we were making plans; they were for this upcoming visit.) We had been hoping that his direct bilirubin would have hit 0.4 by now, but he had a slight bump in the bili mid December and it just is not budging back down again. He was 1.5 again on Monday, with the total at 2.8. The lowest Peter had gotten was 1.2 direct and 1.9 total. On the flip side, his albumin has remained at a better number, with 2.5 this past week and 2.9 two weeks ago. These numbers are up from 1.4 back around late June, and I am thinking we were even down around 1.2 or less in August. AND, his liver function tests have improved overall. The bleeding times (INR, PT, PTT) are still off though.

So, we will see what the good doctors in Boston have to say while we are there. Peter has come so far in this last year, especially considering that for the first half of that year home his health went up and down several times to the point we even had him actvely listed for transplant. We are praying that Peter remains in good form while we are there and really does an impressive job showing off. His homecare nurses have been phenomenal in helping him work on his PT and OT goals, and he has much to demonstrate. Last time we were in Boston he just took a nap... everyone ooohed and aaahed over his lack of jaundice and his nice weight gain. When he was awake, he pretended not to know any of his colors or shapes or animals while others were in the room, regaining full knowledge once it was just him and me again. Come on Peter, we're counting on a real show this time!