1/3 is my new favorite number!

Thank heaven this week finally came!! We were waiting for this week to see Philip's doctors to get a sense of what was happening on the inside. 

Well, Tuesday we saw his GI doc and she was very happy with how he looked. She said it seems that his Kasai is draining!! She switched some of his medicines around so he takes 6 doses of meds a day.

The most exciting switch was that of this steroids. She was able to put him on a more concentrated solution so now he only has to take 3.3ml instead of 10ml. Only 1/3 of what he was taking!! So much easier now. No sweating for me and not much gagging or crying from Philip. LOL

She also ran some blood work so we can see how his bilirubin is. She told us to call today for the results.

On Thursday we saw Dr. Prince(surgeon). The first thing he said when he walked in was "Is he less yellow or is it me being really hopeful?" It was good to hear him say that because people keep saying it but we didn't want to get too excited if it was just our eyes playing tricks. He was very pleased with how Philip looked and how he is recovering. He asked if we had heard the results of the blood work yet and we said no. He was so excited to be the one to tell us the results. A 5/3.

Meaning his Total Bilirubin is a 5 and his Direct Bilirubin is a 3. When Philip went into the hospital before surgery, his numbers were 13/7. They have dropped by almost a half!!!! Nowhere near normal but he was pleased with the numbers of this as well as his other liver functions, which are still elevated but that is to be expected with Biliary Atresia and one just having liver surgery.

Just for reference, Normal levels are usually:

Total bilirubin: 0.3 to 1.9 mg/dL
Direct (also called conjugated) bilirubin: 0 to 0.3 mg/dL

In the beginning Dr. Prince told us about how 1/3 of Kasai's work, 1/3 work for an unspecified amount of time, and 1/3 never work. Well he said we can pretty much rule out the third where it never works!! So 1/3 down!! Unfortunately we still have to wait to see what the future will hold. We just have to keep praying for colored stool and lessening of jaundice.  I guess we should get used to the idea that we will never have a definite answer on whether the Kasai will work forever or he will eventually need a liver transplant. That is something I will always struggle with I think. In the meantime we will take it day by day and try to live each day to the fullest and try to go on with our lives as usual.

Here is a picture of Philip 3 weeks after his Kasai surgery. I think he healed up great.

He finally hit 12lbs too! He is only in the 19% for weight but at 25" is in the 95% for height. LOL
I'm hoping he will pack on the pounds over the next few weeks and catch up a bit.
So that is where we stand right now and only time will tell.
We want to thank everyone again for showing us so much love and support over the past few weeks. From texts and phone calls, to flowers, to fruit baskets, to gift cards, to dinners, to babysitting, to coming to appointments with us, prayers and so much more... we appreciate every single one of them. We would not be able to get through this without everyone's support. 

Waiting is the hardest part...

So it's been a while since I updated but to tell you the truth not much has been going on.  We saw the new pediatrician last Monday and she said he looks good. She even commented on his color and that he didn't look as ashy as he did before the surgery. We have also been impatiently waiting for Philip's doctor's appointments this coming week. We will see the GI on Tuesday and the surgeon on Thursday. Im assuming they will do some blood work to see where we are at.
Philip has been doing great this past week. He smiles, laughs and is talking up a storm. Sometimes when I'm giving him his medicine he will talk to me like he is complaining. It is too funny. He has been taking the meds pretty good. The prednisone still remains a challenge for me somedays. It is the most stressful part of the day for me. Especially when Dan is working and it is up to me to get it done alone. It takes me about 45 minutes while he's crying and gagging and coughing and Danny is playing in the dog food or standing on the open dishwasher door or demanding a cookie or yelling at me to get him Tea! LOL Needless to say I am breaking quite a sweat by the end of it. I feel so bad for Danny. He must sense something is going on. It must be hard to adjust having a new brother and having to share me with him but I cant imagine how he feels with me having to give Philip extra attention. But I just have to keep in mind it is temporary. Slowly he is coming around and will play this little piggy with Philip or give him kisses on the head in between covering his ears when Philip is crying. LOL
Several other people have also commented on Philip's color and how he looks better and he is not as yellow. I do see it somewhat, but his eyes still look yellow to me. It is hard to not get too excited about everyone noticing but I don't want to create a sense of false hope just yet. Don't get me wrong, We do remain very hopeful and are keeping the faith but I won't be jumping for joy just yet. I want to see some hard proof in the numbers. Hopefully this week will bring that.