Unbelievable!

I was trying to think of the perfect title for this post but I think the best word to describe the news we got yesterday is Unbelievable!
We saw Dr. Prince (Surgeon) on Friday and he was so happy with how Philip looked. He ran some blood tests to see where we were at with Philip's numbers.
We had an appointment with the GI on Tuesday so they gave us the results.
Drumroll please………………………………………………...
His Bilirubin numbers are 1 / .7 !!!!!!!!!!!  Basically within a normal range! Just a few 1/10ths off.  His other numbers are still a little elevated but are dropping so they are happy with that. He also gained weight which has been a struggle for him in the past. He is up to 13lbs 6 oz.!  He is also being weaned off his steroids which is awesome. Can't wait to have one less medication to give him.
I could barely contain myself after that appointment. I had to run some errands after and I wanted to tell everyone I saw about the news. I would just think of it and start to choke back tears of happiness.
It's really been amazing the last few weeks watching his skin color slowly turn more pink. And especially his eyes become white because that is always the part of him I would gauge his yellowness by.  Dr. Prince said we just have to wait and see how long his body will sustain this. And the GI's said our focus now will be for him to continue to gain weight and grow.
When this all began it was hard to believe that things could go this smoothly. I am afraid sometimes of the rug being pulled out from under us or jinxing it by talking about how good things are going.
All I know is he is one strong baby and the room lights up when he smiles.
Thank you to everyones continued support and thoughts and prayers. Who knows, but I think all of those positive thoughts and prayers have somehow worked and helped him get through this. I know they have helped us.

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.

Home Sweet Home!

I will preface this post by saying Thank you to everyone who has been reading my rambling goings on with Philip. Writing this blog I think is kinda like my therapy to deal with this situation better. When I found out about Philip's possible diagnosis I googled so much my eyes were crossing. I always gravitated to reading about peoples personal experiences rather than clinical and medical websites (Although I've read  my fair share of those too) So I guess I also figured that if my rambling can help other parents just finding out about this disease and  understand the process they will go through better, then it is worth putting out there.

Yesterday Dr. Prince came to see us in the morning. He said Philip would get his JP drain out that day and we could then go home!! We were so excited! We packed up our stuff and Dan started bringing things down to the car. Around 11:30am they came and removed the drain and the nurse was getting our discharge papers ready. She came in and asked if she could help get Philip dressed to go home so I said sure. Well she sat Philip up in bed and with that he sneezed and barfed ALL over. He sure scared the you know what out of that nurse. Dan ran out to catch the residents who helped remove the drain and with that we were told we had to stay for two more feedings to make sure he didn't do it again. So they hooked him back up to the IV to give him his meds he was due for. (Thank goodness the nurse didn't remove it, she just disconnected it.) We then waited and fed, and waited and fed. Philip did fine with these two feeds. This brought us to around 5:30 or so. So the nurse disconnects the IV and the residents come in again to start to explain our discharge plan. They leave and come back in a few minutes later and talk about giving Philip his first dose of his Prednisone through IV that night as opposed to me giving it to him orally. I would have to give him 20ml orally. It would delay us another 1 1/2 - 2 hours but We agreed that was probably the smartest thing to do. So back on the IV he went and judging how he acted taking his 13.5ml tonight I am glad we did it through IV last night. So we were finally discharged around 9:00pm with 4 prescriptions to fill and Philips med plan for the next few months.

Ahhh Freedom!!

Not knowing any better we stopped at CVS to fill the prescriptions on the way home.
Bad news. They can't fill 2 of the 4 prescriptions and Philip has to start taking some at 10am the next morning. Panic started to set in. So I went home with Prednisone and his Antibiotics in hand but not his Actigall(Which helps bile flow better) or his vitamins(AquADEK-fat soluble vitamins A,D,E&K)which are over the counter by the way but I guess not many places have it.
Thanks to the lovely pharmacist at CVS he told me I had to find a Compound Pharmacy who would make the prescription for us. He actually called the hospital and they told him where to send us.
So this morning was spent calling other local compound pharmacies and finding out most couldn't make the compound to be ready for today and that insurance did not cover one of the ingredients so they would not cover it. So we ended up with the pharmacy recommended by the hospital. So I faxed the prescriptions and had to run to queens that afternoon to pick it up.
Philip took his antibiotics like a champ in the morning as well as the actigall. Both doses are manageable. 7:00pm tonight he had to take 13.5ml of the prednisone. What a nightmare! It is inhumane to make a baby take that much orally. It smells like anbesol and I can only imagine what it tastes like.
They said not to mix it with formula or he will start to refuse it. The doctor suggested giving little drops here and there over the course of an hour. Well it took us two hours and that was filled with screaming, gagging, spit up, choking, sleeping,then some more screaming, gagging, spit up, choking, sleeping. My stomach is in knots knowing I have to do this with 10ml every day for the next 90 days. It is torture for all of us. Me and Dan had to take turns and Dan ended up having to do most of it because it made me so stressed. I dealt well with him in the hospital for 6 days getting surgery, then poked and prodded but this is more stressful and mentally draining than that. I am praying for the strength to deal with giving him the medicine I know he needs.
Anyone know a secret to giving a baby that much prednisone??!!

Green is my new favorite color!

So as the doctors hoped, the last couple of days were pretty uneventful. We were able to start him on pedialyte yesterday. 1oz every 3 hours. Now this is for a baby who was eating 6 oz every 4 hours before his surgery. Needless to say that Philip did not like being teased with such a little amount of  liquid. He was pretty unhappy all day and hard to comfort. It was a really hard day and night for me. I mean, it isn't natural to not feed your baby when they are hungry. But, They let us increase to 2 oz later in the day and today he was able to start his regular formula. He was so happy and talkative today. It made my day. The doctors may remove his JP drain this evening or tomorrow morning.
They even said we may go home tomorrow!!!! Now your probably wondering why my new favorite color is green...Philip had two dirty diapers yesterday and they were GREEN!! For those who don't know, one symptom of Biliary Atresia is acholic stool(Stools that are pale, clay, or putty-colored may be due to problems in the biliary system (the drainage system of the gallbladder, liver, and pancreas)
We switched Philips formula so many times I never thought the change in stool color signaled something else. His surgeon said this is a good sign that bile was flowing but we can't be sure if it is due to the surgery itself or the real deal as he called it. Ill just keep praying for green poop!
I really can't say enough about our surgeon. He has such a special way of keeping us grounded about  this working but at the same time keeping us hopeful and optimistic. So hard to put into words. A lot of people (visitors, nurses, etc) have been telling us how Philip's color looks so much better, it is hard not to get excited. But we brought it up to Dr. Prince and he said a lot of times people want us to feel better so they say it. He said they may actually truly believe they see a difference because they want to feel better as well. And as doctors and nurses it is in their nature to want to help too and want us to feel better and they don't know what else to say.  But the truth is that his skin and eyes will be the last thing to change back most likely. And we are ok with that. That being said I totally think his feet and hands look more normal color today. Lol

Another good day

Yesterday was a good day. They removed Philip's catheter and tube that drained his stomach. The only things left are his JP drain(tube inserted in his side to drain fluid) and IV. I held him for most of the afternoon. He is so hungry and is getting very irritable because if it. He doesn't settle easily but was comfortable in my arms. He started wetting diapers on his own which is great.
I came home last night to spend time with Danny so Dan stayed at the hospital. It was really hard to leave but Danny is still adjusting to having a new brother and on top of that I think he senses something about what is going on. I'm getting xtra hugs and kisses from him! It could be that he just misses me though. It didn't hurt to sleep in a regular bed either or get more than 4 hours of broken sleep. Hopefully today we can start to feed Philip. The doctors say it should be a boring couple of days.
Lets hope for boring!

Movin' on up!

Out of the PICU that is!!!!
Philip did great today. He went most of the day without morphine and I got to hold him!
That was a little traumatizing but at least I held him. He kept squirming which obviously caused him pain so I only held him for a couple if minutes. They also told us Philip would possibly be moving to a regular room. Dr. Prince came to see him and was very happy with how he was doing. He said he looks like what other patients at 3-4 days post op look like. So he didn't see a reason for him to be in the PICU either. So around 9:00pm we moved to a regular room. Still no feedings and still has catheter, fluid drain on his side( don't know what it is called) multiple IV's and the tube up his nose to drain his stomach. But tomorrow they think they may be able to remove some of them. Keep the prayers and thoughts coming because they are definitely working!