We have some very interesting news this time around!
A week ago today (Wednesday) I had a very scary episode in Ethan's room. Luckily it was at the hospital and not somewhere like in my car! The ER doctor called the episode I had a "Vasovagal Syncope with Hypertension". Basically I had what looked like a seizure due to my blood pressure being 210/166. For those of you who don't know, normal blood pressure is 120/80. The conclusion is that because I am overweight, unhealthy, and stressed out my blood pressure is out of control. I know that I have too many stressers in my life...so I eliminated one of them. As of yesterday I dropped out of school. It was a hard decision to make, but it is for the better. And even though it will probably cost me a lot to get back in, it is worth it to be able to focus on my work, but mostly my family!
On to Ethan!
Do you all remember the blood samples we spoke about that got lost by FedEx in Memphis? Well, we did end up sending another sample to Seattle which yeilded some very interesting news. The lab in seattle still did not do all the tests they were supposed to do, but did do at least a couple. The couple that they did do came back negative for some condition they believed that Tia may have given while he was in the womb. We don't exactly understand what the doc was talking about...but we'll just trust him anyway! LOL
As far as the "magical formula" goes, well...we still won't be able to go home simply because he is on his IV. They think his IV is causing liver damage, and they don't want that condition leaving a controlled environment. We tried to give him his Pancreacarb enzymes again (the pork ones we know he is allergic to). Since we are aware of this allergy we wanted to start off with something small, a 1/2 dose. He bled out his g-tube site for a week solid. The funny thing about this all is that none of the doctors can agree on what actually caused the bleeding. Some of them think it was because he laid on his stomache and created some irritation at the g-tube site that cuased the bleeding. So then we gave him a whole week to rest (no enzymes). Then this last Monday we started his Pancreacarb again. He recieved these enzymes again for two days. The first day went by without a hitch. The second day he POURED diarrhea! It was clear like water and was almost 1,000 cc in volume (let me spell this out for you. He pooped enough water to fill a half a 2L soda bottle.).
The past 10 days have been REAL rocky as our GI doctor (Dr. Abou-Harb) has been visiting the Aloha state. While he was gone the hospitalists ordered to stop his enzymes again. When Abou-Harb came in this morning he stopped all his formula also. The new plan is to restart the formula again. We will continue this formula for a few days after which we will start his veggie enzymes again. We will keep him on the veggie enzymes for a few days then try him on a new formula called Vivonex. After a few days of Vivonex, we will adjust the enzymes according to the fat, sugar and other things found in his poop. If all this goes well, we should be going home.
There is an alternate plan however considering that Ethan likes to play these guessing games with us ALL THE TIME! If at any point the previously mentioned plan fails, we will be transferring to Seattle. We are at the point that the doctors here do not know what to do. Our Pulmonologist stated that if it ever gets to the point that we will need a liver transplant, we will already be in the best place for him to recieve a new one. We are talking about this because his billirubin count keeps going up. The further up this nubmer goes, the more damage is dealt to the liver.
We are also having a bone marrow test done. I sure as heck hope they sedate him for this, those things HURT...from what I understand!
We are also supposed to have genetics testing done; however, DSHS has denied our claim and will not be paying for these tests. The request has been elevated to our geneticist for submission and hopefully the state will the severity in what we are testing for! Keep your fingers crossed!
So that should bring you up-to-date for now. We will most likely send another update in a week, even if it is a short one, to let you know the status if these trials and to let you know if we are going to be going somewhere!
Take care for now! And we will chat again soon!
- Kip, Tia, Riley, and Baby E -