Monday, February 23, 2009

Baby Ethan is Moving - 2/23

This Wednesday Ethan is being moved to Seattle Children's hospital.
This is undoubtedly going to be a MAJOR lifestyle shift for both of us.
There is not much more news beyond that. If the Social Worker doesn't get all her ducks in a row tomorrow, then we will probably be moving on Thursday.

We will let you all know more as the news comes!

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 2/20/09

So, we have some very important news for everyone. If anyone would like to come to see Ethan, this week is the time to do it as he is being transferred to Seattle Children's as early as sometime next week.
Lindsey - Dr. Abou-Harb will try to facilitate the move either on Sunday, or more likely Monday a week from now. This way it falls on my days off. We did that for you! ;-)
The reason for the transfer is that Sacred Heart believes that they have tried everything in their power to "fix" our little boy, but just don't have any more ideas. At least in Seattle there will be a team of GI specialists that will work with him, instead of just one. The unit he will be in will be a GI unit, and in that unit, he will be in the specialized division. Tia will go to be with Ethan full time while I stay at home and continue to work to pay for rent. Little Man Riley will go live with g-ma and g-pa and him and I will travel to-and-from Seattle every week. Another benefit to Seattle is that they will be able to give him fish oil to replace the lipids he is recieveing. I guess the lipids he gets now is made of soy and that is part of the problem that is causing his liver damage.
About going to the PICU, that was a serious waste of time. It ended up that he had a urinary tract infection from his catheter, which was pulled shortly after he returned to the Peds. unit. He spent less than 12 hours in the PICU and left because the PICU docs didn't believe he needed to be there. Lets all thank Sacred Heart for scaring the daylights out of Tia and I. But I think they were just trying to play it safe.
Other than that, everything else is somewhat copasetic. He has begun to smile again for the first time in weeks. He has also started talking again, and seems to be just a cheerful as ever.
Thank you again for all your support! We appreciate every one of you!
Directions to Sacred Heart is found below.
- Kip, Tia, Riley, and Baby E -
Directions to Sacred Heart:
BRING CASH! You will need to pay for parking. At most it will be $3.
If you get off the Division St exit, go around the block to Browne St (heading south, towards the hospital).
Continue up the hill to until the road begins to veer to the right. You will see a little island, stay to the LEFT of the island. You will shortly come to a stop sign. This should be 7th. Take a left. Just past the loading docks on the right you will see a gated entrance. Go in there by taking a parking ticket. When you enter the garage, the first set of elevators you will see on your right will be the "Fish" elevators. You want to continue around the garage until you see the "Star" elevators. These two elevators are on opposite ends of the garage. Take the "Star" elevator to L2 (btw, make sure you make note of what color you are parked on). When you exit the elevators you will be at the front door of the Pediatrics unit. Go in there, and look for room 211. It will be the last door on the right across from the nurses station. You don't need to check in with the nurses, just go in. Please feel free to come see Ethan even if we are not there.
Also, you will find a guest book located on the wall underneath the TV. We ask that all of you please at least sign and date the guest book. We would like to keep a copy of who came to see him in his scrapbook.
Most days we are there from noon to 5. You do not need to make an appointment with us, just show up!
Thank you all again!

Baby Ethan Update - 2/14/09

At 5:30 am this morning, I received a call from Tia...she was not sounding too great. She told me that something had happened to Ethan over the night and they were moving him to the Pediatric Intensive Care Unit.

What we were told is that he had a fever of 103, and his BP was dropping. The unit decided to give him IV saline to get his BP back up. Instead of his blood absorbing the saline, his abdominal cavity did. It created pressure on the lower portion of his lungs and cause him to not be able to take full breaths. And that is truly what was happening. He was having a hard time breathing!

So we are siiting here in the PICU just waiting. The doctor has come in and thinks that we could be going back to his room anytime time today. We are not really sure what is wrong...or if anything is even wrong at all.

So, when we know something we will let you all know. Please keep up the prayers, he definately needs it!

Take care for now!

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 2/12/09

Hello again!
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 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 -

Baby Ethan Update - 1/31/09

Welcome back, ya'll! Where have you been? (just kidding)
I am sorry that it has been so long since our last update. We have much to tell you!
First off, I would like to thank those of you who come to visit Ethan on a regular basis. We are so blessed that Ethan has friends who care for him as much as all of you do! We thank you for that!
Also, Tia did make it out of the hospital finally. It took four extra days of recovery, and she is doing somewhat well with a little pain every now and then...but otherwise she is doing great!
Ethan, however, I feel is not doing all that great. He is still in high spirits and still smiles and now giggles at us whenever we are in the room. But his overall condition has not improved.
This past month we have been through two endoscopies taking biopsies at each one. The first one was just to see if there were any abnormalities in with his digestive system. The second was to send off to a lab to be tested for two conditions called Tufting Enteropathy, and Microvillus Inclusion Disease. Both of those came back negative. We have also taken blood samples to be sent off for testing to see if the level of his Lymphocytes has gone back to normal. LOL...ok, let me explain why I am laughing. We really don't know what all that means; however, there was a huge screw up anyway. They sent these time sensitive blood samples via FedEx to wherever the lab is, however, FedEx lost the samples somewhere in Memphis. They can see where the package was scanned in, but are unable to find it at this point. The problem is that this sample is considered a very large sample (20cc / a little less than a 1.5 tablespoons). For an infant, that is a considerable amount, and now they have to do it again on Monday.
We have also been through 4 more different types of g-tubes, all of which leak profusely around the insertion site. Leakage consists of formula, mucus, bile, and blood. Blood? Yes, blood? His platelet count has been so low that when he sneezes blood POORS out of his nose. When he bears down to try and pass gas, or other rectal things, he forces large quantities of blood out from around his g-tube site. Over the past two or three days, he has been really good about not leaking anything. His platelet count is starting to come back up, but the wierd thing is that it just spontaneously started to do that. Doctors cannot explain why his platelets are always all over the board, so just one more mystery to add to the mix.
We now have a geneticist working with the group trying to test for Shwachman-Diamond Syndrome. If this comes back positive, it could lead to an answer as to why he is not digesting his foods like he should be. The other test she is doing is for Pearson's Syndrome (read the second paragraph, Ethan has the "exocrine pancreatic insufficiency"). The basic idea is that we don't want him to have either one of these. Death is usually the case in both of these when it comes to infants. The other half of this coin is that we are not currenly able to preform these test due to the fact that insurance currently will not cover these tests. We can pay out-of-pocket, but the cheaper of the two can range up to $800. We just don't have the money available right now to pay for that.
So three weeks ago, we started Pedialyte again. We stayed on that for approx. a week, then we began adding sugar. After another few days, we began adding amino acids. All the while, he was handling all the changes very well. As a sidebar, we would like to add that mom and I were giving him breastmilk from the bottle behind the doctors backs. It was extremely small amounts, just enough to taste. And yes, in the end we did tell both the doctors what we were doing. They both had the same response..."Awesome! Now STOP!" And they both giggled.
We also tried another pork enzyme run to see if he could even handle the amount of pork in the enzymes considering the fact he has a severe pork allergy. That did not go so well. He poured blood out of his bottom for two days. We quickly put an end to that...again!
Ok, now we are up to this previous monday (1/26). We started him on what Tia and I like to call the magic formula. It is called Tolerex. We call it the "magic formula" because if he can handle this formula, he will be able to come home in a reasonably short amount of one/two weeks. He will still have to come home on the I.V. for his lipids (fat). This coming Monday, we are doing another two-day enzyme trial. After which we are switching to a formula called Vivonex. With this formula, we will be able to get off the lipids and pull the I.V., but he will still need the enzymes (the pork or the vegetable [vegetable enzymes are also an out-of-pocket expense]). But changing his formula could possibly mean that he will not be able to come home in one/two weeks; however, the doctors are still hopeful. Please keep in mind that we have been told he was coming home in two weeks since he has been born...6 months ago.
We have added two more doctors to the mix. The first one is an ENT (we don't know his/her name). We have asked for the ENT because any time you touch the inside of his nose (we have to suction boogers out of his nose ALL THE TIME as a result of his Cystic Fibrosis) he begins to bleed down the back of his throat and he choaks on it. So we have asked them to cotterize the inside of his nose, or whatever is causing all the bleeding. Before they will cotterize, we have to try three different approcahes. This is just standard procedure. We have already tried saline, and now we are trying some eucalyptus smelling drops being dropped in his nose. We don't know what the third step will be.
The second doctor is for his Kidney's. For some reason, Ethan is dumping a whole lot of protien into his urine. But the truth is, we really don't know why the Kidney doctor is around. They don't really tell us much of anything in that regard.
The past two days he has been in very high spirits. He smiles more and more often, we have been able to get him to giggle out loud for the first time in his life, and he was able to leave the unit for the first time ever with family to go on a stroller ride with his big brother. I will tell you what...they were both LOVING IT!
We are working more and more with physical therapy to get him on his tummy more, and to help him to pracitce rolling over. We also work on sitting up, his upper body stability, and head/neck control. He sees the feeding therapist twice a day as he has a serious oral aversion. He works with speech therapy to learn Spanish, German, and Latin, oh and can't forget sign language...just kidding! But he does work with speech therapy so that he can learn that it is ok to have a bottle in his mouth and he won't "freak out" as much. The fear is that when something starts trickling down his throat, he doesn't know what to do with it. We can thank Deaconess for this, and screwing up the progress we had made in the first place.
Disclaimer: We currenlty have two of Ethan's Deaconess nurses that recieve this email, Nurse M and Nurse W. We do not blame these two for the oral aversion...but we do blame other certian members of the nursing staff over there. Nurse M, and Nurse W...we love you guys...remember the Junior Mints!
So this should bring you up-to-date. I am sorry it takes me so long to is KICKING MY BUTT!!! We thank you all for your continued prayer and support. And even though it takes me so long to write, we will continue to keep you up-to-date.
Take care to you all, and God Bless!
- Kip, Tia, Riley, and Baby E -
p.s. If you wish to be removed from this update please feel free to let me know. There will be absolutely no hard feelings.