Friday, September 11, 2009

Miss you baby boy

Its so hard for me to watch the other baby's that were born around you, grow and get bigger and do things. I just want to see you. I want to see all your big smiles that you gave us.
Im greatful that you were so happy, I was thinking the other day, how could you not be miserable. Life was shitty for you. I dont know how you could not have been in constant pain. Your poor little butt was always raw, your stomach was always so big. But you never seemed to care. We could do almost anything to you and your were content.
You loved it when we would take you for rides in your wagon or stoller. You loved playing with your brother. You were such a sweet boy, I wish I could see you. I love and miss you.

Wednesday, August 12, 2009

Wish I could just run away.

There are days when I just wish that I could run away from life and come and join you. Life is so hard right now. I feel like No matter what I do its never right. All I hear from you dad is that at so bad, I cant ever do anything right, that im so horrible and its starting to take a tole on me.

Today I made a comment when I got of the phone, and he got all mad at me and took a large package of wood flooring and slammed it into me almost knocking me over.
Then told me it was my fault because im so stupid.

Why can't life just be easy for once in my life??

Saturday, August 1, 2009

Today is your first Birthday

But you are not here to celebrate with us. I wish things were differnt, I wish God had not taken you so soon from us. But he did, so we must make the best of it. We have alittle cake for you, and a card for you. We will go back to the hospital that you were born at and tell the nurses thank you for taking care of you. We will give them the dvd from all of your memorial services. We will also got to your second hospital and tell them thank you for taking care of you and give them some of the dvds also.
We are going to light your memorial candle for you, and let a ballon for up to you in heaven. Hope you get it and read the letter that we sent you.

I love and miss you and cant wait to see you again some day.

Love mom

Saturday, July 4, 2009

Days go by.

The days go by, some fast, some slow. Its hard to watch the other babys that were born just a month before you and a month after you thrive and do so well. They were supposed to be your little friends. But God had other plans.

Each day I watch over your roommate from the nicu and and think why is this not you.
Its almost your birthday, we have no big plans. I think we are going to have a little cake for you and light your remembrance candle, and let one balloon go in the sky for you.
Its so hard to explain to your brother why he cant see you. We go anywhere near the hospital and he starts crying, he starts asking why he cant see you. We tell him that you are not there and he just does not understand. I told him the other day that it was going to be a long tiem untill we saw you and get said lets go to the dr he is there. I told him no that you were gone and he said to heaven and I said yes. Riley said he wanted to go see you there and I told him not yet. He asked why and i said that you had died and that was the only way to get to see you. And he said no MOM Ethan is not dead he is at the drs.
We went to a service for all the children that have passed away this year at the childrens hospital. That was nice. I figured Riley would got upset seeeing as he was there when you passed away. But it did not seem to brother him.
Thats why I find it so weird, he gets so upset when we go by the old hospital, but does not care about the one you died in.

Please look after baby claeb for us, dont take him so soon, his mommy and daddy just got him. Please help him to grow strong so he can go home.

Last weekend we went to your uncles wedding it was so nice. Im sorry that you were not there to go with us. But as we told him when he first brought it up. We will be there no matter what, with Ethan or he will no longer by with us. Well we got our answer.

I guess your no longer going to be the baby in the family. There is going to be a new grand baby. Please let this one be well. I dont think the family can handle another sick child right now.

I think each day about your smiling face. You would smile at anyone. One day dr thone walked in and told you what a big boy you were and you started bawling. it was so funny. He told you he was sorry and you gave him a big smile. Another day he came into the room and told you he was going to cook you a steak and you laughed at him.

There were many great people who looked after you in your life. I want to thank each and everyone of them for trying to make your life better.

Ok I think i have rambled enought tongiht.
Love you mom

Thursday, June 11, 2009

Missing you

I miss you tonight more then ever, I wish that you were at home with us, in a more real way then you are now. I sit and look at your ashes and think what would you be doing right now if you were alive. In just a few short days you would be going to your uncles wedding. You would get to see all of the family some of them for the first time.

Its almost what would be your first birthday, god why did you have to be taken from us so soon, I miss you so much. I wish each and everyday that I had had more time to spend with you and not so selfishly spending time with everyone else. I wish i could turn back time and have sent you to seattle sooner maybe they could have helped you more.

On Sunday I will go to another memorial service for you, at the hospital where you left us. Thats going to be so hard to walk in there and know thats the last place i ever got to hold you, that I wont hold you again untill we meet again in heaven. I wish that had been able to sepend more time with you once you had pasted, I feel like everyone rushed me away from you. It was important for me to spend alittle more time with you, even if you were not really there with me. Even it it was just with your lifeless body. Those last few minutes we held you, you looked nothing like yourself, almost the size of Riley, you were still so beautifl to me.

It was one of the hardest thing I ever had to do was leave you in that room all by yourlself, there was nothing more anyone could do for you, god had chosen it was your time to go. But im my mind it was to soon, You never got to experiance life outside the hospital, you never got to do anyhting except be a sick child.

You will never get you first kiss, never play ball with your dad or your brother.. never get to go to prom or on a date.. drive a car, get married or have children. Im so sorry that you never got to experience thses things.

I love you always and forever
Mom
video

Sunday, May 10, 2009

Mothers day

Well today was my first mothers day with out Ethan, he never even got to spend a mothers day with me. But We went out to dinner with family , which did not leave time to think about you. But know that you are always in the back of my mind, there is not really a time that I am not thinking about you, wondering what you would have been doing at this time. Wish you were here with us but we cant change how the cards fell. I love and miss you and can't wait to see you one day.

Missing you mom

Thursday, April 30, 2009

I miss you so much Ethan

I just want to thank all of the readers of this blog for all of your support.
I want to thank God for giving me 2 sweet boys to love.
I don't understand why God gave us Ethan and then took him away so soon, but that may be something we never know.
I sad that we had such a short time with Ethan, but on the other hand Im glad it was not to long for him. That he does not have to go threw all the pain and the suffering anymore. He might not have know that he was suffering but I think he was. I long for the day when I get to see you again up in heaven, But know that to see you I will have to leave Riley here, which i don't want to do just yet.
I don't understand how you went from laughing and playing
video video
To this in just over a day

I love you and miss you so much, Im so glad we got to do all the things we did with you. We got to feed you lots of crazy food you should not give a baby, we got to take you on a few stroller rides around the hospital, you got to see a dog, you got to see one of your great grandmothers.

Your first birthday will be coming up in a few months and It will be hard, but mom and dad and brother will go and do something nice to honor you.

As the days go by the pain seems to get a little less but then all at once it comes back like the day you left us. I just can't stop think why were we so selfish to not spend more time with you, when we had so little time with you as it was. Why did we not try harder to get you home, there are so many why and what ifs.

Please forgive me for being selfish and wanting to hold you, but by holding you I gave you no chance to fight, by holding you we gave up on you. Im sorry son, I love you so much, and wish we could have you back.
love mom

Sunday, March 22, 2009

Baby Ethan Update

It feels weird to be sending another update! Like we're going to update you on his condition or something..."yep, he's still dead!" lol...sorry, we find humor in strange places these days.

OK, so his service will be held on April 5th, at 2:00pm at Valley Bible Church in the Spokane Valley.
3021 S Sullivan Rd, Veradale, WA 99037
Directions (Simple): Take Sullivan offramp from I-90. Go south until 32nd street. Church on left.
Hors d'oeuvres and other receptionny things to follow.

We also have special room rates at a semi-local hotel for anyone who will be coming in from out of town. I have set up a $75 room rate at the beautiful, new, Hampton Inn & Suites in Coeur d'Alene. You MUST speak with the General Manager, Lindsey Hertwick, to get this special rate. Just tell her you are here for Baby Ethans funeral. She knows what is going on...she's my boss!
Reservations: (208) 769-7900 there is no maximum or minimum limit on number of nights that I am aware of
The day of service, I will be providing transportation from the hotel to the church for anyone who would like a ride...it's about a 25 minute drive.

I was not able to get bereavement fares from any of the airlines to help with travel costs. However, if I can get 10 or more people willing to travel with the same airlines, I will be able to set up a group rate and get it even cheaper than a bereavement rate anyway. Also, I would suggest looking into flights from JetBlue, they have pretty good rates.

If you have any other questions please feel free to get a hold of us.

Thank you all for everything you have done for our family, we love each and every one of you all very dearly!

- Kip, Tia, Riley, and the Spirit of Baby E -

Friday, March 20, 2009

R.I.P. Baby Ethan

Born August 1st, 2008 at 6:43pm
8 pounds, 0 ounces
21 inches long

Died March 13th, 2009 at 5:10pm
26 pounds, 0 ounces
26 inches long

Baby Ethan is pulling through!

Ok, we have a TON to tell you all. It is 3:20am and we still have not been able to see him since his procedure started. But for now he is pulling through at least this night!

Tomorrow we will tell you about his condition, the procedure he had, the risks that are still involved and ...

gotta go!

- Kip -


Baby Ethan is dying!

The hospital called my family and told everyone to get to Seattle as soon as possible. The ICU doc told me that he would probably check out before we all get there.

We will tell you more later. But for now I've gotta get goin!

Thank you all!

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 3/10/09

Hello all, it's that time again!

Please pray for our little guy tomorrow, he has another bowel surgery scheduled for the morning. Earlier this week we had an upper G.I. done where they found a blockage in his bowels. They are not sure if the blockage is a meconium blockage, or scar tissue from his resection surgery a long time ago. If it is scar tissue, they will have to cut it out and resect him again. They will also more than likely be pulling his g-tube for good, also they are going to be doing another bronchoscopy with culture.

The reason they want to take his g-tube out is becuase this hospital does not believe in g-tubes in a patient so young. Instead, they will go with an NG-tube if necessary. If you remember, it is the same tube that Baby R had so much trouble with at Deaconess. The reason I say if necessary is because the doctors are all thinking that if we can fix this blockage, it will solve all our problems. It will make his belly swelling decrease, it should cause him to want to start eating, and it will give him more formed poops. Also this would fix his liver problems as long as his liver is not too far damaged already.

Also, from his very first surgery, is surgeon gave him what is called a Nissen Fundoplication. In lames terms, it means that they stiched his stomache to his diaphragm. This would mean that he would never have acid problems, and would make it very difficult for him to throw up. From the sounds of things, we fear that they are threatening to remove his Nissen wholly because this hospital does not believe in them altogether.

When we say, "does not believe in them" please know that what they tell us is that it is hospital policy for them not to do these things. We don't know why they won't do them, and moreover why they would "undo" these surgeries.

Well, it's late and they are calling us at like 6:00am to tell us the plan for tomorrow. So we will let you all know shortly how the surgery went.

Talk to you all soon!

- Kip, Tia, Riley, and Baby E -

Friday, March 6, 2009

Baby Ethan Update - 3/3/09 - This one is not so good!

Hello again friends!

So let me tell you an interesting story!

We left Spokane on Thursday last via Medstar's airplane at approx 9am. The nurses at Sacred Heart had told us that Ethan had started the day in kind of bad shape as he had a really hard night the night before. What they did not tell us was that Ethan was in no condition to be moved at all. Either because they did not know, or they knew that since this was a scheduled transfer that putting it off would create havoc with Medstar. In any case, when Medstar showed up at his room, they immediately had to start giving him breathing treatments. These breathing treatments continued on the ambulance to the tarmac, and during his flight the entire way here. When he landed in Seattle he was in severe respritory distress. To add to the chaos, when they landed, the ambulance was no where in site. They had to wait more than 10 minutes for the ambulance to show up. When the ambulance crew got there, they were extremely concerned for his well being and rushed him to the Children's Hospital using full lights and sirens. Ethan was immediately admitted to the Childrens Hospital Emergancy Room where he stayed for upwards of 6-7 hours. At that point he was transferred to the PICU becuase he was still in such an unstable condition. He stayed in the PICU for a few days, finally transferring into his designated room yesterday (Tuesday). His condition leaving Spokane was so horribly bad that when he got here they wanted to put him immediately onto a ventilator. The staff here was extremely supprised that Sacred Heart would allow this transfer to happen, and scolded us as parents for not stepping up to Sacred Heart and telling them that we did not want the tranfer at that time. But since he is here, they are obviously not going to send him back (no returns on defective products, I guess).

Upon addmitance, the staff felt that the ventilator was not necessary, however, they did put him on CPAP! You all remember, he was on that a LONG time ago?!? He stayed on CPAP for a few days, after wich they weaned him down to a high-flow nasal cannula. As of yesterday, they took him off the high-flow cannula, and put him on a regular cannula. As today goes, he is breathing on his own without any assistance. Yeah for Ethan!!!

Today the doctors took out the GJ-tube, and replaced it with a Mic (I think that is what they called it). In any case, it is just a g-TUBE without a button. The reason they took out the GJ-tube was because he was venting out of his tube pitch black tarry looking stuff. They said it was old blood that got stuck in his tube and bowels and his body was trying to push it out. They also said that the blood was due to the J-tube irritating the bowels. The doctors also said that the tube that was inserted was way too large, and that their policy is that they never put a GJ-tube in a paitent under 1 year of age. But if we all remember back, we tried many other options before the GJ-tube and EVERYTING failed. However, since this change his blood leakage around his site has decreased and the vent has done a better job pulling out the "junk" that is in there. At the time of admittance his poor little belly was ROCK hard! He was also oozing brownish-blackish-greenish nasty puss from his site. They cultured it and it came back positive for Staph...not MRSA.

Today when we looked at him, and remember this is after the g-tube change, his belly was visibly less distended, and it was back to a normal "soft" feeling. He was singing, cooing, laughing, and playing with big brother all day today. We believe that he has improved because this new tube is getting out all the gunk that the old tube was not! Also, during the g-tube switch he had lost so much blood that another platelet transfusion was warrented. The one thing that really put us off with this whole switch is that they took him to the O.R. and just did it without our consent. Usually they won't ask for our consent if it is a life-threatening situation and there is no time to get our consent. It just makes us feel weird that they would do any procedure without first letting us know!

The other big change for us is that his CPT (Chest Percussion Therapy) is not longer done manually, they use a vibrator instead. They use this as a precautionary mesure as they believe the manual CPT is to rough for him and due to his platelets being so low, they feel that it would cause severe bruising.

Other than than that, life here is definately been a serious change for us. It has proven to be somewhat challenging be new to an area and not knowing what to do, or where to go! We have definately learned how dependant on Wal-Mart Supercenters we are, considering there are only two in the entire region and they are both at least 45 min away! Kip has learned how to burn up a clutch staring from a red light on steep hills (oops)! We learned that when your vehicle has an oil leak, and you have to drive across state...make sure to pack extra quarts of oil. Something that I (Kip) neglected to do! I learned how pissed off I was to know that Tia had already landed before I even left the NAPA parking lot here is Spokane because I broke Tia's driver side window switch on accident...yeah, it was raining that day, and the window was stuck DOWN!!! We learned VERY quickly that if you hear someone honking, they are probably honking at you, and probably because you are doing something wrong! We also learned that parking is a FORTUNE! We parked for like 3 or 4 hours and it cost us $17. However, today we "shopped around" for parking and found that you can park on the street at these cool little credit card pay meters for upwards of two hours at $2.50/hour. The nice thing about that is it was about a block away from Pike Place Market! Cool beans! We learned that being in a small hotel sized room with eachother can prove to be a real character builder for the both of us. All this makes me realize how simple life is in Spokane!

We hope all of you are well, and appreciate the thoughts, prayers, support, and other forms of encouragement! You have all been awesome!
We love you all!

- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 2/24

So, I know we told you all we are leaving tomorrow...the doctors have procrastinated doing the paperwork, so now we are leaving on Thrusday. But we are assured that this time we are DEFINITELY leaving on Thursday.

Thats all for now, folks!

- Kip, Tia, Riley, and Baby E -

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.
Sincerely,
- 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 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 -

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 time...like 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 write...school 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!
Sincerely,
- 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.

Sunday, January 4, 2009

Not-So Baby Ethan Update

So, just a small update on the family!
Three days ago Tia went under the knife to have an abdominal hernia repaired. Hafter having two somewhat large children, things like this happen! Immediately following her surgery she started going downhill. Severe headaches, severe nauseousness, sever pain...everywhere. She was completely bed ridden for 2 days. Finally at about 3 am yesterday morning, she decided that all this throwing up could threaten the integrity of the repair and the mesh holding everything in place. So her and her stepmom went down to the Valley General Hospital emergency room (I was at work). At 7:30am I get the call that she is going in for a CT Scan. At 8:30, I get another call saying that she is going to be admitted.
She checked herself in at 3am and the first doctor didn't come to see her until 5:30pm...like, in the evening! FYI, Valley Hospital is the EXACT SAME company as Deaconess. And I think we all know how we feel about Deaconess.
The doctor came in and talked to her for like 6 minutes, he sounded really confused on why she was there and gave us the impression that she didn't even need to be there. We beg to differ! He then, real abruptly, kind of meandered out of the room. In the middle of the conversation. He didn't say good bye, didn't say he'd be back, didn't say he was going to go check something...or whatever. He just didn't say anything...just left. The nurse came in and asked what his thoughts were. We were stumped, he didn't tell us anything! He did mention an OB-GYN consult (not quite sure why). But after the OB did a seriously painful pelvic exam, he determined that she either has cysts on her fallopian tubes, or Pelvic Inflamation Disease contracted from the surgery. He also said that there is a chance she could remain an inpatient for up to 4 days. If the antibiotics are not helping her in 4 days, then another surgery might be in close pursuit. That will mean she will still be inpatient when I start school on Monday...and I still have to juggle everything else. At this point I had to go to bed. It was after 7pm, and I had to get up by 9:15 to leave by 9:30. Yes, I slept at the hospital in my work clothes...eew!
I will know more when I go see her today. The stupid thing about all this is, her hospital is in the Spokane Valley, Ethan's hospital is in downtown Spokane which are probably a good 20 minutes apart in this dumb weather we are having.
In any case...more prayers please!
Take care for now.
- Kip, Tia, Riley, and Baby E -

Baby Ethan Update - 12/31/08

Ok, so I know I told you I would write when he moved...and I didn't!
Just know, the move went really well, Medstar came late, it took like 25 minutes to drive 6 blocks, and then the intake was like 4 1/2 hours long. But all in all, he is at a better hospital with a much better staff.

For those of you who wish to visit him, he in on L2E (Lower Level 2 - East), room 211. You don't need to sign in, you don't need permission, you can just go right in. When you get to the pediatrics unit, he is the last door on the right across from the nurses station. You don't even need to tell the nurses who you are, really!

In any case, he was doing a lot better. We were able to get him from a continuous feed up to a bolus feed which is more desirable for his situation. He was doing really good with that until he decided that he would start having his watery stool again. We did find out that he has a class 3 allergy to pork (I guess class 3 is the highest/worst), which his Pancreacarb (his miracle enzymes) is a pork derivative. So we quickly stopped using those (even though he was having no adverse effects from it), and put him on these vegetable enzymes that we can only get a Huckleberries and insurance, nor the hospital, will cover at this point. So now we are stuck with paying for these enzymes out of pocket. $11 for 60 pills, 60 pills are only good for just under 7 days. And these are supposedly the enzymes he will use for the rest of his life. This is going to get expensive!!!

So, making a long story short, we still don't know when he is going home, we still don't know why he is having such bad liquid stool, we don't know why he is getting this serious butt rash that he has. We have gone through like 3 different g-tubes and nothing has seemed to work. Everything we try just keeps leaking around the tube at the insertion site. We started out with a bard g-tube. We took that out and put a foly cathiter in. This is a urinary cathiter that is smaller in diameter that was inserted in it's place in hopes that the site will shrink down around the smaller cathiter. We will then take the cathiter out and put the g-tube back in making a tighter fit. That was the idea. So after a couple days with the cathiter in, the surgeon decided that it was time to put the g-tube back in. Instead of using the bard, he decided that a Mickey was a better choice of g-tube for Ethan. It took only a couple days to find out that this g-tube was also leaking perfusely around the site. The decision was made to have radiology take the Mickey out and put in what is called a GJ-tube. This is a tube that bypasses the stomach and goes directly into his upper small intestine, it is called the jejunium. We did that yesterday, and now he is "frothing" at the insertion site. We are all so confused on what is going on, so we decided to take him back down to radiology today to see if posibly the tube was placed wrong, or something else is malfunctioning. No results as of yet!

Prayers are still needed for this feeding issue. Nobody seems to know why he can't keep his food in. Also, we need prayers for controlling the acide levels of his stool to reduce the sevarity of his butt rash. We also would like prayers that he will be able to come home soon. Once he is on a feeding regiment that works, home is just right around the corner. Prayer for Tia as she is sitting behind me right now, trying to put her clothes on by herself in the recovery room after her hernia surgery. And a lot more paryers, but I think I should go help her get dressed. She is wincing and moaning. I am such a bad boyfriend right now!

Love you all!

Take care for now,

- Kip, Tia, Riley, and Baby E -