Friday, September 11, 2009
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
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
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.
Saturday, July 4, 2009
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
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
Sunday, May 10, 2009
Missing you mom
Thursday, April 30, 2009
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
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.
Sunday, March 22, 2009
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
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 ...
- Kip -
We will tell you more later. But for now I've gotta get goin!
Thank you all!
- Kip, Tia, Riley, and Baby E -
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
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 -
Thats all for now, folks!
- Kip, Tia, Riley, and Baby E -
Monday, February 23, 2009
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 -
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 -
Sunday, January 4, 2009
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 -