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 -