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 -