Monday, May 2, 2011

Too Much to Handle

Let me start out on a super good note to get you settled for this long blog I am about to spill out. Dewayne and I will be GETTING MARRIED on August 27th, 2011! FINALLY :o) SOOOO Excited!!!
Now, back to I will start off with our clinic visit April 27th. Good: Ashlee gained weight and is now darn near 40 pounds and in the 50.9% for BMI!!! RIGHT where they want her! And she has been eating really good lately! Hopefully we can see another big gain next visit!!!! Everything was good for her, only thing was that she started coughing out of nowhere a couple nights before clinic. They said if she was still coughing same time next week to call and they would start an abx.
Jordin on the other hand, lost weight again. She was 20 pounds, 9 oz :o( Little peanut <3 Love her <3 She is trying so hard! She got car sick on the way to clinic that morning :o( Yuck! Anyways, they started her on Bactrim (mind you this is abx number 7 since Sept) and are waiting to see what the ENT has to say. Thinking sinus surgery is in sight. Treatmens to 4 times per day :o/ That's rough :o( So, that was that. We just got her Peptamen Jr 1.5 which is what we will be switching her to during the day through her tube. That stuff is $11 per can! It's over $1000 per month! And that doesn't include her night feed supplement! Anyways, the doc and nutritionist is hoping she will not be puking this up at all. She has been having some more issues with food sight, usually while on her tube or just after. She will starts gagging and or puke :o( We were at Bob Evans the other day for brunch and she was in the middle of a feeding. As soon as the food was all being placed on the table, she started gagging and ended up puking all over the floor and her seat and self :o( Ugh. That sucked...don't think I will take her out to eat any time soon! She has done a couple similar things at home too...usually not the formula coming up though. Mostly whatever she has eaten/drank, so maybe the formula is good...I am wondering if being taken off the Pariactin a few weeks ago has anyting to do with that. SO I have started her back on that to see if it is helping w/ her visual issues and puking. She did it twice just today. Oh, and he said if this did not help her puking, then he was going to refer us back to the surgeon to redo her fundo surgery. I am not with him there. I do not want her fundo redone. I am sticking firm with that. Obviously, she can puke for a reason! I am not going to sit and watch her heave. It is not going to stop her from having to puke. They are trying to cover things up instead of fix them! I am not happy with them. I would, and I think the surgeon may agree with me cuz he had mentioned it, move on next to the gj tube before doing anything more about her fundo.
Jordin had her ENT appt on the 29th. It was supposed to be the week before but the doc was sick and our appt got cancelled! She also got car sick on the way to this appt! They checked her out, and put a scope/camera into her nasal passage :o( She hated it :o( Ugh...makes me cry. They held her head on my chest so hard that my chest was briused the next day! She was fine after :o) It is just hard to see them deal with all this stuff non stop :o( The doc said she DIDN'T have ANY polyps!!! AND her adenoids we small to medium sized and not enlarged! She is now scheduled to have a CT scan of her sinues (well, we're waiting on an appt date), then we will go back to see the ENT again to discuss the results of that. Could be 3-4 weeks before we get through that. Oh and he agreed that it would be ideal if we could do sinus rinses on her, but she will not allow it and screams and cries and could end up aspirating it into her lungs and it is not worth the risk.
I called the clinic today to find out about the girls' cultures. They called back and told me that Jordin cultured staph and psuedomonas, and Ashlee cultured psuedomonas! Also that they were not going to treat them differently right now! Nothing more for Ashlee (her first psuedo culture!) and Jordin is already on an abx...not sure if it is for psuedo though, but this is her 4th time culturing it :o( I ain't a doctor, but I KNOW they should both be on TOBI right now! I am SO mad at the clinic! What are they thinking??! Jordin needs to run it every other month. She has been non stop sick and it probably has something to do with it! And for Ashlee they should be trying to eradicate it right away by treating it aggressively! DUH! Not really sure what our doctors are for anymore. I can't wait til we go to Ann Arbor May 20th! It can't come soon enough! I am going to be calling the clinic in the morning and they will be treating this psuedomonas for both of them! Sucks, I hate the thought of adding Tobi (1/2 hour to each morning and night treatments for each kid!)...but they need it!
I think that our clinic is in too deep and they can't handle everything. Jordin needs an appt to be seen back in 4 weeks, Ashlee not til July...BUT they have NO appts in either month!!! How can they not have any appts open in July!?!?! They have to make appts and call us! EVERY time! This happens at EVERY appt! It is so dumb. They have no time to see them if they are sick. I have had enough of that.
Oh AND Jordin will be 2 this week!!!! (Dewayne 39!) lol I can't believe she is getting so old!!! My baby girl is growing up! She is so funny though :o) And she says alot of stuff!!! It is so cute!
Well, I think I included most everything. If I forgot anything I will add it later. Til next time....

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