SURGERY UPDATE

WE ARE STILL IN L.A ADRIAN HAD HIS SURGERY 2 DAYS AGO AND HE IS DOING BEAUTIFULLY THEY FOUND A FEW SMALL KINKS BUT NO REASON TO PUT IN AN OSTOMY HE HAS THROWN UP TWICE BUT THE DOCTORS SAY ITS FROM THE MORPHINE(THAT WE STOPPED THIS MORNING) THE SURGEON IS VERY OPTIMISTIC AND BELIEVES ADRIAN SHOULD BE UP TO HIS GOAL IN A REASONABLE TIME FRAME !!!

L.A UPDATE

WELL SO FAR WE ARE IN L.A WE HAVE BEEN HERE SINCE SATURDAY ADRIAN IS EATING 4CC AN HR HE HAS NO OBSTRUCTION SO WE ARE JUST WAITING FOR THE DOCTORS BECAUSE THEY ARE NOT SURE WHAT THEY ARE GOING TO DO SO FAR IT HASN'T BEEN VERY GOOD WERE BOTH IRRITABLE AND UNCONFORTABLE BUT WE DID GET TO MEET LINDSAY LOHAN I WILL POST THE PIX LATER ADRIAN IS NOT IN THEM BECAUSE WITH ALL THE PEOPLE AND SECURITY HE GOT SCARED BUT SHE WAS VERY NICE !!!

Happy Hlloween

Happy Halloween 2007!!!!

Today was a pretty fun day even though we were at the hospital, they had a carnival, pumpkin painting, and all kinds of fun events. We should be leaving for L.A for sure with in the next two days Thanks to Dr Ursea finally things can get moving although I didnt want to go to L.A the thought of it helping Adrian get back on feeds I more than willing to go. He was a lion this year (Adrian The Great ) lol. Daddy and Mommy spent all morning getting Adrian dressed and showing him off to all of the nurses , then later he went to the carnival and got some pictures taken and Tiffany, Raquel , and Grandma came and saw him he was soo excited that at bedtime he wanted nooo part of it but all in all it was a good day and i have the most handsome little lion you'll ever see!!!!!!!!!!!!!!!!

October 25, 2007

SOOOOO Sorry I havent written in awhile but as of right now Adrian officially has an obstruction and we will be leaving for L.A on monday to have surgery!!!!we are hoping this will work and we will be on our way to getting off tpn !!!he recently started waving and babbling more he officially can say 3 words mama,dada, and ball . It is soo amazing and fun to see him progress more and more and just to play with him my little guy is getting so big he enjoys playing with his best buddy Darion I will be posting pix later on so keep checking !!!
Thx for taking time to be concerned
Linsy and Adrian

standing still

well sorry i havent updated but theres really nothing to update adrian is still in the hospital and still vomitting green bile at least 4 times a day the doctors are at a loss so they dont change anything he is recieving his feeds at 16ml an hr with no sign of home in the near future...if anyone knows why a child without a line infection, no flu, no bacterial overgrowth, would still be throwing up please let me know i am stumped!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

October 4th, 2007

Not much to report today adrian threw up 4 times and the doctors arent giving me a definite of when he can come home its driving me crazy not having him home :( !! I want him home so bad but I want him to stop throwing up I feel like I he's not getting any better in the hospital and I dont know what to do the doctors say we should just wait.....................................................................................................................................................................................
this is us waiting...................................................................................................................this is him not getting any better...........................................................................................

October 3rd, 2007

Adrian's flu is passing and he is recieving his elecare at a rate of 20ml an hr although he keeps vomitting the g.i doctors basically told me they are not to worried about the vomitting 1st they thought he was vomitting due to the flu but he is still vomitting and the doctors say since he is gaining weight and his bowel isnt dilating so they will let him go home and move up on his feeds at home if anyone has any advice on how to stop the vomitting let me know thx...............

September 30, 2007

To start off I will let you know about whats been going on the last couple days well you couldnt even tell Adrian had the flu the last couple days ..........

but today you really could he was very congested and fussy, the GI doctor cycled the tpn last night and discontinued the extra fluids, I asked that they put the extra fluids back on because his mouth was dry and when he cried there were no tears and since he's been vomitting alot I think he needs the extra fluids but the GI docs think he doesnt need the extra fluids. He's only getting 10ml an hour of the elecare and our goal before he can go home is 20ml an hr for 48hr with no vomitting before we can consider sending him home so I'm really hoping that he feels better and begins to tolerate!!!!!!!!!!!!!!!

Well today I spoke with Dr Ursea and the barrium showed everything is all normal no adhesion or dialation but he did test positive for "INFLUENZA" but other than that he should be fine and tolerate feeds he can come home once he gets up to our original amount of 20ml an hr but he must stay at this for 22 hours they are also treating him for bacteria overgrowth and givinh him a medication to help stimulate the bowels motility. thank god no adhesion!!!

here are some older videos of him when he was younger check em out!!!!


http://www.youtube.com/watch?v=4OAajVan36A
http://www.youtube.com/watch?v=ZI3g4iCqV3Q
http://www.youtube.com/watch?v=ZI3g4iCqV3Q

September 26th, 2007

Today I got a chance to speak with Dr. Ursesa (g.i.) she explained to me that as of right now we don't know whats wrong with him , the cultures from his line are all still negative :) which is good but he is still having fevers and lotts n lotts of vomitting, the bowel x-ray didnt show anything but we'll know tomorrow what the barrium study showed we are hoping for bacterial overgrowth because the alternative is an adhesion which would mean he would have to have surgery to correct this problem so as of right now we just have to wait.:(

well to start off I will tell you about our appointmrnt with the surgeon (dr lacey) he said that he is writing a order for a upper g.i. small bowel follow through, it was scheduled for this thursday at 9:00 a.m but..........THAT WILL NOT HAPPEN B/C MR ADRIAN IS BACK AT PHX CHILDRENS i took him in this morning around 10:00a.m after a lonnnnng night of no sleep just puke and crying he had a fever of 103.3 and they drew labs and did a bowel xray suprisingly the x ray showed he just had a little dialation or gas and so far all labs are negative the doctors tell me they dont know why he's throwing maybe he's just gassy but it has to be something else he never cries like that or acts like that or throws up like that i hope someone can give me the answer and soon

Sorry havent written for awhile its been a little crazy well we have been having alot of vomitting but no fever but i figure its not LINE INFECTION i made an appointmnt with the surgeon to try and figure whats going on right now were doing okay w/ 9ml an hr so im gonna keep it that way and i'll let you all know what happens after our appointment hopefully its nothing.
everyone pray that its nothing!!

September 13th, 2007

Well I guess I'll start off by telling you all how our feeding expieriments are going well as of today he is eating 20ml during the day and 5ml through the night and our vomitting is decreasing. He is now recieving formula mixed with rice which is like magic his stools are thicker and he is vomitting less and were getting more calories into him. I was mixing the formula with oatmeal but the rice seems to be a little easier on his belly. I do not advise parents to go against doctors orders but this is my child and I do know BEST I have slowly been feeding him 2-3 spoonfulls of baby food with no vomitting afterword if he can tolerate and use his mouth well Im going to give it to him the liquid is still a problem. His sleeping is getting better too! He goes to sleep earlier, easier , and sleeps 8/9 hours at a time. ALSO today was our first trip to the park he loved it , I will post new pictures soon thx for reading!!!!

September 8th, 2007

well to start off I guess we'll talk about yesterday a occuplationl therapist came and evaluated him she called him resistive and aggressive now they see what i get all day long he is a very stubborn kid if he doesnt want to do something he wont do it!!!But then again he is 14months old and for "now" he is the boss we have done pretty good w/ the vomiting just our usual morning puke feat so today we are up to 17ml during the day and im taking him down at night to 14ml each day i will increase the day volume and go back on the night once the night is eliminated therefore all vomiting i am hoping we will cruse right through moving up on the feeds!!If you have any advice or ideas please let me know email me at dianmmm@yahoo.com or lilchicano000@yahoo.com thx for everything!!

He's a crazy baby!!!

Adrian's 1st halloween he was a dalmation!

Adrian 2 weeks old!

September 6th, 2007

Today was pretty good, again right when he woke up i got a nice amount of yellow vomit all over my bed gross so of course today I was doing laundry! For the last couple days i have been observing his throwing up patterns and I have noticed its always right when he wakes up I am trying to figure out a schedule to help him tolerate his feeds better. Well he only through up twice so overall today went okay.

September 5th, 2007

This morning right as I went to pick Adrian up because he was wining and ready to get up he through up a pretty good size amount of yellow/ green vomit all over so I thought this is not going to be a good day but much to my suprise today was a really really good day, that was our only emesis(so far )keep fingers crossed that we dont have a late night puke fest!! We cut all the boys hair today (Adrian, J.J( adrians cousin 4 yrs) and Dominic(other cousin 18mos)and then we went outside and played for awhile but it was too hott to stay out for long. Here in Arizona we are in the triple digits most days 111, 112, 113+ it really makes it hard to do anything with the kids in this weather...Today I tried something new with the feedings and it went really well I added oatmeal to the formula so in every ounce of formula were getting 29.4 calories instead of with plain formula only getting 20 calories im trying to get his calories up normally he gets between 200 and 300 calories and he needs to be getting between 800 and 900 to be off the tpn so we got a ways to go so i hope things keeping going well!!!!!!!!!!!!!!!!!

September 4, 2007

Today we had 2 appointments one with CRS and the other one with Dr Ingebo she is our G.I. doctor nothing exciting from CRS but at the G.I clinic they said he gained less weight this month than less month since they stopped his intralipids but they will not start them again (yay!!!) I hate that white poison!!!!! Today the vomitting remained minimal but still it was there I can handle everything else but that it wouldnt be so stressful if he didnt through up soo much it makes the simplest things soo difficult running errands is a next to impossible . I mean your walking through fry's getting grocerys and your child starts vomitting you have to hurry and grab the blanket so he doesnt get it through his clothes onto his line and risk getting LINE SEPSIS people stare cuz its yellow green and its not like a normal baby spit up it makes leaving the house dredful! Well overall today went well I think I handled my stress pretty well I have been totally fine with this whole thing up until the last week it all of a sudden got really hard. Since the vomitting was under control today im keeping a journal of it and im going to see if a differnt approach might work better for him (i.e more formula during the day and less at night)

september 3, 2007

Today went okay our stools were normal and I started the frormula again @ 2:00 p.m. at 15ml an hr(half an oz) but shortly after I started the feeds at 4:30 he through up a nice amount of yellow I have asked the doctors to tell me exactly what this is and they tell me it could be formula mixed w/ stomach acid / bile a number of things no its something and i want to know what it is well besides the emesises we had an okay day i didnt pull my hair out so i guess it was okay haha goodnite...............

September 2, 2007

Today went really well Adrian, my mom and I went to JB's with Shirley and Brandi he was such a flirt with eveyone at the restauraunt and an older man was playing with him it was so cute. Besides that the day went really well I kept him only on pedialite at 15mls per hr and he only threw up once and it was his white mucus so its nothing to worry about im going to keep him on the pedialite through the night at 15 an hr and start the formula (elecare) in the morning.

september 1, 2007

Well I'm starting this blog to let you know a little about my 14month old son Adrian he was born with short gut syndrome due to midgut vulvus and at about 3months of age he "developed" hydrocephalus. He was born on 06/16/2006, 6 weeks early weighing 6lbs 1oz 19 inches . In the early days it was very hard no one could give us any explanations about his condition except that he would probably die at around 4 months they told me awful things such as children with this condition dont make it and have no quality of life, which is really funny to me because as soon as we were transferred to phoenix childrens which is maybe 3 miles away we found other families with this condition and assurance that he was going to be okay I will write more about the early days up until now but it might take me a little while to get all the information together. Adrian was born at St. Josephs Hospital and i would not go to that hospital if i was on fire and it was the only place with water in Arizona I'll let you know more about that awful place a little later on as well.