We have WEIGHT GAIN to report!!!

So, today was our follow up at the GI clinic since James' feeding tube placement one month ago today, and I am happy to NO ELATED to report he weighed in at 21POUNDS!!! Now they are registering it as 300 grams gained from the date of the surgery. At check in pre-surgery he weighed 19.4LBS., But when we left the hospital since James had not had anything to eat times 3days except for a slow 20mls an hour he lost weight and when we weighed him at home after discharged out of curiosity (ONLY PREEMIE PARENTS OWN BABY SCALES) he weighed 18.8lbs. Then took ill times two days bringing his weight down to 18.5lbs. So all in all not only did we gain the so called 300 grams but he put back the weight he had lost too. SO THERE!! Can they give him so more credit please!

Any how we are so thrilled to say the least. Now we have a new goal we are to cut back from the 10 hour continuous night feed to 8 hours and gradually increase him by 5mls over an hour every 3 days to reach 70mls per hour times 8 hours, plus the afternoon nap time feed of 70mls an hour. We are to have him at a goal of 750mls (calories) via tube feeding and the rest by mouth.

So far so good, this week how ever was a rough one. James was gaggy at the beggining of the week and threw up his nap time feed yesterday. But this is the first since the tube placement and he has had a much better day today. So I guess this is to be expected every so often especially since it occured prior to the tube. But at least we know he will get more and all we have to do is hook him up. The cutest thing is he now calls the button and tube his baba. He no longer gets a bottle but maybe once in a while since his surgery. I think he has had three or four, but now when I hook his tube to his button he says baba. I never said to him either that this was replacing the bottle nor did I intend to stop, but I did want to and now it just kind of happened. No weaning no problems YEAH! Also,

James has been showing great interest in his potty chair as well as the big potty, so much so that we have been peeing in it 2 to 3 times a day and tonight he told me he had ca ca so we went to the bathroom took his diaper off dumped the dump in the toilet wiped his butt and sat him on the potty and said this is where you do ca ca and pee pee he then nodded his head got down and flushed and said bye bye ca ca. (We then washed our hands) So I think my New years resolution is to get my boy potty trained. Any tips are greatly appreciated. I also think I will buy some pull ups. I have been telling him that once he starts going in the potty regularly he can get spider man under wear or he can wear underwear like daddy in which he responds YEAH!!!!! I am excited too! He is very smart and I think he is ready, I think they learn from repetitions so if we do it often. I don't know first time mom but here we go and go and go!!!!!

So today was a good day and I thank you lord. Our week was hectic with therapies and doctor appointments. This is our schedule now, Tuesday PT, Wednesday Feeding, Thursday Speech and a visit from our early interventionist, Friday OT this week we threw in a visit to the Surgeon because of recurring granulation and today the GI, But such is life of a premature child. Oh and did I mention working 20 hours a week (@ Night) doing Laundry, Now if I could just clean my house too, I so think MOM's RULE!!!

I tell you though I have learned so much in so many ways and I am starting to understand a little of why god chose me to have a premature baby. I think any way, I have always since high school wanted to be an RN, from a CNA in high school, to an MA and caring for my parents and now my son I think this is his way of pushing me a little harder to achieve. Does not have to be so harsh, but OK already, I get it. So once my life becomes a little more balanced and James is in school and seems to be doing well, I am going back to school to finish what I started.

LIVE, LAUGH, LOVE!
Tracy

What a Boy!

Well my James is still doing great. I can not believe what a difference this feeding tube has made this far. Reflux seems better, no vomiting and he is still eating much better than before the tube???? I don't know what it is, but I will take it. I am amazed I totally thought the worst before and thought things were going to go backwards but so far so good YEAH!!!

The only problem we are dealing with severely is granuloma's he has one where they made the cut to place the button it just will not heal, and we are now on our 2nd granuloma in a week and a half. Last one we went to the surgeon's office and they burned it with the nitrate stick. I have found this wonderful web site with all sorts of tips for feeding tubes and the care. I tell you mom's are so SMART. So I am going to try a few. I also have not been placing the gauze pads around the button thinking that not covering would help it, but apparently from what I have read this is a big mistake so I stocked up on gauze pads and found a few other tricks to the trade, that I will be trying as well. Hopefully I can get this solved for him it seems to be very bothersome and painful. But again he is doing remarkably well.

He also has been speaking so well lately. New words are emerging and he is just so smart. He says the appropriate words at the right time, thank you, please, move and just understanding his world around him. If you ask him where daddy is during the day he will tell you (WORK! and it is so adorable. He also is finally getting into books I have been trying for a long time to get himnterested and now not only is he intersted he will bring you a book and he will say BOOK! I spent the other day with a good friend of mine Kelly and her son Aidan and James was saying their names. My friend made a comment to me that made me feel fantastic, she said she can not get over how well James is doing and how she felt he was quite on target for his age. She is a wonderful mom to a gorgeous boy who is 4 years old. We had a lot of fun with them on Friday and can't wait until our next fun day!

Well that is all for tonight and thanks again for staying tuned! Tracy

A little quick update. James is doing really well with his feeds, we have increased him slowly and he is at 45mls per hour, our goal is 50 to 60mls, depending on his toleration of course. I have yet to incorprate the BOLUS feeds (large amount over short period of time) because James has been eating so well. I tell you I did not see this coming, and the old saying if I would have know this then I would have done it sooner. So 18 days in to tube feeding and all is well. He today ate for lunch a half of a PB&J a whole brownie square some milk and bites of my Panda Express/to include some fried rice bites, a whole piece of Orange Chicken, and a quater of crab puff. Not to mention a handfull of crunchy cheetos a little prior to that plus a little ceral at breakfast, I AM OVER JOYED!!!! The other night he ate a whole half of a GRILLED CHEESE SANDWICH!!!!!

We meet with our GI clinic on 11/29 for weight check and evaluation of feeding/tube feeds to include a 2 day diary of all consummation for James. I will let you know the outcome of that. I have some great pics but I need to go get ready for work so I will post those later.

FYI for other mom's with GTUBE KIDS, I have found a tape that is absolutely phenomenal, it is called MEPITAC and it is used with tubes, it does not pull or irritate your child's skin once so ever, and may be re-used repeatedly, thankful for that because it is PRICEY about 15$ a roll(DONATIONS PLEASE :)! I have found this to be the cheapest so far, but it is so worth not having your child scream, cry and shake when removing the tape. As for James' button site it is healing slowly very slowly, still so very sore for the little guy and tends to be red some days and pink other days, not much drainage and so far no granulation's!

Thanks for reading, Love Tracy.

P.S. In regards to our ordeal at PCH, I have put in a complaint through our insurance company and am still working on my letter to the President of the Hospital for their careless actins of my son's well being (MRSA). Just so they are aware and to get it off my chest........ My letter is taking more time than it should but I want it to be effective and written properly. Any english majors out there or writers????? Thanks

HOME FROM THE HOSPITAL/THANK YOU LORD!!!

My silly boy trying to make the best of it!

Well our stay at the hospital SUCKED!!! Not that I was expecting it to be great, he we go I am going to rant away!

Monday surgery day was a good day only because the surgery was fast and there were no problems, outside of us not starting until 2:30pm instead of 1:30, no biggy they had a kids play area so we hung out there.

After recovery we go to our room, where we had a roommate no problem, until around 7ish when I over heard the mom talking on her phone and telling how her son had MERSA, I freaked, here we are just after surgery with an open wound subjected to a potentially fatal STAPH infection. I immediately after phoning my husband went out to the nurses station where I than began to demand a new room, and how could you room us with a child who has an contiguous infection, yes it is only through contact but HELLO! we have the same nurse. Well they explained to me that there were no rooms available at this time and that the nurse uses all the proper precautions. What ever! I then told them to put us in the hall way of course this was not possible. This child should be in a private room, which apparently they are short on and is saved for TB and children with head trauma for the quietness they require. SO! long story longer, James did not get transferred until 1:30pm the next day, and I never let the nurses open his dressing following surgery, they wanted to but I held my ground and refused until we got in a new room. I mean come on you are already at risk just walking through the door of a hospital for disease and infections, but to willing subject a child to it knowing it is there is wrong and they have not heard the last words from me. Lots of other things went on in that room, but I will leave it at the worst, I think I slept an hour at most.

Tuesday we hooked James up to his first feed although he had thrown up twice prior it was just green bile post anesthesia, but then later he did throw up formula. So off to get an X-ray to check tube placement. Everything was in place so back to the room and onto a new formula. But the old orders read 20mls/hr then to increase by 10 every 4 hours until a max of 50mls, that was before the X-ray. Then the orders changed to 20mls/continuous, after the x-ray in fear James could not tolerate such an increase this early. Well the night nurse read the old orders so at 2:30am or so I can't remember, James threw up not alot but our goal to get discharged was to tolerate feeds. Well that's when the nurse discovered she had read the old orders. GREAT!!!! So after that was settled James did well. He was still not a loud anything by mouth(NPO) so we thought.

Wednesday was a fun day with all the Halloween stuff going on at the hospital, later that night they were serving pizza and showing a movie, so we joined the festivities! Thinking James was still not allowed any food or drink we started sneaking it to him he was starving since he had not been feed in almost three day, and then was slowly fed through the tube, then we get back to the room and I admitted to the nurse that we had fed James at the party, she then said OH! he can eat now!!!! another GREAT. Though no food trays were ever delivered so.....

Thursday I went to the cafeteria with James in tow and ordered breakfast he ate like James, and later that afternoon I called the cafeteria to order him a lunch tray, they showed in there system that James was tube fed only, HELL O! So I stormed out and was not very nice. Well we got James' lunch , which he ate a quarter of mac n cheese and 2 bites of fish sticks/Hence the need for tube, that is our usual eating amount except for our good days it can be a tad more, any how , the nurse came in and checked to see how much he ate, and exclaimed WOW he did good, no you fool I ate the rest of the Mac,(did not want the fish sticks though) then she says to me your not to do that we have to track his intake, What am I a mind reader!!!!!

We could have gone home Wednesday by the GI's stand point but were encouraged by the surgeon to stay for 1 more night to get another round of antibiotics and a full 24 hour feed with no problems, we stayed HMMMMM!! DUMB D DUMB DUMB!

We came home mid afternoon Thursday, But that Thursday morning when I asked about our discharge and was told it was on hold! Great here we go again, so I explained to the nurse that my husband was coming at 1:30pm and we were leaving with or with out discharge papers. So by 11am discharge had been completed, but I could not leave until 1:30pm, this went over like a lead balloon with the nurse and began a battle of the FITS. I no longer could receive nursing help, James was still hooked to a feed which I did, not hard but well you know, I could no longer get pain meds or ANYTHING, nice children's hospital HUH! Way different than the NICU experience and that is why when we had decided to go ahead witht the feeding tube, I had little reservations regarding the hospital, felt great with the team of doctors and well over all was at ease to a degree. Not the case BOO HOO BIG TIME!!

So home now and everything is going great! James is tolerating his feeds well, He is still very very sore and we have a hard time caring for his button and placing the feed tube to him it is a two person job right now but I know that will get better. Main thing is he is doing great and outside of our hospital nightmare, no regrets. James is eating food by mouth well also, so much more than I thought he would have before the surgery I anticipated not much eating but not the case so far so good! I leave you with some pics from our stay.

We bought this wagon for James yesterday they had one at the hospital which he really enjoyed!!

RIBIT, A volenteer dressed for halloween!

and some more......

James dressed as the cutest cowboy I have ever seen. They handed out costumes donated from a local store. THE END!!!