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!!!

This and That and BIG DAY MONDAY!

Well today we took James to Encanto park where they have rides and paddle boats for some fun. I forgot about this park and how much fun it is. The paddle boats were closed do to a private party but James got to ride on some other fun stuff, cars, tea cup twirl and we tried to put him in these bumper boats but he cried mainly because he wanted to get in the water instead of the boat, not to mention the kid operating the boats was a wee bit scary to James with a crazy mo hawk thing and piercings galore so he was a bit apprehensive to begin with. But I am in a way better about it, because the boats did not have belts in them and my little bugger loves water so much he may have jumped in. We waited in line a while though, so I was a little bumbed but quickly recovered, god works in mysterous ways so it probably was going to be a catastrophe. We had lunch then came home for naps, Oh how I love naps. That is the only thing I miss the most (outside of James of course) about having a job is my naps.

Tonight we might go to boo at the zoo and have James dress up in is Halloween costume, he is going to be spider man and he loves Halloween all the scary stuff make shim laugh in fact we decorated outside a bit and he even has been in his way saying Halloween, and I have been working on the trick or treat, of course I have to be silly and say trick or treat smell my feet give me something good to eat every time I say it and he just howls with laughter which makes you do it even more, because his laugh is so contagious.

Monday is our big day, feeding tube day. All though I am a bundle of nerves, as is my husband we are ready. I have finally got a phenomenal feeding therapist and we are switching OT's the beginning of November who is phenomenal, as well I think the feeding tube will enable us to be more relaxed with James' feeding issues and hopefully give us the time we need to conquer them. We will no longer have to stress as much because he did not eat enough and is not gaining weight. I can not wait for the weight to gain!!!! With that being said I of course am teary eyed. I have spoken with a lot of mom's who's children are now off the feeding tube but were one day in my shoes and have nothing but positive stories with great outcome for there children . So that helps ease the tension of the decision. But I really think this is the best thing for James and us at this time in our life's. So wish us well and I will post after surgery.

I will leave you with some photos to enjoy, just ignore me I am the most un photo genic person on the planet.

Thanks for visiting and all your support. I recently did a magazine article for parents in the NICU life and one of my comments mentioned was blogging and how mush support you can get and how therapeutic it can be, so thanks for that.

Tracy

You don't know LOVE until you have a child!

How many agree? I can not believe how much I love my son. It is just unbelievable how he fills my heart, sometimes it aches with love, sometimes it really hurts with love or angers with love but it never stops smiling with love. He is so amazing in so many ways and everyday surprises me with new amazement. I love being able to be home with him, I love how he still smells like baby and how when I hug him he squeezes me back tight and pats my back. Or how when he kisses me he follows with MMMWA! I love how he repeats or tries to repeat everything I say(got to be careful) I sometimes find myself spelling words because even though he may not say them yet he knows what they mean. I love how he tries to do everything I do, especially when I am cleaning he likes to grab wipes and wipe things or dust, and vacuuming the kids cries when I stop. I love going into a room after he has been playing and finding all the creative things his has done, like throwing my hair clips in the trash or throwing a shoe in the sink. I love hearing the pitter patter of his feet coming down the hall way just when I thought I had escaped to go to the bathroom by myself :) I love how he remembers things that happened days or even weeks ago,or things that are different from before. I love how I can show him something once and he does or tries to do it until he has successfully done it on his own(sometimes). I love his laugh and how sometimes he covers his mouth when he laughs I even love his temper and whining because he is so like me. I love to watch him sleep or play when he does not know I am there, I love it when he dances and tries to sing a song. I love going for walks and how he points and squeels just over leaves blowing down the street, I love how he now says mama water or mama rocko (our dog) And I espeacially love in the mornings when he wakes how happy he is and how he hands me his blanket. I love how sweet he is and well, I guess I love being his mom. I now know how much my parents loved me!!!

BIG FOOT

So I feel horrible, Since James does not grow much in the weight department and his height has been the same for a while, I neglect to think about his feet growing, DUH!! The other night we went for a walk and he had on his sandals every so often he would stop and sit down and grab his foot and say OWE, (one of his new words) I would check for rocks but nothing. So we continued on and he continued to do this every so often, finally I just took his shoes off.

So Monday I decided to go to the shoe store and get his foot measured, are you ready for this he was a size 6, I repeatedly had the sales girl measure them again, because I just could not believe this. Sure enough he is a size 6, his sandals were (Oh I am so ashamed) a size 4 and his sneakers a size 5, I always buy sneakers a little bigger. His sandals did not look to be 2 sizes to Small on his foot although his heel did hang over the back a little. So we bought some new shoes in a SIZE 6! I guess all his calories are going to his feet, oh and his head those seem to be the only thing with steady growth. So I guess he will be this brainy smart child with big feet. (Ha Ha)

Tracy

Surgeon Appt./Feeding Tube Surgery Scheduled!!!

So we saw the surgeon yesterday, which went quite well, outside of us being there for 3 hours and me being late to work. Our appt. was for 12:30 and we did not see the doctor until 1:30pm, he met with us for a while and then we had to see the RN for feeding tube education, which was confusing because for some reason she had to show us all of the different feeding buttons even though those were not the kind we were getting. Then off to the surgery scheduling desk to schedule. I was hoping for sooner than later, but they had nothing until 10/29/2007, so there goes our Halloween which is one of my favorites. However I am going to take James to Boo at the Zoo the weekend before Halloween and still get him a costume.

So back to the feeding tube, my husband and I left of course feeling over whelmed to say the least. The doctor had asked us if we felt we had exhausted all efforts of feeding with James prior to this decision and we felt that we have with the exception of going to another state which just is not feasible right now. He agreed that we lack feeding therapist and tend not to have the most intensive therapies available, when comparing to other states. Which is so puzzling because people come from all over for care at Good Samaritan and Phoenix Children's hospitals. He did say he is working on a program. We will be getting the Bard Peg feeding tube. The scary thing to me is what we learned about the care at home, (ie), if the PEG comes out within 2 hours the opening could close, if the Button moves around could make opening larger and the most concerning was how sore she said he would be for the first week or two and having to insert the tube will be discomforting, I wanted to cry. In the back of my head I question are we doing the right thing, but I think we are James has only gained 1lb in 9 months.

Our surgeon shared with us that he had a preemie as well 13 years ago, 26 weeker, who though was slow to gain he gained more than a 1lb in 9 months. He shared some of his son's photos with us and said no one understands the life of preemie parenting unless they are the parents to a preemie. Very comforting to no he has not only hands like god for surgeries but knows the life that goes along with caring for our special miracles. He was so personable and comforting that I have great confidence in him performing surgery on James, again. He is the Surgeon that performed James' PDA and bilateral hernia repair as well as circ. way back in the early days of NICU living. He also went on to explain all the things that could happen to James later if we did not speed up his weight and growth. So I am ready to get started.

Thank you for all your responses to my last post it is helpful to know that I am not alone.

Tracy

Our second opinion and our next journey

Well it is official, my son James is in need of a FEEDING TUBE. We had our 2nd opinion on Wednesday to confirm the need for the feeding tube. James is just not making progress with gaining weight. Although we do not see any significant problems with development thus far if we do not go forward with this, at the age of 5 or 10years we could have major issues with learning and growth and by then it will be to late.


I was pretty impressed with this new Doctor, and am going to switch care to her, she is a GI through our children's hospital. So we meet with the surgeon 9/26 who has also done James' surgeries in the past while he was in the NICU so some comfort there. The past two days have been pretty tough for me, but the more I think about it and the benefit to James, the better I understand the importance. So I will let you all know as I do with what is going on. Any words of encouragement are greatly needed. I guess it is good we do it now since he already does have the oral eating down just does not eat enough. Any how, they are also going to set us up for intense feeding therapy through children's hospital, after the surgery to help us try and progress more with his oral feeds. He does not have any severe oral aversions, just with his reflux and dysphagia which causes him to only eat the minimum.


Now on to some fun stuff. Today we painted Oh what fun we had. Here are also some pictures from last Sunday FOOTBALL!! ANYONE!!!

Yes my husband is a huge STEELERS fan so much so one of our spare bedrooms is painted with black and gold steeler colors. Pretty oh so pretty!

Talk to you soon.

Where do I begin

Let me start by saying how excited and relaxed the past week and a half have been. Since James has been on his new regimen of medicines he has been eating well, and I think actually able to enjoy it too. This morning he had ice cream with ovaltine and after every bite he actually said MMMMMMMMMMM and was kicking his feet with excitement.


We are still on the Reglan, we switched to Prevacid twice a day AM and Pm we have added Zantac twice a day and give him Mylanta in between all of that. So we are constantly giving him something to hopefully keep his reflux at bay and let him eat, enjoy and put on some weight. I don't want to jinx it, but I want to jump and kick my heels. Every night he has been getting fudgesicles, popsicles or ice cream and eating the whole thing. Not to mention eating his food and actually chewing and swollowing instead of chewing a little and spitting out. He has even been eating some granola and blue berries. My husbands says lets think outside the box and give him lots of different things everyday.

My husband is doing awesome with him and was the one to start giving him the Mylanta after speaking it over with our GI. He is so great with James and helps me out tremendously. I am very lucky to have him.

Yesterday I had a great time with my girlfriend Caroline who came out for a visit from California. I went to high school with her and lost touch after 2003. So I met her and her mom for lunch, Pasta and Wine MMMMMMMM, I was kicking my legs too. Then her mom left and Caroline and I did some shopping and got pedicures. Oh how I needed that. Although the lady doing the pedicure nicked my toe, Ouch! Then we came back to my house for her to meet James.

James had a good dinner and

What a great day, I wish I could freeze frame and make the day longer.

Love Tracy