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