Another Bump in the Road

So Noah was doing ok until he got some sort of flu bug. We had still been having trouble with his feeds but on Friday night he started retching more often and had very loose stools. And he wasnt keeping anything down. Saturday morning he retched again and had a temp. of 100.8 and has been running a small temp since and not tolerating anything but pedialyte. Last night he did very well with the pedialyte and this morning I switched back to Pediasure because his fever had dropped and he was drinking the pedialyte very well. As soon as he drank all of the second pediasure he started retching. Poor little guy. Im wondering if he could be having a reaction to the pediasure considering when he was younger he was allergic to both milk and soy and pediasure has both in it. I keep bringing this up to the doctors but they dont believe me. Im going to keep fighting.

We put Noah in his halloween costume the other night and took pictures. He looks so adorable in his costume. He is my favorite little Giraffe! And Im happy that we are home for halloween this year.

Saturday I also got wonderful news in the mail. I opened a letter from the Department of Health and Human Services and it said that my case was closed and that I was a wonderful mother and I had nothing to worry about! Phew!!! Life is going to start getting better I hope now. I cannot wait for this term of school to be done. This class that Im taking is a lot of work it feels like I have had projects for each class for 3 weeks now. It probally has to do with the fact that I missed so much school in the beginning of the term...but I dont think that is completely it because I have heard others complaining as well. I do enjoy the project and it gets me excited to have my own daycare in the future but its just my life is so stressful right now. But hopefully like I said once this flu gets cleared up we are on the right path again.

Well we love you all. And hope your lives are filled with good health and happiness!

Getting Back to normal

So when it rains it pours but things seem to be settling back down. Noah seems to be getting better and better. We are still struggling a little with his feeds but he is doing much better with them. Sometimes we cannot seem to give him enough and other times he doesnt want to finish them and when we put what he doesnt drink down his tube he retches until we take that little bit out. I think on top of everything else he is getting his molars in and isnt happy about that. Who would be right?
But it is so nice to see him playing on the floor and he has actually figured out how to make a couple of his toys play music. Its cute to watch him on the floor now because he actually pushes himself around in a circle on his back. One minute he will be possitioned one way and the next he is upside down from where I originally left him. He has decided that he is only going to roll over when he is on my bed or any bed but he is not going to do it on the floor. But he has been trying to roll more often. He is also starting to grab things more often. I can even get him to hold some of his rattles now for a whole minute. But its progress.
Venting his Gtube to get the gas bubbles out has become an adventure because he moves around way to much now...you have to watch his legs and arms while trying to also make sure the tube isnt filling to full....sometimes he grabs the tube and tries to move it all around. He wont grab his toys for long but he gets a hold of that extention and he isnt going to let it go. HAHAHA!!!

Besides having a stressful couple of weeks Im holding up as best as I can. Still going to school and doing my best. Im loaded with homework right now because I have a lot to make up from missing the time while I was in the hospital. But I changed my major to Early Childhood Development and want to start a daycare or become a teacher or something when I get done. I would really like to start out with my own daycare because then I could bring Noah to work with me and mom could go to work using her degree as well. But we will see. I still am working at CLYNK and it is an awesome company and they are so understanding with all my time off. Been there a year this month. I couldnt ask for better people to work for.
I should be able to update you all more often now for it is easier for me to get online now. Dad got wireless internet and he fixed my laptop so I am up and running and online now.
But anyway my little boy is trying to get my attention and he wants out of his bouncer for a while. We all love you.

More of a mess...

So Noah was released from the hospital Monday afternoon. We didnt really get our answers to why he is like this but he does seem to be better. thank goodness... Monday was hell. The hospital came in and told us that he had lost a total of 1 1/2 pounds since we were home and that we were feeding him the wrong amount. Although what we were feeding him was the directions that we left the hospital with the last time, the amount that was given to us was wrong but it was my fault. The doctor came in and told us he had looked at the last discharge papers and what I was telling him was right BUT..... they decided to call DHHS on me and report that I was starving my son on purpose....I was not giving him the nutrients he needs and that was the reason that he is still failure to thrive.
I had also suggested that we do the Modified Barium Swallow test done again. This test was the test that showed that he aspirates the last time we had it done. I was thinking that if we had this done and it showed he had improved that we could stop using rice cereal in every bottle and this could help with the constipation issues. The minute I suggested this test the doctor was down my throat that if he was aspirating at all WE COULD NO LONGER FEED BY BOTTLE. Well I decided that I was fighting enough with all his other problems and they needed to find the reasons for why he wasnt comfortable so after fighting and fighting that day I refused the test. They tried to sideblind me by saying I needed to have the test I couldnt refuse...finally after I told them I was his mother and I had the right to refuse any test...they decided to try to sideblind me by telling me that they wanted to do the test to check his recent surgery. In which they can check by doing a regular barium test through his Gtube by which I told them they could do that test. But after telling them that they had no right to call DHHS on me and if they did I would contact my lawyer they decided that this meant we needed to be discharged.
I tried to ask the doctor if she had any recommendations for a new pediatrician because after Fridays visit he was no longer going to see Dr. Patraitis and she turned around and said "I recommend Dr. Patraitis." After telling her again he was not going back to her and asking her if she could recommend someone else she replyed with "Look it up in the phone book."
So on Wednesday DHHS showed up at our door and said the report was sent saying that I dont give my son the right nutrition and that I refused the barium swallow which was a harm to him. After explaining to the DHHS worker that he has had that test done already and we have been told that although it wasnt recommended we could feed by bottle as long as it was thickened and that my son needs his bottle. He is 17months old and has been bottle fed since birth and will not settle without the bottle. She did agree that I was right about not being able to take a bottle away from a baby who has had it since birth. At the end of her visit I was told over and over again that I shouldnt worry when she left and that she didnt see any problems. But she had to continue with the investigation of the names I released to her and the doctors but in all hopes this should be taken care of by the end of next week. I hope so. It has been a very stressful week and my stomach is turning so much that I cannot eat myself. The good news is I lost 3 lbs last week but it isnt healthy for me to be this stressed. SO keep praying everyone and I will keep you updated as often as I can.
Noah is feeling better and is almost back to himself...we are still having some issues with his constipation and fussiness but not nearly as bad as last week.
Hopefully things will start looking up and I need to find doctors that will actually listen and want to help us and not find blame that doesnt exist.

Road is getting less bumpier

So last night was better....finally we both got some sleep. Noah slept till about 6am this morning uninterrupted. Which was so reviving for myself and himself. At 6 am he was having a crying spell but I was able to console him and then him and I fell back to sleep in my bed till about 8:30am when the doctors came in.
Today he seems to be himself. We have had a few crying spells but nothing like this week and he is full of babbling and sticking out his tongue, and full of those smiles that I cannot get enough of. He took a 2 hrs nap this afternoon, in which I joined him with. And this is a huge improvement because we were lucky to get him to sleep for 20 minutes this week.
Although the doctors are still unsure of why he is this way. They think it could have been a viral infections that started it and after being up for so long his body was so sleep deprived it couldnt figure out what to do with itself. I'm not sure that is completely what happened....I do think it has a lot to do with his constipation issues and now that we have got him so he isnt so backed up things are improving....but we need to find out how to fix it so it wont happen again. I told them this morning that I want to talk with his GI Doctor before we go home because it was important to get him so he is pooping before we go home and this starts up again.
Im also looking into trying to get them to redo his feeding study that told us he was aspirating to bad to drink from a bottle. The speech therapist said the last time we were here that she thinks it would be a good idea to redo it because if he was aspirating as bad as it looked the last time we would have more problems with phemonia, etc. She said growing can change things and it would be something we should get done again. And if we have it done and it looks like it has improved then we could stop putting rice cereal in his bottles and this could improve his constipation.
Well at least my little boy is feeling better and we are both getting some sleep now.
They have me feeding 70mls into him by bottle today. And the first bottle he only did 45mls but a half hour before we had just taking him off the pump (20mls an hr) and the second bottle he had the full 70 mls. Now its time to go feed him again.

Back Again

So Noah did well out of the hospital for 6 days. He was so happy and moving all around. He was better than I have seen him in a long time, and then our excitment went down hill. Since Monday he has been inconsolable night and day. We have tried everything and he was just in pain. Wednesday night we took him to the Maine Med ER because he was crying all day and night time seemed to get worse....well until we got here that is he fell asleep on the way here and stayed asleep the whole time. KIDS! He slept until we got in the driveway and again he started screaming. Thursday we took him to the surgeons office and they said his incision looked good but found that he was EXTREMELY constipated. They gave him an enema and that seemed to help until 11 pm that night and then he was inconsolable again.....falling asleep at 10pm and waking at 11pm and crying nonstop until 6am. I tried the swing, the vibrating seat, the rocking chair, mommy's bed NOTHING helped.
So Friday I took him to his pediatrician and she was no help. She told me that I needed extra services in the house because I couldnt handle my son by myself anymore.... she tried to tell me he was crying because of his ear infection (although he has had many some double ear infections and never acted this way) and she told me that it was his neurological problems causing him to be up screaming all night and I needed the neurological doctor to prescribe me a sedative for him.... not happy.... looking for a new pediatrician......
Took him to ER last night because everytime I feed him the pain seems to get worse and whether I feed through the G tube or the mouth it doesnt matter he doesnt want anything to do with drinking. They did tests, chest xrays, looked in his ears -the same one the pediatrician looked in and said was infected- but they said his ears were beautidful.... He was dehydrated and they hooked him up to an IV. Then at 3 am they came in and said...ok we want to give him 100cc more and then you can go home....ummm.... Why hydrate him with fluids, send us home when he isnt drinking bottles, hes in pain....just so monday we can come back because he is dehyrated again because he isnt eatting..... They decided to get the pediatric doctors in the hospital involved....go figure.....
After fighting doctors for 5 days and 7 hrs last night into this morning...they finally agreed that I knew my son and he was in fact in pain and maybe they should admit him and try to come to conclusions to why he isnt eatting.... and why his is not himself.....
So 60 hrs of no sleep, fighting doctors for 5 days, we are again admitted to the hospital to get answers.... not that I want to be back but I dont want to see my son in anymore pain. This last week has been hell for him, for me, and for my family. We dont want him to be suffering in pain any longer. So I will sit here until we get the answers we need.
They have him hooked to the pump right now and are doing a small amount continuously (20mls/hr). Tomorrow they are going to start increasing it slowly to find out when he cannot tolerate it anymore and then we are going to work out a schedule. They dont know why he is in pain they are hoping to get the GI Doctor in to see him, the nutritionist in to see him, and they are also wondering if maybe he just has a viral infection. But we are going to get answers this time.
Keep you all updated.
Love to you all
Beth & Noah