The Schindewolf Squad: Tuckey

My poor sweet tuckey has had a rough couple of days. It all started last week. Tucker isn't a good eater, obviously, but he is a good and consistent drinker of his milk in his cup. Last week I noticed when he asked for his milk and I gave it to him, he would take a sip, cry and hand it back to me. He does this sometimes when he wants fresh milk (meaning cold), so I will usually top it off or get him a new cup altogether. This past week, even after I refreshed his milk he would still scream and cry. Mostly because he wanted it but all of a sudden didn't like it for some reason. We tried everything! New cups, different milk, etc. nothing worked. He would scream like he was in pain and uncomfortable most of the day. Needless to say, these past days have been some of the most trying days as a mom. A screamy fussy baby and a crazy 3 year old to boot. I knew something was going on. I first thought what might be different. And for one there is a calorie supplement we add to his milk that is supposed to be flavorless but that I think thickens his milk a bit. We ran out recently and when I went to the pharmacy to pick it up, they told me it had been discontinued and that they could no loner get it! Tucker is really particular on flavors and textures so this could very well be part of the problem. I found some online, ordered it and had it overnighted! It will arrive this morning and we shall see. My other theory was that the inflammation they found with no explanation could be due in part to milk. Maybe it is inflamed again and drinking milk only hurts it more?? I decided to test out this theory and get some almond milk. So tuck has been drinking almond milk. He seems to take it ok, but still not back to where he was. I spent most of the day on the phone tuesday trying to get a hold of his specialists to see what they thought I should do. Again, a trying day with two kids:/ I also decided to take tucker to our pediatrician to get his opinion. Our doctor has been amazing! He has been trying to help all along, calling to check in, and been super supportive along with all the staff at the office:) I am pretty much on a first name basis with everyone there, mostly because we are there all the time;) we are so blessed with such a great staff!! Anyways, we went to his office and he agreed there was something going on. He prescribed us a steroid to help with inflammation if that is indeed what it is. If not, he said it wouldn't hurt. So 70$ later we have the steroid. Only tried it once so we will see. It will at least hold us over until we see our GI again in two weeks.

I also ended up having to drive to the medical center on Tuesday as well. After Tucker's surgery they put on a special type of bandage and only instructed us to clean around it. We are due to go back to our surgeon in two weeks (4 weeks from the surgery day) to get his "g-button" put on, until then we weren't supposed to go in unless something came up. Well, I also noticed that his wound has been leaking a lot. A lite leakage is normal. Carl and i also noticed that his bandage was really nasty and were wondering why they wouldn't change it. So I called the surgical nurse to check and see. She asked me if we had been changing the bandage once a week (it has been two weeks) and I told her no because no one told us to and didn't give us any supplies. She apologized and told us they were supposed to do just that. I was furious. So again she apologized but told me we would have to drive into the main campus to have her help me and get supplies. So after I finished at the pediatrician, I headed home dropped Tripp off with aunt janelle and headed into the med center. My mom came with me since Carl was in a meeting. Thank God she did because it took all of us to hold my poor baby down while she changed the bandage and scrubbed around the site. She also gave us supplies which would have been helpful two weeks ago, but oh well. Anyways, Tuesday ended up being a crazy day.

After speaking with the people from the specialists offices we still have no more direction. Mainly because the drs have nurses and fellows call who have no idea what's going on and can't help much. It is super frustrating. I have decided to wait the couple weeks until I go into our next appointments to actually speak with the doctors themselves. Tucker's story is so complicated, it's hard to get new people up to speed. So more waiting. In the mean time I am doing what I can to help and our pediatrician is so awesome too! Please pray we get more direction and answers soon!

Ok, enough rambling for now. I will update with more info soon. I feel a little better today because my awesome mom spent the night last night and got up with tucker so I could sleep a full night! Thanks mom, I feel like a new woman;) Carl went on a fishing trip for the night and will be back tonight, thank goodness!

Thank you for stopping by and for your thoughts and prayers, we love you all!!!