Okay I am going to freak out soon!! Okay really I do not like to focus on the negative too much and like to be more optimistic, but oh my gosh lately life is hitting me with a ton of bricks. We are on a rocky road to say the least. Sorry for the long ramble. I am exhausted and frustrated and have had an hour sleep.
Blyss picked up bad cold sometime early this week. (Probably when the girl in her gym class coughed on her as her mother sat beside her and watched. Ugh that's a whole other story) So we have been trying to keep Blyss our 3 year old away from her favorite brother. She luckily does not have H1N1 or anything like that and seems to be weathering the storm with a little cough and some congestion. Julian and I have been so proud of our efforts tom keep the cold from Wysdom. Then just as Blyss starts to feel better, guess what?
Well Wysdom didn't catch the cold but is struggling with other issues. Yesterday
he was fine in the day. I fed him a bowl of food and he ate really well. Around his 4pm feed he started to spit up and choke a little. This is somewhat his normal as he has reflux. He kept coughing and crying so we stopped the feed and he threw up the rest. Usually we just stop and move onto the next feed. Well this happened for the next 3 feeds. So that means that he did not have any food from 4 pm really on. My husband did the 12am feed and he couldn't keep that down either. I went to bed at 11:30 and to up at 12:00am. I then sat with Wysdom while he screamed his head off for the rest of the night. Every time I moved him or layed him down he cried and went into a fit where he became so upset and full of gas. At 2:00am we started to really panic and called our on call nursing company. We spoke to a nurse and mention our concerns about him not being able to tolerate any food and also when we tried it sounded like he was aspirating which does not really happen for him. She suggested we do no food for the night and that she would show up at 8:00am. She also suggested to use a suppository( well that didn't go well or work) To be honest we don't know what the #### was or is still going on. He is pushing like he is constipated, crying hysterically and throwing up non stop. I stayed up all night with him and then slept for an hour before the nurse came.
When our nurse came his heart rate was up in the 180's and his 02 sats were low. He cried like I have never seen him cry. Last week was nothing to this. He started to get so overworked and couldn't catch his breath. She suggested that we alternate between Tylenol and Advil and that if we could not get any food to stay down to go into the hospital!!!!!!!!!!!! So needless to say that I was crying and freaking out...we just got outta there. Meanwhile Blyss is freaking out to because her brother is screaming. So luckily we got half a feed into him that took about 3 hours to do. He didn't poop, but he has soooo much gas. We have heard that venting the tube will help but it seems to be like a cycle. He cries, we vent, he cries we vent more..... I am so confused as to what it is. While all of this is going on we called to hospitals and talked to both of the on call doctors and they suggested that we continue to do what we are doing.
Then..as we are finishing the feed the feeding tube attachment from the pump pops off on it's own I guess from gas. All the milk pours onto the floor and in the middle of the milk is some foreign object. Not to big,red or brown maybe a sticker maybe a piece of plastic or something. Shortly after this Wysdom stops his cat like clearing of his throat. Julian are not sure if the g tube has broken inside or if he ate something he shouldn't have but we are happy he is calm. Unfortunately all day he has continued to be fussy and require venting and drugs.
So that is where we are at right now. We are runnin his feeds over 2 hours and he is having trouble keepin that down. Please send us good thoughts and pray that we get over this and that my little man can just be himself and not in pain. Any G TUBE Mama's have any tips on venting or why this is occurring? Any Mama's that deal with constipation in their little ones, can you shed some light? Or could this be teething too? Or everything at once. We are so lost right now.... Any help would be great. I am really starting to wonder what the heck is going on lately with our luck??? So right now we are just waiting to see how each feed goes and to see if we need to bring him into the hospital. Ugh!!!!!!!!!!! I so don't want to go back, but I don't know what else to do for him?! Next week is packed with appointments for his eyes, his hearing, his feeding team and his physio and I am just feeling so overwhelmed with him being sick. I just want my happy little man back.