Well we are still in hospital. Last week went pretty slow with not much happening around here. Beginning to become a regular thing. The good news is that we got a new chest team that started on Wednesday and I really really like the lady that I am dealing with. She LISTENS to me and FEELS my concerns. These are definitely hard to come by around here so this is great. She had asked me why an echo hasn’t been done yet and I explained that the last team said that it wasn’t cardiac related. She then went on to tell me that she is concerned about heart failure because of all of the low desats he has been having and with what is going on. I agreed with her that if she felt it was necessary to do the echo then I was all for it. She put in the order.
Thursday comes around and I was speaking to the complex care team. I asked about the echo and they told me that they had talked to chest and that the chest team didn’t realize that A had just had one done in November that was fine. He then told me that they were satisfied with the results therefore would not be wanting a new one.
Thursday IGT also came in to speak with me about the botox that they wanted Ashton to have. It was then when I found out that there are many risks with the botox. After discussing it thoroughly with the doctor I was comfortable with going ahead and signed the forms for it to be done on Friday morning at 9am.
Well, later that day I was not feeling so great about it. My gut was just not right with the idea. And when I have that feeling I know that I need to listen to it! So at 4pm I talked to his NP and told her that I was cancelling it. Well to make a long story short, they were not too impressed. But guess what? I don’t give two shits! I then went on to tell her that I wanted to try him on the med first that does the same thing as botox. This was the med that they told me about a week ago that they didn’t want to try because it can thicken secretions. Well I figured after asking many moms about it to give it a shot. Who knows, it could work. So he was started on that at a low dose and we will probably have to increase it tomorrow as I don’t notice any change yet.
Friday. A HORRIBLE day! Chest doctor was here and asked why the echo had not been ordered. I said that I talked to complex yesterday and they told me that you were satisfied because of A’s echo in November. Boy was she angry!! She told me that she never said that and has placed it in the notes three times that she wants one done!!! She then opened to the last note she had wrote and asked if he knew how to read?! LOL I told her that she needed to talk to him because I was tired of always getting different answers from different doctors. Kind of crazy if you ask me! Things like this just should NOT be happening!!!!!
Then around 2pm I went to lay him down for his nap. Well he was NOT doing well. He started into one of his fits and it lasted almost an hour. Thank goodness that his favorite nurse was on and she is so wonderful with him. I was getting VERY emotional. I am just so tired of seeing him so blue so often. I left to go to the washroom quick and when I was coming back I saw his NP. I told her that I wanted a probe done because I think he is still having issues with reflux and that I was tired of them sitting around not doing anything when A is obviously struggling! She said we could talk as a team on Monday to see if the probe was necessary. I told her that it was because either way I wanted to know IF he was refluxing still. I mean it is obvious that the fundo is working but he has not had a g tube in two years so it IS possible that he just cannot handle g tube feeds.
I went home on Friday night because Aunt K and Grandma S were coming down so that we could go and get Kelly’s dress for the wedding on Saturday. I really did not want to leave but felt comfortable knowing he was well taken care of with Jordana.
Saturday went well for dress shopping and now just two left to get. We drove down here on Saturday in the nasty nasty snow but luckily we got here before the worst of it came.
Today is A’s 8 month hearing age!!! And to top this post off with the best news yet…..the complex care team is switching over tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am ecstatic! Can you tell? LOL
Oh where to begin. I am so frustrated. The complex care docs were in this morning and from the way they are speaking they are wanting to get A home. Now this is a great thing but I want answers before this happens. He is being weaned more from his morphine today and will be off it totally by Thursday or Friday. They also ordered that is not on a monitor during the day but only during sleep. I think much of this has to do with the fact that the docs do not want me watching the numbers. I have issues with how low his oxygen has been going for the past few days.
On a good note he has not had any of those crying fits today, last one was last night at 7pm. There goes my theory of it being hunger as his feed just ended at 7pm.
Blue spells still continue. The doctor says that he believes it is breath holding. The nurses on the floor do not understand as they are the SAME as before but worse. I am beyond confused as to why they are not concerned about them now.
Oxygen was discontinued at noon today and when he went down for a nap at 1pm he was satting between 78-84. With blow by he is 99. Why does he suddenly require oxygen while sleeping?! When we came in hospital he was not on it and his average sat while sleeping was 95.
To top everything off I am starting to get sick I think. I have a sore throat and feel sick to my stomach. I am just not in the mood.
Still waiting to see the chest team now as we have dealt with the reflux. (They wouldn’t do the sleep study or see him in the beginning until his reflux was dealt with.) Hopefully they have more convincing info for me then telling me that A is holding his breath.