Seeing blue

The last 2 days have been focused on swallowing.  This is something we all do without thinking about it but for Rob right now it is very different.  For the first week the doctors didn't want him to move his tongue or put anything in his mouth.  Once they are happy that the flap is attached and healing well they want him to move his tongue a lot and work on swallowing.  We have spent a good amount of time with Melissa, his Speech Language Pathologist, the last few days.  She spent some time watching him try to eat juice, water, apple sauce, jello, thickened fluids, etc.  Yesterday she made Rob drink some water that was tinted blue to see if it was coming out of his trach.  Although there wasn't a lot, there was a trace amount which means it is going down the wrong tube.  She ordered a pureed, thickened dinner for him and encouraged him to try it.  A few hours after dinner Rob had a major coughing attack and this is most likely cause by the food going down the wrong tube.  The danger with this is aspiration and getting pneumonia and although Rob is young and moving around it is not worth the risk.  Today Rob did a swallow study which is basically a series of xrays while he swallows so they can see exactly where it is going.  I was able to be right in the room and Melissa explained to me what was going on.  She met us back in Rob's room after the test and went over their findings.  At this point Rob's swallowing is not quite right and so he will only be given thickened fluids to help him practice the movement of eating and swallowing.  For now Rob's calories and protein will be from the tube feeds.  This also means that he will be sent home with his tube feed.  We knew this was a possibility but given how well he is doing we assumed he would be fine.  I think sometimes it is harder when you have been doing really well with recovery and then something goes wrong.  Rob has a hard time with the fact that he can't swallow and eat yet.  I have been reminding him that he is doing amazing and his body is trying to get better in many different places so it may not all work perfectly right away. I think that after being in the hospital this long he will do much better once he is home. 


The goal right now is to have him home by mid week.  We were told he would spend about 2 weeks in hospital and that is about right.  Before he can come home he will need to have his trach removed.  Different doctors do this part differently so we are not sure what the plan is.  Dr Nason will be on holidays for the next week so someone else will be seeing Rob  and we are not sure how he does things.  Hopefully it is gone but the end of the weekend. 
We will also need to meet with the home feeding program to get trained on tube feeding. Both Rob and I need to "pass' so they feel confident that we will do things right when we get home.  The nurses will start training us too so that we get the hang of it while we are still in hospital.  Today I got to flush his line and give him some meds and the nurse said I did well.  Hopefully that means we will catch on quickly and get home.  My work at the nursing home has been very helpful with all of this.  We don't do tube feeds but I have an understanding of swallowing and thickened fluids which is going to be useful. 
Isaac is really missing having us around.  He is being well cared for and doing lots of fun things but even as a 3 1/2 year old he knows that he should be home with mommy and daddy.  It has been a long 11 days so far and I look forward to having us all under one roof again.
Tomorrow I go back to work.  My work has been great and has allowed me time off when I needed it but it's my Saturday to work and there is really no reason I can't go.  I am sure it will be very overwhelming and I will be distracted and thinking about Rob and Isaac the whole time however I do love my job and I look forward to seeing my "old" friends. 
Thank you again for all the prayers and support.  Our journey is just beginning so please keep praying for all of us!
Love Karen