Another appt, another diagnosis

Yesterday, we had an appt with Dr P who is the pulmonary doctor.  We started going to him because Jacob was having some shortness of breath and he was having some major dips in his oxygen sats.  So our pediatrician sent us to see Dr P.  When we first went to him, he said that he was shocked at how well Jacob was doing when it comes to his breathing.  He said that he has Jacob on his watch list and any time we get admitted for anything breathing related, I need to call him ASAP!  Well after listening to what has been going on, he wanted a sleep study done.  We got it done and went back to his office for the results.  He said there wasn't much on there and he was surprised that it wasn't worse.  Well that is...until our last appt.  He looked at the sleep study again and totally missed something the last time.  They put this little part in his nose and it measures how much he is breathing and how much air is getting through.  Apparently, not much is getting through his nose.  So she said that it could very well be something called upper airway resistance syndrome.  He read that and said...ah ha!  The missing piece of the puzzle.  So he said he wanted a cat scan done of his sinuses.  I remembered that about a year ago Jacob got a MRI of his brain and I remember that it said something about his sinuses in the report.  And so I told him that I am pretty sure he can look at the MRI and see what he needed.  So off he went to look at the MRI and he said...yep, exactly what I was looking for!  He called me over and showed me what was going on.  In a normal persons sinus cavity, your sinuses are straight.  In Jacobs, the left one is straight but the right one curves.  So its blocking most of the air coming through.  Upper Airway Resistance Syndrome  is.. During sleep the muscles of the airway become relaxed. The relaxation of these muscles in turn reduces the diameter of the airway. Typically, the airway of a person with UARS is already restricted or reduced in size, and this natural relaxation reduces the airway further. Therefore, breathing becomes labored. It can be likened to breathing through a straw.  And to top it all off, Jacob always has lots of sinus drainage.  So that's even more blocking his airway.  

So what does that mean for Jacob?  Well, he is now going to be on oxygen at night to help him breathe better.  He is also going to be on hydroxyzine and hopefully that will help his allergies a little bit.  We are also going to start a nasal spray and hopefully that helps as well.

Hospital visit and surgeries!

Since last update, we were able to schedule and get the port placement. We were admitted the day before so that Jacob could get the fluids he needed. And then the next afternoon we were supposed to be wheeled down to surgery and get it placed. Well we woke up around 8 am to our nurse saying...umm so apparently the doctor wants you to get it done now. So he is taking you guys next!! AHH!! I was really super nervous about it, but it didnt leave me any time to be nervous. I had to call my mom and Tom and let them know that we would be moving the surgery WAY up! We head down to the pre op and get everything ready and around 930 Dr G comes in to go over the surgery. I still dont know what type of port they will be putting in him. So Jacob asks the doctor which one they are doing. He tells me that he had talked to his other doctors and they all agree that the port o cath would be the best one to go with. But he asked me how I felt about it. I told him that I just felt more comfortable with the broviac port instead. Because even though the doctor may only want him to have fluids a few times a week, I have a feeling that we will need to use it more often down the road. He told me that he agreed with me, and broviac is the one we should pick. Surgery went great! Jacob came out of it great. And they taught me how to use the broviac and off we go to get released.

Everything was going good with the new broviac. They actually ended up ordering fluids to be done EVERY DAY. So I am so glad that I had the instinct to go with the broviac. That one is more for being accessed every day. We were supposed to be getting his new GJ tube BEFORE the port surgery. But scheduling kept having issues and then they couldnt talk to the radiology people and it was just going around and around in a big circle and nothing was ever getting done. We had to measure his tube again to see what size they had to order (and it ended up being the same size he has now...sheesh) So finally they got the piece ordered and we were able to get it placed. So we went in like always, the day before. He got it placed early the next morning. And then we went to start his feeds. He really had a hard time tolerating them. He would get sick and horrible pain and everything else associated with it. So after a day of realizing he is not going to tolerate it, they finally started him on TPN. TPN is nutrition that they put through IV or through the veins. So he may not be getting a lot of food through his tube but he is getting some nutrition through the port. Again...SO GLAD we decided to go with the broviac! So we were there for 6 days and left on TPN and probably will be on it for a long while. We are trying to up his feeds but every time we do, he gets lots of pain. So I know its going to be a sloooow process. We are supposed to up his feeds on his feeding pump 1 ml/hr every 3-4 days. And it needs to go up at least 40 ml/hr. We already tried to up it and it was fine for a few hours...and then he was back to having pain and having a very big full feeling. So pray that we can get it up soon and we can start tapering him off of his TPN.