I know I've said it before but Dr. Mary Brindle is such an amazing Dr and person!
Mr.B had an awful night (again) and I even packed a bag at one point thinking that I was going to have to go into Emerge. I'm not sure which is more difficult trying to get some sleep with this kiddo or trying to keep his oxygen in while he's thrashing around with night terrors.
We survived the night (barely) and went into ACH to our appointment with Dr.Brindle. Dr.B was happy to see that the wrap (fundo) is still in place and she told us that the g-tube placement is still okay as well. From a retching standpoint it still doesn't give us any answers but we did discuss the possibility of changing out to a different style g-tube (again). The options that are left are the Bard and the PEG both which come with their advantages and disadvantages. The Bard is another skin level device (plus) but it also won't be any easier to vent (minus). The PEG is a bit more permanent as it has to be surgically placed and is supposed to last a year or two (until the site has to be adjusted for stomach growth). The PEG is the easiest to vent (huge plus) but it isn't a skin level device, it has a long permanent tube attached to it (minus) AND if we have an issue with it it is certainly more permanent. Dr.B has to put the PEG in via surgery but she suggested that if we were even to chose the Bard that she's still want to do it in the OR to save him the additional trauma.
We basically decided that surgery is in the future today, that much we know. Dr.B is hoping that Dr.Wrobel (GI) will want to do a thorough scope while he's under so that we can better understand B's gastro anatomy as well as a ph test to check our his reflux. Dr.Brooks (ENT) would also tag in and place new ear tubes in B's ears (more permanent version that should last a few years) AND I'm going to contact the Eye Lid Plastic Surgeon tomorrow to see if he can see B sooner rather than later because if he thinks surgery is the best option for B's eyelids then we'd like him to tag in as well. It might seem like a lot (it is) but when you weigh the risk of intubating him and anaesthetic we might as well get it all done.
Dr.B then offered (bless her huge heart) to send us down for an xray and told me to come back upstairs and she'd review it with me. We trooped down to DI and they took us in right away. As always we had wonderful Techs there and they got B into the 'stand' quickly. As often happens with Mr.B when he gets upset is that he holds his breath. This time was no different except that he doesn't have much for oxygen stores in his blood right now so he turned a nice mottled shade. The Tech offered us oxygen but I did bring a tank with me and told her I'd hook him up when we got out of the room. He continued to be upset and I wondered out loud what his Sat's were and the Tech said she could get me a Sat monitor. The first monitor didn't work so they had to go ask the Nurses for one. In the meantime we got him some blow by oxygen since he was turning a nice shade of blue (still screaming). We got him hooked up and after a short while his Sat's did go up to the mid 90's (even jumped to 98 shortly) so I was satisfied. The Nurses were still concerned about the drop he'd had and they were talking about whether or not to call the STEP Team (Critical care rapid response team), to which I quickly kiboshed that. If the STEP Team were brought in then they would certainly keep us there (and I wasn't concerned anymore about his Sat's). I explained that we were headed up to see Dr.B again right away, that we'd be in good hands. When they asked Ashley to come in the room to walk us upstairs she was a little surprised to see so many people there! Nothing like a blue baby to bring the staff running!
We headed back up to see Dr.B and she showed me the xray. It certainly has striations on it (pneumonia) but it was actually slightly better than his last xray in April (although he is seemingly sicker this time). Dr.B was really on the fence to on whether or not to admit him as was I and I asked her if I was just digging my heals in too hard and if he should really be admitted. Dr.B was satisfied with me taking him home and just waiting to see where the sickness would lead us. When (and I mean when) B is back on his daytime oxygen he is certainly more settled and breathing easier. It might just be that he needs some extra support right now. Dr.B did let me know that if it does get worse then she'd be more than happy to admit him and therefore we can avoid Emerge. Dr.B also let me know that she'd call us if the Radiologist's report gave any other indications of what was on his lungs. I didn't hear back from her this afternoon so I'm assuming that the Radiologist didn't have any other revelations.
So once again with B we sit and watch and wait. I am hoping for a bit smoother night tonight but am not exactly hanging too much weight on that.
And so it goes.
From Our Home to Yours...
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