Ironic that my last post had us coming out of hospital when this post has us going right back in!
Mr.B spent yesterday coughing here and there and gave Mike and I quite the scare last night when he woke up from a deep sleep choking. We are pretty sure he aspirated as he was choking too hard not to have. We certainly have had our share of heart-stopping moments this past week.
So back to Emerge this morning. I let him 'sleep' through the night (meaning I was up with him 10 times while he coughed) and took him in this morning. It was pretty much a no-brainer when I saw how hard he was working this morning on breathing. All three boys and I trooped over to ACH for a day of fun (um, not). They knew by noon that he was being admitted but it took almost 7 more hours to actually get him upstairs. The unnerving thing (well one of many) is that his xray from two weeks ago looks the same today, it's not improved. One would think that after having Pneumonia two weeks ago that one's lungs would improve, no? The big boys hung with me for 7 hours in total and for what it was they did really well all things considered.
Braeden had a really good nap on his tummy after Mike had picked the big boys up (both of who put up a fuss that they didn't want to leave after I heard all day 'can we go now?'). It seemed that sleeping on his stomach helped move some things around because by the time we got upstairs he was breathing pretty darn well (thank you once again Murphy)!
I don't think we are in for a long stay this time but I am never really sure of these things. The thing is that it would be great to get to the bottom of his 5 weeks of diarrhea while we are there for our 'visit'. The truly unexpected thing today, the absolute punch-in-the-gut, was the Pediatrician on Unit 2 tonight asked if he'd been tested for Cystic Fibrosis....um no...why??? Apparently CF causes issues in the guts as well as the lungs and can often present in the guts before lungs. I am have become SO painfully aware of how little I knew about genetics over the past year. I was under the impression (big ol' FALSE) that you had to have CF in your immediate family to be a carrier. The sad part? It would fit. From what I've read, it would be one of our puzzle pieces and to say that terrifies me does not even come close to what I feel (am trying really hard NOT to swear in this posting). So we'll see what the next few days brings, the tests are simple enough and at least non-invasive. The other sad part? It still wouldn't be a complete diagnosis. Why I find CF devastating when Mr.B is a miracle in life itself I'm not sure. I guess because CF gives me a more definitive time line and I'm not ready to come off the denial train just yet.
Unfortunately this wasn't our only 'excitement' this week. My tears finally started this week due to a moment of sheer blind panic on Wednesday. B's been having all kinds of issues with his feeding tube and it has been swapped out a few times now. The main issue (that we've finally realized) is that the balloon inside his stomach keeps getting sucked into or stuck in his pylorus (lamens terms, bottom valve in the stomach). As you can well guess this has been causing issues, most of which is that it keeps pulling bile into his stomach which is very wearing on the stomach lining and makes his body think that he has a full intestinal blockage which can shut down the intestines (can you say Ileus?) and tried to force everything upwards. Keep in mind that because of his fundo surgery his stomach is already unnaturally small. When he was in hospital last week we were having issues (again) with leakage from the stomach site and Dr.Brindle (surgeon extraordinaire) came up and took the water out of the balloon (inside the stomach), pulled out the g-tube, put it back in, and put the water back in. Presto change-o! The repositioning of it worked wonders and no more leakage.
Well thank goodness I was there to witness that because on Wednesday I needed it. I had B on the change table (where I ALWAYS check his g-tube positioning because even 1/2 a cm can make all the difference) and then into his tumble form (therapy chair) to eat. He was a bit fussy while he was eating and I knew he was tired so when the feed stopped running I flushed his line and put him into bed. Now normally this isn't an issue as his bed had a specialized wedge to keep him up at 20 degrees but for some unknown reason (at the time) I had my spidey sense go off and went in to find him retching up a storm. Now to see a baby with a fundo retch is traumatic in and of itself as my child can NOT throw up, so picture you at your very sickest you ever been while not being able to vomit and that is what it looks like. NO prob, crisis is generally averted by venting him. I grabbed him up and put him on the change table to vent him (pat on my back, I'm getting good in this scenario, I hardly freak out when I see him retch anymore) to only find out that when I put the syringe in to vent him I am getting NOTHING out. I just fed him 5 ounces of formula and nothing is coming out. Now I am starting to panic. Retching = not breathing. I checked his tube and it had 'slipped' to 6cm, 2 1/2 cms from where it needed to be. I couldn't pull it back, it was jammed in his pylorus and I did not know for the life of me what to do. I considered calling 911 but realized that they couldn't get there fast enough before he 1) caused internal damage with the retching and/or 2) stopped breathing. Hence the BLIND PANIC when I realized that the good ol' 911 wasn't a great option. If you don't have 911 what the hell do you have??? I also realized (how I thought of all of this in nanoseconds I don't know) is that the paramedics might get there but they might not know what to DO also! They are versed in g-tubes but it's not like they have many calls for them (if ever).
So I did the only thing I could think to do, yelled for help and got Ry to hold the venting syringe while I pulled the water out of the balloon, thus releasing the g-tube (while running the risk of it coming completely out). Instant explosion of gas out of the tubing and such relief for all involved. I obviously was more in control than I felt because Ry said he was getting bored having to hold the syringe for me! I took the syringe back from Rylan, and he went back to the TV. Braeden let out a huge sigh, stuck his thumb in his mouth and fell asleep. And then the tears came and came and came. I can't believe that I had to be in such a position when I'm obviously not medically qualified for it! Poor Mike got a phone call of me sobbing telling him just to listen to what just happened. I called the g-tube nurse and held it together till I had to leave my number for her to PLEASE call me. When I did talk to her she did congratulate me on my quick thinking and reassured me that I'd done everything I could have but I DON'T EVER WANT TO BE IN THAT POSITION AGAIN! I am NOT a nurse, have never been a nurse and (no offence my dear nursing friends) but don't ever want to be a nurse! What it did win me is a trip back to the hospital to change out the tubing again for a mic key (skin level device) which we had to go back and have changed again on Thursday. Dr.Brindle did call me at home (bless her super-busy-in-high-demand heart) to make sure I was okay and to explain that we might need to go to a completely different device altogether (one that doesn't have a balloon in the stomach). Unfortunately these other devices are harder to insert and remove (of course). And of course our appointment to discuss these other devices was today, our Emerge visit day. At least Dr.B knows where to find us!
Needless to say, I am supposed to be getting my 'stress' under control. I'm really not quite sure how my Doctor thinks I'm going to do this (not that he knows either). I know I need help, I just don't know what form I need it in! I need sleep, that much I know but it is rather illusive lately whether B is home sleeping or not. I am tired and worn out but I did have someone kindly remind me this week that it could be worse. Yup, really.