Braeden's had a rough couple of weeks with the last one being spent in hospital back on Unit 2. He's been still having his intestinal issues since I last wrote and we've been trying to figure them out. Two weeks ago we spent the weekend in Emerge to find out after a abdominal xray that he could have a possible Ileus (when the intestines stop working in one spot). I had actually spent the night in Emerge and had gone home at 4am with B after taking him the evening before because he had been arching and screaming in pain. By 6:30 am he was back to the screaming in pain and when I called the Homecare Nurse's line she called Emerge for me and then called me back to tell me that we shouldn't have been sent home due to the fact that he could have an Ileus which can be life threatening...great! We were also experiencing issues with his feed pouring out of his g-tube site (not the tube, but where it goes into his skin). Turned out that the g-tube was no longer in the right position and when I tried to change the water in the balloon (the part that holds it in his stomach) at the request of the surgeon on duty, it slipped easily and we thought the balloon had actually burst (which would result in the tube coming completely out). While waiting for Dr.Eccles to come down to Emerge when she got a surgery break we had the g-tube taped to his stomach so it wouldn't come out. Dr. Eccles came down and went to remove the tubing to find that it wouldn't come out. She tried bursting the balloon and was unsuccessful at that. It took many, many, many tries to get it out and B just kept going more and more blue. I was in a room with a Surgeon and two Residents, no Nurse or RT. I took it upon myself to turn up his O2 and commented non-stop that his colour did NOT look good. When the tubing finally came out Dr.Eccles' comment was, "oh, he doesn't look great, I'd hate to know what his Sats are right now"....um, thanks?? I certainly was not terribly impressed! The balloon on the old tube was misshapen when we looked at it after it had come out but it is hard to know if it was actually faulty inside of him or if it was due to the Dr's efforts to get it out. We chalked it up to a faulty g-tube and went home.
Because of all of these intestinal issues and gas the decision was made to change his food to Nutramigen which is designed for babies with a cow's milk protein allergy. It seemed to be making a great difference in the slimy poop but he got extremely gassy on it again after the first few days.
Braeden was showing signs of increased breathing on Saturday afternoon and I could hear some chest congestion through my stethoscope as well as a mild cough. He was a bit fussy on and off for 10 hours, which for B generally means something is going on as he's such a complacent baby. I knew I wasn't going to get much sleep worrying about him so I took him in for, what seems like, our weekly visit to the Emerge at Children's. When it is a breathing issue they do take you right in which is good but I got some skeptical looks from the nurses as his air entry sounded good and his lungs sounded clear to them We had a Clinical Clerk (step under a resident) this time that saw him and she was kind of excited at B's history as he is so complex. An xray was ordered for chest and abdomen (to check for possible solutions to the poop issues) and the Emerge Dr poked his head in the room and said that "It's not looking good on the right side, I hope you packed an overnight bag" and I asked if he had aspirated and he said no that it looked like infection and left. The Nurse came in shortly after and I asked her what exactly was going on and she came back to say that the right side looked 'junky' and it was pneumonia. Ha! Not just a paranoid Mom afterall (not that him actually being sick is celebratory!). His blood work all looked great though so we knew that we were dealing with a viral infection which meant no quick cure (via antibiotics).
We arrived back up on the old stomping grounds on Unit 2 at 5am and we spent the next few days watching B get worse (since I'd caught it so early). It is horrible watching your child cough and hack and struggle to breathe! When he got settled on Unit 2 that first morning I waited until shift change and figured that I should go home for some sleep after being up for 25 hrs at that point. Walking out of there and leaving Braeden behind was one of the worst feelings ever. We got used to having him home and he got used to having me around 24/7 for five weeks straight so having to be separated again from him was physically painful. The saving grace I had was that we had such a warm welcome back and one of my favourite Nurses was with him for a few of those days as well as Dr.Volmero was on rotation for the week. Of course because life is full of complications as we also celebrated Rylan's 6th Birthday on Aug 6th with his party on the 7th, which made it hard for me to be in two places at once. Thank goodness Mr.B is such a fighter and was forgiving through all of it and a huge THANK YOU to my wonderful sister, who was here for a visit for the week (with my nephew), for taking care of T and Ry so I could be with B more.
Being Mr.B though, pneumonia wasn't enough. As he started to deal with the pneumonia he started having more intestinal issues and increased leaking around his g-tube site again. He was put on pedialyte on a continuous feed to help heal his guts and to get past the Ileus. I was not happy to hear that he'd have to take such a large step backwards in his feeds. Dr.V was considering sending him down for an intestinal dye scan again that traces the intestines. I had to laugh (in a not-so-funny way) as that was the test that he struggled in and Coded after it (by Dr.V nonetheless). He was able to tolerate the pedialyte well though and he had his formula slowly reintroduced yesterday. I was holding him yesterday and noticed that once again the g-tube site was leaking and I called the Nurse and the Nurse Practitioner in to have a look as it is clear fluid (formula is white) and you could hear it 'burping' out of the site. Rachel took note and said she'd put a call into surgery for them to come and take a look and would call again to update them. Braeden's mood was good and he fell asleep in my arms right away. When he woke up and I turned him over I realized that both of us were soaked and that the tube was just leaking non-stop. Rachel and Dr.V called Dr.Brindle (B's last surgeon) and she came down to take a look. I explained what had been happening and that it was the exact scenario that had happened in Emerge two weeks before and also noted that the bolster was not in the right position either (that it was off by a centimetre). Dr.B got Rachel to draw the water out of the balloon and then she pulled the tube right out (much to B's displeasure). She reinserted it again (really to B's displeasure) and the balloon was reinflated. That seemed to be all it needed. Dr.B figures that the balloon was slipping in his gut (due to reasons unknown really although there are many theories) and because his stomach is so small that a small movement of it could cause blockage in his stomach valve leading to and Ileus and and such. She figures that the fluid was clear and odourless due to only the 'water' part of the formula escaping and the rest of it being trapped as it was thicker fluid (gross). B was happy and there has been no more leakage since, let's just hope it stays put this time. I check it's placement several times a day (each diaper change) so I'm not sure how it could have slipped unnoticed at home but it's working well now. Dr.B said that I should get to know how to change out the g-tube myself and I told her she was crazy! She said, "you saw how easy that was" and my response was that she'd done how many of these and she's not the 'mom'. She thought that was pretty funny! The things I never thought I would have to do as I am certainly not a Nurse for a reason!
The great news is that Mr.B has done a great bounce back in the last 24 hrs and, if his night goes well, he'll be ours to take home again tomorrow morning. It's hard to believe it was only a week but I'll be starting out almost at square one in my confidence again once he comes back home. The hope is to avoid Emerge for a few weeks at least this time and while it has been wonderful to see so many friendly faces on Unit 2 it is always better to just visit rather than stay!