Still Not Home

Well it's been a few days since I've had the opportunity to get sit behind a computer. The library closes at 10pm and if I'm lucky James goes to bed/sleep at 10:30-11pm ... so if I don't get down to the library at nap time I'm out of luck.

We're still going through the up and down process ... up and down on the oxygen, up and down with our doctor frustrations.

Thursday morning did not start off well. I woke up to discovered that the night nurse had given James the wrong formula. The nurse who answered my call agreed right away with me and we proceeded to dump and change it ... but unfortunately that wasn't my nurse for the day and when my lovely nurse showed up she just made the day continue even worse when she tried to tell me that I was wrong for she had contacted the night nurse who was sure she gave the right stuff. I refused to back down and neither would she. At one point she told me if I had some of the formula they would look into it, by that time we had already dumped it out ... and she seemed satisfied to think that therefore I had no proof. Sometime later I realized that we had thrown the old feeding bag in the garbage and there was still formula in the line, so I drained it and then poured some of James formula in another container. Upon showing her the VERY obvious difference she reluctantly agreed it was wrong and then said that the night nurse had called back to say she wasn't 100% sure anymore she got it right. At what point was she going to admit that? Thankfully it was a small enough amount that it did not seem to effect James, we can be thankful that James is intolerant and not allergic to protein and milk. We all make mistakes, but we need to know when to fess up.

That was only the beginning of our nursing trouble that day. She later came in and declared James was not in need of such a small amount of oxygen and proceed to take him off. James SAT levels struggled to stay in the 90's, especially when he became active ... her answer for this ... take him off the monitors so they stop beeping at the desk all the time!! In her opinion he looks fine so he is fine. She declared she would check his SATs every 15 minutes ... this was at 1pm ... at 4pm a student nurse finally reappeared to check, and even after he registered at 89% still no action on their part. It was easy to see James was struggling, you could see it in his neck area as well as the fact he was sweating like crazy. I didn't know the oxygen stuff was all still hooked up, or I would have rehooked him myself. The night nurse took one look at him and put him back on oxygen for the night and for the first time he had trouble at night maintaining his SATs (usually nighttime is his best time).

At the same time Thursday I also had it with the doctors. I don't even remember what set me off, but it was just so obvious we were getting no cooperation ... the biggest reason we knew was because it's the last day of the month and the next day a new Team would be starting ... and we would have to start all over again. I finally paged our pediatrician in the hopes of some guidance. By the time I talked to her I already knew that the Meeting of the Minds which they had wanted for that day was not going to happen and they are still working on a scheduling a day. She expressed interested in attending this meeting if it fit into her schedule. She also gave me a few pointers on what to demand and what to expect or accept with regards to James' progress. Although the call didn't necessarily change anything I felt better just being able to vent my frustration to a doctor who truly understands that James just does not follow the norms. As well she said she would get on top of the 2nd opinion from Sick Kids since there is no move from here for it to be done.

GI did appear on Thursday and happened to see James coughing and sputtering while trying to drink from a straw. This seemed to trigger them into some sort of action anyways, even if it's not something I'm extremely concerned about at this point. I had noticed it other times that since in hospital he would have these coughing fits at times when he drinks, especially if he drinks from a straw ... but not always. This could show something, but I attributed it more to the fact that he never drinks from a straw, it's just a new technique he hasn't gotten the hang of yet. The only thing is is that it's the same cough he was doing before he ended up in hospital ...so something to possibly questions, altho I probably wouldn't have been to concerned until I seen the problem continue.

Whatever the case, they're actually do something now ... altho I'm not sure what they're all looking at since they haven't reappeared since then to explain. They requested some stool tests ... something to do with looking at the electrolytes, as well as blood work that had to be done at the same time as collecting the stools. If they ever reappear maybe we'll find out what they're looking for ... I'm guessing it has to do with his lack of growth (he hasn't gained weight since admission ... or for the last couple months ... even tho we're feeding him more). As well they requested he been seen by an Occupational Therapist (OT) again to access his eatings. The OT did come by Friday and happened to hear him do a little cough while drinking from a straw again. She feels a Swallow Video Study would be beneficial. He would be required to eat and drink different foods and they will be watching to see what happens when he eats/drink this and where the food/drink goes. This would help us to figure out if James' is actually having food come back up from the stomach, or if the food he is eating/drinking is going into his lungs instead of his stomach. The results of this test could help us to know if it's his oral intake that is causing his aspiration problems. Although the results of this test could be very helpful for us to understand James I would be extremely shocked if he were to actually cooperate for such a tests ... they are aware it is unlikely he will cooperate (especially considering I will not be allowed in the room since I am pregnant) but feel it is worth trying. Since it is unlikely he will cooperate the OT plans to stop by more often and watch him eat as sometimes they can figure out just as much by continual assessments.

Still haven't seen the Lung Specialist. We put in firmer demand that he be contacted so we can speak to him ... previous experience tells us it will take a week for him to show up ... altho Genetics already has contact him and still nothing. The Team Doctor did tell me that the Lung Specialist does not believe James has PAP ... but he hasn't shown up to explain to us his reason he believes this. Not that his showing up is really going to help any, since he doesn't take time to listen to us, doesn't allow you to ask questions and talks so fast you're can't keep track of all he's saying. It's frustrating for us to know that James' biggest issues are his lungs and yet where is the guy when he should be the first one there? Not to point out that it's not very comforting having our biggest concern in the hands of someone who you can't even asks questions.

As for little James himself. He's doing really good all considering. Friday morning he was doing well enough that we could take him off the oxygen again. This time I felt more confident and could see he was ready for this challenge. He did great throughout the day ... SATs were a bit low after exerting himself a little too much, but they would come back up if he rested. He made it until 5am Saturday morning and then they had to put him back on oxygen because his SATs kept dropping in his sleep. I could also hear that he was having trouble. Once again I had my "favourite" nurse who happened to be on break when two other nurses came in and decided he needed oxygen. When our nurse came back she muttered some comment about them putting him back on the oxygen, but didn't argue when I stated that I could hear that he needed it. Today he did really well, after being awake for a bit we took off his oxygen and at this point he's still off it. During the first bit his SATs were a bit low but as the day progressed heo seemed to be able to hold the SATs a bit better ... we'll see how the night goes.

We are now at a point where gets 6 hours a day off of his continous feeds. So he's a free, wireless, tubeless man for parts of the day ... and loving it. He runs the halls, rides the cars, plays in the toyroom and of course his all time favourite ... foozeball. At first it was extremely difficult to rehook him after his freedom, but James so quickly adjusts and after understanding that he'll get free time again later he's okay with the idea. Usually if we have to rehook his feed or the wires he'll keep asking "no nose, no nose?" ... meaning "Do I have to have the nose thing in?". Even when he has had it put back in he's only upset for a minute and then he accepts and moves on.

We have also been looking into getting a SATs monitor for at home. Although James' SATs are acceptable to be off oxygen they are only hanging around the 92-94% area ... lower then he's ever had before even when really sick (lowest he's ever had before was 95% and that was very short term, he's normally 98-100%). If he can hold the 92-94% for 24 hours then they will discharge him. This makes us a bit leary, knowing that when active he has trouble holding them in this area. It also makes us concerned about future issues. We know he has lung issues that will not go away. We also know that he does not display the normal signs of a person who is low on oxygen ... just ask the nurse who checked him when he first appeared in Emerg ... they kept checking and checking, this way and that, before they finally accepted that the machine was telling the truth and this kid needed oxygen. Unfortunately we found out that none of James' current coverages will cover such a machine ... and well ... knowing how overpriced medical equipment is we shouldn't have been too surprised at the price of these things. Now we must weigh out whether this one time experience warrants getting one.