Life at Home

After spending 44 days in hospital James, as well as the rest of of the family, is adjusting to be home again. Wow, what a mountain of stuff can pile up in a 6 weeks time of running in and out and only spending hours at a time at home. I said I would write when I had time, so I better make time, because by the looks of it I'll be busy for a bit.

Wednesday and Thursday were busy mind boggling days. Lots of people, lots of information to digest!! My only comfort was remembering how overwhelmed I remember feeling when James first had to be tube fed and now it's 2nd nature ... so with time we'll get this all figured out too and it will feel like 2nd nature as well. Although I must say the transition to tube feeding was much slower then this as we went through an actual "training time" where we just went home for overnight LOA's to try it out and then came back during the day to tackle any issues. But regardless we're home now and trying to set some sort of routine again ... and really the treatment is not hard to do.

It was 7pm by time I got out of Toronto on Wednesday. Our equipment was brought right to the hospital in the morning so that we didn't have to be home by a certain time to get set up, which was good because we would have had to stay another night since by time everything was organized the compnay was closed for the day. Pharmacy went over how to do the treatment and use the needles, etc. We discussed monitors and reviewed our options ... something we'll have to look further into, but can do on our own as we 've been provide with the direct contact, making it much easier. They are able to get monitors at a better price, but we have to weigh out some of the different options ... and the fact that their monitor is over twice the size and not near as portable ... a rather important factor when you're dragging oxygen, monitor and a feeding pump wherever you go. We were also set up with Visiting Nursing Care to come to the home once a week and see how things are going. This is different then Shift Nursing that actually stays and cares for your child for a certain number of hours. Visiting Nurse come to change dressing, help with specific tasks (e.g. bathing), etc. .... and there's not much to check with James so I'm not sure this is needed, but we'll keep it for the time being while we get things figured out.

I arrived home Wednesday to pretty much unload everything and drop it whereever a space could be found. Rob came home shortly after me. We found James' medicine stuff and did his treatment and then off to bed .... zzzz. Thursday was another busy day. I was out the door early for an ultrasound and OB appointment ... which took all morning b/c they were overscheduled. Everything went well with the appointment ... baby scored 8/8 on the ultrasound, so everything is fine that way, even tho am measuring small with their regular tape measuring technique (which after past experience I don't put much faith in that system). Blood pressure was higher and had jumped a significant amount. I was aware of this since I monitor it at home, as well I had asked the nurses to check it a few times for me when in hospital. Previously they had said that this level I should be closer monitored, but usually blood pressure does rise near the end, so they have flagged to pay closer attention but for now we're okay ... phew.

During my morning at Mac I had to wait inbetween ultrasound and appointment, but at least they are nice enough to provide a pager so you can go off and do other things while waiting. (I don't imagine they do it for just anyone who wants to go wandering while waiting, but since James was in hospital before I used to get one then, and this time I had people I wanted to talk to so I asked for one again). So I got a chance to talk to a few people who had been taking care of James, as well as catch up with some of the nurses. Everyone was wondering what had happened as on their end all they really heard was that James was unable to return back to Mac.

While I was off at Mac Rob was having lots of fun at home getting James equipment set up. Nursing came and had all the paper work done to get him going in their system. The Oxygen Company also came and had to go through a pile of paper work, rules, regulations, coverages, etc. I arrived home just as the actual oxygen delivery guy came and then went over different options as well ... but having missed all that went on during the morning I was rather lost. So after a late lunch I was too tired to think straight and went off for a good nap. Upon waking Rob and I had to sit down and go over all that he had dealt with during the morning ... and before we knew it the day was shot and we had nothing to show for it.

At night I had to get out and do some shopping while I could since it's even harder now to take James out and I also had birthday shopping for Marietta to do. I only got a few km down the road and found the van acting up on me ... a quick call to my dear mechanic (my hubby for those of you who don't know he's a mechanic) told me to drive home slowly and a test drive confirmed what he thought ... transmission done, or at least not worth rebuilding ... yet another project to be done. Boy we're glad for the second vehicle we have on the road during the summer months. Thankfully we have another transmission from a parts vehicle Rob aquired some time ago ... so Rob's been buried under the van all weekend, trying to get it done yet tonight, yes it's after 11pm now.

Friday was spent trying to find the floor back in our house ... organize, organize. Most of the time was spent rearranging James room, figuring out where to set up all his medical supplies, etc. And I wondered before where we were going to put baby and all it's stuff ... James just ate up more of our limited space ... the oxygen tanks alone take up enough space. So now that his room is arranged, next week I can rearrange it again as I try to fit babies clothing, bedding, etc into his room. For the time being baby is going to be spread, sleeping in our room, "supplies" in James' room ... we'll figure out a more permanant idea in a couple months when he/she outgrows the moses basket. By today I finally started to feel like I was making some progress ... upstairs anyways.

The girls arrive home around supper time tonight. It's a nice feeling to know that they're actually home to stay this time and we can start trying to set some sort of routine again ... for a few weeks anyways, before baby throws everything off again :) Routine will also be good to help us get James back on track ... a boy who's used to staying up until 10:30pm and in turn has since we got home napped 3 hours each day. He's never required a lot of sleep and always like to stay up late, but he's gonna have to learn to go to bed earlier again. Having the girls home will be more difficult for James also as he'll begin to realize how tied down he is. He's been playing wonderfully since we got home ... quite content in the dining room with his toys, sometimes joins me where I'm working, but never asking to go elsewhere. With the girls up and downstairs, inside and outside, I believe I'll find myself dragging his tank around a lot more.

James is doing well with his treatments. Tonight he even tried to hold the mouth piece on his own. As you can see it's a little lopsided and I ended up helping him again ... but it's the fact that he's willing to try and so accepting that truly amazes us. You can also see that we found a nose plug that works. It's adjustable and not near as tight as some of the other swimming nose plugs we'd see, it doesn really pinch is nose completely, but just blocks off enough to he breaths through his mouth. He fought it the first time I tried it, but since then has been find with the idea. It fell off while he was doing his treatment tonight and he right away got worked up that it had fallen and needed to be put back on. Usually he still gets worked up for a minute or so right before treatment, say "no hurt", but then completely cooperates and doesn't complain once we start. Tonight he didn't get worked up at all, just sat their and waited for me to get it started. He is such a cooperative child!!

The J-tube is still in, although we're not sure how well it's working at this point. We're trying to get him down to only being connected 20 hours per day but are finding some inconsistency in his stools so we're not sure how well he's tolerating it. One day he only has 2 bowel movements (3-4 is normal for James), the next day we're cleaning him constantly. We'll keep working at it for a bit before we make any further decisions, but we know he can tolerate 16-18 hours on g-tube feeds so we won't be too upset to go back to g-tube ... seeing as the doctors are confident that the J is not needed. In the back of our minds there's always the question ... and what if they're wrong? So for now we keep working at it.

Oxygen wise we've seen a bit of progress too. Today I had James off the oxygen for 2 hours after his treatment and as long as he was playing quietly (sitting and playing) and not active he was okay. But then he asked to go outside ... so much for mellow ... and we don't know how much the humidty is a factor either ... but regardless he was back on the oxygen after about 15 minutes. But right now we're just happy for the 2 hours. We actually leave the nose prongs on and just have the oxygen turned off, that way it's less of a battle to get him started up again. To go outside today I took the prongs off ... so he was upset when he had to go back on, but after a few seconds was off playing again ... once again, so accepting and cooperative ... it just melts my heart seeing the disappointment and fighting him when we have to put them back on him. If we see consistently that he can do it for a couple hours with more activity then we'll let him run more freely, but for now keeping him on the prongs keeps him from getting too active. Each night I also put him to bed with the prongs on but do not turn the oxygen on after his treatment. Right now I'm too lazy to see how long he lasts, so I turn the oxgyen back on when I go to bed so I don't to get up another time during the night (I have to get up to change his feed bag once during the night ... only once, I'm not complaining). Once I feel more rested (if ever) then I'll test him a bit further during the night.

So ... I think that's the rundown from here.