Wednesday

On Wednesday, after a busy morning we were able to escape for another L.O.A. mid-afternoon. Once again Marietta came home for the afternoon/evening. She was dropped off at home and upon entering the house found both mom and James crashed out, being the considerate child she is she left us sleeping and went off quietly to do something. I woke up 15 minutes later in a panic because I had overslept and Marietta wasn't home ... she snuck up quietly on me and scared the crap out of me ... but she was home :)

Wednesday morning was busy with various things, making the morning pass quickly. Tuesday night we had to put James back on oxygen when his SATs kept dropping to the mid 80's. His SATs had started off low when he went to bed so it wasn't surprising that he didn't make it through the night. Over the past days we have not seen his SATs above 95%, which makes us wonder if he's getting worse again. Over the weekend we were having times during the day where he was actually registering at 98-100% when relaxed and we thought he was finally making good improvement.

The morning discussion shifted to whether we need to start considering home oxygen. His recent SAT problems have also brought a change in the type of SATs monitor we will need to consider when going home. Originally we were just looking at a spot check monitor which we clip on his toe for a minute a few times a day and see how he's doing ... now we will need to be looking at a monitor that can be put on for the night (or day) and has alarms to let us know if he dropped his SATs. Of course that's only a 300% increase in price ... just a mere $3000 ... and we thought the first one was overpriced and were having a hard time making up our minds.

We were advised that there is a loaner program through the hospital which MAY be able to help us out, but they only have 12 monitors and all are in use right now. It is possible they may get one back soon and it would go to us then. The problem with this is that it is loaned to you "as long as you need it". We haven't clarified what this means, but we're guessing that if two months from now he's completely stable again and has been for a period of time then we would need to return it for someone who has more urgent need ... which is only fair ... but how will this help us when a month later he starts to go downhill again? So altho this could help us temporarily it doesn't seem to be the best road to go. We can't ignore that James has an underlying lung condition that makes him a "frequent flyer". Interstital Lung Disease does not go away, it can become stable, but he'll always be prone to flare ups.

James' hospital monitor machine has been changed to a type that does a print-out whenever his SATs drop. If his SATs drop continously below 88% for 2 minutes then he will qualify for oxygen coverage, otherwise we'll have to pay for that as well. He does sort of tend to drop in and out of the 88-91% area when having trouble, but if they want to get picky on that all I have to do is make him cry for a few minutes and we should get a "good" printout.

Since James has sort of be going backwards they did a repeat x-ray and blood work to take a fresh look at things. The x-ray did come back showing slight improvement since May 25, when the last x-ray was taken ... I have to ask them yet how it is in comparison to pre-admission x-rays.

It is interesting to note that during all this time James' ammonia levels have been fine (except the one test that came back high, and a repeat was normal, so seems they way they took the blood that time effected the results). Whenever sick James has no trouble with his ammonia, which is one of the biggest concerns with LPI. This is especially interesting due to the fact that James is getting more via g-tube daily and has been eating relatively well (James style) from regular peoples food. He's just been eating hospital food or my meals, mostly pastas and rices, less the meat if I can pick it out. This has prompted us to challenge James diet and see what he can tolerate. For the next little while we will continue to feed him normal foods - excluding the most obvious protein foods like meat, dairy, eggs - and after he's out of the hospital for a couple weeks we're going to retest his levels and see how he's handling this change. Cooking will sure be a lot easier that way. It's nice to be able to give this a try while at the hospital and so far it's going good.

A good portion of yesterday morning was spent with the Lung Specialist ... yes, after two and half weeks in hospital for respirtory issues he FINALLY showed up!! And probably only because he got cornered from two ends. The Respitory Therapist (who also arranges the SATs monitors, etc) happened to be the RT who works with Frietag and when she mentioned his name I took the opportunity to politely point out his lack of attentiveness to his patients. She said she was heading up to see him and would talk to him right away. While she's doing that our Team Doctor was also on the phone looking for guidance from him ... so he was cornered and finally made an appearance ... only after having been paged how many times?

The results of this visit? He feels that James has recurrent aspiration pneumonia with pneumonitis (general term for inflammation of lung tissue). We were previously told that he does not believe James has PAP, but at this visit he did say he can't rule out the "rare stuff". He also said that even if he has PAP this is only a tissue/descriptive diagnosis but not an infinitive diagnosis.

We were left with 3 options, the first not being an option.
1. do nothing, carry on as we have been with reflux medication and treat when there are flare-ups
2. repeat the Bronchoscopy and CT Scan. From the broncoscopy they will send out some special stains looking at the more rare diseases, including PAP. At the same time they can see if he still has an infection or lots of lipids (fats indicating food in his lungs) in his lungs, as well as see what changes happened in the 3 months since the last bronchoscopy and CT Scan.
3. open lung biopsy - this is an actual surgery, requiring them to cut into the side of his chest and take a piece of his lung

Although he says he is not pro-biopsy he is definitely pushing towards doing the biopsy, telling us that this will give us better results ...first saying a more definite result, but then admitting that it could result in no further information. We have opted for Option #2 as we have read that things like PAP can be diagnosed by just a bronchoscopy. We also feel that we would like a second opinion before we consider doing a lung biopsy.

So on Friday James will be having another bronchoscopy done, this time they will be sending away "special stains" to test for more of the "rare things". They also are talking about coordinating a CT Scan, but we've heard that promise before and seen what happened, so I'll be surprised if it happens. Regardless this means another sedation, intubated (insertion of a tube into his airway), and likely some breathing difficulties afterwards. Last time he had the bronchoscopy done he had some troubles the following week, so we'll see how he handles it this time when he is not doing 100% in the first place.

Before leaving for our afternoon LOA we also made a trip down to the Swallow Video Suite to see what everything looks like, figure out what would work best and give James a chance to see. He didn't like it at first since he had just had an x-ray that morning and it looked quite simliar, but after being pampered and showered with stickers and attention he didn't think it was so bad afterall.

James has been doing fine with the idea of going back to the hospital at nights. The first day I kept reminding him over and over that he had to go back, and it seemed to work ... he's accepted that he has two homes.