From One Holiday to the Next

Well, it’s been six weeks. James first was admitted on Victoria Day … and he’s still admitted after Canada Day. Hard to believe. I’m still stuck in May, even though I know school is finished and the girls are off camping … it just doesn’t seem like July to me. But reality says I better catch up because babies coming whether I think it’s July or not!! :)

I did not think I’d be going home all that often, but then we realized it was a long weekend, and so I took the opportunity to go home a couple times over the weekend and get some relief from my “hotel” room and a chance to get a few things done at home. Previously the girls were home on the weekend, so besides doing the basics of laundry and organizing I did not have much time for anything else … it was nice to be able to tackle a few projects without any interruptions. This weekend the girls went off camping with Grandpa and Grandma, as well as some of the rest of my family. They were excited to find out there were more people they know camping there as well. I miss the girls, but I’m glad that they’ve had a chance to get out and have a nice time since it’s once again unlikely we’ll be having much of any sort of holidays this summer. The girls on the other hand are having so much fun gallivanting from one place to the next that they don’t seem all too bothered, especially Rebecca. Marietta has her ups and downs, she is more in tune with what is going on and more emotional. Rebecca on the other hand doesn’t seem to fizzled by what’s going on and just asks where she’s going next.

James has perked up back to his normal self … chipper and playing, along with an attitude developed from having one on one for so many weeks. He’s gotten used to the routine here and is more relaxed, sleeping better and cooperative with the nurses and doctors. He’s doing good on his treatment. He knows approximately when it’s treatment time and gets worked up the minute the nurse walks in the room at that time. He cries and is upset for the first minute or so of treatment and then settles down. We are happy that he is cooperative with the mouth piece. Treatment could also be done with a mask, but just the sight of a mask makes him go somewhat beserk. When using a mask they actually inhale only about 5% of the GM-CSF, this is because our nose has filters and actually filters out a lot of the material. When using a mouth piece he is getting closer to 20% of the treatment, so this is a much more effective way to treat him. The problem is that he is breathing with his nose while the mouth piece is in, therefore not getting the treatment as he should. The last couple times we have been plugging his nose while we do it … not exactly making it more pleasant, but he was more calm with the idea this morning. Now we just have to find a gentle way to plug his nose each time so we don’t have to hold it every time. We figure it’d be more effective to fight with him to accept a nose plug then fighting to accept a mask, which isn’t as effective. The doctors are very happy and very impressed that he is taking the mouthpiece.

Yesterday Rob stayed with James for the day. James had been on about 100-150ml of oxygen. After giving his morning treatment he forgot to turn the oxygen back on, but James levels stayed good and he didn’t notice until he went to take James for a bath. After attempting a bath James was playing on our bed and suddenly Rob realize his face and hands were turning purple and blue. A quick check showed his oxygen levels had dropped in the 80’s again and made us realize how much that little bit of oxygen helps him. We’ve never actually seen him turn colour before.

Today’s news is that they are working on discharge … yup we may just get home this week!! Tomorrow they will do an x-ray to see if any changes have occurred. They do not expect the GM-CSF to have actually done any changes yet, but wonder if he had a virus or was irritated from the procedure he had last week and whether that will change the look of his x-ray. At this point they figure they aren’t doing anything here that we can’t do at home. This means James will likely be on oxygen at home since he still requires it around the clock… a new thing for him to adjust to … and us.

They have set James oxygen limit at 92%. This means that he needs to be 92% or above and if he’s not he needs oxygen. At this point he is not able to hold that on his own, so they are working to get us a low flow oxygen meter as most home oxygen starts at 500ml and he doesn’t need this much. Hopefully it’s just a matter of a few more days and he’ll be able to tolerate being off oxygen …although so far he hasn’t indicated that this is the case. Again today I took him off for a bit to have a bath, but by time bath was over he was in the 80’s again … all he’s getting is a whiff of oxygen thru the nose prongs, but he needs it.

The initial plan is that we come back in the next 2-4 weeks (whenever they can get us an appointment) and have another x-ray done. At that appointment they will make further plans. Since this is all trial and experimental this means that they can’t really speculate on what we will be doing in the future … we tackle each bump as it comes. Today’s speculation is that after that they’ll do another CT Scan to get a clear picture and then review whether a Whole Lung Lavage (WLL) will still be necessary. We cross that bridge when we get there.

How long it will take for discharge will depend on how quickly they can get everything organized … one thing is for sure … they can do it quicker then Mac. Tonight he has to be retested for oxygen coverage since we’re in a new hospital and also the last one was already two weeks ago, which means many things could have (and have) changed since then … they need something closer to discharge date. If we have trouble getting the full strip she did not seem concerned and said they would just write a letter and get the coverage that way. He will also be getting nebulizer equipment (a machine that turns liquid medicine into fine droplets that are inhaled through a mask/mouthpiece) to run his treatments … this is all government funded through the same programs we are already registered with for James’ tube feeding equipment. With regards to SATs monitors … they are advising us to try our best to hang onto the loaner one we currently have …unfortunately we probably won’t be able to hang onto it long enough as we were only suppose to get it for two weeks, and two weeks is already up. They do not have one available for loan, but they are hoping that by the end of this summer a government program will be in place which will fund these as well. If we run into trouble we’ll still have to purchase, but it seems they have better vendor connections and can get the machine at the same “lower price” we were originally quoted but are having so much trouble actually getting at Mac due to sales person changes. The other thing to be organized is to actually have enough medicine for us to go home on before our full supply comes in. So we’ll see how long it takes to get everything together.

And that brings us to the end of another long update.