Sunday, 25 March 2012

No Energy Left for a Catchy Title Kinda Day

I am taking time out of my non-stop hand washing/disinfecting every surface in my home that I can.  The boys have been sick now for 8 days and there is no sign of it letting up.  The Dr tells me it is viral, although I'm not convinced due to the green coming from lungs and noses, so fluids, popsicles and jello it is.  My biggest fear with it is that I will somehow transfer it to Braeden so my hands are down a few layers of skin with the constant washing and cleaning.  It is hard having sick kids that feel so very miserable but even harder when the health of your baby lies in the balance of NOT getting sick.  I am so concerned that what the boys are fighting (if it is in fact viral) is the Respiratory Syncytial Virus (RSV). B has been inoculated for it (as it is so scary in infants especially preemies and lung disease patients, which he is both) but the thought of having it in the home and carrying it over to the hospital is terrifying nonetheless.  I am thinking that I'll be back at the walk-in clinic again tomorrow if this keeps up with the same strength it is going. Mike and I went out for a drink and to be social at a friends Saturday night for the first time in months to only find out an hour later that both boys had coughed so hard they threw up...loverly!!

The sad part of the week came when I had to take Keeta, Mobee and Rafe back to the airport to go home (but with the illness (or my overall grumpiness) in the house I think they might have been trying to escape!).  It was a wonderful visit and because they were here I could be assuaged that B was in great hands with sending my sister to the hospital so I could take care of myself.  On the flip side we did only have to wait a mere 24 hrs before the arrival of our next guest, Pappa.  Of course Wade got only about 24 hrs before he too started feeling ill. 

We did successfully complete our third Blood Drive yesterday and had another 6 donations in B's name.  Thank you to my wonderful Husband, Tania Stevenson, Ursula Stevenson, Corrie Gosse, Candace Mills, and Kathy Mills.  Also a huge thank you to Jenn Mills, Terra Mills and Lorna Zebedee for your unending support and help!

Mr.B had his ENT test on Friday and I stupidly forgot to take an Ativan with me to the appointment.  He was a trooper, there is no doubt.  He screamed his head off through the whole test, it was pretty clear he was NOT impressed with this round.  What he did do though is made it through and did some great swallowing on camera that Dr. Brooks was able to catch.  He still can't have food orally but they are going to try him back on an NG (into the stomach) tube to see how he handles it.  What the test showed us is that if he does have a larger reflux the Dr and the SLP are comfortable that he can handle it and not aspirate it.  Fingers crossed tomorrow that he isn't too refluxy (yes, it is now a word) and can tolerate the food into the stomach again.  He survived the test but then decided to see how fast my heart could race when his heart rate flipped up to 205.  The great thing is that he was able to be calmed down enough (although he was pretty calm when he flipped into SVT) to convert himself.  He was exhausted at the end of it though and did need to have some blow-by (extra oxygen by his face) a few times once we got back upstairs.  He was very pale for an hour after and when he finally slept he slept hard.  Bottom line, we both survived it.

The other good news is that they lowered B's oxygen flow rate down to 4 litres this week.  He seems to be tolerating it successfully.  He is working harder to breathe but he is still able to maintain his O2 levels with consistency thus far.  They will look at possibly going down a bit further this week to 3 1/2 litres if all goes as planned.

We are still hoping for the multi-disciplinary meeting this week and I finally get to get the FSCD (Family Services for Children with Disabilities) contract started (fingers crossed) for him.  It won't make a huge difference but they will hopefully cover parking and a bit of our mileage.  Every little bit will help being as we are burning through gas and parking (which we've been able to apply for other coverage for) each day.  I am constantly thankful that we only live 15-20 mins from the hospital because if we lived in the south or far north I don't know how I could make it work.  We've more than doubled our gas bill for the van in the past four months and with the price of gas going up I might need to start riding a bike (where to put the car seats though?)!

So we've got a busy week ahead with appointments and just keeping myself free of this yicky illness but I do have the help of my fantastic Father-in-law here (assuming he doesn't get more sick too!).  

A happy (only a little bit of sarcasm) Spring Break to all!

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