Breathing Blues

FRIDAY 28th FishBowl Head
They took the oxygen tube out of Deedee’s mouth, replacing it by the oxygen dome at 50%. The dome is placed over her head, making her look as a kitty trapped in a fishbowl… or as an actress trying out for 1000 Leagues Under the Sea… Fishy business or not, DeeVa was handling it all gracefully. But it all has stressed her much, and she’s got a bit of high pressure. So they planned to check her kidneys just in case. In the meanwhile, they are observing her respiration and lungs behavior… DNA tests have not arrived yet.

SATURDAY 29th Yellow, yellow...
Still on the fishbowl business… In the morning, granny Millie passed by to visit DeeVa. She brought a gift (not to be opened until 3Kings Day!). At afternoon there was no change at all… Baby breathing with the oxygen at 50%, she had been suddenly changed into a yellow tshirt that left her bare and cold. Seems she did a mess before we arrived… We sang, and played with Dolly and what is left of the blue balloon poodle. The near neighbors also brought a toy with sounds for their baby and were kinda talking to him a bit more cheerfully… Seems his odds went up and they are getting the “be happy for them” vibe. Yay!

Nightshift, not much had changed. No one but us there… people tend to visit once, usually during the 2-hour afternoon shift. DeeVa was a bit fussy, seems she dislikes the fishbowl… Can’t blame her, everything looks foggy and blurred from within. But she was dashing, as she was changed into a yellow attire and smelled really good thanks to baby lotion. Her bright blue eyes focus on us with piercing attention… We just wish we could hold her tight…

SUNDAY 30th Back to Oxygen Tubes
Not a happy-go-lucky morning, we were a bit edgier than normal. As we got to the ICU, I overheard something about the left lung… but nothing was told to us. There was this spooky nurse that seemed to be staring… Freaky. That same nurse approached us asking us if we had considered treating the girl in the States… that they had been commenting on that. So I guess that confirms what I’ve been pondering… No good treatment possibilities here for SMA Type1… Staying here is almost a death sentence. From all I’ve researched it seems so. I’m trying to find out about the hospital in Tampa that specializes on children illnesses, one of its strengths is precisely spinal muscular atrophy. I foresee many drastic changes ahead in 2008…

On the afternoon visit the doctor told us that DeeVa’s left lung started to collapse early in the morning but they helped them on time to keep them from doing so. She will need the oxygen tubes again if her respiration is too erratic or if the lungs show that they need help. Not so good news… But I knew the fishbowl was not helping at all, she didn’t look as alert as days ago. The DNA test has not arrived yet and may take another week of waiting… Happy happy joy joy…

At the nightshift they had returned the oxygen tubes and cables… Somehow Deedee looked relieved. The whole day she looked a bit tired and beat (no wonder), at night she was alert. So, we sang to her, cheered her up and then tried to make her sleepy. We left Dolly seated on her side so she will have someone to chat during the night…

What I expected to be a faster ordeal will be taking much longer… The lungs will need more than a week to heal, that is obvious. And with everything else that we’ve seen, our hopes to have her home at 3Kings day are fading away faster and faster… We know, it is better that she stays in a place where she can really get the aid she needs, but it all seems against the natural order of things… Home is dead silent. The Xmas tree stands there with all the gifts wrapped and waiting at its feet… It almost seems to be mocking us. It almost seems to be trying to shine with its ornaments because it knows its lights wont be turned on anytime soon… I even thought of taking it away… But we’ll leave it as it is. 3kings day or not, even if it is 2 or 3 weeks later, we WILL celebrate Xmas, even if out of date… in our own way. For our Xmas is Deedee being home and well, bringing her laughter and joy into our zenith. And she deserves to have her 1st Xmas celebration. Hey, better late than never!

So… The year will end in a bittersweet note… It was the best of times, and it was the worst of times… All wrapped up at once. But as long as there is life, there is hope. And who knows, maybe thanks to Deedee we will be forced to do what we wouldn’t do before because we feared getting out of our comfort zones… If the best treatment for the Werdning-Hoffman illness is in Florida, we will go there. Nothing is impossible as long as there is belief. But for now, baby steps… Focus on healing the lungs… The rest will follow… Step by step.