Sunday, December 30, 2007

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.

4 comments:

Nate said...

I enjoyed your writing about Deedee's situation. I too must suffer through a life of SMA as I am the father of one normal child and two girls afflicted by SMA, one of whom has already passed away.

I am intrigued by a couple of things you wrote about, the first being the "fish bowl." Never heard of that treatment before. :/ Second, there are many resources out there for SMA families and a few incredible hospitals as well. I am not familiar at all with one in Tampa, but I am VERY familiar with a few others. Have you guys found information at www.fsma.org, www.smasupport.com, or www.fightsma.org yet?

I also invite you to visit my daughter's site if you up for a read (I'm also an avid blogger!) at www.hopeforemily.com. There are some great support networks out there, so feel free to reach out to them.

Peace - Nate

shannonkuester said...

My name is Shannon and I have a daughter who is SMA type 1, we live in Hartord WI in the USA and we see a doctor who specializes in SMA here in Madison WI, her name is Dr. Mary Schroth. I know she is on vacation this week, but I am sure she would be more than willing to talk to you and your daughter's docs. My daughter was diagnosed at 6 weeks of age, we knew something was wrong by 4 weeks. She is now 15 months old. She is not on oxygen. She lives at homewith her daddy, me and her big sister (sma free). We have a lot of medical equipment in the house for her (a cough assist machine, a bipap machine, a nebulizer machine, a suction machine, and oxygen tanks for emergencies). But once you have been trained properly on how to use it all, it becomes second nature and we love having our little princess here with us. We do the things a normal family does, we go to the zoo (my daughter has a wheelchair that allows her to lay flat or sit up- Easy S Max by Exomotion) we go for walks, We play with adapted toys, etc. I know things are so hard in the beginning with this diagnosis, but I promise, it does get better! I highly reccomend checking out the sites that my friend Nate posted in his comment. SMA support hasa chat group you can join and talk with other SMA parents and get important inormation about treatment, nutrition, supplies, doctors, etc. I truly credit this group of wonderful people to my daughter still being alive, I have learned so much from them! Good luck, give your pretty DeeVa hugs and kisses, we are thinking of her! Please feel free to contact us, my e-mail is shay@justintime.org

Shannon Kuester
Mom to Haley (age 3) and Addison (15 months SMA type 1

Sarah said...

I wanted to tell you that I have a 9 month old daughter with SMA so I can also sympathize with the frustrations you are probably experiencing through the hospital. We spent our share of this year in the hospital trying to get things worked out for Stella. Your comment about SMA being a "death sentence" feels that way before you get some good help for your little one. I saw Nate's posting and wanted to encourage you to look at the sites and you will find that there are things you can do for your little miracle. When we were first told of Stella's diagnosis when she was just several weeks old, they said that she would live weeks or a few months. She's 9 months old and I can say that with some good therapies with her Bipap and CoughAssist, she seems to be doing pretty well. Yes, our lives have changed but we cannot imagine life without out daughter in it, so we are willing to try.
Would your doctors be willing to correspond with some of the experts listed on the SMA websites? These doctors would be able to explain when and how to know how much O2 is necessary (you don't want too much) and could explain the benefits of the equipment I mentioned. Best of luck to you guys! We are thinking of you and will check back in.

Nate said...

Hey Vierna! So glad you found your way over to our blog - thought I'd post here again! There are some great resources out there for SMA families and we are more than glad to share our experiences with you. Emily is our second daughter with SMA, so we've been working the system for a while now. Feel free to contact us at your leisure!! nathan@hopeforemily.com