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We Are Home and There Is No Place Like It!

August 06, 2011 by Victoria Strong

We are home! We are home! And everyone is doing fine. Gwendolyn is such a trooper, but she definitely had enough of being poked and prodded and beamed from ear to ear as we marched out those hospital doors -- in a Dorothy dress no less and with new toys and balloons. (Thank you Lunt and Gooden families!)

The great news is the issues seem to be a combination of relatively minor problems. But, SMA stinks -- really stinks. Because SMA is a degenerative disease, the gift of time means Gwendolyn is faced with new issues as SMA impacts more areas of her life. And because she is now bipap dependent, all her energy goes to breathing and she no longer has much capacity for anything extra. It seems Gwendolyn now has a neurogenic bladder meaning her muscles are no longer strong enough to fully empty her bladder causing chronic infections. She's had urinary tract infections many times and while they definitely impact her strength, she always felt much better within a day of taking antibiotics. But they are starting to become more frequent and the doctors believe she is now having constant infections due to urine remaining in her bladder. Gwendolyn's pain threshold has always been really high and because she cannot verbalize it is often difficult to tell. And she never spikes a fever. So, the plan is to have her on a targeted antibiotic -- Furadantin/Nitrofurantoin -- all the time. While we don't love that Gwendolyn will be on antibiotics all the time, our hope is that ultimately this may mean she will regain some respiratory strength once she is no longer coping with constant infections. The other option is to catheterize her to allow her to urinate. We do not like this idea at all because Gwendolyn has never been able to be catheterized. They have tried multiple times and either due to SMA causing low muscle tone or due to an anatomical abnormality, it is has never worked -- and it hurts. If far more qualified nurses can't do this, how in the heck are Bill and I going to do this at home. So that is out. The really good news is that her kidneys and liver look good and they don't think she has scarring from the multiple infections.

Gwendolyn has also been having nose bleeds lately and we have been suctioning blood from her throat and removing ginormous dried blood plugs from her nose -- so big that they were certainly causing breathing trouble. We were worried this was being caused by constant bipap use (which we've always been warned can happen). Dr. Yuan wanted a scope done by an ear, nose, and throat specialist right away to find out and the really great news is Gwendolyn's nose does not have any long-term trauma. We were so relieved. She does have a small cut in one nostril, thus causing the bleeding, but this is expected to heal with time.

There were a few other concerns and Dr. Yuan is always so up on all the bigger picture things going on with SMA that we had those looked into as well. It seems Gwendolyn may also have some hormone imbalance issues, but there isn't a lot known about the cause. One theory is that SMA children are under so much stress :( But in the scheme of SMA concerns this is on the back burner and there isn't anything we can do about it anyway. Because SMA Type 1 children are now living much longer (thank goodness), many issues are occurring that are still unstudied -- but as more children have them they are starting to seem SMA related. It is always interesting being in a research hospital of the caliber of Stanford. As these things come up they rarely dismiss them and instead ask questions, discuss as a team, reference findings and discussions with SMA colleagues at other institutions, and several times we heard, "We need to study this." We have such enormous respect and appreciation for the people who dedicate their lives to caring for others and helping solve medical puzzles. (Interestingly enough, there was a research report around urinary issues on children with spinal muscular atrophy done in 2001. The sample is small and the children were older than Gwendolyn, but doctors pointed to it when talking about what is going on with Gwendolyn's chronic infections.)

We are all doing fine. Really. We're exhausted and are taking turns catching up on sleep, but SMA certainly gives one perspective. This was nothing -- a minor blip in comparison to what so many other parents are facing. We knew we were in good hands at Lucille Packard and so appreciate how everyone there treats us and Gwendolyn. And we feel so very supported by all of you. Thank you so very much for caring about Gwendolyn and our family. We read every comment, every email, every text, every facebook comment and your kindness truly helps. Thank you so very, very much!

Talk About It

Fantastic news!!! Lots of love to all of you!!!
Posted by Laurie on 2011-08-06 19:19:14
Soooo glad to hear you guys are home!!! SMA truly stinks!! Hang in there guys!!! Sending big hugs your way!
Posted by Jennifer Garner on 2011-08-06 19:21:10
So glad to hear you have busted outta there! Keep getting better, Gwendolyn!
Posted by Jennifer Swann on 2011-08-06 19:23:51
Welcome Home, Sweet Girl! Hope you feel better with each passing day. Lots of love to you and your Mommy and Daddy!!
Posted by Potters on 2011-08-06 19:26:41
So happy to hear you are home! There truly is No Place Like Home. Gwendoly, Victoria, & Mark you are in our hearts, on our minds, and in our prayers. We pray sweet peace and rejuvenation!
Posted by Kate Ramsay. on 2011-08-06 19:34:03
AHH- we are so happy and relieved to hear you are home and doing better. You have been in our thoughts constantly and hoping you all regain your strength soon. Lots of love to you three!
Posted by Bob and Lisa Wilcher on 2011-08-06 19:44:50
So glad to hear you guys are home. Have been thinking about you.
Posted by Legally Fabulous on 2011-08-06 19:47:21
Such great news!!! Gwendolyn has been in my constant thoughts and prayers!
Posted by Tera on 2011-08-06 20:37:12
Doing the happy dance here in the Needham household and as we are doing it, sending bundles of love your way! Rest, while you are able. Snuggle, watch movies, read books and bask in the beauty of home.A I know you will.
Posted by Zoey's mom on 2011-08-06 20:44:58
Oh I'm so, so glad you guys are home! I've been thinking of you and praying for G all weekend. I am so very glad that the staff at Stanford is so smart, caring, and thorough. I know it must be such a relief to have her under such great care. They sound wonderful. Rest up and enjoy the rest of the weekend at home smile Love you guys!
Posted by Theresa Portugal on 2011-08-06 21:07:54
So happy y'all are home. Praying the antibiotics work long term.
Posted by Tammy Duke on 2011-08-06 21:18:42
I am so happy to hear that you are home and could get some decisions made regarding Gwendolyn's care. Get some rest. It's never easy to sleep in the PICU! Sending you lots of love tonight! I love that she went home in her Dorothy dress...how appropriate! smile
Posted by Jessica Gustafson on 2011-08-06 21:20:05
To know that Gwendolyn and you are in the hands of such extraordinary doctors is humbling, encouraging, and thrilling! They seem so on the cuttting edge of everything SMA! You must all be absolutely exhausted, but so relieved to be back home, comfy and cozy; we are so incredibly relieved as well, and send huge hugs to all. Oh, and Gwendolyn looks SO adorable in her Dorothy dress!!
Posted by Sheri on 2011-08-06 23:08:43
Thanks so much for the update. You know we are with you in love and prayers. Angel Andy's GiGi
Posted by Rosemary on 2011-08-07 04:16:11
YAY!!!! There's no place like home! So glad to hear that you have all come home. Fingers crossed for lots of rest .
Posted by Kristen on 2011-08-07 07:05:38
Ahhhhhh no place like home.
Posted by Margaret on 2011-08-07 08:07:28
I would strongly suggest looking into adding d-mannose into her diet. It prevents bateria from sticking around where antibiotics just kill the bacteria the d-mannose prevent it from growing in the first place. Maany people who suffer from reccureent infections usually mean that the abx never killed the bacteria in the first place. D-mannose is a sugar from cranberry and all natural so no more chemicals! Good luck
Posted by claire on 2011-08-07 12:03:34
So glad to hear you are home, there truly is no better place to be! Praying for continued and increased strength for you all and for G to continue her healing path!! Hugs, Em
Posted by Emma on 2011-08-07 14:05:25
So, so happy to see this news. Thank you for the update. And so glad things are looking so positive.
Posted by Michele on 2011-08-07 14:44:56
((((((VICTORIA, GWENDOLYN and BILL)))))))) Thanks for the update! Praying for all three of you as you continue to venture into the unknown with G and the SMA smile XOXOXO
Posted by Kelly DeBardelaben on 2011-08-07 15:24:12
So glad to hear!
Posted by bridget on 2011-08-07 18:31:51
God Bless you! Hugs to Gwendolyn!
Posted by shannon on 2011-08-08 12:05:29
SMA stinks. :( Glad to hear you are home and that you are doing okay. Sending lots of love and prayers your way.
Posted by Holly on 2011-08-09 00:11:08
Great news!!! Hope you can get some rest and feel the full joy of being back home. There is not place like home. I wanted to share a couple of y favorite quotes from Wizard of Oz with Miss Gwendolyn . . . "A heart is not judged by how much you love; but by how much you are loved by others" "There's no place like home," --Frank Baum's 1900 fantasy The Wonderful Wizard of Oz. . --Mari
Posted by Mari on 2011-08-09 14:09:10
So happy you all are home. grin) xoxo
Posted by Debbie on 2011-08-09 20:00:12
I have a suprapubic catheter due to neurogenic bladder problems - suprapubic means 'over the pubic bone' - it is an incision, just like a g-tube only for getting the fluids out rather than putting them in! It solves/avoids almost all of the typical problems with catheters, including difficulty with insertion (as your tube just stays in, for 3 months at a time) and reduces greatly the risk of the catheter itself causing infection. I wear a collection bag on my leg, strapped over my AFO with soft velcro - nobody knows it is there unless I tell them. Without my catheter I would be incontinent and have to wear bulky pads, an extra bonus. I think that it would be a good idea to talk to G's doctors about whether this may be an option (it can be done under local anaesthesia so is low-risk) as long-term antibiotics can bring all sorts of problems, especially if Gwendolyn continues to do well and lives for many many more years, as we all hope she will. Sending thoughts of love and strength, Becca
Posted by Becca on 2011-08-13 06:39:17

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