Thursday, March 22, 2018

Bunny Update

I’m bloging from my phone in the hospital, so hopefully this works !

First of all, thank you so much for all the love and prayers on my last post - I’m so glad to have long time faithful readers still here supporting us. You all are the best !

Tuesday morning we came up to Doernbecher Children’s Hospital to see the pediatric pulmonologist .. the first thing he said when he walked in the room was that neither he nor the radiologist felt the mass on Madison’s CT scan was anything other than very swollen lymph nodes due to her ongoing pneumonia episodes over the last four months. I can’t even describe the relief we felt with those words. He went on to say that he believes this is a result of chronic aspiration - even though we were thickening all of Madison’s liquids, everything he saw indicated that she has still been aspirating. He immediately called the pediatric department at the hospital to see if they could get us admitted, but there were not beds available. We went back home (2 hours away) to get things situated with our kids and Wednesday afternoon the hospital called to say they were ready for us. We checked in last night and Madison had an IV put in for antibiotics, and this morning she had a swallow study done.

If you’re not familiar with a swallow study, it’s pretty simple - a speech pathologist and X-ray tech work together to take live images of Madison swallowing different consistencies of food and liquids. What was discovered was that Madison is continually aspirating on all liquids, even thickened ones . This is a different result than what was show last August, and obviously is the reason she has had six bouts of pneumonia since December. She showed absolutely no signs of aspiration while she was swallowing- she looked as comfortable as could be - which is called silent aspiration and which is why we have had no idea that all her liquids are going directly into her lung.

Right now we are waiting to see if the ENT, pulmonologist and anesthesiologist can coordinate their schedules tomorrow to do a bronchoscopy and endoscopy on Madison ... it may be that she has a cleft  in her esophagus that is causing this aspiration (we are actually hoping that is the case because it’s taxable !). If she does have this cleft, they will repair it while they are doing the procedure. If she does not, then she will go home on a feeding tube and we will be working with a speech pathologist on helping her to learn how to swallow better - and it could also be that she just needs time to develop  this skill .

So for a few hours we wait to see what the plan is, but right now she is sleeping comfortably now on daddy’s tummy .. I am feeling sooo relieved that we have answers !!!

I’ll blog again more when we know what is happening, but thank you against for your love and comments and prayers - we appreciate it all so much .

Xoxo Patti

13 comments:

Martha said...

My granddaughter also had silent aspiration and dysphagia (inability to swallow correctly). They put in an NG tube when she was about 6 months old, and a G-tube when she was almost a year. She was entirely tube fed for about 4 years, other than a few bites here and there to keep her interested in eating, but it didn't count towards nutrition. She spent a month in intensive in-patient feeding therapy two different summers, and now eats 4 meals of purees a day, with one tube feeding. She is now almost 7. She just recently got cleared for thin liquids.

It's a journey, but we all learned to cope. My husband and I learned how to do the tube feedings so that we could babysit her, and her teenage sister learned how to do it, too.

The oral feeding protocol was very strict, and we all learned how to do that, too. Abby has progressed enough that today when their family joined us for Sunday dinner, she sat at the table with us, and fed herself her purees.

Although tube feeding seemed scary at the start, we are so thankful that such a thing exists, as it saved our granddaughter's life. Like your Bunny, Abby never showed signs of distress with her silent aspiration, so it was only respiratory problems that pointed the doctors to the answer.

I pray that Bunny's issues are easily fixable, but if not, just know that she can thrive on a tube, and it doesn't have to be a life-long thing. Prayers for you all.



Mary Lou said...

Patti….
First things first…. I am so glad that you are back!! Your Website said that is was turned into a private Blog…. I missed you…. And your sweet family!! ;)
Second things second…. I am so sorry about everything that you are going through with Bunny’s current health issues!! Hang in there, Mama!! Get better, Bunny!! And, last, but not least, I am sending prayers your way, Friend!! ;-D
Peace out, Mary Lou

Jennifer said...

I'm super slow seeing your posts, but I'm still here. I'm glad the news about Bunny was as good as possible. Best wishes with all you are facing!

Barbara Maloney said...

I am glad you are back and I will pray for your sweet Bunny and for you too!

Cindy said...

I hope Madison is doing better and that it was the cleft. I'll keep her in my prayers. Poor girl...

Mary Lou said...

Patti....
If—and I mean IF—Bunny should need a feeding tube, here is the Blog link to another ‘Down syndrome Mama’ whose Beautifully Unique little girl, Lindie, has a feeding tube….
http://www.aimeebeeblog.com/
Peace out, Mary Lou
PS. They, too, are Christians!! ;)

Faith Kopp said...

When I finally got back onto my emails I had 325. You know I had been sick and was not the least interested in emails, just Instagram. So happy our Madison is doing so much better. Will keep her in my prayers, as well as all of you.

Faith Kopp said...

PS so happy to be back in the blogger loop.

Jeanne said...

Been praying for your family - saw several at Conference. You are so correct that God is in control. Much love and prayers.

nikki.curnutt said...

I have missed your blog posts SO MUCH, Patti!!!

Praying for sweet Madison and your family.

Rosetta Zimmerman said...

I really missed your blog and hearing about your daughters with designer genes..as I am a mom to one as well!!
I will pray for your Bunny that her issues can be resolved and that God would touch and heal her and if not that He would give you answers and that you would know how to work with her issues!! God bless n love n prayers!

Maria said...

Oh, Patti!! I just saw your comment on Kelle's blog & clicked on your name & it brought me here. I cannot tell you how often I've thought about you & tried so hard to contact you. I was so worried. It's so incredible to me how the connections we make through social media become as important to us & the connections we have in our real, everyday life. I'm so sorry to hear about Madison's troubles. I am praying for everything to resolve quickly for all of you. So glad, you're back. I'll be checking in for updates & pictures of your glorious family. Much, much love.
Maria

MyMy said...

Dear Patti, please keep us the followers updated so we could know where our prayers are needed... Missing you here.