Tuesday, October 18, 2011

{Surgery Day Five & Six}

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Wow.  This hospital stay has been filled with so many ups and downs.  Yesterday was feeling like a rather down day.  Angela is not tolerating any feeds given by mouth or by g-tube.  The issues with the feeding by mouth is to be expected.  The surgery altered the way her swallow feels and if you add on inflammation in her esophagus as well as her floppy tone it really makes for a difficult obstacle for her to deal with.  I have all faith and hope that she will once again be eating by mouth.  It will come back better than ever but it's going to take time. So for now we need to come up with a plan.

Since the g-tube feeds are not working do to her poor motility and also the fact that she is still healing from major surgery, we are going back to the J-tube feeding.  This basically is just a longer tube that will bypass her belly.  This worked for her before and I know it will again.

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There are a few other issues that we are learning about Angela that we need to address, which are things that just got missed until now -- her first stay in the hospital.  Right now Angela is being seen by the surgery service but tomorrow she will be transferred to the Diagnostic Referral Team, which are basically the team who takes care of the kids who are complex and need management of numerous specialists.  This is very hard for us as this is the team that took care of our sweet Gavin.  But Angela deserves the best care and we will do what she needs. 

Angela is having some blood pressure issues as well as some possible obstruction at night which is giving her destats in her O2 levels.  Some of this is just from surgery and will hopefully resolve -- but we still need just to make sure.  She is also having issues with choking on her saliva, but today she actually seems to be doing better handling her secretions.

Thanks so much for all the support you give us.  We are so lucky to have the massive support standing behind us.  It truly enables us to live this life.  In a few days we will be back to normal life - lovin' every moment of it!

7 comments:

tam said...

you are all so loved!

Anonymous said...

Hi there!
I wanted to mention a great strategy I have used to transition from J to G feeds without supplemental IV fluids. Once at full J feeds, introduce simultaneous G feeds at a very low rate and then go down on J and up on G as tolerated. Such as: 40/hr J 0/hr G then 35/hr J and 5/hr G and so forth... Seems to help some super sensitive tummies I have known as well as kiddos with small stomach volumes! Hope this helps!
Shelby from VA

Anonymous said...

Hi. I've been following your blog for several years now. I have a son with special needs and have experienced some similar "issues" with feeding tubes, etc. He, too, has a Nissen and g-tube. He was having vomitting trouble every feeding for over a year. After several endoscopies and swallow studies that showed nothing wrong, his formula was finally changed from Pediasure to Nutren, Jr. during a hospital stay for something else and finally his feedings went well. His "on call" GI doctor said that Pediasure can curdle in the stomach and cause vomitting. I don't know if this has anything to do with Angela's troubles, but thought I'd offer it as a suggestion - after over a year of trying to figure out what was wrong with my son's feedings - I can understand your concerns for your precious little girl. Praying that this is resolved soon and that she is feeling better quickly!

Jessica from NC

Phyllis said...

Thank you so much for the daily updates. I am so glad to be able to keep up on how your family is doing and to know what specific things to pray for. I'm sprru this hospital stay has presented with some unwanted surprises but hoping the end result is better care for Angela. Thinking of you often!

Lisa Marie said...

we are sorry it has been rough this hospital stay... but we trust that you will be back home and on your feet enjoying your precious life together again asap! We will keep Angela's continued healing and her trouble with feeds in prayer... it sounds like you have a wonderful set of doctors. We are looking forward to meeting her next month and seeing you all again! You are wonderful! God bless!

Anonymous said...

Angela has Gavin's eyes :)

Karin w said...

Ask the doctors for Rubinal for her secretions. it's helped our daughter, she takes it 2xs daily.