On Monday (July 9) at 10:30am Eliana will be having an Upper GI to check for any malformation of her intestines. None of us think that there are any problems there as there is no evidence to indicate problems. The surgeon needs to know this prior to surgery as he would try to fix any additional problems while he was "in". As best as I understand she will have some sort of liquid/formula with barium in it put in to her tube. They will use an x-ray to see how the fluid travels through her body.
She will also be having a swallow study done. This also involves barium in her formula, but clearly she will need to swallow this. There will be a feeding therapist there to help her, though it isn't "her" feeding therapist. I am praying that she would eat enough at that point to give them the information needed to see her swallow. Any problems with reflux (not making it completely to her stomach and/or coming back up which would irritate her esophagus) or aspiration (going down into her lungs) should be able to be detected. Again, we see no signs of this outwardly, but are checking to be sure. She is currently taking Prevacid to help in case she is having reflux. If there are no signs of this on Monday she will stop taking this med.
She will need additional pre-operative work done next week. I'm not sure when all of that will be done. I was asked if we wanted to do all of this in one day, but that seems like a lot for Eliana. I'm guessing she isn't going to be too happy about the GI/swallow and to add blood draws and a sedated echo (to check her heart) would be a lot in one day. Since we live close to the hospital, coming another day isn't a huge problem for us. We are still tentatively scheduled for Tues 17 July for surger. This might change depending on what the pre-op testing shows.
Hmmm ... this is kind of a boring, factual entry isn't it?! I appreciate all of the encouragment ya'll have given me about the last entry on "the bow". An interesting aside from all that I've been through with Eliana has been this writing. I've never been much of a writer. I've kept sporadic diaries or journals, but have never been consistent. I didn't find the time to do it and didn't really "get" why people would want to blog either. I just didn't understand. The one area in which I have written is in my scrapbooks. I do a lot of journalling there as I do love having the whole story to go with the pictures.
Also in terms of the ability to write, I've never had any confidence about my skills. I don't remember much about writing in high school. I certainly don't remember ever being praised for anything I've written. My senior year I took some test (don't remember what it was) that was given to people in the honors English class. I wasn't in the class and am not sure why I was allowed to take it. Anyway I scored well enough on the test to be able to skip the freshman English/writing class in college. My score wasn't "high" - it was just high enough to exempt out of the class. I always felt that I had "gotten away" with something. That somehow I had tricked the system. This led to me having great doubts about my ability to communicate through the written word. I've since thought that while I can typically communicate clearly that my writing is just that - clear but not really any good.
Now, reading that last paragraph maybe I'm right. LOL My grammar skills aren't the best as I really don't understand the technicalities behind all of the parts of speech. When I write I just try to put my feelings down on paper (or screen). I'm not trying to write anything amazing, but just to share my heart.
I'm not sure I explain what having this blog has done for me. It has brought me comfort and hope in the forms of prayers and encouragment from so many people. I've gained information on a variety of medical issues that we are facing. I've also gained some hope in my ability to share my thoughts and feelings. Just writing through my emotions has helped me. It has been good to get everything out. I believe too that being able to look back at this journey will be something I treasure. The details that I might have forgotten are saved. I'm thankful for this forum and the opportunity to share. I'm thankful for you dear friends that care about Eliana and our family.
My heart is full and I am very blessed. Maybe ... maybe one day I'll consider writing a book. That seems pretty far out of my comfort zone though. It would have to be something God really impressed on my heart as I have no idea how to even begin to do that. For now, I am thankful to know that my experiences and emotions as we walk this new path are something that does occasionally serve to encourage and bless those that are sharing it with us. How good is God that He would use me? It humbles and amazes me that He would do that. It encourages me to see how He orchestrates the details in my life and in others so that we can see His hand at work. I'm thankful to know that He loves me and that He uses so many other people to show His love to me every day.
With love,
Leslie
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Praying for what is ahead of you and Eliana!
ReplyDeleteDear Leslie,
ReplyDeleteI have been reading some of your blog entries and have found myself both encouraged and inspired. You have such a gentle way of sharing. Thank you for your honesty.
God is so good. He has blessed you with such a lovely family - they are all gorgeous.
To read your entries, you woudln't know English wasn't your major in school. You definitely put your thoughts down on paper in a clear and succint way, which is what a good writer should do. I think sharing from the heart is what makes the difference to how well a person writes.
Don't give up on your idea to write a book. It is not that hard (actually, it is not that easy either, but it is not so hard that it is out of the question for a regular mum) and your journey would be such a blessing to others.
I read a book by Don Aslett, called: "How To Write and Sell Your First Book," and he makes it sound easy. Of course anything worthwhile will take a lot of work, but it is doable.
I have 9 children at home and I have just written a book about our journey through our baby's death. I only mention this to encourage you not to give up on the idea. If it is the Lord's will He will give you all the help you need.
I just wanted to say again how much I enjoyed your site - you have a sweet family.
Leslie, I have been reading your blog on and off for months now (I am on MOMYS) and just checked it again after you posted on my blog (http://www.homeschoolblogger.com/ourquiverfull). I wanted to encourage you about the g-tube. Getting that tube is one of the best things we ever did for Noah. Once it has healed, there is nearly no maintanance. You'll feed her the same way you did with an NG tube, so you have already learned the hard part! The tube is difficult for babies to pull out, so you won't have to worry about that. One thing you will want to do is make sure that she has outfits that snap at the crotch - either little rompers or you can get onesies to put under her dresses. We got some sleevelss onesies since it is so hot here. You don't want outfits with a top and a bottom that could leave her tummy available. This isn't because she could pull it out, but she could fiddle with it enough to irritate it, and if it is exposed it is more vulnerable to infection/getting dirty, etc. You will just run the tube over the top of her diaper waistband and put the diaper tape over it to hold it in place, then snap her outfit shut with the tube coming out of her leg hole. It isn't hard at all.
ReplyDeleteYou might have something called granulation tissue, esp. about a month after surgery. This is raised red tissue that can grow up around the tube. Your surgeon's office can treat this with some cream or cauterize it if needed. Most children only need it cauterized one time.
I had to get past being a little squeamish at first, but after a day or two I was fine. You need to clean around the tube with a wet washcloth or cottonball, and it is a little yucky at first, but it will heal fast. If you have any real trouble with it not healing well, or having lots of granulation tissue, email me and I can send you very helpful detailed info about how to pad and lift the tube. Since I am in the hospital with Noah, I don't have access to that info or I would just email it to you now.
Noah needed a good bit of pain control for a couple of days, but then he bounced back. Once the tube is healed she won't notice it is there. She can bathe, lie on her tummy, etc - whatever she did before. Again, really the biggest adjustment is dealing with tubes in the first place - so you are way ahead of the game and I think you will find this to be an easy transition.
Find out if her tube will actually stick out of her tummy like a tube or if it will be a flat button. The buttons are better. Noah's is just a little brown button and we click the tube to the button. Granted, he is on 24 hour continous feedings, but when we do unhook him for a bath or whatever we don't have to worry about a tube hanging there. Since you won't have continous feeds, you will really want the button because there will be plenty of times she won't be hooked to anything. Usually there is a tube hanging out for a few days after surgery, then they clip the tube and snap on the little button. Every 6 months or so they do need to pull out the tube and pop in a new one. This is just done in the surgeon's office by the nurse.
We didn't have the Bard procedure. Noah had his done endoscopically so I can't tell you much there. I feel like I have written you a book LOL, but I tried to tell you everything I wish I had known before Noah's tube placement. I can't really get email right now until we get home from the hospital, but if you have any other questions just post on the blog and I will get back to you.
Blessings,
Kate (and Noah!)
Awww, Leslie! I love to come and see your updates. I believe that God has given you the gift as well as the ability of articulating about Eliana for "such a time as this." He knew what you needed -- to "get it all out"...as well as the HUGE encouragement and testimony of your faith to so many of us. God is good! He is using you, dear friend, and I'm so glad I've been allowed this little "peek" into your lives and all that He is doing. To God be the glory!!
ReplyDeleteI am so sorry for the loss of your child. It is such a heartbreak! ((((Amanda))))
ReplyDeleteThank you for your words of encouragment and the information that you shared with me! I appreciate it all greatly. I will definitely look into that book. Perhaps it will be the prompt that I need - or one of them. :-)
I am encouraged that anyone would find my words of our journey to be something that blessed them. That is truly God working and not anything that I have done. I am amazed to see Him working in and through me. It is a privilege to be sure.
Praying for you as you grieve dear sister.
In His Love,
Leslie
Thank you so much for your words on the g-tube. There is so much I don't know. The little handout really doesn't answer some of the questions or give the helpful details (like the onesies) that we will need.
ReplyDeleteIt is always encouraging to hear that the g-tube has been a good thing for other people. I'm really hoping it will help Eliana.
Yes, we do have a button. It's a very flat one which will be nice.
I'm sure I'll have more questions in the future and would love to learn more from you. Thank you for being willing to share with me! ((((Kate))))
Praying for ya'll too!
In HIs love
Leslie
Hollie and Candace,
ReplyDeleteThank you faithful friends for your prayers and encouragement. Your words feel like a great big hug!
Love,
Leslie