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| Sporting some fabulous crocs--the boy loves "monsters" |
About a month ago now, Beckett spent 4 days in the hospital for some testing on his GI tract. He had an endoscopy, colonoscopy, and colonic manometry. (Click here to read about that hospital stay)
The purpose of the scopes was to see what his system looked like inside. The doctor was looking for inflammation, swelling, different types of food intolerances, etc. These tests were necessary because he has such terrible distention in both his stomach and colon. He also has blood and such in places you shouldn't. Unfortunately, the scopes did not give us any further answers as to what is causing these problems. This doesn't actually mean that there is nothing wrong, because the horrible symptoms are still there. It really just means that we do not know what is causing the tough symptoms.
The purpose of the colonic manometry was to determine if something called a cecostomy button would be a good option for him. A colonic manometry is a test that basically sees how the colon responds to pressure and if it moves like it should. If his manometry was normal, this would indicate that a cecostomy button would work for him. A cecostomy button is a small button placed at the cecum (a part of the colon) that we would use to flush enemas through his colon. They use the appendix and part of the intestine to create a "tube" in which to access the colon. This would basically just re-route an enema so you do not have to go from the bottom up. His manometry was normal, indicating that the cecostomy button could be beneficial for him.
During all of this, we were communicating with the doctors that we have worked with in Cincinnati. We thought that if we were going to do a surgery, we would prefer to do it there. We kept them updated on the testing and imaging and everything like that. Our doctor there actually scheduled to do a Malone procedure. This procedure uses the appendix and some intestine to create a tube in which to administer enemas (just like the cecostomy button), but instead of using a button on the outside of the body, they go through the belly button. In addition to this procedure, they were possibly going to remove some of his colon. We were scheduled to be there for about a month.
The idea of the logistics of all of this was a bit overwhelming. It would be much more difficult to travel for the surgery--a bigger stress on leaving Brant, finances, and Kyle having to balance work with traveling to Cincinnati. We were in prayer that God would give us clarity on whether or not it was necessary to travel to Cincinnati for the procedure--a procedure that technically can be done at any of the hospitals in Texas. It was a constant prayer...you know, the ones that are on the front of your mind all the time as you go through your day. Constantly asking for clarity on this decision. Well, within a few days, Cincinnati looked through more of his imaging and decided that their program would likely not help him. They actually cancelled the surgery. And while at first, this felt discouraging, we soon looked at it as a very clear answer to prayer. God said no. And we truly believe that He was answering our prayer and making it an easy decision for us. Perhaps it will be better for all members of our family to stay local or perhaps we need to find another hospital to travel to. But Cincinnati is not the place for Beckett at this time. However, I will not say that we will never be back there, because no one knows what the future holds. But for now, it is not where we need to be.
Last week, I took Beckett to Houston for a genetic appointment at Texas Children's. We have chosen to keep his geneticist and his pulmonologist (Cystic Fibrosis specialist) at Texas Children's for the time being. On our way down there, we had a bit of a scare with Beckett. It was roughly an hour after his morning enema, and he started trembling and grunting/panting. I thought that perhaps he felt as though he needed to go to the bathroom. However, this lasted quite a while, and then his head kept falling forward. He wasn't responding to me very well. Just staring. Brant was with me as well, and he was trying to keep Beckett awake but was not having success. It was one of the most helpless feelings I have had as a parent. I immediately got his nurse on the phone, and over the phone we were able to check his responsiveness and stimulability, etc. We decided that he was stable. It was determined that I should keep going and try to get to Houston, but I needed to stop and check his temp every thirty minutes.
After I got off the phone (I was pulled off of the road in the middle of no where for all of this), I just held him in my arms. His body was weak and he just layed over me. And I just prayed. Brant was sitting there with me. And we just prayed for this sweet little boy. In that moment, several thoughts were whirling through my mind. One thing I always think of when it comes to Brant is that I don't want to scare him or worry him. I know that he is watching me and my reactions. But at the same time this was our current reality. So I tried to keep it together, and lift little Beckett up in prayer. I looked back at my 5 year old (who is wiser than his years and has had to learn more than most 5 year old boys), and he had stopped what he was doing on the ipad, and had his little head bowed. My prayer for Brant is that all of the ups and downs of this does not cause him anxiety but teaches him unconditional love. I ask that as he sees things many children do not, will you please keep Brant in your prayers too? This will not leave him unaffected, and my prayer is that it does not negatively affect him, but instead teaches him about faith in our Lord.
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| Very proud of his gardening! |
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| So proud of this boy! |
So now for the amazing part of the day, within 2 hours, Beckett had snapped out of it. His fever went from 104 to 97.9. He was still quite pale with very dark circles under his eyes, but he was talking and wanting to eat. We took him to a doctor who could find nothing wrong with him. Unfortunately, the thought is that his giant, high volume enema caused his body to go into a sort of shock. Not good considering that his body is dependent on them. The senna (ex-lax) burns his skin and the enemas are very hard on his little body. We are working towards a solution for this.
So after our adventuresome trip to Houston, we had a fairly uneventful appt with the geneticist. I will do a separate post about that soon. They are very confident that he must have something genetic-in-nature going on.
On Monday morning, I will leave early in the morning to take him to a GI appt in Southlake and then Tuesday morning we will see a surgeon to discuss the possibility of a cecostomy button. Please be in prayer for us during these appointments--for safety in our travels and wisdom in the doctors and endurance for us. Please pray that we will know what the next steps need to be. Honestly, something really has to get better for him.
Oh, I forgot to mention that we have pulled out the NG tube. The GI doctor does not think that it was benefiting him. So he is happy to have no more tubie taped on his face. However, now that he is not getting these fluids over night, that could be what is causing the problems with his enemas. We will see what the doctor says next week.
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| And he is super proud of his new monster jammies! |
Thanks for following this very long post! I know I threw a lot of info at you, but I wanted to try to update you the best I could. I wish I could say that I hadn't posted in so long because all was going so well. But in reality, I felt to tired and frustrated to put words to it. Thank you for your continued prayers for our family as we try to figure all of this out.
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