Thursday, December 9, 2010

Re-Defining Normal. Adding an NG Tube to Combat Reflux and Failure to Thrive.

Today I went to the hospital optimistic that today would be the day that Jacob would get to come home (again) to us.  Even though he had been throwing up for the nurses, I had not had the same experience since we'd been in the hospital and I was using the speech therapist's 37-step (OK, slight exaggeration..but only slight) feeding process for Jake.  It was my goal to show the doctor that, even though Jake has been throwing up for the nurses, he has not been throwing up for me because I have the time to devote to holding him for the hour he needs after his feeding to keep his food down. 

All went well up until 5 minutes before the doctor came in (seriously, we were only 5 minutes away from redemption!).  Then, 30 minutes after his afternoon feeding, I moved slightly, putting Jake on his back slightly and causing him to begin spewing all of his formula all over the room.  In his defense, I HAD moved him in the wrong direction.  And, from an entertainment perspective, it was AMAZING to see all of that formula spewing out of his mouth - I think he projected about 3 feet a couple of times.  From a concerned mother point-of-view, I couldn't help but deny that 1)  I didn't have the magic touch after all and 2) His vomiting is actually getting worse instead of better.

I sat down with the doctor for about 30 minutes and reviewed the options for Jacob.

1) We can insert a tube down Jacob's nose, down his throat, past his stomach and into his intestines.  This tube would give him the nutrients and the food he needs to gain the weight necessary to have his surgery, which she estimated would be about 2 months away if we use the feeding tube.  A few of the up sides included that there would be no cutting: they insert the tube through normal channels and would use a flexible tube that would not be uncomfortable for Jacob, but because it's easy to insert it is also easy to remove, so we'd have to keep a close eye on him to make sure he doesn't pull the tube out of his nose.  It also means that the reflux will not be an issue because they will be bypassing the stomach all together and going straight to the intestines.  So the throwing up will not be an issue while the tube is in. On the down side, it requires a constant drip, which means we can't just feed him a dose and be done for a couple of hours.  He's being fed all the time and may even forget how to suck if we don't continue to feed him little bits via the bottle.  But it would also mean that he might be able to come home as soon as tomorrow afternoon if he proves that he can tolerate the tube.

2) We could put him on ANOTHER medicine.  Dr. Moon explained that the medicine would help the stomach drain quicker, but it wouldn't completely alleviate the reflux issues.  She also informed us that the medicine they had in mind was recently black-boxed with a warning that it may cause permanent brain damage in some children. Because I STILL believe that 80% of this current problem is a result of his heart medications, I'm not comfortable with introducing yet another medicine into his cocktail of drugs - complete with interactions, side effects, and who knows what other effects it could have on him.

Jake with his NG Tube, FINALLY sleeping soundly

3) The third option she presented is that we could stay in the hospital and continue to try to get Jacob to increase his endurance until he can consume enough of the formula and keep it down on his own.  However, that means that we have to stay at the hospital for an unknown amount of time until he reaches the goals that the hospital has for him.  All I could think about was my dear friend, Marla, who was having feeding issues with her son in the NICU at the very beginning and how it took them 1 month before  her baby was consuming enough consistently enough that she could leave the hospital. 

KC and I talked about it and it was pretty apparent to both of us that the feeding tube was the lesser of the three evils for us. So, we're  hoping that tomorrow morning, Jacob will have the tube inserted and that he will be able to come home to us in the evening complete with his very own feeding tube and (I'm sure) many more instructions regarding his care, etc.

This, of course means that we will have to redefine what is normal for our family for a while.  We'll be looking at home health-care workers coming in to change and care for his feeding tube and food, more doctors visits, and being hyper vigilant to make sure that neither Jacob, or his dear sweet sister Courtney pulls the tube out of his nose.  Rather than bringing Jacob home to begin his life in our family, we will be bringing him home to focus on preparation for his heart surgery.  There will be no time to relax and just enjoy him. 

I guess now we hunker down, try our best to get him out of the hospital and STAY out of the hospital, and begin the count down until he can get his heart surgery sometime this winter.

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Summers Family said...

Yeah, I love you. I am so sorry that you are on such a crazy ride. I hope you have gotten some sleep as well. I think about you often, and hope that you are not lonely - I wish I could be there to talk with you. Spokane seems so far away when I am housebound.
Joshua is doing good, he is up to 7 lb 6 oz and is slowly increasing his volume. We have discovered that gas drops have helped his rest be more restful.
Let me know what I can do - and when we can chat!

jenny said...

Susan, I am so sorry to hear about this ruff ride you and your little on are on. Gosh, what a mess. I hope that he can be home with you soon and that his tube STAYS in place! That might be tough huh? Thank you for keeping us posted on Jacob and all his info. This too shall pass. Thinking and praying for you and Jacob.