August 14, 2013

UPDATE (8/14/13)

First tag-team post ever (I think):

I (Jonny) will begin by explaining how this morning unfolded. I believe we technically missed rounds this morning, but it appeared as if they saw us come in this morning and most of the team followed us into Beckett’s room to discuss what they’ve already talked about. At first we noticed that his feeds were back up to 135. This was a point of contention last night as it is clear he is not handling that volume very well. So as we left last night they had adjusted his feeds down to only 100 mLs per feeding. Well, we were told that he threw up all night long after every feed. Long story short, the team seemed to be listening to our concerns quite well…except for the “Fellow”. Beckett actually puked right in front of them all again…and pretty chunky. He (the Fellow) kept saying that we need to leave him at the 135 volume and see how he handles it (because they adjusted his calories down 2 points). Our thoughts were “handle it?!”, isn’t this clear enough that he isn’t handling the 135. It’s been an entire week at 135…and he isn’t “handling” it. So I begged for alternative solutions. He basically said there weren’t any. So I asked:
1) Clearly this (gastric stuff) is not this floors expertise. Can we not get GI involved?
2) I REmentioned that one of the cardiologists mentioned this past weekend that they may have seen something like this before and they were able to figure something out. Can we not find him and figure out what you guys tried in the past?
3) Can we not do some good-ole-fashioned research and see what other hospitals have done about this?
I think he got frustrated with us, but to be quite honest….we feel pretty guilt-free about advocating for Beckett in that tone. In fact, some of the team lingered in the room and politically agreed with us (after the Fellow left) that we “aren’t those parents” and that we aren’t “out-of-line”. The morning was actually fairly emotional. I don’t think Leah will mind me saying, but this has been so scary that it has brought her to tears numerous times. We just keep saying to each other “how is this acceptable?” “Why aren’t we doing anything about this?” So we basically adamantly proposed some ideas and took action. Here is where I will “sign it over” to Leah to explain the medical stuff.

First, the nurse agreed that the volume was too much and she knew it was best to lower it. I mean, what is the point of a higher volume if he just pukes it out. So Beckett has been getting the 100 mLs today and doing better it seems. She also decided to run it over a little longer period so he isn’t getting it all so quickly. They did have GI come and they think from what we have been able to explain that the problem is likely one of decreased motility. Basically, Beckett isn’t emptying his stomach after each feeding and then we go giving him another one and he pukes from being too full. So, they are going to change his existing g-tube to a gj-tube. The new tube will not stop in his stomach like the existing one, but rather will go in to the jejunum of his small intestine. This way his feedings will bypass his stomach. The GI doctor said the best thing to help him is to rest his stomach for at least a month and then we can try reintroducing feeds into his stomach. This means Beckett will get continuous feeds around the clock and may produce other minor side effects but they think it will really help in the long run. They are also going to do an ultrasound of his abdomen to check his organs as well as check some labs just to make sure things all look good. The g-tube procedure will be done in interventional radiology and will just require an exchange of tunes since Beckett has already had the major surgery. It should happen in the next few days. We have told them we are pretty desperate to make this better for him so we will try anything that might help, especially since he has to be on this special formula for a few more weeks still. They are also going to optimize his reflux meds to help with the acid in his esophagus and hopefully help him be less irritable over it. We pray these things make a big difference, and we are SO grateful for a plan.

There just comes a point when enough is enough and last night was that point. We know they will continue to try to find answers, and we will keep fighting to give Beckett the best! After all, he deserves it!!

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

3 thoughts on “August 14, 2013

  1. Sharon-Crigger-Stokan says:

    Bless Beckett’s heart and bless both of you for sticking ‘to your guns’ and advocating for your son. Reflux is just awful…I struggle with it at times and as an adult I know/understand what is happening and why. Your little guy doesn’t and he can’t talk about it to you. So hang in there and continue to ‘push’ for answers…solutions. Praying for strength and wisdom for you both and complete and total healing for Beckett.

  2. Bernadette says:

    YEAAAAAAA You have done such a super job, don’t doubt yourselves. I used to pray, Dear God please allow me to speak to those who need to hear what is needed to be said by me to educate them in our needs. God, please allow those in the medical field to hear and understand our points and allow them to make the correct decisions to bring our baby to perfect health with great speed. Amen. You two are awesome parents, and humans, May God continue to guide you and give you strength to be there every day healthy and wise.

  3. Deb Datema says:

    Hi there, I’m friends with Joshua and Julia and read your posts and pray for your little guy daily. We have a son with multiple heart defects and much of what you write, we have been through. Feeding issues/reflux/puking are extremely common with children with heart issues —there’s just so much going on with breathing and heart function and striving to recover etc that it’s not surprising. Anyhow, our son had a j tube for quite a while and also had the special formula (then called Portagen) b/c he had chylothorax issues. Don’t be disheartened, contiue to be your son’s advocate, and trust in God to see you through. I’ve been that mom who cried on those frustrating days b/c sometimes that’s just what you need to do!! Take it day by day, and soon, all of these hurdles will be crazy memories. Try to get some rest and know that you are being prayed for

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