Friday, October 5, 2007

Making a Decision

If you have read the last post, then you have a pretty good idea what is going on with his lungs. Or, you know as much as we know. The question now is: do we let them do the swallow study and possibly risk having to have a G tube that goes directly into his tummy that will then cause additional problems with his desire to eat. Or Do we scratch the test, give him some time and hope his lungs heal. But see the problem is if we don't do the test, pulmonary wont treat him anymore because they believe the problem is aspiration. Either way just doesn't seem good.

The NG tube is irritating to his throat and cause extra swelling, it also keeps the valve at the top of his stomach open which allows him to reflux, which he could then aspirate. The G tube would put us in a situation where we weren't able to give anything by mouth (for fear of aspiration) so that we could give his lungs time to heal, but then he has a tube going through the skin, into his stomach. You risk infection and who knows what trouble we will have then when the time comes for him to start eating by mouth again... If you take out all his tube and just feed him by mouth (I don't think he aspirates when he does this), he won't eat enough. Then he needs all his meds by mouth and they are SO nasty that once he has it once, he won't eat the rest of the day. And I HAVE seen him aspirate his meds. Then to top it all off... say the study shows he does aspirate a little. But what if that isn't causing his lung problem. What if its something entirely different but because we got a positive, they only treat for that and don't diagnose the real problem???

I am at a complete loss. The Transplant Team doesn't want him to have it done, but the Lung Drs and OT do. And I just want to do whats best for my baby... I would say lets do the study ad just see... then I can make a decision on what type of treatment. I'm the mom. I don't HAVE to do what they want... but you can see how ridiculous that sounds.

If anyone who reads this has experience with this sort of thing or can give me a different perspective, I would greatly appreciate it. I need some extra advice to help me make my decision.

Shane and I have been praying about it. And we know the Lord will help direct us to make the right choice (He hasn't let us down yet). But other people's input can help guide us to that choice. So thank you in advance.


  1. Here is my thoughts. Kayden had the NG tube and I hated it. It had to be stuck to his face, he would pull it out and I would have to put it in which one time it took me over an hour trying to get it in because he kept fighting me. The older he got the harder it would get to get him to let me put it in. You have to remember that the ability to suck starts to diminish after they turn 3 months old so the longer he can suck on things the better off he is orally. However if he is aspirating then that causes a lot of problems also. The NG tube alone is hard on the kids and causes oral issues later in life. The other issue that comes up in the eating part is if they don't get the proper nutrition and feedings then it can affect their development in other areas as well. In Kayden's case once he got the proper feeding because of the change in his feedings the better he was able to grow and develop in his gross motor and fine motor skills and then we are working on the eating issues now when he is older. That is what worked for him. Kayden has to take some of the same meds as Noah and we have tried to give them to Kayden by mouth and he took them once and that was it. I like the satisfaction of knowing that by me giving them to him in his tube he gets them and everything is o.k. You will be surprised at how early these kiddos will learn to take the pill form instead of the liquid form. I know how hard it is to have to make a decision for your child but as parents that is our job. I know that when we decided on the g-tube we did it because I hated putting that stupid NG tube in, he gagged and choked everytime it was in which I swear he has the oral issues he does today all because of the NG tube that he had for a mere 3 months. His gagging reflex was more intense and I am sure having a stupid tube down the back of his throat was not easy for him. Administering medications was so much easier. Also for us to not put in a g-tube was only causing more problems for us than it was by putting him through the surgery and getting one. It is scary to think about a g-tube and all that goes along with it. But I am so glad today that I made that decision when we did instead of putting him and us through so much heartache and suffering.

  2. I have no experience with the NG tube (thank goodness!), so I'm at a loss as to what to tell you.
    I vote that you get the transplant people and the lung people together, in one room, and let them debate it, in front of you. This way, you're not the middle man in the medical world that you don't quite understand.

  3. Crystal,

    I met a young mother whose daughter had a heart transplant. Her daughter had to have a G tube put in her stomach. I asked if the G tube was hard to take care of. She said that she really liked the G tube. She feeds her daughter by mouth during the day and gives her feeds through the G tube at night. She especially likes the fact that she can give her daughter meds through the G tube. Nate's little brother also has a G tube and it made a huge difference (he had a reflux and he would scream right after he would eat by mouth).
    I know that this is a scary decision for you. The idea of another surgery and another scar on your baby (like her needs anymore)is a scary thought. I hate the idea of Beckham going under to have his circumcision. You are a strong mommy and I know that you will make the right decision. A thought that I have is that if it was me I would be more inclined to listen to the transplant team. They know my child the most and they have been through this before. Good luck! I will be praying for your family and especially for you that you will be inspired to make the right decision. Trust the Lord. He will guide you to the right decision.


  4. Hello Crystal,
    I'm Jessica Ardern, I'm a friend of Jennifer Tippets, in fact I've been to your house a year ago and printed out a boarding pass! (Just to let you know who I am). I read your blog per Jen's advice and wanted to tell you about my baby girl Charlotte. I don't know if you remember her or not but she has several obstacles right now. She's deaf, has gross motor delays and has a g-tube. When she was born and as I was learning to nurse her we found out right away she had a hard time eating. She wouldn't eat much or at all. She had the NG for the first three months of life and like the mother of Kayden that has posted a comment, I hated it too. Granted, it is a temporary thing and doesn't require surgery but the fact that we had to learn to stuff that tube down ourselves every week was awful. I had to practice on her in the NICU when she was 7 days old. It was awful. You definitely have to replace the NG once a week but also every time your baby rips it out. To me, the tape is a little easier to deal with but stuffing the tube down the nose is worse. The tape can rip off which hurts the baby and you have to stay on top of it so it keeps the tube from coming out when it slowly peels off. Then there's the irritating of the throat, etc. My daughter has reflux still and this contributed to the swelling of her throat which made her not eat with the NG The medications did that too. (i.e. prevacid, prilosec, etc.) They made her throw up almost every meal which agitated her esophagus and throat which didn't help.(FYI, you can get a nissen which prevents the baby throwing up and having reflux, which could be a good thing too. Charlotte doesn't have one though) When we first heard about a g-tube, I was like, no way. I think in a way it meant that this eating thing was a long term situation and I was in denial but LET ME TELL YOU, the g-tube is the most wonderful thing ever. It was hard to have Charlotte get this, but she recovered quickly from the surgery and keep it very clean and you learn this at the hospital. The baby first has the PEG (which is a long tube coming out) and then once the stoma has healed, they replace the PEG with a low profile one. We have the mickey button, it's like a little gas flap. But things with Charlotte's eating has changed ever since she's gotten it. Granted, our situation is different but Charlotte's desire to eat has not changed, it's increased. It will be more comfortable for the baby, it's easier to deal with, it's a huge benefit as far as medications is concerned. The risk of infection is there, and Charlotte's had like 3, but it's not that big of deal (although it may be for your baby) but if you are even more adament about keeping the g-tube site cleaned then it will be okay. You learn about the tube and everything in the hospital and it may be scary but now that we have switched to the g-tube, Charlotte's whole personality has changed for the better. We bolus feed her right after every meal she eats (which is only three during the day) and then a continuous feed at night so she can keep up her weight. It isn't noticeable to those who don't know your baby (if that is an issue for you). I think getting used to a new thing is hard but it's a much better thing than the NG. It's going to be a hard decision but from my experience a g-tube is much better and much easier (although at first you might not think so like we thought but after about one week, we have loved it!)to deal with. I hope this helps a little. Feel free to ask me questions, I hope I can help you! Good luck and remember you will do what is right for your baby, no matter what you decide. Jessica Ardern (I hope I didn't confuse you) (


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