Tuesday, February 22, 2011

Watch your cups!

Well, considering the NICU almost killed my baby, I'm pretty happy to be back upstairs.The PICU isn't generally the place you want to be because it usually means you aren't in the best condition. But in our case, I'm happy to be here. Even if there is a clumsy nurse or two. :)

Last week Rambo was doing extremely poorly and no one was sure what had happened. It seems to be the general consensus that the NICU created the perfect storm. Weaning him off his narcotics, trying to avoid withdrawl, extubating AGAIN was all just too much for his little body and too much strain on his heart.
I'm not trying to take all credit away from the NICU and I definitely want to give credit where it's due. The nurses and nurse practitioners are great. I'm thankful they kept Rambo alive when I couldn't have done that on my own. But see if I don't avoid that place like the plague from now on! I said before that Theodore seems to like it in the PICU and I'm thinking he's on to something.

It makes me sad to look back at the pictures before his 'episode' and see how healthy he looked. Actually, in all honesty it makes me mad. I suppose the doctor had his reasons for doing the things he did.
I have no training of any sort in medicine, but I thought that after 8 failed extubations it would be pretty clear to everyone that something had to change. Now he has even less hair, he's swollen and bruised and pale. There's no point in dwelling on the past and he will get healthy again, but it breaks my heart still.

After yesterdays surprising (and wonderful) outcome the plan is to get Theodore ready for a trach and G tube. This was actually the original plan before he moved downstairs (NICU), but we don't need to get into that. Hopefully ENT and GI will come take a look at him and set up for the surgeries. The goal is to have them both happen at the same time but that might not be possible. The sooner he gets these done the closer we are to going home!

So, we're settling back into 'normal' again. Theodore is stable and on the mend. His heart is good. Ben is back to work and the kids have marker all over their bodies. Life is good.


  1. Glad to hear the little man in on the mend. :) Hoping that you can get the trach and G tube when he is up for it and start thinking about coming home!! Praying for you guys, still. Yesterday was amazing and I'm hoping it is only the beginning of many more steps in his recovery. love you!

  2. Amanda, what type of G tube are they talking about? If you end up with Gastrostomy tube, you will likely start out with a PEG, a starter type tube. You want to make sure they are planning to use a LOW PROFILE MicKey or similar device. LOW PROFILE is key.

    If they put in a GJ tube, that is a little different because it is placed just inside the intestine. Make sure you know which one they are talking about. If I remember correctly GJ is similar as far as the stoma and surgery is concerned, but the WAY in which you feed is different. It requires continuous rather than bolus feedings.

    Make sure you get some waterproof first aid tape and some old fashioned diaper safety pins (you'll have to look around for them, they are scarce). These are indispensable for keeping the PEG close to the body by fastening it onto the diaper.

    Also, be sure to ask about the need for a Nissen procedure, which can help prevent reflux. There can also be undesired effects like gagging and bloat (but we got that with the GTube too, so who knows.) They may not talk about it, so ASK. I wish I had known to do some more research before telling them "no", because in hindsight, I would have done it.

    And ask to speak to an occupational therapist or oral motor therapist that is on staff. Don't wait to come home and make an appointment with a local person through Healthy Infants and Toddlers. Ask what you can do immediately to help reduce or eliminate oral sensitivity and encourage effective swallowing. Also ask about proper positioning during feeding. This will help reduce reflux and gagging.

    Anyway, that's quite enough for now. You have a lot to think about. Just know that if you ever want a mom's perspective on Tube Feeding, just give me a call.


  3. Amanda, you are amazing. You may not know it, but its true. I'm just sayin <3