Alright, so I'm way behind in this blog. I actually thought about not writing on it anymore but I know there are still a few of you who like to keep track of what is going on and it is a good place to get out my feelings. Plus, if anyone is reading this that is going through or is about to embark on the cleft lip and palate adventure, I want people to know they are not alone.
So a few weeks before Riley's palate surgery, Riley started not eating quite as well and he still is not drinking which we have always had some issues with but now he has been refusing fluids almost completely. The Sunday after his palate surgery, I worked a 12 hour shift. Tony texted me about halfway through my shift to tell me he hadn't changed a diaper at all. He was having no urine output and there had been little urine output for a few days prior to this. So, Monday we found ourselves in his pediatrician's office. As we were telling her about his situation, she told us we needed to get to the hospital stat. Of course our hospital that Tony and I work at does not have pediatrics so we were diverted to Thurnderbird which is about 45 minutes away from where we live. We got checked in and ended up there for 6 days. We were discharged on Oct 30th.
While we were there, we met with a GI (gastrointerologit) doc, neurologist, surgeon, and our attending. We also had speech therapy, a nutritionist, case manager, and a social worker. We were very busy and I stayed every night with Riley. I cannot tell you how exhausting it is having your child in the hospital. Anyways, we had a barium swallow to see if he was aspirating but that was negative. He also had an endoscopy and that was negative as well. The neurologist met with us to make sure there is nothing neurologic or metabolically wrong which also turned out to be okay, and she is also running some genetic testing but we won't get those results for about a month. The GI doctor insisted on placing an NG tube (tube that is put through the nose down to the stomach for feeding) but our plastic surgeon said "no" as he just had his palate closed and recommended an OG tube (same as an NG tube but goes down through the mouth). We looked at this doctor completely astounded that she would mention such a thing. Riley already has an aversion to things in his mouth and we are having issues with him having things in his mouth. He would be pulling it out all the time. Tony and I were very insisted with a g tube (a tube that is surgically placed in the stomach) and I'm so glad that we did. Friday he had an endoscopy and then the g tube placed. The endoscopy (a scope that goes down through the mouth that looks at the tummy and the doctor was looking for inflammation).
After we were discharged, we have been trying to feed him as much as we can orally but we are having to put most of his fluids down through the tube. His feeding his still very decreased which also is concerning.
Today, we started speech therapy. It was an evaluation and for about 30 minutes we played around with different textures and different types of spoons but would only eat from his spoon and nothing that wasn't a smooth texture. So, the plan is to start very slow with adding textures such as adding fine crumbs to the top of whatever is feeding him and slowly advance him to bigger textures. We also had a follow up with his pediatrician. He has gained one pound which is probably from the night feeding he is on. We hang an iv of formula and hook him up to a machine that gives him a low continuous feed through the tube. Very stressful and I am so beyond tired. I went directly back to work and finally had a day off today and have a day off tomorrow but we have a surgeon's appoinment tomorrow for the g tube stitches....not really much of a time off.
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