I hope everyone had a nice holiday, and for those who were affected by tornado I hope you are receiving plenty of help to rebuild/ find new homes. My prayers with all of you.
The last time I wrote the blog is about James' nissen procedure as well as gastrostomy tube placement.
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| 4 days after surgery |
We took James home from the hospital on Saturday. A nurse came that day to check if we got everything we needed. There was a confusion regarding the dosage of a medication because the medical student said one thing and the surgeon said another.
The next week we met with several home health nurses to see any progress/ update with James' intake/ output, pain level, G-tube site, weight gain, etc. We also met with a lady from Coram specialty infusion to get the feeding pump, milk supply, feeding bags, tubes, syringes, tapes, etc.
In case you want to see pictures, here are the medical items we have in our home.
1. Joey feeding pump. Easy to use even a caveman can do it.
2. Feeding bag. Only good for 24 hours due to sanitary issue, after that, toss to the trash. I know, I feel so wasteful every time I toss it out.
3. Right angle feeding catheter. The purple tip connects with the adapter from feeding tube. The other end is what fits in the g-tube.
4. Straight angle (bolus) catheter. We will use this to feed James when we're out and about without the feeding pump. We connect it to a syringe filled with 1 - 2 oz of milk at a time (that's James' limit). It runs by gravity, so if he pushes it out then... it'll take him longer to finish the milk.
Now, every night James gets a continuous feeding while he sleeps. He can't take a lot during the day, which nobody seems to know why. Every time I increase the milk intake James decides to puke it all out. We've done 2 GI studies and both came back normal. We've given James different types of medication to control the gagging and vomiting but they're hit and miss. The last med we got before our trip to Indonesia worked WONDERFULLY. James took more food and had less problems with vomiting and gagging. Now that he's immune to the medication we have to stop the med and try a new one. So far the new one is ok. It's not super awesome or anything but it helps a bit. Sigh....
I think I'm a bit side-tracked here. I was going to talk about recovery but ... I don't think I remember much of it. There was a lot of appointments at pediatric surgery office and the GI office. It seemed like every week we made a trip of two down to OSF. There were many episodes of puking/ vomiting, frustration and the feel of exhaustion. For a while we gave James a regular type of Pediasure, but the amount of milk he had to take was too much for his stomach to handle. Now we're giving James Pediasure 1.5. Its got more calories in 8 oz of milk compare to the regular pediasure. When we started him on 1.5 he puked a lot more. Things didn't look right, so we consulted his GI doctor about it. He suggested to add a couple oz of water. After a month we lower the amount of water added in the milk. Instead of adding equal amount of water to the milk, we're down to adding 3 oz of water for every 8 oz of milk. His GI doctor didn't like that you know, and argued with me even though I said it's impossible. So, I proved it to him. I gave James pediasure 1.5 without adding water and guess what, puke puke puke puke and we did a load of laundry each day. So.. ta da doctor.
James' doctor is a good doctor, don't get me wrong. He just has a special way to communicate. Sometimes a bit challenging since he doesn't smile a whole lot and quite reserved. However, I see that as a challenge. I managed to get him to laugh once and it felt good. The walls came tumbling down. I'm sure we're on the ''special'' list of patient, hahahahhahahaha. Seriously, I'm not so bad, I think. I've gotten more relaxed compare to the year before.
I shall end the entry, because.. well... I'm quite tired. James woke up every 2 hours last night and cried his eyes out. Nightmares must be. It's been like this for at least 1 month. Ryan and I play 'tag you're it' during the night, taking turns to calm James down.
Here are some pictures of James from last year before our trip to Indonesia. These pictures I got from FB, sorry, my laptop isn't linked to all of our pictures. I have to ask Ryan about it.
I will be writing about our trip in our next entry. It's going to be exciting, possibly something like a box office number. HA!
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| Getting stuck inside a toy basket. I was on the phone with a GI nurse. I heard him crying and found him like this. I burst into laughter when I saw this. The nurse couldn't help but laughing as well. |
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| Posing on top of the winning pumpkin. |
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| James' first time at Tanners' Orchard. It was a beautiful day. |
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| One of many Dr's appointment. What to do while waiting to be seen? Take a selfie of course! |
