Post-Surgery Update {Day 9}

posted in: Apollo, Special Needs | 8

We’ve had a rough couple of days here. As Apollo’s general health improves and his body heals, he gets more and more restless in the hospital. Yesterday he was a complete maniac, trying to run and climb and swing all over- then predictably was in pain later from overdoing it. He is not supposed to run, jump, ride a bike or climb for six weeks post-surgery. In fact, he is only supposed to walk and climb stairs.

Any of you ever had a two-year-old? Yup, impossible, though I’ll do my best to restrain him.

Monday night we had some major IV drama. It took several attempts to place a new one- at 10:30 at night when Apollo was exhausted. After the first failed attempt, he fell asleep before a new nurse was found to try again…oh boy was he unhappy to be woke up to a second try. At one point I was telling him they were going to put a board on his hand to keep his IV in place and he said, through tears, “they’re going to put me on a board?” to which the nurse laughed and said, “he thinks we’re going to put him on a board?“. Well, this mama had seen her son in enough pain and replied, “Hey, if you’d been through what he’s been through in the last two  years you’d be pretty upset too”. And yes, Apollo has been strapped down for procedures before (including his recent stitches). To his credit, the nurse seemed contrite after that.

Yesterday, during rounds, I  had a long discussion with Dr. B about Apollo’s feedings. She wants him having 200 ml five times a day. That’s a huge leap up from his 190 ml four times a day we’ve been feeding him. Any of you remember the drama I had to go through to get his feedings increased a couple of months ago? He’ll now be going from 760 ml of formula through the tube to 1,000! Dr. B believes he needs that amount to grow and heal. I’m not opposed to the increase, just shocked at the huge difference in volume and calories.

Because of the prior vomiting, he was put on continuous feeds (hooked up 24 hours a day). We have slowly been working on increase his feeds to where he was getting 126 ml every three hours (fed over an hour).  Dr. B decided yesterday to raise the volume to 180 ml every four hours. Well, in some insane miscommunication, the nurse was giving Apollo 180 every three hours instead of four. That would give him a daily intake of 1,440 ml instead of 1,000. Predictably Apollo was complaining his stomach hurt and was irritable. Due to some pump issues and delays, he ended one feeding at 5:30 and the nurse insisted on starting his next scheduled feeding at 6:30…Then at 9:30. He seemed some uncomfortable, I went over the numbers in my head and realized the mistake. When the nurse came in at 12:30 to feed him again, I pointed out the error. She called the doctor and they agreed to postpone his next feeding until 1:30. I felt a bit doubtful about this, realizing how much formula he had already taken in, but I also knew that would be his last feeding since they were hoping to take out his chest tube in the morning and he needed an empty stomach for that. About ten minutes into his feeding he began vomiting. Surprise, surprise 🙁 He didn’t get asleep again until after 3:30 am…and was up for the day at 6:30. He was screaming and crying, just hysterical from fatigue. I kind of wanted to scream and yell too.

It is now 10 am and he hasn’t been allowed to eat and drink yet because they are still hoping to pull the chest tube. Unfortunately, they just now did his morning chest x-ray and we have to wait for the doctors to view it before the tube can be removed. So, after being overfed all day yesterday, he now hasn’t been able to eat or drink since vomiting at 1:30. He is not a happy camper, to put it mildly.

In order to be released from the hospital he needs to:

* have had the chest tube out for the day


* be able to tolerate his feedings.

I have more to say, but I’ll try to update later on  today.

{By the way, thanks to Kati for the food and coffee, Robyn for the awesome Kind bars, and Melissa for the food and gift for Apollo. You have no idea how nice it is to eat something that was not made in this hospital!}








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8 Responses

  1. You’re going to laugh at this, but I was afraid the bars would get there after you’d left the hospital! But it does sound like you’re getting closer, if they want to pull his chest tube. I know he (and DEFINITELY you!) will be happy to be home, and will rest better.

    Have you noticed any difference in his breathing or swallowing? Are they doing anything to monitor his reattached subclavian artery?

    Thanks for the update. We’re still thinking of you and Apollo and your family every day!

  2. I wish you were in Seattle… I would be down there in a heartbeat! (ironically) 😉 This post just drives me crazy, I hate the little errors that aren’t necessarily life threatening, but they can create chaos and anxiety like none other… praying every day!

  3. Poor kid – I hope they get things straightened out with his feeds, so he can feel better and heal. You have quite a job keeping a toddler from being active. It’s a good sign that he want to be active, he must be feeling better. Praying God continues to provide you guys support while you are there.

  4. Glad people are taking care of you! So sorry about all the drama, willing to bet healing will take place better once you are home! Hugs for your day.

  5. I encourage you to keep your own records of his feedings…and fight fight fight with the nurses to do what you think is best. I had to wrestle hard with the team over Josiah and in the end we came to a compromise. It just makes me so mad to think that increased his feeds a day before they made him fast…what in the world is the point of that? Sometimes I question the overall logic of the medical industry. And yet our sons would not be here with out them! Well keep being Apollo’s advocate! Don’t be afraid to boldly question what the team is doing if you have a red flag. Ask to talk to the charge nurse if need be. You are doing a great job…Hang in there mama & sweet Apollo!

    • bakersdozenandapolloxiv

      Nicole, I keep notes whenever I can. It just gets hard while managing a terrified two year old.

  6. My mom and I have been wanting to bring you a meal. What kind of things do you like to eat? Do you have a microwave or some way to heat food? We live relatively close to where you are at, and would love to help. Oh, and where exactly should the food be brought to?

    • bakersdozenandapolloxiv

      Lauren, we are hoping to be released tomorrow, but you are more than welcome to visit us at the Ronald McDonald House!

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