Tag: Mighty Max

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Update 5 – Still not home

The day after my last update, Max had his feeding tube re-inserted because he wasn’t eating enough. He needs to be able to take down a certain volume per day and was far away from that goal. Bit of a bummer but understandable.

Then he was diagnosed with thrush (warning: icky pics), which may help explain why he hasn’t been eating well. He’s been treated for that and it’s virtually gone now.

A couple days ago they removed the last of his IV’s (which was being used to both administer medication as well as provide nutrients). This was great news since it means that even though he may need to be fed via a tube in his nose, he’s getting all his sustenance through his mom’s milk now.

Yesterday they again removed the feeding tube to try to see if he would eat better. The hope was that rather than constantly filling Max’s tummy with 70 ml of milk every 3 hours on the dot, if they let him get hungry on his own and eat on his own he might eat enough via bottle. He eats a bit, but still not enough and it’s a lot of work (he’d wake up, eagerly feed for a minute or two, swallow some air, get fussy, burp, feed a bit more and then doze off and lose all interest in eating). His nurse called him stubborn. I have no idea where he got that from. Nope. No siree.

So while he’s eating a great deal more than he was (between 20 and 50 ml per feeding) it’s not enough, nor is it consistent between feedings. The result is that he’s lost a little bit of weight with the tube out, so it’s going back in and will be used to offset whatever he doesn’t eat on his own, to make sure he keeps his strength up and doesn’t get dehydrated.

The good news is that he’s recovering very well from his surgery, his respiration rate has dropped to more normal levels, he’s starting to eat like he should, and he looks awesome.

He’s just not home quite yet, and until he eats right, he won’t be. Hoping it’ll all click and he’ll start eating like a hungry baby should any day, but being realistic it could still take another week or more.

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Update 4 – Max on the mend

It’s been 3 days since the surgery, and Max is doing really well.

Yesterday he had the breathing tube and the stomach suction tube removed from his mouth/throat, and also had two of his four IV’s removed. We went to hang out with him twice yesterday (New Years Eve), the first time he was still pretty well sedated, but the second time in the evening he was awake and Kelly was able to hold him for a little bit. It was so nice to see his eyes again for the first time since the night before the surgery. One thing they added between the two visits was a feeding tube (run through his nose) since they were pretty sure they’d be introducing food (his momma’s milk) into his empty tummy soon.

Today was even better. Not only did they feed him, but they did it via a bottle and removed the tube in his nose! He ate a few times today and has been keeping it down. This is very good news; it’s normal for any baby to have some reflux issues, but it’s typically worse for infants who’ve undergone surgery like Max has. He’s taking small portions (5 milliliters  every three hours), and they are going to try to up the portion size overnight and into tomorrow.

While naturally we’re elated, we must also remain a bit cautious since he needs to be able to eat well consistently, gain some healthy weight (while at the same time losing some of his puffy/swollen weight from the surgery, IV’s, etc), and they need to watch his intestines carefully. The surgery basically pushed his intestines down into place, and they will hopefully stay in the right/correct position while he digests his food. He’s also pass this food out the other end to ensure everything is operating as it should. This will hopefully be a quick process, but this is what might take weeks before they’ll let him come home with us.

All in all however, he’s recovering quicker than we’d been prepared for. They weren’t expecting to remove the tubes, be reducing his morphine dosages, and feeding him until tomorrow or Monday at the earliest. It’s only a couple days early, but it’s making us feel so much better.

Today we both spent an hour holding the little man. He was awake and squirmy the whole time, but not fussy and just looking around and waving his arms all over the place. Such a huge improvement, and such a big relief.

For those who want to know what he looked like on Thursday afternoon (and you’re not squeamish) take a look at Mighty Max with his tubes and battle scars.

Thanks yet again for all your support and kind words over the past week. It has been and continues to be a huge help for Kelly and I.

Oh yeah, and Happy New Year!

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Update 3 – Surgery completed

As of 1pm today, Max has successfully come out of his surgery and is now in a more intensive recovery area of the NICU. His surgery to repair the hernia did involve a mesh prosthetic, but that was placed in only after the surgeon realized that simply pulling together and stitching the empty spot of his diaphragm wasn’t going to work (pulled too tight, risk of splitting open again). The mesh that was placed in will (providing a good recovery) be surrounded by tissue over time and become a part of him that he’ll never have to worry about again.

Right now he’s on a paralytic to keep him still and morphine for the pain. He also has no less than 7 tubes or needles stuck into him, including one for the breathing machine. He’ll be gradually weaned from the morphine and the respirator over the next few days, and will (with any luck) be mostly recovered from the surgery by Saturday or Sunday.

Then the 2nd phase of recovery begins: getting his innards to work like they should. When you have surgery, your intestines are one of the organs that your body shuts down to conserve strength for critical functions (brain, lungs, heart). This can take some time to get back to working order, so hopefully starting next Monday he’ll be in a place where he’ll be ready to start putting mom’s food into his poor empty tummy, and then they watch carefully to make sure everything is working as it should. This process can take anywhere from a few days to a few weeks. So, we’re not sure when he’ll be coming home with us yet, at least the worst part of this ordeal is over.

The updates will likely slow down a bit from this point. I’ll let you all know when he’s mostly recovered from his surgery, and again when we know more about his ETA for home.

Thanks everyone for your support. It’s been extremely helpful through the last few days.

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Update 2 – surgery tomorrow

Today has been one giant roller-coaster.

Yesterday there were some ultrasounds taken of both the chest and heart which seemed to indicate a diaphragmatic hernia and that he would indeed need surgery by the end of this week. However, the radiologist wanted to do another set of scans to be sure, which he did this morning. The results of these second scans led the doctors to think that there was a good chance that surgery may not be needed (that it might be an eventration rather than a hernia of the diaphragm), however the surgeon would need to make the final diagnosis.

Naturally we were both elated. And then we got a visit from the surgeon.

Apparently whether an eventration or a hernia, it causes the same problems: intestines pushing against Max’s left lung and causing breathing difficulties. Not only did we find out that we will be having surgery, and were told all the possible risks and complications (which terrified me quite a bit), but that he goes into surgery tomorrow morning at 7:30am.

The surgery will last between 3 and 4 hours. Providing all goes well and he recovers from it normally (around 4 or so days), the long haul starts: getting him to eat normally. Once they determine that Max is eating (and pooping) normally we get to bring him home. However that could be weeks away. I’m hoping he has a typical Vanderzanden appetite and won’t have any problems eating, so he can come home soon.

Thanks to everyone for your support, all your calls, emails, etc are all helping both Kelly and I cope with all this.