Recovery Update- Evening 7/31

Today has been a mixed bag. 

The good

+Darren brought Alyssa and Jackson to visit today and it went really well. Especially in comparison to Thursday night when they visited and Alyssa cried during the visit, when they left and when they got home.  It was nice to spend time as a family.  We are all looking forward to being under the same roof again.

+ Matthew’s belly continues to show signs of waking up so our surgeon’s partner okayed starting small amounts of Pedialyte again.  We started at 3:30p and so far, so good. 

The bad

-I don’t know what is going on with the staff today but I feel like they might be understaffed.  Our first nurse didn’t come in to Matthew’s room for almost 2 hours after shift began and I had to call the nurse 3 times about Matthew’s IV alarm, plus they never checked in when his pulse ox alarm went off multiple times.  I’m guessing sometime during the day our nurse was changed, but it really wasn’t explained.  This is a stark comparison to the last few days/nights when we’ve had very attentive staff. 

-Related to the IV alarm, Matthew’s IV fell out of his vein this morning.  We’ve had 2 experts (even one with a portable ultrasound) come to try to find a new vein with no luck.  Just moments ago, the IV guru who does emergency transports found a vein…in his head.  So, thankfully Matthew is getting fluids but it looks like he has an antenna.  It is a hard image to see when it is your sweet baby. 

-A little petty considering the other things, but I’m appalled at the meals provided to patients.  This is a place in which people should be getting well and offered nutritious, real, whole foods.  I admit I’m a bit picky (and a little snotty) about what I eat (all-natural and/or organic), and I also know you have to feed kids what they’ll eat and the hospital is doing it all on a large scale, but Jamie Oliver proved it could be done in the schools…why not hospitals?

Anyway, Matthew seems to be on the road to recovery.  He has an IV (albeit scary looking) for fluids (and nutrition later if needed), and he’s started clear liquids.  I’m hopeful we can keep taking the baby steps to home. 

Recovery Update- Morning 7/31

I start this post with a deep sigh. The good news is Matthew’s bowels seem to be starting up, the bad news is it is a slower process than the doctors had hoped. I guess his tummy is just groggy from its long nap. The x-ray indicated that Matthew has a build up of gas in his intestines, so today he is back NPO (nothing by mouth). Because this is his 4th day without food, they are starting him on a nutritive IV. We've waited this long because the nutritive IV can be pretty hard on his little veins.

Right now the doctor is content leaving the NG tube out but if he vomits today, then it goes back in. If there is no vomit today and his belly still shows signs of waking up, then tomorrow we get to try sips of Pedialyte again.

So, it appears that we’ll be here until Tuesday at least. I want to go home because I miss Alyssa, Jackson and Darren, but I want my sweet baby Matthew to heal, to feel better, to be okay and I know when we get home that he will be.

Please pray for healing for Matthew, that his veins hold up well to the IV and for his comfort. Thank you!

Recovery Update- Evening 7/30

Two steps forward, one step back. Matthew has taken a half ounce of Pedialyte four times this afternoon. That's the good news. The bad news is that after the first "feeding", he spit up and after the fourth "feeding", he vomited ... twice. So not sure where the second step forward was, but it had to have been there. Right?

The current schedule is to have him take a half ounce every hour ... unless he has a setback (spit up, vomit) ... in which case, the following feeding is skipped. So we're skipping the 7pm feeding. His belly is distended a bit, so the nurse has suspended feedings until we hear from the doctors. We hope that this is just a case of too much liquid into his shrunken stomach too quickly after having nothing for 80+ hours.

Oh yeah! The second step forward was that urology released Matthew following his catheter removal this morning.

AND! A third step forward! Plastic surgery came by this evening. We have / had an appointment for next Tuesday. They have asked for new x-rays of Matthew's hands prior to making a decision on whether or not they will be able to perform surgery to move his index finger to an oppositional "thumb".

Continued prayers for Matthew's belly, Matthew's ever-present Mommy, and Matthew's intelligent doctors are welcome and greatly appreciated.

Recovery Update- Morning 7/30

Matthew had another good night and an even better morning so far. They removed his NG tube this morning. We’ll wait a few hours to make sure he’s tolerating that well and then we’ll start clear liquids. Yippee!

They also removed the catheter this morning with the note that if he didn’t pee in the next 8 hours, they would reinsert it. Thankfully that won’t be necessary as I just changed a wet and poopie diaper! Matthew’s system seems to be starting up again. Another yippee!

I’m guessing we are 24-48 hours away from discharge. We pray we don’t have any backsliding and Matthew continues to heal!

Recovery Update- Evening 7/29

Not moments after I posted the afternoon update, I had the true joy of changing a dirty diaper. Typically this is not a reason to dance around the room, but when you are waiting for baby bowels to wake up, it is reason to celebrate!

Next steps…
-NG tube removed
-Sips of clear liquid
-Bottle of clear liquid
-Sips of breastmilk
-Bottle of breastmilk
-Increase to regular amount

If at any time Matthew becomes distended or vomits, we have to go back a step. Best case scenario is a day, sometimes longer. Knowing what we do about Matthew and his eating, I’m prepared for longer than a day. We will start that first step either later tonight or tomorrow morning, depending on the opinions of the surgeon based on Matthew’s latest stomach output. Thank you for the continued prayers of healing for our sweet baby Matthew!

Recovery Update- Afternoon 7/29

Today has been pretty uneventful for Matthew, which is good and bad. No bad trends, but no stomach activity either. We are still waiting for his belly to wake up.

We did get an ultrasound of his hip and the x-ray was just at the wrong angle. There isn’t anything wrong w/his hips. That was good news! Matthew really has enough on his plate without adding additional ailments.

Our surgeon is encouraged and thinks we are moving in the right direction. Matthew’s pain is under control and his urine and stomach outputs are improving. I figure whenever we get to feed Matthew, we are 24 hours from checking out. Unfortunately, that clock hasn’t started yet so it looks like we might be here for part or all of the weekend.

Thanks …
… to my folks who came for lunch and gave me time to freshen up
… to my sweet friend, Patricia who came to stock the family fridge with good food
…for the notes of encouragement
…for the prayers and special thoughts for Matthew’s healing and our strength.

Throughout this journey, we are constantly reminded how blessed we are to have our family and friends. Thank you!

Recovery Update- Morning 7/29

I’m happy to report that Matthew had a good night last night. The pain meds administered through the pump gave him relief so that he could sleep. We got a 4 hour stretch and a few small spurts of sleep throughout the night.

The surgical resident came by this morning and her first words were “he looks a lot better than last night”. And she is right…though he is connected to 3 tubes (IV, catheter, NG) and a wire (heart rate & pulse ox) and that in itself makes him look pretty sad.

The x-ray indicated that he doesn’t have any blockages, it is just that his bowels haven’t woken up yet. The surgical resident thinks it could still be another day or two. Matthew’s surgeon indicated that this is not uncommon when they touch the bowels and as he has said, they touched every square inch of them. For now, they are intending to keep the NG tube in pumping the contents of his stomach out and we’ll wait for his bowels to wake up.

The radiologist read something else on the x-ray dealing with his hip that they want to have examined by orthopedics. I’m not sure how they could uncover anything they didn’t find in the bone scan done 5 months ago, but while we are here we should make sure. I don’t think adding this particular other doctor adds a day to our stay, but it sounded like a day (or days) had already been added when Matthew’s bowels continued to sleep through the night.

I’m hopeful that today will be eventful in a whole different way than the past two days, in that his bowels will wake up and we are able to feed him. As parents who have been concerned about weight and feedings, it is hard to know Matthew hasn’t had anything in the last 48 hours. I asked about a nutritive IV but they usually wait until day 3-5 for that. I’m hoping that it doesn’t come to that. I pray today is the day…wake up baby bowels!