Author: geekino

Home Sweet Home

We were able to bring Patrick home again yesterday afternoon. My apologizies that it comes as such a surprise. Patrick’s surgeon was out until last Thursday, and we didn’t see him till Friday. The other surgeons led us to believe that we’d need to stay in the hospital until Patrick no longer needed his stomach drained to compensate for his too narrow large intestine.

When Dr. Rollins, the surgeon, came in on Friday he said he’d like to get us out of the hospital as soon as possible. However, weekend discharges are difficult and don’t often happen.

Dr. Rollins called Patrick’s GI, Dr. Jackson, in to give his recommendations and, well, Dr. Jackson always wants us home whenever possible. Despite all these recent infections, Patrick has a pretty good track record of staying healthy at home. So Dr. Jackson always prefers that he be here, especially with RSV and flu season upon us.

And so, much to everyone’s surprise, including ours, we brought Patrick home yesterday.

He is on erethromycin (don’t know that’s spelled right), which causes the stomach to contract… the idea is that it will help improve motility through the intestines. And he has a g-tube extension attached to the button in his stomach. This gives his stomach a sort of release valve for when his stomach contents build up too much. We put it to drain periodically throughout the day, though the goal is to keep that at a minimum.

So – my care of Patrick has changed, but is still very time intensive. And as he gets better and has more diapers to change and is allowed to eat, I expect to get even busier.

He’s doing great! It’s amazing to me to see him willing to play on his stomach now that the ostomy is gone. He’s also become quite good at sitting. It will be different to experience this new level of activity here at home.

A poem for Patrick

I’m working on a short gut syndrome support group website in my spare time here at the hospital. After a lot of pondering, I’ve chosen for the logo a worn out teddy bear. This morning, the words to this poem just kind of popped into my head to express why.

 

My teddy’s my best friend, without a doubt

His side is stitched up and some stuffing’s come out.

He’s missing a button and some fur on his tail

But those things don’t matter, I love him so well.

 

He’s faithful. He’s happy. He helps dry my tears.

He patiently bears being hung by his ears.

He’s rough round the edges, but deep down he’s great.

I can’t help but love him, with all of his scrapes.

 

Like I love my teddy, my mommy loves me

For all that I am, and for all I can be.

I may be beat up, even missing some parts

But I know she still loves me with all of her heart.

Update: Two weeks (and a day) after surgery

Well, it’s been another week. Most people are surprised to learn that we are still at the hospital. Well, we did think that the recovery would be no more than two weeks.

But here we are.

It turns out that Patrick’s large intestine is needing much more time to adapt than was anticipated. The problem is that, never having been used, first it had to wake up, and then it has to stretch back to a normal size.

They did a contrast enema today. That means they squirted contrast in Patrick’s bottom and then watched on X-ray as it moved up through his large intestine, and then his small intestine.

The good news is that it moved through without problems. There are no obstructions or strictures. The bad news is that, well, it still resembles a long noodle more than a colon. And it’s fitted to a small intestine that is quite stretched out.

So the stretched out, and therefore weaker, small intestine is trying to push things through a super tight large intestine (imagine a balloon that hasn’t yet been inflated). And it’s just not working very well.

I’ll talk to Patrick’s surgeon tomorrow about the study and see if there is anything more that can be done. So far, though, the answer I’m given most often is that we just need to wait. Hopefully time and use will balance things out.

In the meantime, we just keep waiting here. I don’t know quite what to do with myself. Without feeding, ostomy, IV’s (I’m not allowed to touch them), or even diapers really, there isn’t much in the way of my normal nursing duties to do. So I’m trying to spend my time just being a mom… playing with Patrick and helping with the basic things like sleep, comfort, and cuddles.

The good news is that Patrick actually feels quite well, as long as we don’t let too much build up in his stomach. And this lends itself to fun new adventures like baths in a bathtub and learning to sit.

It’s not the easiest thing being cooped up in this tiny crowded room together with nurses going in and out all the time. We get a bit bored of each other sometimes. But we’re doing the best we can and just praying that Patrick’s body is up for the challenge it’s been given.

Lines

Patrick just got a new PICC line.

PICC stands for Peripherally Inserted Central Catheter. It’s “peripheral” because it is put in through his arm (or sometimes leg) but “central” because the line then runs up through that vein into his aorta (a.k.a. into his heart).

Central lines are very important. Because they run into the bloodstream closer to his heart, they are able to put things like TPN or medications into it that would damage a smaller vein because they are too thick.  Also, because they are in a main vein, they can draw blood from it to run tests rather than having to poke him every time he needs bloodwork. (Which for Patrick is sometimes done several times a week.)

Because Patrick needs TPN to survive, he needs to have a central line. Sometimes he has a PICC line in his arms. Other times he has a “Broviac” or “Cook” line in his chest.

Lines can be lost to infection, to damage, to clotting, or to accidents that dislodge them. But every line lost is dangerous for Patrick. One of the biggest factors if his survival is continuing to have veins to put lines into and so it’s not uncommon to find us discussing what semi-heroic measures to use to make a line last just a little bit longer.

This line placement went remarkably smoothly. The procedure took less than half an hour, following by a half hour nap. Now he’s awake and happily playing in his bed. Still a bit shaky from the anesthesia, but trying his best to sit up. He must be feeling ok.

Thanks to all who helped with Produce for Patrick

Last Saturday, friends, neighbors and family put together a produce stand in Patrick’s behalf.

I just wanted to take a moment to thank all those who helped to make this event a HUGE success. Over $500 was raised in that day as generous people came to buy the fruits and veggies that had been donated. There was an amazing outpouring of generosity from loved ones and strangers alike in donations from 25 cents for a cup of lemonade to far more than the value of the fruits and veggies taken home.

Thanks to Tifanie who had this idea and spent countless hours talking to neighbors and picking fruits and veggies to make this stand a reality. Thanks to Kari, Amber, Jill, and others who gave time to help in gathering the donated harvest. Thanks especially to those who offered the surplus from their gardens and fruit trees.

Thanks to my friends and family who helped in the planning, setup, and manning of the stand, especially to Mom and Jill who’ve put so much work into pulling together our COTA campaign.

Thanks to Chris and Bella and the other kids who helped with the lemonade stand and tenaciously tried to sell a cup to anyone and everyone who arrived at the stand.

And finally thanks to those people who came out of their way to buy from our stand and to strangers who saw it driving by and stopped. We wondered going into this if anyone would stop and buy fruit from a stand that was only there for a day. We were overwhelmed by the response.

I’m hoping that some of the people who were there will share their experiences here on this blog. It was definitely a day to be remembered.

This little stand gave us hope and got us excited for what the days ahead. I can’t wait to see what other little miracles are in store.

Well it’s now been a week since Patrick’s surgery. Patrick is doing really well so far, considering. His incision is healing nicely. It doesn’t seem to hurt him anymore. He’ll sit and play and jump pretty much the same as if he were at home.

This is pretty amazing to me, considering that he still has staples and the area around the incisions and especially where the stoma was look bruised and ugly still. The staples will come out sometime in the next week.

He’s finished his round of post-op antibiotics, too. We were afraid he’d run a risk of infection at the surgical site because a stoma isn’t exactly a clean thing, but Patrick seems to be healing up nicely, regardless.

A few days ago, we started to see little traces of stool in Patrick’s diaper. It’s hardly anything at all, but quite miraculous for him, since his colon is so narrow right now. Pretty much all we’re waiting for here is for Patrick’s colon to have time to stretch out and start working. Until then, his stomach has to be suctioned, which is why he’s got a tube in his nose. At the rate things are going, there’s probably still another week ahead of us, though.

With as little as is there, though, Patrick’s poor little bottom is already red – despite the heavy duty diaper cream I’m using on it. This will be normal for him, though. So we’re just trying to get a good start.

So things are pretty calm here. Of course, nothing is ever 100% simple. In addition to post-op concerns, we’re watching a rash that appeared under Patrick’s central line dressing a couple of days ago to make sure it doesn’t lead to complications and infection. And… as Patrick likes to do to stump us, his heart rate has been low when he sleeps. So we’re watching, as always, to make sure that all stays well. This, for Patrick, is pretty routine… even if it does cost me some sleep.

Well enough to leave the PICU

About 2 hours ago, Patrick was transferred out of the PICU into the infant unit. He’s doing SO well! We’re just past 48 hours post-op and he is already awake and playing most of the day.

He’s got so much energy in fact, that he needs reminded that he can go to sleep. The poor thing is used to being rocked to sleep, but it hurts too much to move him to get him out of bed right now. So I end up putting down the siderails and snuggling my cheek up to his till he falls asleep.

They turned off his morphine drip and he’s getting by on a dose every few hours instead. The funny thing is that right now what helps best to calm him down when he is crying because something’s happened to cause him pain is if I pretend to make a beanie baby bull named Snort that was given to him yesterday talk. I don’t know if it’s the bull or my funny bull voice, but it usually is enough to at least settle him a bit until the pain eases.

The surgery went smoothly

According to Patrick’s surgeon, the procedure went as well as could be expected.

We got up at 4:30 this morning to be able to make it to the hospital by 6:00 a.m. We discovered as we were getting him ready that his TPN pump had malfunctioned and did not run overnight. Amazingly, though, he was doing ok. I learned to use his glucometer just the day before and confirmed that his blood sugar was low, but as soon as we gave the TPN, it picked back up. When we got here, the surgeons weren’t overly concerned, since things had normalized.

We checked in as usual, put Patrick in little hospital pj’s (he’s now big enough to wear the pants!), and then waited to talk to the surgeons.

Dr. Rollins, the surgeon, came first and we talked about the plans for the day. As we discussed things, we decided that in the interest of not wasting places for a central line to go, that we would leave Patrick’s PICC line in until it becomes medically necessary to pull it. Then we visited a bit with the anesthesiologist, who looked an awful lot like Shaggy from Scooby Doo.

Then it was off to the surgery waiting room. Urology was scheduled to see him first so,  although we were tired and starving, we hung around till we talked to them. They were able to get a catheter in with minimal difficulty so they didn’t do any other procedures. They gave us written and verbal instructions to prevent future problems and then went on their way.

We grabbed a quick breakfast, then went back to waiting. Dr. Jackson, Patrick’s GI, stumbled across us in the waiting room and was excited that he could go in and see Patrick’s anatomy firsthand.

Then we had a long, long wait. We didn’t hear much over the next 3 hours. But about 12:30, Patrick’s surgeon came in smiling. Since we had a lot to talk about, we got to go to one of the consultation rooms for the very first time.

The surgery went relatively smoothly. The only thing unexpected was that the adhesions (severe scarring) that he had were worse than they’d anticipated. They had to take extra time to remove them and find the ends of his intestines.

They put the two pieces together, although they are a less than perfect fit. Dr. Rollins held up his fist and touched one finger to it and said that it looked proportionally about like that. As it turns out, he does not have any jejunum.

He has 17 centimeters of duodenum, measuring from the base of the stomach. This means he doesn’t really have any of the absorbative portion of the small intestine. He does have the left side of his large intestine, the descending colon. It is pretty apparent from what is left that the cause of his short gut was probably that the blood supply to the intestines was lost because they twisted. None of this is really new to us… but it was nice to have it finally confirmed.

They also did a liver biopsy. Dr. Rollins said that on visual inspection the liver looks relatively healthy. It is generally a good color and only a little more firm than normal. This is VERY good news for Patrick right now.

So – where do we go from here? Because the large intestine has never been used, it will need to stretch out and get used to being used. First, though, the point where the intestines were stitched together needs a chance to heal. Right now it is most likely swollen closed.

Until that point, Patrick has a tube going through his nose into his stomach that will suction out stomach acid. Eventually, his intestines will heal and adapt and that won’t be necessary.

The main goal before we can take him home is that he be able to pass stool and no longer need the suction. We’ve been told to expect about 2 weeks of recovery before this is possible. Then we can begin again to work with him on feeds.

In the short term, he’ll stay here in the PICU for a little while. Because of the amount of scarring that needed to be removed, he is in more pain. So right now he is still intubated so that he can safely be on a morphine drip. That is the plan through the night, and then tomorrow they’ll talk about extubating.

With all the tubes, though, he looks pretty good. He obviously hurts. But he has woken up and looked at me… and with the morphine, seems to be resting very well.

The rest of our day will be spent getting settled and keeping Patrick comfortable. And then just working on a quick and smooth recovery. I see all good signs here that they think he’s very stable.

I’ve got pictures to post… but forgot my card today. I’ll add them ASAP.