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.

Patrick’s 2nd haircut

We always stall as long as possible between Patrick’s haircuts, just cuz we love his little mophead. However, Patrick had hair in his eyes in front and his hair was past his collar in back… all except the very back of his head where he’s rubbed all the hair off while scooting around.

This is the best before picture he’d allow. His eyes are closed because he didn’t like the mist from the water bottle.

 

Patrick's Second Haircut

 

Most of the haircut was patient waiting, with a few wiggles.

 

 

Of course, he did start to get sleepy by the end.

But in the end, still turned out quite handsome.

Thanks to Wes of The Hair Place for a great haircut. And for keeping Daddy looking nice, too.

So what is tomorrow’s surgery, anyway?

We’ve had a lot of questions recently about Patrick’s surgery. Seems that there’s some questions about what exactly is going on. I’m going to attempt to explain what is happening in this blog post.

First, though… This is not his transplant, nor does it eliminate the need for his transplant.

Patrick is scheduled to have his small and large intestines reconnected tomorrow. To understand why this is necessary, let me tell you a little bit about his anatomy. While the average small intestine is about 20 feet long, Patrick was born with just 10-15 centimeters of small intestine. He has under a third of his large intestine. Because the large intestine has never been used, it is pencil thing. In contrast, the small intestine has been trying to adapt, which means it is larger in diameter than it would normally be. Here are a couple of images taken in April that might help you to visualize what that means.

From The Hoopes’s’s
From The Hoopes’s’s

The small intestine has three parts with 3 different roles. You can read about them here. Patrick only has the first part, the duodenum, which is very short, and an equal portion of the second, the jejunum.

The surgeons at the hospital where Patrick was born were not comfortable trying to put two pieces that were so very different in size together. Instead, they opted to create an “ostomy”, or “outward hole”. They made a whole in his side and brought the end of his small intestine out through it.

This option has it’s advantages. It’s easier to keep his skin healthy. (Patrick’s small intestine ends before stomach acid is reabsorbed so his stool can easily burn the skin.) And it’s easier to track fluids lost so that we can replace the water and electrolytes he loses. (The small intestine also ends before water and electrolytes used in digestion are reabsorbed.)

However, Patrick’s transplant surgeon and GI have asked us to take down the ostomy and connect his intestines. There are risks in having an ostomy. As his liver begins to scar, it will start looking for other ways to send blood away from it. The result is that smaller vessels will carry more blood than is usual (hyperportal tension) and a stoma could start bleeding uncontrollably.

Furthermore, the colon, while it doesn’t absorb nutrition, does absorb some bile and water and electrolytes, so in the end Patrick might lose less. This would mean he could eat more without it becoming dangerous for him.

Finally, Dr. Reyes says that he’s learned over the last 20 years that patients whose colon is in use, rather than having an ostomy, fare the wait for a transplant better. The body is happier when all the organs that can be working are. And the colon sends bile and water back to the liver, which is the liver’s version of job satisfaction. It will work better because it’s getting a positive response from it’s work.

So… the next questions you ask me are these.

1) Does this mean he won’t need a transplant as badly? No. Although the intestine does a fabulous job of adapting when it’s shortened, Patrick still is missing the vital section called the ileum where all the nutrition is absorbed. Without it, he is TPN dependent, which is where the risk to his life lies.

2) Will his diapers be normal? Well, yes and no. He will poo now. But it will still be mostly water and bile, kind of like a severe case of diarreah. We’ve been told we’ll change at least 12 diapers a day and need to use heavy duty diaper creams in order to keep the skin from breaking down in diaper rash or worse. We will also probably have to do some form of “double diapering” to prevent against explosive leaks that are common in kids with short gut and to be able to continue to monitor the fluids he loses so they can be replaced.

3) What will his recovery time be? We’ve been told to expect at least a week of recovery. He’ll go first to the PICU because he failed extubation in July. The critical care doctors will then be able to wean him off of the ventilator at a pace that is better for him. Once he can breathe on his own, he might be transferred to the infant unit… or he might stay in the PICU. It all depends on how his recovery goes.

4) Is this a risky surgery? Well, yes. With the run of infections Patrick has had lately, they are operating with him not quite as healthy as they would normally ask. There are risks of the connection leaking, or losing even more of his intestine, of the wound not healing because the skin where they are operating is so frequently exposed to stool. It’s also risky to reintubate Patrick right now. But, the risks of bleeding from his stoma are worse and Patrick is the healthiest he has been all summer, so it’s a chance we need to take.

5) What will happen on surgery day? We’ll get the time for surgery this evening. Tomorrow Patrick will fast. We’ll be admitted through outpatient surgery because Patrick’s surgeon was scheduled to be off tomorrow and added Patrick on because it was the time that was best for Patrick. The wait for surgery itself is always a bit nebulous. We’ll meet a surgery nurse and an anesthesiologist, and then finally Dr. Rollins will come talk to us.

In addition to the intestinal surgery, Patrick will have a liver biopsy, have his PICC line removed and a new broviac line placed, and have a scope done by urology to look for scarring from the catheter he had placed in July while he was in the PICU. The total OR time scheduled is about 3 1/2 hours.

We’ll wait in a parent’s waiting room where they’ll come to keep us up to date. Then instead of going to recovery, he’ll go straight to the PICU.

6) Are you nervous? It’s always hard to take your child who is healthy and happy and playing to a surgery knowing that there are risks involved… and even in best case scenario, knowing he won’t feel well for several weeks afterwards. However, we’ve been praying about this and feel calm that things will go as they’re meant to.

So – there you go. All you could hope to know about tomorrow’s surgery. We’ll do our best to keep you updated as soon as we know what’s happening. Most of the time, we’re waiting for answers, too.

Thanks for your continued prayers and support.

Another infection

I’m writing from Primary Children’s hospital again. Tuesday afternoon, Patrick started to act as though he had an upset stomach. I got him settled and he took a nap, but before long woke up upset again. So, as I always do, I took his temperature and lo and behold, he had a fever.

I made a call to the GI on call, Dr. Pohl, and he made arrangements for us to check in to the hospital directly, without going through the E.R.

It was strange to come in without the E.R. routine, but kind of nice, too. The infant unit was full, so they put us in a room in the Children’s Medical Unit just down the hall. As usual, the first few hours were chaos as I gave history, got meds and supplies ordered, and generally got acquainted with the medical staff.

Typical protocol is to draw blood cultures to look for and identify the infection he has. So they call IV team and they draw blood from a vein while the nurse is responsible for drawing blood out of Patrick’s PICC line. They also draw blood to check levels of other important things like blood sugar and electrolytes through his PICC.

Well, Patrick’s PICC line has been tricky and occassionally with clot and not draw back. In this case, neither lumen would draw back. So about 11 p.m. they started soaking it in something to break up clots… but it still wasn’t working.

Finally at midnight things were pretty quiet, even though they didn’t have labs, and I decided I’d better try to get some sleep.

About 2 a.m. things got exciting again. First, his diaper leaked. Right now, Patrick’s ostomy doesn’t have a bag on it (that’s a story in and of itself) and so I had to get up to change it because the combination of creams and powders required to protect the skin against what is essentially stomach acid is pretty complex and not your standard nurse’s experience.

While he was awake, they took his blood pressure and it was frighteningly low.  They checked it about 20 times over the next stretch of time and even though he was awake and uncomfortable, which should raise blood pressure, his was low.

So they finally got his PICC line to draw back and drew some emergency labs to look for dangerous things like low blood sugar, drew blood cultures, and called the ICU to come look at him.

A doctor from the PICU came and looked at him and checked his blood pressure and said that he needed to go downstairs so they could give him medicines to bring his blood pressure back up.

So, at 3 a.m. we packed up and transferred to the PICU. It was odd to be there in my PJ’s giving his medical history. Finally at around 5 things were pretty stable and they recommended that I go get some sleep. So I went and crashed on one of the beds in the parent waiting room.

The next day they explained that sometimes infections cause your blood pressure to drop. Patrick responded very well to the medicines they’d given him, though, and was pretty stable. However, everytime he went to sleep, it would drop again.

Finally after being in the hospital for a full day, the antibiotics started to work. He started to act like he felt better, and his blood pressures came back up.

Thursday afternoon he was doing well enough that they moved him back from the PICU to the Infant Unit. Which is where I’m writing from tonight.

Patrick obviously feels MUCH better! He’s been back to trying to sit and stand and he’s getting stronger and more coordinated all the time.

The tentative plan right now is for us to go home Saturday. As always, when we leave the hospital, all of the nursing duties fall back on Brian and myself, with help from friends and family where possible. He’ll be on two antibiotics and an antifungal because of a diaper rash developing that is most likely yeast. (Antibiotics create the perfect environment for it to grow). With meds every 6 hours at least, sleep will become a very rare commodity again. Of course, as I’m posting this in the middle of the night, you’ll see that it already is.

We’re grateful that this bug seems to be one of the less scary ones. It’s called enterococcus, which lives inside the gut. It most likely either translocated (leaked) into the bloodstream from his gut or got in by accidental contamination of his IV tubing. Any way it goes, it required just 2 antibiotics to treat and Patrick’s central line so far can stay in. In those regards, we consider ourselves very lucky.

Of course we’ll do all we can to keep you updated on what happens from here. Thank you again for all of you do for us.

Prayer Trading

I came across this quote recently from an address given at the Families Supporting Adoption National Conference. The speaker Troy Dunn said, “My mom introduced the beautiful concept of adoption in a very simple manner. She said, ‘There is something that is called prayer trading, and we’re going to trade prayers with somebody. Somewhere out there is a girl praying for a good family for her baby. We are going to pray for a good tummy with a baby in it, and we are going to answer each others’ prayers.'”

When we were considering adoption and meeting and learning from birthfamilies, I sometimes felt guilty that I would benefit through someone else’s loss. My prayers to become a mother would be answered though another family’s suffering.

I expressed these feelings once at an adoption conference and was quickly cut off by a birthmother  who overheard me. She reminded me adoption benefits both parties. For me, obviously, it provided me with the chance to be a mother… something I wouldn’t have been able to have on my own. For a birthfamily, it provides a hopeful solution to what otherwise might be a hopeless situation. In the case of adoption two families are suffering, and in the end, two families get a happy ending.

And so, as we prayed to adopt, we prayed that Patrick’s birth family would be blessed, comforted, and guided through a difficult time. We continue to pray for them.

We’re in a situation of prayer trading again. I’ve heard other families with children on transplant lists express feelings of extreme guilt as they consider the loss that another family will experience for a transplant to be possible. I’ve felt guilty about this idea myself. However, I’ve also watched families who have lost children and who have chosen organ donation. And I have seen the comfort that comes from knowing that their loss could at least help someone else.

One family in particular comes to mind. One of their sons is waiting for a transplant. Another was recently killed in an accident. When we attending the funeral for the son who’d been lost, I heard his parents and brothers and sisters all proudly state that he had been an bone and tissue donor. I also heard them say that they were praying for their other son’s donor family – as they could now relate in a new way with them.

What a beautiful testament to this miraculous gift organ donation can be. Not only does it give the gift of life to the recipient, but in some small measure the gift of peace to the donor’s loved ones. Prayer trading at it’s best.

I don’t mean in writing this to diminish in any way the grief associated with the loss of a loved one, especially a child. It is real and deep and not something we take lightly.  However, organ donation lets a light of hope shine where otherwise there would be two sad endings.

What a marvelous things that sometimes when we are going through our greatest trials that Heavenly Father allows us to answer one another’s prayers.

Please join us as we now trade prayers with Patrick’s donor family. And please consider, if you haven’t done so, registering as an organ donor yourself.