Category: Surgeries

Losing the line we were told never to lose

Or perhaps I should title this post “A date with the devil.” We are being forced to get to know the devil we don’t know.

Believe it or not, we finished a course of antibiotics and we went on vacation. Brian went on a business trip to the Ukraine. Patrick and I went to visit our good friends, the Laylands, in Seattle.

But writing about those things will end up waiting for another day. Because I’m writing tonight from a hospital room. Again. And there are things on my mind that, for me, have been the subject of nightmares for many months now.

Patrick has lost his central line. Not entirely yet. But it will have to be replaced.

It all started Saturday night right after I put Patrick to bed after our first day home from Washington and went to clean up before Brian returned from Ukraine. Patrick had been in bed about half an hour when I heard a plaintive “Mommy”, and then that unmistakable, heart stopping sound of him throwing up in bed.

I ran up the stairs but was too late. The poor little guy threw up half a liter of nasty green stuff. He must have felt awful all day. It took an hour to settle him enough to sleep.

Saturday morning, a homecare nurse had come to draw some labwork and follow up blood cultures. All seemed well at that point.. But i was very glad for those cultures when Sunday morning, Patrick was having low grade fevers. We went to church just to be able to take the Sacrament and see how long we could make it. We had a backup plan for our assignments at church.

And it wasn’t long before it was obvious Patrick didn’t feel well enough to sit quietly. So I took him to the foyer to let him move and I got on the phone with his doctor to see if we could come get more bloodwork done. And I pulled out a thermometer, and there was the number we had waited all morning for. 100.4 degrees farenheit. And official fever.

So, we made a bit of a scene leaving church, packed bags, and came to the hospital.

It took several hours to restart Patrick’s antibiotics. 8 for the one I thought he needed most, which just about made me crazy waiting for as he got feeling sicker and sicker. But as soon as they were given (along with a Priesthood blessing), Patrick started to feel a little better. We even slept through that first night.

All seemed to be going smoothly by the end of the 2nd day. I was a rockstar advocate mommy and got Patrick therapy, a picture schedule, integrative medicine & aromatherapy, and even talked to the palliative care team about signing him up for their services. I even managed to get his GI, surgeon, and a radiologist to have a care conference to discuss replacing Patrick’s positional line. They came back in favor of a change and suggested a plan of action to decide if and how to proceed.

And then, at 4 p.m., we came back to the room to draw cultures and start his antibiotics and his line wouldn’t draw. Or flush.

We ordered TPA and we worked it, and we worked it… and, well, after 4 hours of effort, he was exhausted, I was heartsick, and the line was still not working. And the plan from the care conference was upgraded from a hypothetical, optional plan to a necessity.

I did not sleep as well last night. (And not just because the nurse was slow about keeping the pumps from alarming and banged the door.)

Today we put the plan into action. Patrick went to radiology for a sedated ultrasound of the veins in his upper body. The order was for light sedation.

We learned today that Patrick is very capable of fighting light sedation. Made him silly and sleepy, but he was still perfectly able to fight the test. Moderate sedation didn’t fix things either. In fact, with sedation all of his inhibition control was gone and none of my usual distraction tricks were even an option. The ultrasound was wiggly, to say the least.. but the technician was patient and kept trying to get the information the doctors wanted.

Listening to her review her images with the radiologist, though, made my heartsick. As usual, Patrick’s right side vessels are fairly scarred. (Though perhaps a little better looking than the last I’d known.) But, they worked enough to give a better answer about the left side than before. Instead of just saying “Inconclusive”, what they said was that the left subclavian vein (the one in his shoulder) has lots of little collateral vessels around it too and shows evidence of being swollen at least, if not scarred, and also probably has a clot in it.

I asked the radiologist if that would explain the tricky behavior of this line for the past year and he said absolutely, that the vessel may have been pressing on the line. He also said that changing out the line over a wire was a risky move, given the clot in the line. But that I’d need to discuss that plan with our surgeons.

Other vessels were open, but most of them looked to have some kind of narrowing.

The rest of the afternoon was a little crazy. I got permission to change out Patrick’s button while he was still sedated and that went quickly and smoothly and he doesn’t seem to understand it even happened. That’s what we hoped for.

And that meant that Brian came up for the ultrasound and stayed the afternoon.

But it was a rough afternoon. Patrick didn’t sleep under sedation and he didn’t sleep after, either. He fought REALLY hard all afternoon to stay awake. We could tell when it started to wear off because he finally stopped fighting.

But because of low heart rates, he still had to stay in bed till 5:30. We got out for a short walk, but when we came back for TPN at 6, and I asked the nurse if all was done so we could leave, she told me no. She didn’t want to use the automatic settings to taper Patrick’s TPN levels up (to protect his blood sugar levels)… and so, we couldn’t leave the room.

The idea of making Patrick stay any longer in the room with the same old toys and bed and short IV tubing kind of broke my heart. So I had a very short little cry about it. Then I went and helped myself to several fitted sheets and used the extra safety pins around the room to build us a fort.

That tided us over for the rest of the evening.

Tomorrow will not be an easier day. As of tonight, they plan to take Patrick to surgery tomorrow. The surgeon will probably attempt first to put a line back into the same vein. That means that he’ll put a wire into the catheter, remove the old line leaving the wire, and then use the wire to guide a new line in.

That is the best case scenario.

The worst case scenario is that that won’t work. In that case, they want to repeat a venogram.. which is a contrast study of the Patrick’s veins. And they will use that to pick a new vein to put a line into.

It is entirely possible that the surgeon will come in in the morning and decide that he wants to have that done before Patrick goes to the OR. And then we’ll just do that tomorrow and the surgery the next day.

And the worst of worse case scenario is that the wire over doesn’t work, none of the other vessels are still wide enough to get a central line into, and then we’ll start discussing desperate measure that I don’t really want to get into in a blog post unless they happen.

Needless to say, this is scary. I am still terrified of the idea of Patrick no longer having veins to give nutrition through. I do not want to imagine that happening.

We are not to that point yet. There are veins in other places in the body that can be used. But there is still a lot of pressure to make one of these sites work because in order to have a transplant, Patrick has a have a central line in his upper body.

I’m scared and I’m sad.. and I’m really, really lonely for some reason this stay. But I’m calm. We have been praying and fasting about this line for a while now. I can’t help but think that this is an answer to those prayers.

So, if you’re the praying type, please join us in praying for the surgeon and his team and the radiologists tomorrow. We’d love to save this access site. We’d love to get another year and a half or more out of another. And I have this faint little hope that maybe the next line won’t scare me every time someone else flushes it, (and sometimes when I do, too.)

Outpatient

Last entry, I wrote about Patrick coming down with a common childhood illness and how much more complicated that is for him.

Well, as predicted, this illness definitely had it’s impact. The day after that blog entry, Patrick started throwing up. As it turns out, herpangina, better known as Hand, Foot and Mouth is caused by a series of viruses that live in the intestines. Symptoms indicate that Patrick’s was caused by one called “enterovirus.” As a result, Patrick started to lose so much fluid by g-tube that I was having a hard time keeping up replacing the fluid.

By the time Brian got home from work, he was pale and weak, running a fever, and we were worried. I put a call into Patrick’s GI to ask if they wanted to check blood cultures. By the time they called back to talk about putting in those orders, we’d changed our minds and asked if he could just come in for a night of observation. The night went well and Patrick was obviously feeling better with no additional treatment and by morning, we were asking to go back home. (Especially since we’d barely gotten any sleep.)

By early afternoon, we had been officially discharged when we discovered another problem. When I went to connect the TPN, one of Patrick’s lumen’s wouldn’t flush at all. I tried a few times without success. But we were sleepy and his nurse timid. We’ve unclotted lines lots of times at home. He still had one working lumen, so I said “let’s go.” On the way home, I made calls to get the anticlotting agent sent to me.

All night long I tried to work it, getting up every couple of hours to try again. It just didn’t work. By morning, I knew it was a lost cause for my efforts. But by this time Brian was also sick, I hadn’t slept in 2 nights, and Patrick needed rest. So I made phone calls instead of running in. Eventually, we made arrangements to go in to have the hospital staff try to unclot the line. We arrived around 8 p.m., (we asked to wait until we’d at least had Brian’s birthday dinner with his parents)… And the nurse tried all the things I’d tried. Finally, at midnight, we declared it a lost cause and they sent us home.

Patrick’s doctor called the next day to tell me that, as we suspected, Patrick would need a new line. And we went on, finally feeling a bit better, with celebrating Brian’s birthday. We took Brian shopping for a few big wishes, then went out to dinner. That was all the energy any of us had.

I talked to surgery the next day to make arrangements for the new line to be placed. Since Patrick still had sores in his throat and his surgeon was out of town anyway, we scheduled it a week away on Tuesday.

That was a week ago today. The surgery went well. We checked Patrick in at 6 a.m. then talked to the nurses, surgeon and anesthesiologist who’d take care of him. The anesthesiologist said what we all know, “He looks a lot better in person than on paper.” Still, even minor surgeries can be major for Patrick so we didn’t really relax until his surgeon came and told us all was well.

The only complication was that Patrick was bleeding fairly easily. But that seemed to be under control. We came home and I sent Brian off on a business trip to DC the next morning.

His occupational therapist came the next morning as I was trying to find an assistant for the day-after-surgery dressing changes. Since we’ve been specifically trying to help him with those, she volunteered to help. All went smoothly and we were playing with her after when I noticed that I could see blood on the new dressings.

I peeked under his shirt to find that the old line site had bled since the change so much that it had soaked the dressing and was now soaking into his shirt. So his OT made a quick departure as I called the hospital who suggested I change the dressing again and apply pressure. It worked and he went to sleep.

But, come 6 p.m. the same problem came back. I called the surgeon on call this time and got the same instructions. They worked again, but I realized that Patrick needed to be helped to be a little less active until things healed.

Lucky for him, we’d bought a zoo pass the weekend before, so I packed him up and went to the zoo where he’d be strapped down in the stroller for the morning. It worked and we had a great time looking at the animals (I think the zoo deserves a separate post)… He only scratched off his dressing once while we were there, and I was able to get a new one on without any bleeding at all! And I managed to keep the IV tubing away from the stroller wheels until we were exiting, when they got tangled so badly they broke, but fortunately I pulled off a quick tubing change without any incident and we made it home safely and ready to nap.

He seems to be healing just fine from the surgery now… and his sore throat is gone. His tummy even was better for a couple of days. He’s back to losing a ton of fluid again this week which means either the enterovirus is still there… or he’s been exposed to something else… which is possible.

It’s work sometimes to keep Patrick outpatient, but as my next posts will show, it gives him the chance to experience the joys of life, which makes it worth all my work.

Sorry this entry is so long! Between Patrick, Brian and myself being sick at various times and me “playing Florence Nightengale” as Patrick’s case manager put it, this is the first chance I’ve had to catch up stories. I thought I’d start with the medical first so I can follow with tales of fun later.

All too familiar

Here we are again. Back at Primary Children’s hospital – battling yeast yet again.

Sunday morning, Patrick developed a fever. It started low, but after a couple of hours, it was evident that he didn’t feel well. It seemed to both Brian and myself that he was trying to communicate with us that he wasn’t feeling well and needed help.

We’d made it through 2 hours of church, but decided it best to leave before Sacrament meeting was over. We got home, took his temperature – 101.4 – and he was starting to have chills. So we packed up and headed to the E.R. as quickly as possible.

Once we arrived, things were pretty much the usual drill.. they gave him some Motrin, took his history, drew blood cultures and started antibiotics and antifungals.

It didn’t take long for us to get into a room. But we started out right away with excitement. Before the nurse had even finished her initial assessment, Brian noticed hives forming next to Patrick’s ears. Within 5 minutes he was covered with hives from head to toe and his lips and eyes were starting to swell. They turned off the antifungal medicine and the reaction stopped and started to reverse. We think that they ran that medicine faster than his body’s used to and it caused the reaction, but it was a very scary moment to think that our preferred antifungal medication might suddenly have become off limits.

That night, Patrick was really, really sick. His fever reached over 104 degrees and he was sick to his stomach. We barely slept at all. The only rest he got was if he had both Tylenol and Motrin in his system. The problems continued through the next day and the antibiotics and antifungals didn’t seem to be making much difference until afternoon when his fever finally broke for the first time.. But his blood cultures stayed negative all day.

Around 8 p.m. a doctor came to visit us, though, and gave us results. Patrick has yeast in his bloodstream again.

The rest isn’t unexpected, but that doesn’t make it easier. Today’s been scary, stressful, and exhausting. Especially since Patrick is not cooperating with me about sleeping in his bed and neither one of us has had a good night’s sleep since we got here.

We talked to the doctors early and they confirmed that we needed to pull out his line. They also explained that Patrick’s spleen, yet again, is sequestering platelets and his blood counts are falling to dangerous levels. This means transfusions again with all the potential complications that come with that.

We spent the morning getting a little more settled in. Social work and child life came to visit. Child life talked about ways that we can help Patrick to be less afraid while he’s here. They brought him a baby doll with a little oxygen mask and blood pressure cuff to show him that they’re ok. He gave the doll lots of kisses and snuggles.. But took the blood pressure cuff off.. I think he was protecting it. They came along to all the following tests and surgery, too, to help minimize the trauma of these procedures. This was a new experience, but he seemed to enjoy it.

We went down to ultrasound around noon. They were looking for fungal balls in his organs. The poor radiology tech and radiologist were very confused trying to understand the anatomy they were seeing. I tried to explain that his gut looks funny and that his gall bladder is so small it’s almost invisible.. but they still were pretty sure his small intestine was his gall bladder. As we were leaving, the technician said “He looks so healthy, though”.. implying that on the insides he looks far from healthy.

When we got back from ultrasound Brian was waiting for us. He’d been given the afternoon off of work to come help. I was so grateful he was here!

We hurried and got ready for surgery. Just as we were about ready, the resident from the infectious disease team came to examine Patrick and take a history. Surgery showed up to take us down before he’d finished his exam. Patrick was jumping on the bed. I said to Brian “He’s just jumping because he knows he’s about to loose his foot”, referring to the fact that he’d come back from surgery with an IV in at least one foot. The guy from surgery looked up and said “Wait. What? Do I have the wrong kid?” We had a good laugh after that.

We went down to surgery with the child life specialist and infectious disease doctor in tow. After talking to the anesthesiologist, we sent Patrick on his way in a crib full of toys. Then we sat down to finish the history with infectious disease. Before we finished, Patrick’s surgeon came in.

Dr. Rollins, the surgeon, talked to us about what a dangerous situation we are in as Patrick is running out of more and more places to put lines. We’re aware of this, but hearing it vocalized by our surgeon made it all the more real.

Worse yet, he called from the OR as they were trying to place peripheral IV’s to tell us that they couldn’t get them in and to ask my permission to put in a “shallow central” line in his leg or neck. Apparently, they’d stuck him 8 times attempting to place a peripheral IV.

In the end, though, they got 2 peripheral IV’s in. Infectious disease didn’t like the idea of using a central line at all and asked them not to leave one in. So we find ourselves in a scary position now. Patrick needs IV’s for his nutrition and medication. He also needs to have labwork drawn to keep a close eye on his fragile health.. and we don’t know where else they can get needles in.

After talking to the surgeon, they let me go back to the recovery room where I found Patrick just by following his screams. He was hysterical and they told me that the anesthesiologist had prescribed me as his pain medicine. So I sat and rocked him and eventually got from screams to whimpers to sleeping.. But that was the situation for the next 5 hours or so. Patrick screamed bloody murder whenever anyone but me or Brian touched him. He was only content being held and rocked by one of us.

He just woke up about half an hour ago, though.. and for once seems back to himself. They gave him medicine for nausea and started his last transfusion of the day and it seems to have him finally feeling better. The best news is that he doesn’t have a fever.

Right now, he and his daddy and playing with toys in his crib. He’s not 100%, but doing ok for now.

Prayers for IV’s to last, for veins to be found when needed, and for Patrick to feel comfort in a very scary situation would be appreciated.

The attending from infectious disease explained that they don’t think this is the result of an untreated infection. The previous infection didn’t grow back. Instead they think these infections are coming from his gut.. and we don’t know how to stop that for now.

A lot is still up in the air. I’ll post more as I know it.

Results of today’s tests and surgery

Today’s been a pretty busy day. Patrick went at 9:30 to have an upper GI study today. They put a contrast solution into his stomach through his G-tube and then watched it move through his intestines. He’s had this test done a couple of times and the results are always quite interesting to see. As we knew, Patrick’s small intestine was quite fat and stretched out and his large intestine was pretty narrow, though not as narrow as I remember it being last September.

At the end of the study, the radiologist compared today’s images to the ones taken in September. Her result: “No significant change”. Yup, that’s right folks.. all that worry revealed that they officially discovered that Patrick’s anatomy is just as we expected it would be 6 months after his reconnection.

They are still wondering if this odd anatomy is to blame for some of the recent infections. (Bacteria or yeast from the gut leaking into the bloodstream through thin walls).. but are going to watch for a while to see rather than taking immediate action.

So – this afternoon Patrick had a new central line placed. This one has two lumens, meaning there are two tubes so you can put incompatible things in at the same time without them mixing like antifungals and TPN. We’ll be starting a new therapy hopefully tomorrow, too, where we fill the unused lumen with a solution that helps kill bacteria and fungus.

We’re still waiting for a plan to move forward from here. For some reason, even though little has changed anatomically, they’re acting as though something major was still wrong and therefore trying to make changes to diet, etc. I’m having to go all out working as Patrick’s advocate right now.. fighting for people to think things through and decide what’s best for Patrick based on himself, not on general rules and practices.

It’s exhausting work, so since he’s sleeping, I think I will too. Hopefully it’s a calm, restful night and I’ll be ready to get up and start pushing for a discharge plan tomorrow.

Worth the wait

Last week was one of the harder hospital stays we’ve had, and I think it’s because there was so much waiting for answers to scary questions… and while we waiting Patrick didn’t feel all that sick and couldn’t figure out why his boundaries were suddenly so much smaller. Had he not discovered opening and closing cabinet doors as a way to spend his time, I think I’d have been a goner.

After 3 days, the lab tests showed that the infection was, in fact, the same infection Patrick had back in January. This type of bacteria can sometimes live in the plastic of a central line. The doctors theorize that the reason Patrick only sometimes had low fevers and only sometimes acted sick was that the infection was living in the line and only sometimes making its way into his bloodstream.

The best way to make sure Patrick got better was to take out his central line. So – Thursday afternoon they took Patrick to do an ultrasound of his veins to see where a new line could be placed. Friday morning they explained a plan to me that involved removing his broviac line and putting in a temporary PICC line instead. (Please see previous blogs for descriptions of the differences between these lines). After 3 days, they’d take out the PICC line and put in a new broviac line instead.

I explained again that we’d been told that Patrick couldn’t have PICC lines because of the collateral vessels in his shoulders. But – it was better to try than to plan for peripheral IV’s in his hands and feet for 3 days.. So we went ahead.

Both the broviac removal and the PICC placement are sedated procedures and it took some talking to convince them that they could be done at the same time – but, despite a full-to-overflowing hospital, they made it happen.

We got ready by putting an IV in his hand where contrast could be injected and an NG tube down his nose to drain his stomach and make sure he didn’t vomit and aspirate again. This took over an hour to do. Patrick has learned to block tubes with his tongue as they try to pass them down his throat. It took several tries and a very crafty charge nurse to finally get it all done. With music therapy there to try to help calm him down, the room seemed a bit like chaos. In the end, Patrick was exhausted and furious. I took this picture as I tried to calm him down right before he fell asleep from total exhaustion.

Late afternoon on Friday, they took Patrick to Special Procedures where they use a technique called fluoroscope to view the blood vessels to view the blood vessels as they work.

The anesthesiologist gave Patrick a dose of Versed and let me hold him as it put him to sleep. This was a first for me, and interesting to see his reaction. First he got all giggly. They he took my face in both hands and gave me a big sloppy kiss on the mouth. They he went kind of limp and I put him on the procedure table and left as he was drifting off to sleep.

Less than an hour later, they called. They explained that he did indeed have collateral vessels that made a PICC line impossible. However, they’d put in a deep peripheral IV that would better survive the 3 day wait.

Picking Patrick up, I learned that Versed does two things to Patrick. It makes him loud, and it makes him fearless. He spent the entire ride to his room and then at least an hour afterwards yelling “Hi!” at the top of his lungs to every person who passed by.. including the ones all the way out in the hall where they couldn’t see him. He also took to jumping and climbing and bonking his head into things. (He still has a bruise between his eyes from this game).

Soon he got tired and went to sleep. And we went back to waiting. Surgery requires a 3 day wait before they can put in a new broviac line whenever one is pulled for infection. In the meantime, the sugar in Patrick’s TPN had to be reduced to prevent damage to the peripheral vein. This meant he didn’t feel quite as well. He also kept the IV in his hand because we don’t dare take out any working IV, for fear we won’t get one later when he needs it.

Patrick didn’t want to slow down, though. Within a day he’d figured out how to still crawl with a splint on his hand.. he was determined to stand at the side of his crib.. and he taught himself to sit up to make sure that no one else would be able to get away with trapping him by laying him down. It was an exhausting 3 days because he was extra motivated to stay active, despite his new restraints.

Finally, Monday rolled around and Patrick was eligible for surgery again. We waited all day, and finally Patrick’s doctor told the nurse to call and see what was taking so long. We found that his name had been accidentally left off the schedule. They added him at 4 and around 6:30 took him down to surgery.

While we waited for the anesthesiologist to come, Patrick was his usual bundle of energy. He discovered a pretty big blue button on the wall that he pushed. He was thrilled by the alarm that sounded and how quickly people made it to the room. Yes, he found and pushed the “Code Blue” button that is used to call emergency help when a patient stops breathing or worse. I caught on and cancelled the alarm as the anesthesiologist got to the room. He only got to the button once more as we talked, which just got a big grin from the doctor.

The pre-surgery talk with this doctor scared me. He explained that there were big risks in intubating when Patrick had RSV. He also explained that the surgery might take a long time, as they didn’t know for sure how hard it would be to get a line.

Again, they gave Patrick a dose of Versed and I kissed him as he drifted off then went to the waiting room – a nervous wreck. Howie joined me about 15 minutes later, and after another 15 minutes the surgeon appeared and explained that they’d easily gotten a line in.

When I got to the recovery room, Patrick was trying his best to sit up while everyone else tried to keep him laying down. An hour later, though, in the room, he was up and full of energy. Again, he was fearless. His nurse kept calling him “wild” as he would quickly try to escape guarding hands to stand and jump, etc. Fortunately, by 10 he wore himself out completely and other than being woken by vitals, slept through the night.

Tuesday morning, we were finally able to go home. We arrived home almost exactly 7 days after we were admitted to the hospital.

When you’re confined in a little hospital room, you don’t necessarily notice all the learning your child has done. Patrick is now able to sit himself up and just needs a little more practice to master crawling on hands and knees. He’s playing peek-a-boo and other interactive games. He is a HANDFUL and it seems as though it came overnight.

He was so happy to be home with space, though, and so was I! It’s so much easier to contain a tornado if it has a little bit of space to bounce around in. We’ve had to adapt some, though, to adjust to his new skills. It’s no longer safe to use the changing table.

Patrick did manage to break his line his first morning home, so we spent yesterday morning up at the hospital getting it repaired. (Big thanks are owed to the GI staff who managed this in their clinic and saved us a trip to a very overworked ER). Between that adventure and his daily appointments this week, I was quickly reminded that, even at home, keeping up with Patrick and his needs is plenty of work.

We did see his pediatrician yesterday and she was all grins as she handed me a growth chart that showed Patrick’s weight in the 5th percentile! He’s always been well under the lines on the growth chart. We’ve never even talked percentiles.

I don’t know how we’ve been so blessed that, even with infections, he’s been really very healthy for so long. But we are grateful as we take each day at a time. Some days are harder than others, but at least this week, the outcome is worth the wait.

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.

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.

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.

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.