Tag Archives: Dr. Rollins

The line placement was a success

We are home and in our own beds after a very VERY crazy day. Before you have to read too far, I’ll tell you that the surgeon was able to get a central line into the same vein.

Now back to the day…Patrick wanted out of the room after being cooped up yesterday, but we were a little too late in our attempt and the nurse needed us to hang around to make sure medications were given on time this morning. He spent the entire 2 hours the medications were running doing some running himself around the room, despite my protests that he was pulling his line with the very short tubes.

When he finally got to leave the room, he took off literally running… fast enough that I had to run to keep up with the IV pole.

We got to the playroom and he starting flitting from thing to thing.. And then I realized that the damp spot I’d seen on his chest was more than just damp… it was dripping wet. So I looked and, sure enough, the good lumen on the central line had broken.

So, we turned and headed back to the room, picking up Patrick’s favorite child life specialist on the way back. You should have seen the nurse’s face when I walked onto the pod and said, “His central line is broken. Please call the team and the IV team right away.”

We cleaned him up, talked to the doctors, and wrapped up the line to keep it clean. Then Jo from child life helped Patrick place an IV into Tubes’ (Patrick’s medical me doll) hand. As we finished, IV team arrived and we went and got a real IV for Patrick. Explaining the procedure actually seemed to help a little bit with his fear.

Then the GI team came for rounds, got brought up to speed, and redressed the broken line to keep it sterile. We opted not to repair it as it was due to be replaced anyway. Then surgery came by and had me sign a consent.

By then, Patrick HAD to move. So we took advantage of the short break from tubes that having to wait for a bag of fluid that was safe to run through a peripheral IV (TPN has too much sugar and other goodies in it that wreak havoc on veins.). We hopped on his physical therapy bike and started doing rounds of the hospital. My goodness is that boy fast! And even with only one good hand to steer with, he was flying through the halls.

Did I mention that Patrick’s OT said that she was going to recommend that Patrick always get to borrow a bike when he’s inpatient to burn off energy and help him calm down?

Amazingly, riding the bike wore Patrick out. He was so tired he didn’t want to pedal anymore. We came back to the room, rubbed his lavender calming cream on his feet, and he fell right to sleep.

While he was napping, my cell phone rang. It was Dr. Jackson (Patrick’s GI) calling to say that he and Dr. Rollins (the surgeon) had looked at the radiology and decided it was too risky to change out Patrick’s central line. And as I started to explain that that ship had sailed, Dr. Rollins arrived in the room.

He’d just been brought up to speed and knew that the line needed changed. But he told me that he honestly didn’t know where a new line could go. We talked about how much of Patrick’s access had been lost and how he wasn’t sure he could get a catheter to pass over a wire to change the line out over a wire. Then we talked about those scary other places central lines can go like in the groin or liver. It was the first time those options seemed real and I was quite scared when he left.

Thankfully, Patrick napped a little and Brian came up and we grabbed some lunch and talked and I didn’t spend too much time alone with those thoughts.

And then Patrick woke up from his nap and Jo from child life came back with a box of things to teach Patrick about surgery. And surgical transport came to get Patrick, then got called away on an emergency, and came back an hour and a half later.

Patrick finally made it to the OR around 3:30 p.m. The surgeon was cautious, but hoped it wouldn’t take more than 3 hours. We went and set up shop in the waiting room.

And because I didn’t expect a fast outcome, we were surprised to see him back after a little over 2 hours instead

We were amazed when he told us that he’d been able to change out the line over a wire. We were even more amazed when he told us that there was so much scar tissue in the superior vena cava (the vein that enters the heart where lines are usually placed) that the wire wouldn’t go through it. And surprised yet again when he explained that somehow his wire had landed instead in another major vein called the azygos vein. He said that sometimes they do put lines in that vein, but usually have to go in surgically through the chest.

I can’t help to think that that represents a bit of a miracle.

And when we got back to the room we flushed the line. I almost wanted to cry at how smoothly it flushed. I knew Patrick’s line was bad, but feeling the contrast makes me amazed that it lasted for 15+ months.

And then, because they offered and because we were tired and homesick, we accepted a quick discharge.

We will still need to go back in a couple of weeks for a venogram to see exactly where Patrick’s veins run now. There’s this amazing process called collateralization where the body, when it starts to have thrombosis or scarring in a vein, starts to make new blood vessels instead that connect to the heart in all kinds of crazy ways. A venogram will show us exactly how those things connect.

We did one in Nebraska, but it was somewhat inconclusive. So we are going to give Primary Children’s a go.

But for now, it seemed like we’d had enough hospital and enough sedation and it was time to let everyone rest. Patrick ran around home very happy tonight. And very funny. He was making up all kinds of silly jokes that made me laugh. He even ate 1/4 of an applesauce cookie.

And on that note, I’m going to quit staying up while the rest of the household is asleep.

Thank you all for your prayers and thoughts and love.

 

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.

Possible Bowel Obstruction

For the past few days, Patrick has had a really swollen, sore belly. A lot of it has to do with his spleen and how big it gets when he’s sick or when he gets a transfusion. He’s had both this week and so his spleen was really big.

However, with a yeast infection, there’s a chance of the infections building up inside an organ and causing similar symptoms. So, yesterday Patrick went for a CT scan. The findings weren’t fungal balls or absesses.. in fact, they weren’t what we expected at all.

Yesterday afternoon a doctor came to tell us that they’d seen evidence of a possible bowel obstruction. He then went on to describe findings that were kind of confusing to us. Basically, he explained that Patrick’s intestines were very dilated before an obstruction and very narrow after it.. kind of like when you blow up one of those long balloons and the air doesn’t go all the way to the end of the balloon.

The reason this confused us is that it sounded exactly like a description of the problem of a narrow colon that we’d discovered after Patrick’s ostomy was taken down. We didn’t know if the findings were new or if they were just telling us what we already knew.

Yesterday the GI attending and the surgeon, Dr. Rollins, who’d reconnected Patrick’s intestines back in September sat down and looked at the images together. In the end, the decision was that Patrick’s small intestine is much more stretched out than it previously was and that the place where the small and large intestine were sewn together is still very, very narrow and probably is the cause. (Like if you were to pinch your long balloon so the air can’t pass through all the way to the end.)

Now the question remains if this is something new or not. It’s possible that the surgical site has scarred making the connection even more narrow and unflexible.

Tomorrow morning, they’ll do another study where they put contrast into his belly and watch it move through to his intestines. If they find that the opening is about the same size at it was after surgery, they probably won’t do anything about it right now. However, if they find significant narrowing, then Patrick will probably have surgery tomorrow night or sometime Tuesday. They’ll take the scarred section out, taper down the small intestine to make it a better fit to the narrow colon, and sew the two back together.

Both the GI and the surgeon are saying that they think it unlikely that this problem is completely new or that Patrick will need the surgery. However, they want to prevent bigger problems in the future for him, if they can. So – they’ll do the study and then we’ll talk about it.

Either way, Patrick should be able to get a new central line in the next couple of days. They’ll try to put in a “double lumen” meaning that two tubes go into the vein, instead of one. The double access will make it easier to give antibiotics and antifungals and might make it possible to help prevent them by treating the unused lumen with medicines to prevent infection.

I’ll do my best to keep you updated here as we find out more.

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.

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.