Category Archives: Motility problems

Transplant Day 30 and warranty maintenance

IMG_20141129_192041Patrick finally got some good sleep last night. In fact, he was well on his way to sleeping all day. At 10 a.m., he had succeeded in going back to sleep again no matter the interruption. Therefore, I was in my PJ’s with hair uncombed when the team came for rounds.

I hopped out of bed and found them reviewing the imaging from yesterday. And what they saw looked like good news. The images of the gut still looked healthy throughout. The only sign of trouble was right where the stoma came through the abdominal wall. Right before, there was some dilation that showed that there was a narrowing there.

I asked what that meant they could do.. the answer was pretty straightforward. The surgeon, Dr. Mercer, could take him to the OR and open up the stoma a little more. He said he had some time on his schedule and could take care of it today.

Then, he turned around and said, “Don’t be surprised. My OR nurses are very efficient today. They may come for him in 20 minutes.”

So I called Brian who was finishing up laundry and told him to come quick, which he did. I hurried and got dressed. He got Patrick cleaned up and dressed. And then, sure enough, they came to take Patrick to the OR. The nice thing about this plan was that there wasn’t much time to worry. But it certainly scared and frustrated Patrick. It was hard to send him off knowing how worried he was.

The procedure was quick and successful. Dr. Mercer said that as soon as he released the pressure, he felt like the bowel said “Ah! That’s better!” There was a little scar tissue causing a twist and then a little bit of a narrowing in the abdominal wall and he thinks that was all the problem that was there. So now things should work very well, even when Patrick is ready to eat solid foods.

They also did Patrick’s 3rd scope and biopsy while he was asleep and reported that the bowel looks pink and healthy.

Dr. Mercer said no worries about this. Just consider it some warranty maintenance.

According to the post-anesthesia nurse, Patrick woke up and immediately asked if everything was done. Then he went back to sleep. When she called me back, he was awake again and sad. He asked me to lay in the bed. Then he told me he didn’t want to talk. So we just layed there together. I even laid with him as we came back to the room.

Unfortnately, after we got back to the room, he started to feel worse and worse. His oxygen saturation was low so they had to turn his oxygen back on. That isn’t a huge surprise given the condition of his lungs. However, it was a surprise when he started running fevers.

It sounds like his full tummy might have made him aspirate (inhale) some bile as they were intubating. We’ve seen this a couple of times with him and it’s pretty consistent. Some fevers. Maybe some trouble with his lungs called “aspiration pneumonia.”

The good news is that they are already doing all of the possible prescribed treatments. Antibiotics. Chest x-rays. Respiratory therapy. They did an x-ray and it looks good. His lungs sound good. We were able to get him settled down enough to keep some tylenol down and that has brought the fever down a bit, too.

He got feeling good enough to sit up and play with some playdough and he is asleep now. They have even been able to turn down the oxygen some. He’s also been asking to drink water, something he hasn’t wanted for well over a week… that tells me that his tummy has felt too tight for a while now and how that it doesn’t (and his mouth is dry from the oxygen), water sounds good. Thank goodness his belly is to suction right now and he can drink all he wants.

The great news is that his stoma is working great now, too. The funny thing about raising a kid with intestinal problems is that there are so many occasions to be extremely excited about stool.

Transplant Day 29 and some gut rest

Well last night was frustrating. The nursing staff was spread thin because of the holiday and it took a lot longer than usual for them to respond to the non-critical things. From 10-11 p.m. one of Patrick’s antibiotics ended and the pump alarm rang and there was no one to shut it off. I silenced it for a while, but Patrick insisted that it was the nurse’s job and my job was just to cuddle and talk to him. How can you argue with that?

Unfortunately, the nurses were trying not to bother him while he slept, so every time Patrick woke, they’d try to come in and do vitals. Problem is, that mean they were in the room half an hour each of those times and we were awake at midnight and 5 and 5:30. (Not complaining about nursing… just stating trouble with sleep that comes with not doing well.) Then, at 6 Patrick’s nurse came to deliver the news that the resident didn’t want to come drain his gut again “unless he’s really uncomfortable.” Well – 10 minutes later, Patrick woke up crying. He said “bucket” and, before I could react, he threw up all over everything.

Yes – uncomfortable. Apparently, with nothing moving out of his gut and feeds still moving in, Patrick’s gut and belly had finally had enough.

So we got him up and changed the bed and gave him a bath and turned on some Blues Clues. And we waited for the doctors to come for rounds.

Rounds were actually kind of a relief today. They talked about different causes for this new problem and tests that could look for those problems. They aren’t thinking rejection at this point.. perhaps some inflammation or something called an ileus where the gut just temporarily stops moving or a mechanical issue with the muscle wall around Patrick’s stoma or a type of irritation called pneumatosis.

Then, Dr. Mercer came into the room to try out draining Patrick’s belly himself. When he saw how little a catheter needed to go in to immediately drain, he was actually really relieved. He said that ruled out a lot of possible problems. It also eliminated the perceived huge risk of draining. He showed Brian then and there and wrote orders that the nursing staff or parents could do that as often as needed.

They also stopped feeds, restarted TPN, put Patrick’s g-tube to suction so he wouldn’t have to throw up any more, switched as many medication as possible to their IV forms, and ordered some tests. The rest of the morning was very busy. Patrick had an x-ray of his abdomen and then later a CT scan to look specifically for pneumatosis or any other narrowings or problems. I guess we did a good job selling the idea of how fun a CT can be because Patrick had already been asking if he’d get to go in the “donut” again. We got comments from the radiology staff and nurse about how comfortable he was doing something that terrifies most other children.

Patrick and daddy in a wheelchair headed to CT

Patrick and daddy in a wheelchair headed to CT

Later today, they’ll come do an ileoscopy (scope through the stoma) and biopsy again.

Hopefully, one of these tests will show us what is going on. It is possible that Patrick’s belly just needs to rest and reset after all of the trauma of last week.

Regardless, with symptoms alleviated, the rest of yesterday was a good day. Without pain, Patrick was feeling up to sitting up and playing more. (In fact, he was more than a little afraid of his bed after all the scary things that had happened there this past few days, so he was doing all he could to get me to let him be in other places.) This means that his lungs have opened up and he was able to wean off of oxygen. His lungs are still recovering and they are trying to get the fluid all the way out of them and the lungs totally reinflating. His oxygen saturation is a little bit low and he sets off alarms when he sleeps, but he quickly rebounds and no one comes running at this point.

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Having family here definitely lifted his spirits, too. He and I were both worn out and frustrated and mad yesterday. It would have been a hard day had just the two of us been trying to be together. But Patrick’s family made him feel like a million bucks. Really, seeing the pride in his eyes when I came back from doing laundry (it was a big laundry day) at having his uncle all to himself was impressive. And seeing him happy and laughing as he played with his cousins was a big treat, too. This little boy needs people and fun.

Brian went with Mark’s family to the zoo in the afternoon and Patrick and I took a much needed nap and some quiet individual play time.. But then they came back and we played in the playroom and went out to a break room to eat dinner.. and then back into the room for another priesthood blessing. (Patrick asked if Mark could help daddy give him one.) Then they gave him some gifts, including a ball that was then used to play monkey in the middle. He laughed and laughed.

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When they left, I let him stay up and watch some of his new Dora DVD while we finished up his care and I got ready for bed.

I’m finishing this blog post up in the morning. Patrick has slept soundly all night. X-ray snuck in at 5:30. (Patrick’s nurse is fairly mad they did because she guards to be sure they don’t wake patients who don’t need it.) Patrick was really upset about it, but then tucked up his arms under my side and went back to sleep. A little later they came to draw labs, saw his bed needed cleaned up, and the same happened.

After such a long and hard week, it is so good to see him comfortable and sleeping peacefully. Hoping that goes a long way towards a better day today.

Patrick’s days are busy right now. He starts the day with labs at 5:30 and a chest x-ray at the latest moment that the nurses will allow to get him sleep but still get the results on time for rounds. He has meds at 7 and at 9, and because he doesn’t feel well, that means running zofram for nausea first. He has 2 antibiotics each given 3 times a day with a benadryl pretreatment before. He has respiratory therapy 3 times a day. He has vitals every 6 hours. And diapers. And stoma care. And a bath. And pain management. And getting up to walk. And trying not to go stir crazy.

It’s been 4 weeks since transplant. One thing we know from this journey.. So much can change in a day, or week, or month. We really appreciate all of the ongoing support and love that you offer Patrick, near or far.

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Transplant Day 28 and Thanksgiving

I didn’t get to blogging last night. Patrick has had some really good moments, some really difficult moments, and a very busy treatment schedule for the past 2 days. This is the first quiet moment I’ve had. So let me catch you up.

Two nights ago, I emptied Patrick’s ostomy bag and put him to bed. (In case you don’t know, an ostomy or stoma is a place where a surgeon has made a small piece of intestine come out of the skin. It drains into a bag. Patrick needs to have one so they can easily and safely do scopes to watch for rejection for the next year. Eventually, they’ll take it back down and reconnect him.)

Anyway.. I put Patrick to bed a little before midnight. By morning, his ostomy bag was still empty. When his nurse gave him his morning meds, he couldn’t keep them down. And as the day wore on, it seemed his discomfort was growing more and more. But we told the team and the surgeon said get him up and maybe it will wake up.  If not, then call and a resident could come use a small tube to help break up and drain out any small blockage.

Well, 2 p.m. rolled around and still nothing and Patrick’s belly really hurt. We called the resident. She was really hesitant and thought that it was dangerous to put a tube into Patrick’s stoma and new bowel. So she wasn’t going to do it without permission. The fellow (who is over the residents) had been in the hall pulling up chest x-rays during the conversation, so he hadn’t heard the instructions.  It took another hour and a little bit of firm insistence before she finally consented to come do the procedure.

But, once she did. Patrick felt lots better. The nursing staff decided that they would insist that this be done once every 8 hours at least. Because of that, Patrick was much more comfortable for the rest of the afternoon.

All that pain made it so Patrick didn’t feel much like getting up and moving much. Thank goodness for family, though. When Brian’s brother Mark heard that we were going to be here for Thanksgiving, he and his wife immediately started to make plans to come celebrate Thanksgiving with us. They rented a house for the weekend so they’d have a kitchen to cook in. They drove here from Denver, arriving Wednesday night. Then, the night before Thanksgiving, they went and found a grocery store, bought all the food for the meal, and went to work.

So yesterday morning, while Heidi stayed behind and cooked, Mark and his kids came to play. They threw a ball, blew bubbles, put on a mini puppet show. They brought Patrick big smiles, even though he didn’t feel very well. Then, they went to help pack up the food and Patrick took a nap. He slept through dinner, and that was really ok, since he wouldn’t have been eating anyway.

For a Thanksgiving dinner in the hospital, this meal was amazing. As I’ve said before, this hospital is abandoned on weekends and holidays. So we set up dinner on one of the long tables in the cafeteria. We all ate until we were well stuffed.  The kids played in the cafeteria and we rested and talked.

Then I came upstairs so Patrick wouldn’t wake up alone. Good thing, too, as he woke up crying in pain. His nurse got him a hot pack and some pain meds, though, and with his belly a little less full it helped.

Brian came up after his family had left for the evening and with pain medicine on board, Patrick was ready for a walk. We got the nurse to bring in a cart for some portable oxygen. His walking was stiff and clumsy and guarded… But getting up and moving seemed to have helped his lungs. His oxygen saturation was much better for the rest of the evening. That, after a day of restarting respiratory therapy, seemed to make a really big difference.

It was a busy evening, though. Nursing staff is short on a holiday so the nurses were running like crazy. But still, with several antibiotics on the IV pump in the evening, the pumps just beeped and beeped.  Finally, we made it to sleep at midnight. Unfortunately, vitals woke up at 5 and then labs at 5:30 and so we were both exhausted by morning. Therefore, this late post. I’ll start writing about today next and hopefully post after adding a bit more right at bedtime.

We have bacteria species, and a plan to try to stay at home

From our hospital stay 2 weeks ago: Playing with another family from our support group. Daddies are awesome!

From our hospital stay 2 weeks ago: Playing with another family from our support group. Daddies are awesome!

We’ve been home for a couple of days now. By Sunday evening, Patrick was feeling 100 times better. He started talking and playing again. We went to the playroom and raced cars down their giant car ramps. His cousins came to visit and while we waited for them, he was playing around in the lobby by walking every silly way he could think of, including with his eyes covered.

But the night shift rolled around and, yet again, they didn’t send up his melatonin on time. And the pumps didn’t like running TPN, lipids, and antibiotics all at once. And he didn’t get to sleep till 11. And then he woke up vomiting (because his g-tube had to be clamped because the medications had been late).. not once, but twice. Only the melatonin had come up by then and so he couldn’t wake up all the way and it was well, just sad..

From two weeks ago: Pushing Daddy in a wheelchair as a form of occupational therapy. Heavy work=happier child

From two weeks ago: Pushing Daddy in a wheelchair as a form of occupational therapy. Heavy work=happier child

And by morning, I was fed up. It’s time to go home when hospital routine is making him feel sicker instead of better. So I asked them if we could finish up care at home. And they agreed. (With some cautions, but agreed.)

And so we came home and the antibiotic thankfully was due just once a day.. and so we all got to visit with Brian’s family who has been in town visiting, and then we got to go to bed and sleep at night. First time in 3 weeks that I didn’t have to be up at midnight for antibiotics.

And we’ve all been feeling much better.

One of the joys of our July hospital stay was the discovery that because we have a Physical Therapy goal to learn to ride a tricycle, if the doctors order physical therapy for Patrick, he's allowed to borrow a bike. He learned to ride a tricycle during that hospital stay.

One of the joys of our July hospital stay was the discovery that because we have a Physical Therapy goal to learn to ride a tricycle, if the doctors order physical therapy for Patrick, he’s allowed to borrow a bike. He learned to ride a tricycle during that hospital stay.

Well, except for Patrick this morning. Again today, naughty behavior has been emerging. And the nausea, which never completely went away, seems to be getting worse. And I was really beginning to worry.

And then the phone rang. It was Patrick’s pharmacist. AT LAST they have species on the bacteria. Our two best-friend bacterias… Klebsiella Oxytoca and Citrobacter. The drug-resistant bacteria that have set up shop in Patrick’s gut. Only this time, the Klebsiella is no longer susceptible to Rocefen, the antibiotic that I threw a fit to get them to put Patrick on. It’s mutated some and that drug won’t work anymore.

One of the best ways to pass time when you don't feel well in the hospital is doing crafts. This past week, Patrick discovered glitter glue and puff paint. Our lives will never be the same.

One of the best ways to pass time when you don’t feel well in the hospital is doing crafts. This past week, Patrick discovered glitter glue and puff paint. Our lives will never be the same.

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So tonight, they’ll be sending me a new antibiotic called ertapenem. And they’ll be sending a nurse to keep and eye on Patrick during his first dose.

And hopefully by tomorrow, he’ll be feeling better.

Primary Children's Hospital has it's own LDS branch (congregation of the Mormon church) and every Sunday, volunteers will bring primary lessons and longs to any kid who wants them. Here's Patrick enjoying singing time.

Primary Children’s Hospital has it’s own LDS branch (congregation of the Mormon church) and every Sunday, volunteers will bring primary lessons and longs to any kid who wants them. Here’s Patrick enjoying singing time.

But I’m still happy that we’re home. Because at least he’s sleeping through the night. And I can keep a better routine so he doesn’t feel as sick. The good news is that this new medicine can still be given just twice a day and we can all still get some sleep. I certainly trust that things will work more smoothly with our GI writing orders instead of an intern, and our home care pharmacy and home nurse helping provide his care. No missed or forgotten doses of medications. And there is still a tiny chance that I can catch up on dishes and laundry. And feed us something other than cafeteria food. I think we are all happier at home. Even if Patrick does miss visits from Child Life with fun new toys to play with.

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One of Patrick’s favorite people in the whole world: Jo from child life. She is the sunshine of every hospital stay.

 

When the cat’s away, the mice will….

…Well, the idea was to play. This is the 2nd and last night that Brian will be away on business and I thought that, other than a Wednesday full of appointments, I had a pretty laid back schedule. So far, this past few days have been anything but laid back.

Wednesday morning, right after kissing Brian goodbye, I went to set out Patrick’s morning fluids. They weren’t cold. This was especially concerning as I’d been setting the fridge to colder and colder settings all week and there was snow on the ground outside.

So, as Brian was finishing up his last work before heading the airport, I was scrambling to shop for a new fridge. Thankfully, Patrick’s morning therapy appointment was cancelled which gave me just enough time to hit a few stores before his nap.

After his nap, we went to his monthly appointment with his GI at the hospital. All the news is good. Patrick is growing at a good rate right now… he’s still 50th percentile for weight… just above the target weight for his height. His liver is healthy. He’s about as stable as can be.

The only change we discussed was a change to his antibiotic regimen. Patrick takes oral antibiotics to help keep bacteria from accumulating in his stomach and gut. Only lately, it seems that he’s had more and more problems that lead to stomach upset, vomiting, and diarrhea. So we switched around the medicines a little bit in the hopes that a new plan would make a difference, and then headed out.

We stopped at Sears on the way home to pick up the fridge that I’d picked out. You should have seen the look on the man’s face when I told him I wanted to put it in my car with my baby. Patrick wasn’t too excited about the idea either.

Still, we made it home and got the fridge up to his room and furniture and Patrick ready for bed.

We’d almost made it.. and then, as we were saying goodnight to Brian by video chat, Patrick stepped on the tube that was draining from his stomach and I heard a “pop”… and looked down to see that his button on the floor, the balloon that was supposed to hold it in still inflated.

Thankfully, my neighbor answered when I called and came quickly. It wasn’t easy, but we managed to get the button back in and Patrick comforted and into bed.

Thankfully, today was easier. Patrick and I managed to stay home the whole day with time to help my sister with a paper for school. But I got to talk to the GI clinic several times.

I started it. I called them to talk about how very difficult and painful placing buttons has been recently for Patrick. So first the nurse called back to find out more. Then Patrick’s dietitician called to talk to me about his TPN orders.

Apparently, as Patrick has had more and more stomach upset, and we’ve had to give more and more replacement fluids, his labs have been showing increased dehydration. They decided to try to make some changes to help him be more comfortable. They’re adding another half a liter of fluid to his TPN, plus some electrolytes so that we won’t have to give as much to catch up for what he loses.

Then, this evening, Patrick’s doctor called to talk. We reviewed the plan for hydration, and then he asked about the g-tube.

In the end of the conversation, we decided it was best to check to make sure that there isn’t a space between Patrick’s abdominal wall and his stomach making it hard to get a g-tube in. They’ll do that by taking out the tube, and then putting it back in filled with some contrast. This will let them see if there are any spaces or leaks to be concerned about.

We talked about doing this tomorrow, and if not tomorrow, then sometime next week. The good news in the plan is that they’ve offered to give him a little bit of sedative to help him calm down and not remember the discomfort.

That’s a lot of changes in just a couple of days. Thankfully, I’ve had all the right help come at all the right times. Thank goodness for good friends, visiting teachers and family who’ve been there to help. And I’m sorry for those who may have called and gotten a frazzled forgetful me who couldn’t even think through all the details of this, let alone speak them.

Most of all, thank goodness for a good-natured, patient, loving little boy who has been incredibly cooperative and given hugs at all the right moments.

Brian may rethink his next business trip.

Childhood Illnesses

In the pre-transplant world, it’s good for Patrick to be building immunity. So, Brian and I have not been overprotective. Even common childhood illnesses can mean extra work with Patrick, though.

Yesterday morning, Patrick wasn’t as interested in breakfast as usual. (Not that he ever eats a lot, but breakfast is the meal he eats best.) Then he opened his mouth wide and I spotted the culprit. His tonsils were bright red and covered with little bumps.

Great. So the first question is “Is this a normal childhood thing? Or is this a complication of Short Gut?” A childhood illness we might be able to keep at home under mom’s care. However, a complication such as acid erosion or varices could mean something much more serious. Where to start?

First, call dad so he’s not caught off guard by a frantic call later. Second, call the pediatrician.

Patrick’s got one of the best pediatricians I know. However, if she’s not around, then finding the right backup doctor can be tricky. Patrick’s not a simple kid so even simple illnesses take some creative treatment. So yesterday, since Patrick’s doctor and her residents were all booked up, the scheduler did some digging and found me a pediatrician in another office.

At noon it was pouring rain. At 12:30 Patrick finally conceded that he needed a nap and fell asleep. At 12:45 I juggled a sleeping Patrick, diaper bag, medical history, and me out the door and into the car. There ought to be awards for moving a sleeping child without waking him – especially in pouring rain. We just made our appointment at 1.

Miraculously, the scheduler had found me a pediatrician with other Short Gut patients. (This is an especial miracle, since she relayed the message to the doctor that Patrick was medically complex because he had “Short Duct Syndrome”.) She put me at ease that what I’d seen was most likely the result of a virus that’s going around our area right now. Then we spent 10 minutes trying to get Patrick to open his mouth wide enough for her to see.

Sure enough, Patrick has Herpangina, a virus caused sore throat with blisters and sores on the throat. There’s no treatment for it, other than to try to relieve symptoms with soft foods. It’ll last about a week.

Of course, childhood illnesses aren’t simple when you’re sick enough to need a transplant.. no matter how healthy you look on the outside.

The bug has upset Patrick’s tummy that doesn’t have enough gut to absorb extra fluid with.. and too much stasis to even pass it through. So about 2, Patrick spit up for the first time. I drained 2 cups of fluid in 10 minutes from his stomach. He seemed to be feeling better eating french fries at a fast food restaurant last night… Until, of course, he ate one two many and it all came back, plus another several cups.

I never dreamed I’d be in a situation where my kid throwing up all over in a restaurant would be, first, not a surprise and second, not a disaster. It was a mess! But I knew it just meant it was time to go home and rest his tummy. Drain first, french fries second.

I’ve been running extra fluids all day to keep up with what he’s losing as I vent his tummy to prevent future episodes. And, I’ve been watching the thermometer.

See, if this illness follow it’s normal course, then Patrick will probably get a fever, too. If it gets high enough, we’ll probably start asking those questions I hate. “Do we call?” “Does he need cultures?” “Do we go to the hospital?” I hate to make him go sit cooped up in a hospital room for a little sore throat virus. But sometimes it’s better to be safe than sorry.

In the meantime, though, Patrick is being completely endearing and adorable today. He climbs up in my lap and moans his best pitiful moan. Then he grins and snuggles down. It took a conscious effort to not just sit and hold him while he slept today. How can you be frustrated by someone who’s so cute and patient when they’re sick?

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.