Author: geekino

Patrick’s anatomy

For some of our more curious readers, here is an image that can hopefully help you visualize what all the hoopla of “bowel obstruction” is about. The connection point between large and small intestine isn’t very visible because it’s so narrow, but the results of this narrowing is apparent in how much the small intestine has been stretched out as a result of the pressure. Kinda reminds me of those cartoons where there’s a kink in a garden hose that fills and fills until it looks like a big balloon.

In other news, we should find out in the morning whether or not we can go home tomorrow. The docs are a bit worried about making sure that we have a plan to feed Patrick without causing him to loose too many fluids so it’s hard to keep him hydrated. So we’ll see how he does for the night and they’ll make a decision in the morning.

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.

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.

Not again!

Infection is a vicious cycle! The cure makes you vulnerable for further infection. A couple of posts ago I wrote about a bacterial infection that hadn’t been fully treated by antibiotics back in February. Well, at the beginning of last week that same infection grew back yet again! We don’t know exactly why, but as a result we spent a few days in the hospital while they worked out a treatment plan that would help to knock this infection out for good.

The plan included a change to the antibiotics he takes to control overgrowth of bacteria in his gut and a regimen of super high dose IV antibiotics prescribed for the next 6 weeks.

We were sent home on Thursday without Patrick ever having really been too sick. We joked that it must be time to plan a family vacation because with so many antibiotics, how could Patrick possibly get sick again?

That’s what we get for uttering the word “vacation”. Tuesday of this week Patrick wasn’t a very happy kid. He followed me around all day just wanting to be held. That night, he got another fever. At midnight, when it was rising, we called one of our favorite doctors at the hospital, Molly O’Gorman. She also couldn’t explain the fever, given the antibiotics, and so she recommended we stay at home till morning with the hospital would be less busy. So, we gave him some Motrin for his fever and I set my alarm clock to get up every hour to check to make sure he was still ok.

At 5 a.m. Patrick woke up just screaming. By 6 his fever was back and climbing rapidly. We gave him more Motrin to keep him from getting into even more danger and took him to the ER. He seemed to feel ok with the Motrin and the doctors were stumped as to the cause of the fever. But throughout the night he just got sicker and sicker. Every time his fever reducers wore off he’d have chills and high fevers and nausea.

His first night in the hospital was just miserable! I think we slept a whole 3 hours. By morning, the blood cultures came back with a definitive result, Patrick had a yeast infection in his central line.

For those of you who don’t know, Patrick fought a yeast infection for most of last summer.. and almost lost that battle. Yeast has to be the scariest bug I’ve ever seen him with. Unfortunately, this infection doesn’t seem to be much of an exception.

Yesterday was an eventful and stressful day. Because yeast loves to set up shop in catheters, Patrick’s central line had to be taken out yesterday. He’s strong and wiggly and fiesty enough now that he has to be sedated for this to happen.

This had a few ramifications for him. First, he had to have a transfusion. His spleen gets greedy whenever it’s sick and he becomes anemic. He’d fare ok for normal things, but in that state would not have been strong enough for anesthesia. The transfusion helped his blood counts, but it also further fed his blood hungry spleen and as a result he’s all puffy , swollen and sore today. His belly is hard as a rock and hurts, too.

Also, Patrick still has to have IV’s to keep up his blood sugar and give his medications. Right now, he needs 1 all the time, and 2 most of the time. But between the scarring and damage to his veins from previous IV’s and the effects of this bad infection, they’re having a hard time getting them in, or finding places to draw blood from for needed blood tests. Yesterday, he was poked over 10 times in 12 hours.

My poor little munchkin is sore and sad and sick. He has to have splints on his hand and arm to keep his IV’s from being pulled out, so playing with toys is frustrating.

The good news is that pulling out the line and treating with antifungals is helping. He hasn’t had a fever since last night! And this morning, for the first time in days, he is resting well enough that I was able to put him down. Hence, I found time to write this blog.

I apologize for the lack of pictures so far. When I get a minute, I’ve got some adorable stuff from our hospital stay a couple of weeks ago. This stay so far Patrick hasn’t felt well enough for us to do something as frivolous as picture taking… but now that he’s on the mend, I’ll be doing that soon.

As for mom and dad, well.. we’re pretty darn exhausted. It’s been nearly impossible to get a good night’s sleep.. or even to get a nap in. On top of that, we’re worried. We still have bad memories and plenty of heartache from our last experience with yeast infections. It’s scary to be facing one again… And it is the hardest thing in the world to watch your child suffer and not be able to take the pain away.

Still, all we can do is live each day as its given to us. It is more than a miracle that Patrick is still with us. He fought so hard to be here and is fighting still. We are doing all we can to make sure that he gets the best out of each moment he’s here.

We’ll keep you posted as we know more. For now, it’s just a matter of waiting for the medicine to do it’s job and then keeping these two infections from coming back.

We need silent auction items

There are SO MANY exciting things coming up this spring for Patrick! The outpouring of generosity from friends, family, and complete strangers is astounding! I don’t want to spoil the fun by telling you all of what lies ahead, but there is one event that we can use your help with.

On May 1st, we’ll be having a benefit concert and silent auction. We’re pretty darn excited about the performer’s who’s coming. (Just for fun, all I’ll tell you now is that he’s a well-known local musician). We’ve already had some items donated to be auctioned including artwork, event tickets, and some amazing handmade items. We need your help finding enough to make this a great auction.

A silent auction is only limited by the imagination. Here are a few ideas:

1) Hotel stays, rental cabins or condos, restaurant gift certificates and other vacation or “night out” items.

2) Food gift baskets from bakeries, gourmet groceries, etc.

3) Personal services like hair styling, massage, manicures

4) Handmade items

5) Tickets to sporting events, plays, etc. (Know anyone who’s not using all of their season tickets this year?)

6) Household services such as carpet cleaning, gardening, car care

7) Recreation: Admission to theme parks, museums, golf course greens fees, ski lift passes, etc. Movie passes.

8) Themed gift baskets (For example, a basket of scrapbooking supplies, a collection of sporting goods, a basket of baby items, a collection of music or books, a basket of gardening supplies, etc.) Do you or someone you know sell or work for someone who sells items that they might want to donate?

9) Bigger individual items such as tools, fishing poles, golf clubs, etc.

10) Sports memorabilia (We’re requesting from local teams, but do you have any personal connections?), autographed books or music, etc.

This is just a handful of ideas. Really, the sky’s the limit.

Remember that all donations are tax-deductible. And, if needed, we can provide evidence of our 501(c)(3) status, donation-in-kind receipts, and anything else along those lines.

We need all donations by April 16th to give us time to get them ready for the auction. We’re also looking for volunteers to staff the auction and concert.

We’ll be sending more details about the event and how to buy tickets soon.

Thanks again for all that all of you do for our family!

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.

The waiting game

It’s 10 minutes past midnight and I’m sitting up waiting for Patrick to fall asleep again after being woken for vitals just moments after finally drifting off to sleep. This was the 4th nurse we’ve had in 12 hours.. That’s right, a new nurse for every set of vitals. And it’s making me homesick.

Patrick hasn’t been himself all weekend. He had low-grade fevers and was more irritable than normal. Finally, yesterday morning I gave in and called to request blood cultures. I was guessing that he had an ear infection or some other ordinary childhood illness.. But as it turns out, he’s got another infection.  Yesterday’s cultures grew a bacteria that so far is relatively similar to the one that caused his infection a month ago.

And so now we’re playing the waiting game. We won’t know until sometime tomorrow (or is it today?) whether or not the bacteria is the same. If it is, the question becomes why didn’t it go away before and what can be done now to get rid of it. In the meantime, they’re giving IV antibiotics that I’m hoping will help him feel better soon.

He’s really not acting all that sick. This is good news as it means that we can probably treat the infection more easily. It does mean he’s a little more stir crazy because he wants to be crawling and exploring like he can at home. A crib and a playmat are just don’t seem like enough surface area to him.

That it’s RSV season makes this a unique hospital stay. Because the Infant Unit is full with babies sick with RSV. We’re tucked away in a corner of the Children’s Surgical Unit. It’s quiet here… much more peaceful than the Infant Unit in respiratory season. We’re getting to know a whole new set of nurses which can be disorienting.. especially since they rarely get babies here. But Patrick easily wraps any nurse around his little finger, so we’ll have friends here soon, I’m sure.

I’m hoping that the day will bring enough information that we’ll be able to end the waiting period and move on to a treatment plan. When I know more, I’ll try to put it here on the blog.

On a different note – any of you out there reading this post who haven’t done so already – please visit the “Activities and Events” page. Click on “Five for February” and send the message on that page to 5 people who you think would donate or forward the message or both. We have been stuck just under the $5000 mark for some time now. We only need 8 people to give $5 and we’ll cross that threshhold.

A trip to the zoo

We took Patrick and his cousins (and their parents, and grandpa) to the zoo yesterday. The last time we were at the zoo, Patrick was far more interested in the enclosures than in the animals themselves.

This time, however, he started to take notice that there was something different there to see. In fact, in the giraffe house, he tried all he could to get me to hold him close enough to touch the giraffes. (This could be especially dangerous because one of Patrick’s favorite games is to bonk his head into things he likes).

As is often the case with Patrick, this zoo trip was a little more complicated than your average outing. Patrick’s temperature was a bit high yesterday, so I carried a thermometer around in my pocket to check it regularly.. With the children’s hospital less than 10 minutes from the zoo, we figured we’d see all we could, and then run quickly if he got into the danger zone.

On top of that, while putting Patrick into his stroller, I managed to snap the tubing for his lipids in half. Thankfully, the lipids are just his “cheeseburger”.. needed fats and calories, but optional enough that we could wait till we got home to fix it.

Thankfully, the fever hasn’t evolved into worse and the lipids were restored without incident. I’m sure Brian’s brother thinks that we always have this kind of complications whenever we go anywhere. And, I’ll admit, it happens more often to us that I’d like. But as frustrating as it may sometimes be, it really is worth all the extra work it takes to do these family things when we can.

I am thrilled that Patrick was able to enjoy the zoo. And that he picked my favorite zoo animal to try to pet.

Hospital stays are different now

Patrick’s definitely growing up. He’s not the tiny little baby I got used to having in the hospital with me. The more he learns to crawl and play, the smaller his hospital room seems.

http://www.facebook.com/v/1275411359392

This video was taken about a month ago while Patrick was admitted for a line infection. Between the infection and a cold, he was running a fever, so we left him dressed in a hospital gown to keep him cool. Nothing quite like a little diapered bottom dancing around to make you smile.