hospital stays – Page 5 – Patrick Hoopes

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!

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

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.

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.

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

Not again!

Here’s the ultimate test of the value of the switch to wordpress. I am trying a quick blog to update everyone everywhere about what’s going on.

20130718_060340 — Taken a couple of weeks ago, during our last admission. He’s watching the construction going on outside the window.

So, quick version.. About 3 weeks ago Patrick had a really bad few days. His stomach was upset. He had a hard time concentrating. He was in a BAD mood and into everything. It went on long enough that even though his labwork didn’t show any signs of trouble, I requested a set of blood cultures and skipped a nap to drive all the way to the hospital to get them done.

And then, that night, as I was getting Patrick ready for bed, I checked his temperature and discovered he had a fever. We called his doctor and came up to the hospital.

We were here 6 days, our longest stay in over a year, because it took forever to get the infection to respond to the treatment. (For various reasons I may or may not expound on later.) And because it took an extra long time to get the right antibiotic dose. It was a frustrating stay because he never got horribly sick, but he had staph epi in his line and it’s notoriously hard to clear. And the longer it took to clear, the more the doctors wanted to try a different approach (understandably.)

And, well, because the night shift just couldn’t manage to help him sleep through the night. But that’s a gripe for another day.

I’m afraid I jinxed us. One of the dramatic changes the doctors wanted to do to be sure to clear the infection was to switch from using ethanol to using vancomycin, a targeted antibiotic, to protect the line.

I raised more than a little bit of a stink. I insisted that we still use ethanol at least 4 hours a day. I made the attending come discuss it with me. And I won.

But i felt guilty. And when we went home, I did my best to follow doctors orders and put a heavy preference on vanco locks over ethanol.

Fastforward to today. For the 2 weeks since bringing Patrick home, I’ve been giving antibiotics every 8 hours.. including a dose at midnight. Tonight was supposed to be our last night.

Patrick’s cousins are in town and we’ve been having a grand family party. Aquarium trip. Hiking in the mountains. And today they rented a bounce house.

Patrick and I were very excited about today. Only one matter of business to take care of. A visit to his physical therapist. We have been waiting for MONTHS for a new DAFO (brace) for his foot to help with his worsening muscle tightness. And, Patrick has been dying to show his therapist how he’s learned to ride a tricycle.

Well – we got to the therapy office. And we got in the elevator. And Patrick’s breathing got a little shallow. And he gave a little shiver. And a hundred memories rushed back into my mind and I knew something was wrong. I remembered what a bad and out of sorts day he had yesterday, how his tummy was upset, how he had a hard time concentrating and kept getting into trouble.

So the elevator doors opened and I didn’t get off. Pushed the down button and went straight to the family clinic on the first floor. And I asked for a thermometer.

A nurse came out and checked and at first his temp was normal, but she rechecked and got 99.0. In his low ear.

So, we hopped in the elevator and went back upstairs to cancel our appointment.

Patrick was distraught. He didn’t want to be sick. He wanted to see Miss Holly.

Well, Miss Holly came out and I explained what was happening and she explained that the brace company had rejected the cast we’d sent as a model for his foot and asked her to recast. If we missed this appointment, it would be another month without a brace.

So – we made a deal. I’d call the hospital, she’d cast his foot to get a mold for the brace. Patrick would, well, try to cry more quietly.

By the time we left the therapy office, Patrick was sold on going to the hospital. So, we hurried home. Checked a temp. 101.8 this time. 15 minutes later. I grabbed the transplant go bag because I didn’t want to waste time packing, gave him some tylenol, and we booked it up to the ER.

The tylenol worked. Mostly. His fever was the same when we arrived.

And so, here we are. We are antibiotics to cover all the major bacteria, and an antifungal. I threw a bit of a momma bear tantrum when they tried to tell me they didn’t think we needed the antibiotic that kills his recurring kleibsiella bacteria.

He doesn’t feel well. He is tired. He only napped for 10 minutes. We have tried going for walks and in the end, he just prefers to lay in the bed.

And so, here we are. Hoping culture results are fast and clear. Hoping we are giving him the right drugs. Wondering how we’re going to make tomorrow bearable.

Just like every summer.

Mid-July rolls around and I start to get nervous. And I hate that we are here because I don’t want to be superstitious about certain months. But for some reason, summers are always hard for Patrick.

And so, I’m quite discouraged tonight. I am sad to be missing out on my first-of-the season tomatoes that I harvested this week and the green beans on my plants waiting for harvest and the great big yummy yellow zucchini sitting in the fridge. I hate that Patrick and I had finally hit our stride again, finally had a routine again, finally were catching up on the chores again. (Does anyone want to iron a month’s worth of dress shirts?)… And now we are starting over all over again.

But at least it is 10:30 and I can go to sleep because tonight giving the antibiotics on time is someone else’s responsibility.

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.

Who needs sleep?

There’s a song by the Barenaked Ladies called “Who needs sleep?” Here’s a line from that song: “With all life has to offer, there’s so much to be enjoyed. But the pleasures of insomia are ones I can’t avoid.”

If you’ve been waiting for an update on the concert, I need to apologize. See, Patrick’s been having a hard time sleeping this week. It seems every few nights something goes wrong and wakes him up. First it was diaper rash. (When his prescription strength creams fail him, the result is massive skin breakdown that makes me want to cry just looking at it.) Then, I accidentally turned off his TPN pump and had to monitor glucose and hydration in the middle of the night. And my little happy-go-lucky optimist responds to these discomforts by trying to cheerfully play through them. So instead of being up crying, he’s up jumping and playing until I pinpoint the cause of discomfort and get him settled.

So – my good intentions of writing earlier in the week were thwarted by extreme exhaustion. And then a series of coincidences landed us in the hospital for about 36 hours.. not helping sleep, but helping to remind me not to procrastinate.

Here’s a rundown of the other events of the week.

Wednesday, Patrick had an appointment with his GI, Dr. Jackson. Patrick’s central line was a bit slow to heal this time around and was a bit weepy even 2 weeks after placement. So I asked the doctor to look just to make sure there was no infection there. Since we were looking for infection, he checked his temperature and it was 99.3. So – Patrick and I hung around for an extra couple hours in the hospital. Dr. Jackson came in and we took off his central line dressing so he could examine it up close and take a culture of any fluid that was there. It looked healthy, just healing, so I went ahead and put the dressing back on. Then we went down to the lab and had blood cultures drawn. Those cultures were all negative.

That night, I got that getting sick tickle in my throat and started to run low-grade fevers.. kind of like when you get a flu shot. Never sick, but not quite right. Since the cultures were clean, I said “Ok, he has a virus, too” and didn’t think more of it.

Friday, Brian came home early from work and since we’d all missed a lot of sleep, we all laid down for a nap. I got Patrick up to put on his afternoon TPN around 4. Only when I tried to draw ethanol out of his line, I just got air. Tried again, got air again. Finally, 3 syringes full of air later, I looked and found a hole in Patrick’s central line.

So away to the E.R. we went. They’ve implemented a new policy that sent us to the Rapid Treatment Unit (RTU) for the repair which, by the way, is WAY preferrable to the E.R. Many fewer bugs and much quicker, more attentive care. The RTU is set up to give basic medical care that takes 24 hours or less.

Well, part of any admission is to check a temperature and Patrick’s read about 100. They rechecked it rectally and it came up 99.8, so we could justify not automatically being admitted. I explained the viral symptoms, but they decided to check cultures anyway. Then they repaired the line and sent us on our way.

The next day, Patrick woke up feeling great! No fevers. So since it was memorial day weekend, we packed up and headed out to Tabiona – a small town in Eastern Utah – for a family reunion. He loved the car ride.. playing in the back seat, singing with the radio, napping, and even trying to figure out how to whistle. Had a great day with cousins, aunts and uncles.

That evening, we got home to find two messages on our answering machine. The blood cultures they’d drawn were showing a staph infection.

Now, in case you haven’t noticed this, I’ve spent a lot of time learning from infectious disease over the past year. And one thing they’ve taught me is that 1 in every 20 positive cultures is a “contaminant”.. that is, something that grew in the culture that didn’t come from the blood sample taken. And staph, although it lives on all of our skin and can get into central lines, usually isn’t one you pick up at home. It’s most often contracted in the ICU. Every positive “staph” culture Patrick has ever had has been a contaminant.

So – I called the doctor and made my case that Patrick wasn’t sick and that this was likely a contaminant. We decided to recheck the cultures on Sunday.

Well, Monday morning rolled around. For once, we were planning to be home for Brian’s day off and had a big to-do list.. And at 8 a.m. the phone rang. Sunday’s culture was positive for staph, too. Patrick’s still healthy, but we’d better go in.

So, just to be safe, that’s what we did. We got there at 9:30. Because it was a holiday, things took longer than usual.. but by early afternoon they’d drawn a new set of blood cultures and by 4:00 p.m. had started some antibiotics. Meanwhile, Patrick’s nurses got to run to try to take care of all of his basic daily needs.. a slow process when doctors have to write for them and pharmacy has to fill them before it can happen.

A quick soapbox moment. One of the most frustrating things about going into the hospital is how difficult it is to maintain the same quality of care and quality of life as at home. There are so many more steps, so many more people, and so many more lawsuit-prevention policies that it is exponentially more difficult to accomplish the same things that I do at home in the midst of daily life. In a short 36 hour stay, I think the nurses had to call the pharmacy at least 10 times about administration questions, late medications, and my ever-hated argument about whether or not they’ll let Patrick have his home TPN. (I usually lose this battle and they hang something with sugar, water and electrolytes but none of the good vitamins, minerals, and fats that he’s used to.) They started him out on a super high dose of antibiotics. (I won’t let that happen again. I’ve seen it done 3 times now with the same result and I’ll speak up next time.) And they accidentally ran his TPN at a 5% of it’s prescribed rate for the night. ( Thankfully, this only resulted in a grumpy, sleepless night as Patrick got hungrier and thirstier. They caught it in the morning and there was no other harm done.) I can’t really fault the nurses here. They work their tails off trying to get everything right within Patrick’s first 24 hours. The fact of the matter is that he’s a complex kid who has a lot of special care. For me it’s routine.. but in the hospital, it’s the exception. In fact, there are some things that require special permission every time because it doesn’t match hospital policy. Still, it’s frustrating to me to have to work so much harder to maintain the status quo. I much prefer to just do it myself at home. Ok. Getting off my soapbox now.

Yesterday morning, Dr. Jackson came on service. I ran into him at the nurse’s desk looking up info to find out why Patrick was in the hospital. We talked about the 4 sets of blood cultures that had been drawn. By then, the cultures drawn in the hospital Monday were still negative for infection. Looking back, it was looking more and more likely that we’d had two contaminants in a row. So Dr. Jackson said the words that we love him for saying so often: “I think you can do this at home. Would you like to go home?”

He helped sort out a few more questions and then set the wheels in motion for us to go home. Because they’d started Patrick on an extremely high dose of antibiotic, we had to stay till 4 to have them check his blood one more time to make sure that he’d been able to get it back out of his system. Brian got off work and up to the hospital by 5:30 p.m. and we made it home shortly after that.

Patrick will be on antibiotics for the next 2 days at least and then they’ll check cultures again to make sure that he doesn’t have a real infection. And then hopefully things can go back to our at-home normal again for a while.

Whatever happens, we’re resolved to made better use of this time at home. Procrastination isn’t really an option when you can’t tell where you’ll be hour to hour. I would hate to get the transplant call and leave my house in the condition it’s in right now.

And – I’ll be getting that blog entry about the concert up hopefully before the end of the day tomorrow.

Oh – the best news of all? With us healthy and at home, Patrick slept a blissful 11 hours last night! Which meant mom and dad got some sleep for once, too.

Unpredictable

I like planning and I like things going as planned. I’ve never been very spontaneous. Patrick is teaching me things.

We thought we’d be heading home a couple nights ago. Patrick’s weekend was completely uneventful. He was healthy and happy and doing really well. Everything was in order – he was on the schedule for his line to be placed on Tuesday and then once it was in, we were going home. We’ve done that surgery outpatient before, so why not go home the same day, right?

Monday night my nurse couldn’t find a record of him being on the surgery schedule, though.. even though I was sure they were planning on it because his surgeon had talked to me about doing it. All night long I had nightmares about him not getting his line.

But before the sun was up Tuesday morning, I was signing a consent for surgery. That afternoon, out of the blue, surgical transport came to get Patrick. I had a pow wow with his surgeon in the hall on the way down then went through the usual presurgery consent and exchange of history, kissed him goodbye, and went to the surgery waiting room. Pretty routine.

This time, though, things were just slow! This procedure usually takes 30-45 minutes. And an hour and 15 I was asking for updates from the O.R. But then, minutes later, his surgeon came to tell me the line was in and everything had gone well.

Great, I thought, and sat down to wait again. Typically 15 minutes or so after the surgeon visits me I get to go back to recovery. 15 minutes passed and then the anesthesiologist came to talk to me. He explained that Patrick had somehow been extubated during the procedure, but that he thought he was ok.

2 hours after I got to the waiting room, they finally called me to recovery. Patrick seemed to be just fine.. mellow and with tears dried in his hair, but ok. We brought him up to the room and he cuddled up with me in the rocking chair.

Soon it was time to give his afternoon medicines. Because of his allergic reaction to the caspofungin, they give him Benadryl first now and that on top of the anesthesia helped him fall very fast asleep.

Brian came and packed up the room. The doctors came and gave me discharge instructions and prescriptions. We were just waiting out the medication and waiting for his TPN to be delivered.

Then I noticed that Patrick felt rather warm. So, reluctantly, I paged the nurse and asked her to check his temperature. The result – 103.3.

Just then, the TPN arrived.. the last piece we’d needed to go home. And we were staying. They drew a bunch of labwork to look for infection, just to be safe.

Patrick’s lungs seemed a bit coarser than normal and he had a cough. The doctors theorize that the fever was a result of something that happened with the anesthesia or his airway while he was in the O.R. Throughout the night, he finally got some good coughs and his fever went down.

By morning, he seemed to be just fine. They stopped the antibiotics they’d added as a preventative measure.

So – here we are still. I’ve learned never to really count on the first discharge date we plan for… but we were so close this time!!

We’re ok, though. We’ve got a fair amount of cabin fever. And I’m definitely missing some of the comforts of home like soft toilet paper and going barefoot. But we’ll make it through. At least he’s happy and healthy and allowed to leave his room to go to the playroom where he can spend hours running around the room holding my hand with one of his, and pushing a push toy or chair with the other while i try to keep up with the IV pole.. keeping his feet out of the tubing.

We’re hoping to go home maybe tomorrow morning, now. <Knock on wood>. To do that his cultures have to stay negative and he has to not give us any more surprises.

Mother’s Day

Patrick is feeling much, much better now. The infection has been well treated with the medicines he’s getting. He’s stable, happy, and playing. Doesn’t need monitors. Doesn’t need much attention at all, except giving his medications on time. There’s only one thing keeping us here. . .

Because this is the 2nd time in a very short time that Patrick’s had a yeast infection, they wanted to make good and sure that the bug is dead before they put a new line back in. Right now, Patrick has a good “deep line” in his leg. This means that it is in deep enough that they can draw labwork out of it and give better nutrition through it. However, it doesn’t go all the way to his heart, which means that it’s not as likely to get infected – but it’s also not really the safest for taking him home with. He’ll get a new central line on Tuesday and go home as soon as possible afterwards.

So, we spent Mother’s day in the hospital. It was a good day, though very quiet. We got to visit with both Brian’s mother and mine today. Patrick got to get all dressed up and go to church. (Best dressed patient in the hospital today, I’d bet.)

Being here has been a good opportunity for me to reflect on how grateful I am for the many different types of mothers who play a part in our lives. Mothering Patrick is not the kind of job I could do all by myself.

I’m grateful for a mother and mother-in-law who’ve been willing to step up and step in to learn how to provide Patrick’s medical care so that Brian and I can get the occasional night out or so that when I’m exhausted and at my wits end I have somewhere to turn. You may not know what a rare priviledge that is that you have given to us.

We are grateful for our mothers. You prepared us to be Patrick’s parents and you help us each day to do it. I don’t think it’s possible to count the number of prayers, meals, phone calls, visits, crazy projects, and more that you have offered for our little family.

I’m grateful for sisters and a sister-in-law who are also there to help lighten my load when I need it, to fill the fun aunt roles. They are helping to raise some spectacular children, Patrick’s cousins, and him as well.

I’m grateful this week for nurses and CNA’s who have taught me how to do this job, who’ve sat rocking Patrick in the dark so I can catch a few hours’ sleep, who listen when I need to cry or share in small, although sometimes icky, triumphs and who make my day every time we see them because of how much they love my child.

I’m grateful for Patrick’s birthmother. I have no doubt that she loves and is proud of Patrick. I am impressed by her strength. I’m grateful to his birth grandmothers who trusted in their children and loved Patrick. It’s not easy to support a son or daughter considering adoption when you know it means a grandchild will be far away. We are grateful for the love and trust and support they’ve shown in us. We also owe thanks to Patrick’s aunts who helped offer comfort when needed and still are lovingly watching over him. What a blessing it is that he was born into a family who loved him so much.

This mother’s day, thank you to all of you mothers who are there for us. You come in all shapes and sizes.. friends, neighbors, family, and more. I couldn’t do this without you.

Relieving pressure

With Patrick, there are certain chain reactions you can count on. An infection will make Patrick’s spleen go into defensive mode and hold all the platelets that pass through it, kind of like people who hear a natural disaster is coming and run to the store and buy up all the food so that they’ll be prepared in case of emergency.

When the spleen sequesters (or hoards) platelets, Patrick becomes anemic. Without platelets in the blood, there’s a lot more fluid floating around in Patrick’s veins. The veins become “leaky” and the extra fluid goes and sits in any space it can find in the body.

Eventually Patrick becomes a little marshmellow baby that feels like he’s made of concrete because of all the extra fluid he’s carrying.

Last night, we added an element to this problem. When Patrick had enough fluid in his body, it became too heavy for his lungs to be able to move oxygen well and the oxygen saturation in his body dropped.

We discovered this problem as I finally got him to bed around 10 p.m. His nurse came in and put him on oxygen and then called the doctors. This started a better chain reaction for Patrick.

The extra oxygen was enough to finally mellow him out enough to sleep. Although he just kept getting puffier and puffier and needed more and more oxygen, he finally felt well enough to sleep. His kind nurse came in and held him which allowed me to get some much needed sleep.

The doctors prescribed a diuretic called Lasix that helps make it easier to shed extra fluid from the body. With just a half dose, Patrick started to to look and feel better. By his late afternoon nap, he almost looked like himself and I didn’t think my arms were going to fall off from the effort of picking him up. Better yet, his oxygen saturation improved enough that this evening they dared take off the tube that holds the oxygen on.

The best part of this chain reaction is that as Patrick is getting to feel better.. the infection clearing now that the line is out – and an end to the fluid overload problem have made it so he can finally rest. He actually was able to take naps today at their regular times, and fell asleep right about 9 p.m… not too far different from the home routine.

I’m really happy with how today went.. We just need to make it the next couple of days without a central line and without running out of places for peripheral IV’s.

Just wanted to share that good news. There’s probably more to blog about, but I’m going to take advantage of the change to actually get some sleep tonight without having to call in reinforcements.

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.