home health care – Page 2

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.

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.

A Sick Day at Home

Patrick stayed home sick in bed on Monday. This would be pretty boring news for another kid, but for Patrick, this is only his 2nd ever sick day at home.

When I put him to bed Sunday night, his temperature was in the 99’s. If his temperature reaches 100.4 degrees farenheit, that is considered a fever and requires quick action. With a central line, a small fever could be a life-threatening blood infection that can turn deadly in the matter of just a few hours. If a fever reaches 101, we go straight to the hospital and say there at least 2 days.

Monday morning, Patrick’s temperature was still high, but sat just on the brink of a fever. So instead of running to the doctor, I put him in my bed with his IV pole connected, in addition to the TPN in his backpack, so that I could give him fluids to keep him from getting dehydrated.

He didn’t feel well, so he just layed there and napped and looked at books and watched Baby Einsteins. Meanwhile, I got on the phone with Patrick’s medical team. I talked to the nurses in the GI clinic to get blood cultures ordered, and then his home nurse to arrange for her to come to give them. I called his dietician to let her know that his stomach was upset and I was having to pour extra fluids into him. (This can make a difference in his electrolyte balance, which can be life-threatening.) And then I talked to his doctor, who was at home sick with the flu, but more than willing to work with me to make sure he stayed safe at home, or could go quickly to the hospital if needed. Then a conversation with his homecare pharmacist to arrange for a dose of antibiotics and some extra fluid to be delivered, and a call to the pharmacy at Primary Children’s Hospital to get some oral antibiotics too, for his belly.

I played nurse all day long. I spent a lot of the day in bed with Patrick to keep him comforted, and to watch for signs that he might take a turn for the worse. But he stayed grumpy, but stable. I also took his temperature at least every half hour.

Nursing duty spilled into the night. Brian and I took turns sleeping in Patrick’s room with him. He slept better that way, anyway, plus it meant that we could keep a closer eye on him.

And amazingly, by morning his fever was gone and he was starting to feel better. So far, nothing has grown from his blood cultures, so the gamble to keep him home seems to have been one work taking this time. In the peak of respiratory/flu season the last place you want to go if you don’t have to is the hospital. The chances of picking up a new bug and ending up back in the hospital are always there.

We’re still not sure why Patrick wasn’t feeling well. I wish sometimes he could talk. I know his stomach was upset, and that he seems to have increased problems with his motility. He’s also cutting teeth, which could have played a part in all of it.

Still, we’re happy to be home… To have been able to stay the day in bed at home, even if it did mean 2 days of hefty nursing duties and missed sleep for me. And we’re grateful for a motivated healthcare team who jumped right in to make sure that Patrick was able to stay safe and sound at home.

The good news that came out of this for Patrick was a decision that it might help to stimulate his motility to feed him. So he’s getting his little half teaspoon feeds again. Kind of the opposite of what you’d do for a healthy kid with an upset stomach. But that’s just Patrick’s life. He is THRILLED to be eating again and savors each bottle.

A day in the life . . .

Things have been pretty calm since we brought Patrick home from the hospital this time. It takes a lot of extra work to keep up on all the new medications he needs, but otherwise life has been calm.

But – it occurs to me that I should state that our calm isn’t exactly the same as others’ calm. Let’s take today as an example. It was a pretty good day.

We got up early today. Patrick woke about hourly through the night because he’s still not used to being at home. I get up and give him a pacifier and put his blankets back on him and he goes right to sleep. I was a bit tired when the alarm went off at 6 to tell me Patrick’s vancomyacin was due. I’d forgotten to take it out of the fridge last night, so I had to run around with it tucked under my arm to get it warm while I got everything else ready.

I prepared a bottle. Disconnected Patrick’s feeding tube, replacement fluids line and ostomy drainage tube. By then he was screaming to be fed so I got him out of the crib and fed him his 1/3 tsp. of formula then rocked him back to sleep. (And me, too). At 7:30 I put him back down to check to make sure Howie was up.

He was pretty awake then, so I went ahead and got him up, changed his ostomy bag and g-tube dressing, flushed his picc line, and got him dressed.

Because we were up so early I decided that it was a good day to go shopping. It’s Howie’s birthday on Sunday so I packed a bottle to give myself extra time to shop. (Patrick eats every 3 hours, which can be a narrow window of opportunity).

I’d been in the store about half an hour when my cell phone rang. It was Patrick’s nurse confirming an appointment for her to come draw blood for labs. It was 11:30 and she wanted to come at 12:15. So I made a mad scramble to focus and finish the grocery shopping so I could get home on time.

At 12 we finally made it out of Wal-mart and I loaded Patrick and the groceries into the car, then shut off his TPN pumps so that the labs would be accurate. (Need to give the blood time to carry off what’s in the PICC line.) I hurried home and just got the groceries into the house and put away and Patrick fed when his nurse knocked on the door.

I gathered up the supplies she’d need for the tests then held him while she drew them. She asked what his last temperature had been, and since I hadn’t taken once since he woke up, she did. It read 99.5.

Any rise in temperature can be an early sign of infection so I stuck a thermometer in my pocket to do temp checks every half hour. Then I took him upstairs to change his diaper only to discover his ostomy bag had leaked. He was pretty mad, but I pulled off a quick change and took his temperature again.. Still high.

I grabbed a quick lunch and put on replacement fluids (saline solution via IV). He needed some anyway and if he runs a fever he needs extra hydration. By then he was getting quite mad and so I piled everything to work on his tubing change around me and snuggled him up in my lap to try to help him sleep.

At 2 I traded replacement fluids for IV antibiotics, and when those were done, started prepping the new day’s TPN. When I opened up the backpack around 2:30 to see what time I had left in the day’s TPN program, I noticed a bad mistake. I’d failed to turn the pumps back on after the blood draw.

Without TPN running, Patrick’s blood sugar plummets, so I hurried and got him a bottle and then gave him a couple of licks of a glucose tablet to help keep him up. I made a record fast tubing change then reprogrammed the pumps to slowly “taper up” the rate of infusion to avoid going from very low blood sugar to something too high.

Finally with TPN running again, Patrick calmed down. But his temp was still between 99 & 99.5. My next option was to try to get him to rest. So we snuggled up on the couch so he would sleep. He’d sleep as long as I was right there holding him. So, while he slept, I talked to his transplant coordinator in Seattle and then sent an e-mail to his GI here to try to get sorted out a positive blood culture that showed up in his labwork last week.

The evening was calmer. Brian worked a bit late which gave me extra time to get dinner ready.

Around 8 we started working on the bedtime routine. One of Patrick’s meds needs to be given on an empty stomach so he gets that around 8:30. Then Brian and I work together to make new formula & bottles for the night and to prime the tubing for the feeding pump that drips formula into his stomach all night. He gets one antibiotic through his g-tube right now. We have to draw it out of a vial with a syringe and then change tips to something that fits his feeding tube and flush it in there.

Then we connect his feeding tube, flush his PICC line to make sure it’s still running well, and change him into P.J.’s. Tonight he gets to sleep in a onesie to help keep his temperature down, though.

At 9, Patrick ate and then curled up and went to sleep. Because Brian was home, we stayed up watching T.V. while we gave antibiotics. He gets 3 at night, plus more replacement fluids. We have to switch medicines and flush lines at 9:30, 10:00 and 11:00 p.m.

And that is why I’m up blogging right now. His last antibiotics are just finishing up, so I need to go take them off and make sure that the unused line is “heparinized” for the night. If I’m quiet, I hope to do it without waking him and make it to bed by midnight.

It sounds like a lot, but this has actually been a mostly relaxing day.. except the part in the middle when Patrick’s TPN was off and he felt awful. Last temp was actually low… so I hope that the other high numbers were a result of the heat of the day or the fact that he’s cutting a few teeth.

Recovering at home

I’m happy to announce some tremendous news! Patrick made a miraculous and quick recovery after my last post. The day after my last post, after much fasting and prayer by friends, family, and even people we don’t know, we walked into the ICU to find Patrick smiling and playing in his crib. He turned his head, saw Brian and me, and smiled. Over the next couple of days he continued to make steady improvement.

They gave him some steroids which helped reduce the swelling in his throat and his breathing became much less labored. Ear, nose & throat came and looked at his upper airway and determined that his vocal chords were ok and that, although he had swelling below them, that there wasn’t any evidence of scarring or other permanent damage. The only limitation that they placed on him was that he not be reintubated except for life-saving procedures for the next 6 weeks.

Neurology also came by several times in that day and watched as he progressed, began interacting with me, focusing his eyes, moving his arms and hands more normally… and in the end decided that there didn’t seem to be any evidence of a problem there that would merit further attention.

Next, they scheduled for him to go back to Special Procedures and to have another PICC line placed. Because his antifungal medications aren’t compatible with TPN, he needs two points of access. Amazingly, they were able to get a double lumen PICC placed. This means that there are essentially two tubes wrapped into one and placed in the same vein… instead of having a line in each arm. With that in place, they removed all of the other lines in his body.

The PICC made him sore, but by Thursday that was their primary complaint and they decided to transfer him out of the ICU into the infant unit.

Also Thursday he had a swallow study done. This means that they mixed contrast into apple sauce and put some him a bottle and had me feed it to him while they watched it go down his throat on floroscope. Having fasted or been fed by G-tube for 2 weeks, Patrick thought this was heaven and was furious when it was done. The end result was that he swallows perfectly… pretty amazing for a kid who is barely allowed to eat.

That confirmed, they started giving him bottles again. However, his gut had gone unused so long that it’s still working on recovering. We started out with just 2.5 cc’s every 3 hours…that’s about 1/4 tsp.

Saturday night Patrick’s PICC line got tugged and the vein started to swell. He woke up in the middle of the night and really didn’t sleep the rest of the night. We worried that it might need to be replaced again… but with some rest and elevation and heat, it slowly started to show signs of recovery.

Finally, Monday his electrolytes, stool output, feeds, and PICC line were all stable enough and at noon that day we were able to bring him home.

You should have seen how big his eyes got when we pulled into the garage! I was all grins and giggles when we walked into the house. As per tradition, once we got business squared away, Patrick and I curled up in my bed and went right to sleep. He slept till 5:30, completely peaceful.

We’ve been home for a few days now and are finally getting back into the swing of things. Family and friends have been great – bringing in meals and coming to sit with him during the day so that I can get things caught up around the house. He’s having a hard time getting used to sleeping through the night again. He doesn’t like being on his back since spending so much time in a bed. And I’m having a very hard time getting used to caring for a double lumen picc. But we are slowly moving forward and today, for the first time, has felt like routine again.

He needs to be seen ASAP in Seattle so that they can determine if he can be put back as status 1 on the intestinal transplant list. They are also looking at possibly listing him for a liver-intestine transplant, as well… since the problems with his spleen could be evidence of scarring in his liver. We have a trip planned from Wednesday through Friday next week… with appointments most of the day Wednesday. This will be my first time travelling alone with Patrick. It’ll be a process, I’m sure… But hopefully well worth the effort. If nothing else, it’ll be good practice for me.

It’s hard to believe that just weeks ago we were sure we’d lost our little boy. He has so much light and life in his spirit right now. He’s pretty weak still and we’re working on getting him back to eating what he had been eating before… And both of us have to get used to that line in his arm. But things in this house are calm and happy. It’s so good to be together… and so good to be home!

Home Sweet Home

This post is a bit late in coming but it’s about time that I posted the news that we were able to bring Patrick home with us on December 9th.

Things moved a bit quicker than we’d expected they would. With Patrick’s broviac line in place and his infection cleared, there were no medical reasons left to keep him in the hospital. They made the decision on a Friday afternoon to release him early the next week. We hurriedly trained that weekend to be able to take care of him and the hospital staff worked to make arrangements for home health care.

We got home around 5 p.m. on December 9th. It was so strange to be able to pick Patrick up and walk away from the bed, let alone to carry him around our home.

We’ve been home for almost 2 weeks now. Patrick’s sleeping pretty well at night,thankfully, and we’re starting to get a routine. Of course, after so much time away and with Christmas fast approaching, we’ve been swamped so we’re stretched a bit thin and aren’t getting as much napping time as we’d like… But it is so good to be home.

Patrick seems to be enjoying the quieter atmosphere. He definitely likes his new toys and all the friends and family who’ve been visiting. He’s doing very well and growing at a very good rate. Today’s weight was 6 lbs 14 oz.

Getting settled at Primary Children’s

Arriving at a hospital on Thanksgiving morning is not the best of plans. Although we’ve been well taken care of, it took a few days before the regular hospital staff was all here and we could really start to get settled. But they’ve taken good care of him so far and we’re feeling a bit less like a family of fish out of water.

The hospital immediately started working on perfecting Patrick’s nutrition and have made regular adjustments to his TPN (iv feeding) and formula. He’s now eating 13 cc’s (maybe 3 teaspoons) of Elecare, which is a predigested formula. And, since Patrick loves eating, he still just gulps it down.

On Saturday he gave us a bit of a scare when his temperature shot up to approximately 101.9 degrees. It turns out that he’d gotten an infection in his PICC line. He’s been on antibiotics for a couple of days and today they pulled the PICC and switched his TPN to a periferal IV. (That means that it is in his hand rather than going in through a central line to his heart). He’ll have that until the infection can clear and then they’ll put in a Broviac line, which is a central line in his chest that’s a bit more sturdy so he can go home with it.

He also go quite anemic, especially when they had to start taking blood samples to check his infection so he had a transfusion this morning. His color us much better and he’s much more active and alert.

We have been getting lots of training on home care for him and are pretty good now at changing his ostomy bag… though I’ll admit that if one more person comes and shows me the same pictures of possible complications for a stoma, I might just lose my mind.

We have a care conference scheduled tomorrow morning. This means that the doctors and nurses and social workers and discharge planners will all sit down with us and we’ll talk about a plan for Patrick’s long term care. Our two main priorities are getting him listed for transplants and making plans for him to be able to go home with us until he’s big enough and an organ becomes available. After that meeting, we might be able to answer the question of when he’s coming home. I know a lot of our friends and family are dying to meet him and we appreciate your patience with us as we’ve been trying to get him settled and healthy here.

Sorry for a post with no pictures. Patrick’s due to be fed and I don’t have the time to get them off the camera. If I get a chance later this afternoon I’ll send out a post of just pictures.