Tag: scary moments

The devil you know vs. the devil you don’t

Patrick and I had the most frustrating of mornings yesterday. Got up as usual and started out happy enough, but then it was time to connect his 8 a.m. antibiotic. I went to withdraw the ethanol lock out of his line and it wouldn’t come. Tried to flush. Wouldn’t budge.

So I grabbed a dose of Cathflo (the super declotting agent for central lines that I am learning I am VERY lucky to be allowed to administer by myself at home.) Worked it into the line, which took me almost half an hour. I left it in for half an hour.. drew back and the line drew back beautifully.

Tried to flush, and nothing. Let go, and the syringe filled with blood.

Not good. I tried several more times and just got the same result. The antibiotic was due. The TPN was running. The two can’t go through the same tube at the same time. And I was stuck.

So I called the hospital and asked for the GI on call, but they wouldn’t give them to me because it was almost 9 a.m. and the GI clinic opened at 9. So I called Patrick’s nurse, and she was stumped. She called the department at the hospital that specialized in central line repairs, and they were stumped.

Finally, Dr. Jackson’s nurse got word I was calling and called me back. And she was stumped.

It really seemed like the blood was flowing backwards in the line.. out instead of in. Which either meant a slipped placement.. or a line broken under the skin.

Both line killers.

So – while they did their research, I did the only thing I could think. I said a prayer. I put one more dose of TPA in the line. I forwarded our home number to my cell phone. Then, I packed Patrick up and we went to mommy-and-me exercise class. Makes sense, right? We needed some normal, and some distraction. And it was his last guaranteed chance to go to class before school.

Halfway through exercise class, as I was sweating and huffing and puffing… in the middle of the popcorn song where we jump all around the room pretending to be popcorn… my phone rang.

It was Dr. Jackson’s nurse telling me that they’d arranged an admission to the Rapid Treatment Unit. The plan was to evaluate the problem, do an x-ray if possible, have the IV team look at things. And then, she said, it didn’t look good.

I hung up and stayed till the end of exercise class. Why not?

Then we came home, I showered, and I packed a suitcase to see us through a one day hospital stay and a likely surgery.

We rushed up the hospital, lugged our way into the RTU, got vitals, met our nurse…

And then tested the line.

And the 2nd dose of TPA had fixed the problem. Best bet? That the clot was working like a stopper that allowed blood to flow in, but not to flush. Kind of the opposite of usual line function. And that it was blood trapped in the line that was flowing back after attempts to flush… Not the line bleeding as it appeared.

We called it a nurse visit. The doctor came to “not” consult with me, so we wouldn’t be billed for the service. He’s seen us struggle to keep this malfunctioning line going for the past 15 months.

I asked him if he’d give up and replace it yet. Knowing the risks of lost access for Patrick.

He shrugged and told me, “It’s the devil you know versus the devil you don’t.”

How often that is true with Short Gut. How often do we weigh the choice between the familiar but uncomfortable present situation and the risk of an uncertain outcome?

The choice about transplant is certainly that kind of a thing.

It takes a lot of faith and prayer and hope and stepping into the darkness to move along this journey.

And a lot of mornings derailed by emergency hospital admissions that leave dirty dishes and dirty laundry and a mountain of other unfinished tasks while we wrestle with uglier demons.

Brian and I have been doing a lot of pondering and praying to know what is the best choice about this troublesome line.

If you’re praying for us, that would be a good thing to pray for. For us to know whether to keep fighting with this line or take the risk of swapping it out in the hopes of fewer infections and clots and frustrating mornings.

Watch out for waterlemons

A week ago Saturday, we decided to go out for breakfast at Paradise Bakery. Because of nut and egg allergies, we brought his breakfast along, but when he asked to play with my fruit cup (practicing his fork skills) I agreed.

He picked up a piece of pineapple, dropped it, and gave a very big scowl. I looked to see what was wrong and discovered a long, thin cut in his finger. I thought maybe one of the finger pricks from the previous weeks’ hospital stay hadn’t healed and was infected.

So, when we got home, I put some neosporin on it, and a bandaid. That night, when I changed the bandaid, Brian pointed out that the rest of that fingertip and the one next to it looked like they were burned. We asked Patrick how he got hurt. He said the “waterlemon” poked him.

We kept doing bandaids and neosporin. And then a couple of days later, I bumped Patrick’s other hand and got the same reaction. He jumped, pulled back, scowled, then started to cry. I looked and, lo and behold, the other hand was dry and cracking too. All of his fingers looked calloused, dry, flaking and cracking.

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I panicked a little bit. TPN dependence means risks of nutritional deficiencies. Zinc deficiency causes horrible flaking skin ulcers. Fatty acid deficiency can cause dry skin, but only once it’s severe enough that you also start wondering about brain development.

I called his dietitian and made her check his labs. They were ok, except a note about low Omega-6 fatty acids. The doctor had just said he thought it was ok. She suggested I rub Patrick in safflower oil.

This created quite a quandary for me. Last time I tried safflower oil in Patrick’s diet he had an allergic reaction because all culinary oils are processed on the same equipment so safflower oil can have peanut oil and almond oil in it.

So I decided to start using his regular eczema cream and keep asking.

I got a good picture of the problem and sent it to, well, everyone. His nurse suggested an allergy to the bandaids or neosporin. His GI and I had a long talk where we discussed ways to get him more fatty acids from increasing the lipids in his TPN to feeding him microlipids through the g-tube, to rubbing him in it. (Which I put more effort into. We stopped at Sprouts market that night and read every label until I found a lotion that had safflower oil, but nothing else he might be allergic to.) Finally, the University of Nebraska called back and said that Patrick’s labs had looked good in February and could not have possibly tanked that quickly and to stop worrying about deficiency.

So then I turned to Dr. Google. I try not to research symptoms on the internet. However, Google Images is a wonderful took for looking up skin conditions. I looked up pictures of zinc and fatty acid deficiency and they didn’t match. Then I looked up pictures of cracking fingertips and I found it…

Fingertip eczema. Caused by… a systemic allergic reaction due to prolonged exposure to an allergen.

I ditched the bandaids. Switched to hydrocortisone cream and aquaphor… kept rubbing Patrick in the safflower lotion for good measure because of the other deficiency anyway. And I stopped cheating Patrick on his benadryl pretreatment.

Because Patrick is allergic to vancomycin, the antibiotic they started him on 3 weeks ago, he is supposed to get a very high dose of benadryl before every dose of antibiotic. But that high dose does a number on his gut, not to mention his concentration and his mood. So when we came home from the hospital, I started backing off the dose.

So we upped the dose.. and then we got hospitalized and they took him back up to the full prescription strength. And they made him stay on vanco a few extra days in case that was the cause of the fevers, and then finally let it be discontinued.

Patrick’s fingers almost immediately started to get better. They are still dry and we are still doing a good lotion regimen a few times a day. Patrick voted down a few brands, but is really in love with Aquaphor (“Apa-poh”) and several times a day will ask permission to just dip his fingers in it. This is helping a lot.

Poor little kid.. as if there weren’t already enough other things to worry about this month. And I still can’t convince him to lay hands on another “waterlemon.”

When the cat’s away, the mice will….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Brian may rethink his next business trip.

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.

Attempting a vacation… Line by line

Since Patrick came into our family, we’ve made several attempts at a vacation… and all in vain. For a while, I superstitiously didn’t even want to say the word, for fear that it would end up with another infection. It seemed that the bigger the plans, the bigger the catastrophe.

But.. several months ago, when Brian’s parents suggested a trip to Yellowstone with his family, we couldn’t resist the chance to make another attempt. We booked a room, cleaned our house, packed our bags. With each step closer, I just kept waiting for the hammer to drop.

On the 5th, Patrick’s line sprung a pinhole sized leak. It wasn’t even visible.. but the line pulled air when I tried to draw back and sprayed when we flushed it. So we ran up to the hospital to have it repaired. All went smoothly, especially for 5 p.m. on a holiday. We even made it to a family dinner, just a little late.

Patrick with line newly repaired modeling some of the sterile gear required.

The next day, just after I connected the TPN to the repaired side of the tubing, Patrick stepped on the tubing. The glue used to repair a central line takes 3 days to fully cure, and the tug from stepping on it was just enough to undo the repair. It set back my packing several hours, but we ran up to the hospital and got the repair done.  We were still going to make it, darn it!

I stayed up late packing, then the next morning got up at 7 to drive Brian to work. All day long, I worked to get ready and was stunned to find myself actually loading up the car.

Patrick had an appointment with his GI in the afternoon. The plan was we’d go to the appointment, then pick Brian up from his office, and head north to Yellowstone. I was grinning ear to ear as I left the appointment, knowing we were on the road at last. I was so anxious to go that I even did Patrick’s TPN tubing change in the back seat as Brian drove so we’d get out of town before rush hour.

An hour and a half north of Salt Lake we stopped at a rest stop outside of Malad. Patrick needed a diaper change. As I was taking him out of his carseat, his tubing caught on the buckles. The repair came apart, again.

We had to decide what to do next. It was an hour and a half back to Primary Children’s. Or, it was a little more than that to the hospital in Idaho Falls. I’m not sure what possessed us, but we decided we didn’t want to turn back. We’d gone to great lengths to get a spare repair kit to bring with us, just in case. Surely the repair could be done at another hospital.

So, we made the quick but nervous drive to the hospital, arriving around 8 p.m. Eastern Idaho Regional Medical Center is one of the best hospitals in Idaho. But it is an adult hospital. Which meant an adult waiting room with scary things like chest pains and seizures, broken bones and more. They were kind and willing to help, but got slammed with these difficult cases all at once, so they asked if we’d mind waiting in the waiting room.

Around 10, they finally invited us back to a room. The doctor came in and we tried to explain what was wrong. He seemed a bit stumped about what we were trying to explain about one lumen of a double lumen line being broken. Finally, Brian spoke up and said, “We have a repair kit and know how to do the repair, but we need some supplies and a sterile environment.. and maybe some help.” The doctor agreed to let us do the repair.

The nurses did their best to gather up the extra supplies that we needed. they were a bit different than what I’d seen used, but I knew how to use them. They also offered a nurse to be my assistant as we worked.

The process of repairing a broken line is a simple one, but must be done just right. First, the people doing the work puts on full sterile gear, including mask, gown, and cap. The line is clamped off so it won’t bleed. Then, the line is sterilized. Using sterile scissors, the broken part of the line is cut off. This cut must be perfectly straight. The repair piece is then connected. It has a tiny metal tube inside you slide into the remaining original line. You test to make sure it flushes and draws without leaking, glue the two pieces together, cover the repair with a protective plastic sleeve, then fill that sleeve with a sterile glue to seal the work. It’s delicate, sterile work.. but not really complicated.

Or so I thought.

It was so strange to be gowning up to do this. I was nervous, but pretty confident. I’d seen this done at least a dozen times.. and twice already this week.

Once I started, though, I got scared. Because the line had been repaired (and trimmed) twice in the week already, it was too short to repair just one side. A double lumen line is made of two tubes encased in one that branch out a couple of inches past the insertion point. I had to cut the line where the two tubes were still one.. meaning we had to shut off the TPN for at least 4 hours from when I finished the repair. That added some pressure.

Repairing this section is harder, too, as there are two little metal tubes to fit into the two sides of the double lumen tube. The work was more delicate and the fit was more essential.

As I worked, I felt like a bumbling idiot. I was guiding the repair. The nurse assisting me had never worked on a line repair before, so she had to follow my instructions. Brian was talking me through it, but had to work to keep Patrick restrained. My first cut was a little crooked and leaked when flushed. The second cut fit. I slid the sleeve on and tried to fill it with glue, only to discover that the glue was slippery! I’d seen nurses struggle with this before, but never imagined that that was the problem. I’d insert the needle into the sleeve to fill it with glue and it would slip out of place. I probably spent 10 minutes or more trying to put the glue in.

Finally, it was done. We tested it, dressed it, taped it down as securly as possible, filled the line with heparin so it wouldn’t clot… And the reality sunk in.

My repair seemed really sloppy and if I’d screwed up, we were hundreds of miles from home or anywhere that knew how to fix my mistake. And Patrick’s TPN was shut off… couldn’t be restored until the line was fixed and the glue dried for at least 4 hours!

I kept my calmest face on as they did a quick discharge… then went to the car, buckled Patrick in, gave him a lollipop to keep his blood sugar up.. then sat down and cried as the impact of what I’d just done sank in.

We drove to Rexburg, arriving around midnight. Brian checked us in and we moved the luggage. Patrick loved the hotel room… a suite, so we’d have a fridge for the TPN. He stayed up playing till about 1, when I finally succeeded in singing him to sleep. Then I said some very urgent prayers for help that my feeble attempt would be good enough, and that I would regain a sense of peace and confidence. Then I fell asleep, too.

I dreamed all night of broken lines and taking lifeflight to Utah because I’d made a mistake. At 2:30 it was supposed to be safe to use the line again. I got up flushed it slowly… no leaks. Then I started the TPN. I sat up for the next half hour and checked again.. still no leaks.

In the morning, we all slept in.. exhausted. I’ve never been so grateful for room darkening curtains in my life! Patrick had slept soundly… no whimpering like he does when TPN isn’t running. I pretty well expected to find him soaked in leaked TPN when I got him up, but the dressing was still dry.

The repair held well and is still holding.

We ate breakfast, packed our bags, and got on the road again. I can’t describe the feeling of relief and joy as I watched a very happy, healthy Patrick walking along behind the luggage cart on the way out of the hotel.

We arrived in West Yellowstone early that afternoon. We’d made it!

I’m afraid the stories from the rest of our trip will have to wait for me to write them down in the morning. Needless to say, it was a wonderful week! I am so grateful to a Heavenly Father who understands the importance of small things like finally taking a family vacation and hears and answers prayers to the effect… who helps and guides and sends the Comforter when needed… Who helps to qualify a sometimes awkward, impulsive and anxious mother, with the help of a calm and constant father, to do unimaginable but necessary things – all for the good of her family and child.

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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.

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.

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.

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.