trials and triumphs – Page 6

Update: Two weeks (and a day) after surgery

Well, it’s been another week. Most people are surprised to learn that we are still at the hospital. Well, we did think that the recovery would be no more than two weeks.

But here we are.

It turns out that Patrick’s large intestine is needing much more time to adapt than was anticipated. The problem is that, never having been used, first it had to wake up, and then it has to stretch back to a normal size.

They did a contrast enema today. That means they squirted contrast in Patrick’s bottom and then watched on X-ray as it moved up through his large intestine, and then his small intestine.

The good news is that it moved through without problems. There are no obstructions or strictures. The bad news is that, well, it still resembles a long noodle more than a colon. And it’s fitted to a small intestine that is quite stretched out.

So the stretched out, and therefore weaker, small intestine is trying to push things through a super tight large intestine (imagine a balloon that hasn’t yet been inflated). And it’s just not working very well.

I’ll talk to Patrick’s surgeon tomorrow about the study and see if there is anything more that can be done. So far, though, the answer I’m given most often is that we just need to wait. Hopefully time and use will balance things out.

In the meantime, we just keep waiting here. I don’t know quite what to do with myself. Without feeding, ostomy, IV’s (I’m not allowed to touch them), or even diapers really, there isn’t much in the way of my normal nursing duties to do. So I’m trying to spend my time just being a mom… playing with Patrick and helping with the basic things like sleep, comfort, and cuddles.

The good news is that Patrick actually feels quite well, as long as we don’t let too much build up in his stomach. And this lends itself to fun new adventures like baths in a bathtub and learning to sit.

It’s not the easiest thing being cooped up in this tiny crowded room together with nurses going in and out all the time. We get a bit bored of each other sometimes. But we’re doing the best we can and just praying that Patrick’s body is up for the challenge it’s been given.

Re-evaluation at Seattle Children’s

You may have heard that Patrick had a day of office visits scheduled at Seattle Children’s hospital last week. After his cardiac arrest and the many complications that followed, they wanted to see him again to see if anything had changed that would affect his transplant status. They also wanted to look to see if he needed to be listed for a liver transplant.

What you may not have heard is that Patrick was hospitalized Sunday night with another infection. This time it was a staph infection which, if caught early, can be treated through his central line and clear easily or, if more established or more resistent, could become a very persistent infection that can hang on for months.

I called Seattle Children’s and tried to reschedule our appointment. However, Dr. Horslen was going to be away for the next several weeks and they didn’t want him to stay inactive on the transplant list for that long. After a few days and some discussion, we made the decision on Tuesday to have Patrick admitted at Seattle Children’s so they could both treat the infection and do the evaluation.

We got the final go ahead late in the day Tuesday. I was up till 1 a.m. packing. Wednesday he was discharged from Primary Children’s with just time to go directly to the airport. The flight went well. They only real difficulty was that Patrick’s ostomy bag started leaking at takeoff. Well, and that I got a tad bit lost in the airport because we landed in the international terminal and airports aren’t as well marked when you have to take the back elevator routes.

Nevertheless, we arrived at Seattle Children’s around 6 p.m. – just as they were changing shifts. We met part of the medical team that would be following him and, as usual, wowed them by giving them in writing all the information they really would need. It took some time to get orders written, so we had another late night as labwork and meds came trickling in. It was about 2 a.m. before we made it to bed again.

The nice thing about being inpatient is that it gave me a sense of what things will be like during his recovery after transplant. We started with an early abdominal ultrasound, specifically a doppler. Yes, this looks a bit like the weather map images, only it shows the flow of blood through the veins. They were looking to see if portal hypertension was developing. (As the liver scars, it starts to send blood through other vessels creating extra blood pressure through them. It can cause lots of complications.)

The team rounded about 10 a.m. It was a big group, about 15 people, including his GI Dr. Horslen, his transplant coordinator, nutritionist, and others who specifically follow him. They had looked at the ultrasound and the labs from the night before and at his labwork. Both looked as good or better than they had in April.

Dr. Horslen came back later in the day to talk to me and said he was very glad we’d come. He’d imagined he’d find Patrick in much worse shape after the reports he’d been getting. He did a physical examination, too, and then said that he didn’t think Patrick’s liver was really in bad shape yet. He said that the problems with his spleen were probably mostly due to the many months of infection that Patrick has been through, meaning that hopefully when he’s healthy, his spleen will improve, too.

We discussed other goals, too… including taking down Patrick’s ostomy and replacing his PICC line with a broviac line when he could have surgery. We’ve been going the rounds on the question on whether or not Patrick should have his g-tube removed, too, before portal hypertension makes it bleed and be more difficult to close. However, Dr. Horslen said he was under the impression it was unused when he recommended that, and that if we were using it, he’d be ok with us leaving it in.

It was great to talk to him and to watch him play with Patrick. Not only is he brilliant, but he has a wonderful bedside manner. It made me happy to remember that there was at least one big reason why we chose Seattle Children’s for transplant.

We also had visits that day from the nutritionist and a care coordinator. And then in the afternoon we got to have a little bit of lazy time. Child Life brought Patrick some bubbles and it was fun to watch him experience those for the first time.

When the nurse came on the night shift and Patrick was playing with her while she took vitals she frowned and said “Do you really have to go home tomorrow?” I was surprised because I’d expected to need to be there at least through the weekend… But before midnight they had me making lists of what would be needed for me to be able to go home on the 5 p.m. flight the next day.

Rounds in the morning confirmed that they felt Patrick could go… assuming that we made sure he got a visit from Dr. Reyes, his surgeon.

The rest of the morning I packed and kind of waited for word that we were really going. A volunteer came to play with Patrick so I’d have hands free. About noon, I still hadn’t heard one way or another, so my nurse started making calls for me. I looked at flights and now there was only 1 left and the price had doubled. But – the insurance company agreed they’d rather pay for extra airfare than another night in the hospital – and so I started working on booking a flight home.

Dr. Reyes came in about 1. We talked again about the importance of taking down Patrick’s ostomy. He told me a bit about starting intestinal transplants in Pittsburgh 15 years ago. (He was on the team that did the first ones.) And he explained how they’d learned that the surgery wasn’t really effective without a strong GI team behind it to make sure the patients stayed healthy. He also explained that one thing they’d learned in that time is that survival rates are better without an ostomy.

I ran our other surgical plans past him (liver biopsy, broviac line, and possibly g-tube.) He looked at me and said, “Leave the g-tube in. He’ll need in later.” So I guess that settles that.

He left and I immediately went back to booking a flight. Meanwhile, the care coordinator came and brought me a cab voucher. My nurse got Patrick ready and booked the cab while I got the ticket. And I literally hung up the phone, put away a few things, and walked out the door.

The flight home went smoothly. Howie was there to meet us. We had some adventures waiting on the way home including a flat tire, a broken jack, and eventually a tow home. But at last, we are home.

They discussed Patrick’s transplant status in their meeting yesterday. They were ready to move him back to status 1 for a small bowel. They will not yet list him for a liver. When they checked his labs, though, they found a blood culture positive for infection… so the doctors are discussing what to do now. He’s not sick and it could have been a contaminated sample. But they have to work that out before Patrick’s listing is made active again. Time will tell.

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!

How everything changed in a moment

WARNING: THIS POST INCLUDES DETAILS OF PATRICK’S CARDIAC ARREST AND SUBSEQUENT PROBLEMS IN THE ICU, INCLUDING PICTURES.

I’ve been asked to explain several times the events of this week. I’ve decided it’s probably easiest if I just take some time to sit down and write this in a blog. It will save frequent emotional repetitions for me… preserve some of the last week while it’s still fresh in my mind… and hopefully give some answers for those who are wondering how things got to where they are. These are things that are still hard for me to remember and talk about so please don’t be hurt if I don’t want to talk more about what I’m posting in this entry.

In my last post, I wrote about a yeast infection called candida that Patrick had in his central line and in his blood. He was hospitalized for 11 days in June for that infection and then went home on antifungal medications. On July 5th his fever returned and we came back to the hospital to learn that the infection had grown back again.

In order to treat the persistent infection, they decided to return to giving him a very dangerous medication called amphotericin (a.k.a. “ampho-terrible”). He was on a very high dose but seemed to be doing ok. He always got chills while it was being given and wanted to be held and held very still, but all other signs pointed towards it doing it’s job without too much problem.

On the 15th, we were making plans to go home. We would give 3 more weeks of treatment at home to make sure the infection didn’t come back. However, before we went home, we decided to try giving the medication the same way he’d get it there. This meant shutting off his TPN (IV nutrition) for a few hours while the medicine was being administered.

He’d been doing so well that I ran home to shower and take care of a few things right before they were supposed to start the ampho. I got back an hour into it and he just didn’t seem to be tolerating it well. His hands were as cold as ice, despite several blankets and heatpacks. He was pretty restless. We tried to feed him to comfort him, but that just make him sicker.

About 3:30 p.m. he got really agitated and started to squirm and pull at his ears and cry. Then he just went limp. I called his nurse in and she called in one of the charge nurses. They took him from me and started administering CPR.

They also hit a button on the wall that pages for a “Code Blue” on the PA system. In under a minute the room was filled with people. A PCT who had cared for Patrick before came immediately to my side, as did a social worker and they stayed with me until we were delivered into the hands of another social worker in the PICU.

One doctor took charge of calling out orders while another kept track of everything that had been done. There were at least 10 people bedside helping with CPR, medications, watching vitals and I don’t know what else.

After about 15 minutes (a.k.a. an eternity) they finally revived him and they took Patrick straight to the Pediatric ICU. I followed with the social workers and his nurses in another elevator.

On the way up I finally got a hold of Brian and told him to come up and where to find us.

Normally parents are taken to a waiting room, but they knew us and how involved we are with Patrick’s care so they let us stay and watch as they placed an arterial line to monitor his blood pressure and worked to find out what happened.

The best guess is that his weakened little body was hit with a few things at once. Being off his TPN caused his blood sugar to drop. At the same time, his weakened kidneys weren’t processing potassium in the right way. When those two things hit at the same time, it created a sort of perfect storm that caused him to seize and caused his heart to stop.The next day they worked madly to stabilize him. His organs had been starved for oxygen for long enough that they’d forgotten how to work. His blood sugar was all over the charts. His potassium levels were out of control. He was anemic and his platelet count just kept dropping. His nurse that day didn’t sit down for the entire 12 hour shift.

Over the next few days things started to stabilize but there were a lot of things out of whack still. His spleen, which had already been in bad shape because of his cholestasis (liver damage) and prolonged infection, decided to protect itself by sequestering all the platelets that went through it. As a result, although they were giving multiple transfusions, his platelet count was still low and he was bleeding easily from anywhere that could bleed. His kidneys also had kind of shut down and so all of the extra fluids being poured in to give transfusions and electolytes and medicines weren’t being cleared by his body. Instead they were soaking through the veins and collecting in the other tissues of his body.

To top it all off, he had some bacteria “leak” from his gut and get into his bloodstream causing a bacterial blood infection.

Saturday they tried to extubate him, but by Sunday morning it was pretty obvious that he was having trouble breathing. X-rays showed that the fluid in his tissues had made it’s way into his lungs. And so they had to put him back on the ventilator and started to give him medicines to make his body shed the extra fluid.

We watched and prayed and waited and tried to get ready to say goodbye until Wednesday when something amazing happened. Patrick peeked at me through heavy eyelids and seemed to know that I was there… He started reaching with his hands and so I gave him a rattle… and he shook it! The next day I was actually able to get him to laugh!

As the day went on, he woke up little by little and started to play peek-a-boo and smile and hold toys. His X-rays and labwork improved. As he woke up, they started to wean him slowly off the ventilator and off the sedatives.

His throat was very swollen and we weren’t sure if the airway would stay open without the tube in. But Friday evening they decided the only way to know would be to try. So they took him off the ventilator and put him on high flow oxygen. And he was the happiest kid you could imagine.

Without the breathing tube to bother him, they were able to turn off his sedatives and we became aware of what might be another problem. We noticed as Patrick started waking up that he wasn’t focusing his eyes well… staring off into space and not always following what’s going on in the room. He’s also been holding his head and arms very still. When these issues didn’t go away when the sedatives started wearing off, we became more concerned.

Neuro came to see him and said that they think there is reason to evaluate him. He will have an MRI on Monday as well as a neurodevelopmental workup. There is a possibility, especially considering how long he was down, that Patrick’s brain was damaged. Neuro will be able to help us see if that is true… and if it is, they’ll help us do all we can to help him do the best that he can.

Regardless of how weak his body is, though… the spirit inside of it is still Patrick’s. His eyes still sparkles and he loves to play and laugh with us. It has been a gift to be able to hold him and play with him again… to know he knows us and loves us still. It breaks our hearts to see that magnificent spirit confined by such a weak little body and we hope that those limitations will be brief.

As far as long term planning- Patrick will need to stay in the ICU until he is better able to breathe on his own. He is doing it right now, but he is working very hard at it. He’s on hold for transplant until he can go back to Seattle for another evaluation. At the very least, he will probably now need a liver transplant along with the small bowel transplant. We won’t know if he’s still healthy enough for transplant, though, until he is evaluated again. We’ll continue working with the doctors and therapists and nurses here to help Patrick regain as much as he can. And the rest we’ll leave in the Lord’s hands.

We’ve always known that there was a plan for Patrick’s life. We’re just humbled to get to be the parents in that plan. We trust Heavenly Father to take care of the rest.

A lost central line

I need to stop promising to write about transplant. Whenever I do, Patrick gets sick and we end up back at the hospital.

Thursday in the middle of the night Patrick woke up crying the inconsolable cry he only uses when something is wrong. As usual, we immediately started looking for signs of a line infection. However, his temperature wasn’t even 100 degrees (100.4 is the least his doctors consider a fever) so we fed him a bit and I sat up with him and eventually he went to sleep.

When he woke up in the morning, something was definitely still wrong, but he still didn’t really have a temperature… just didn’t want me to put him down. As we always do when he’s sick, I held him and took regular temperatures. Around 10:30 a.m. his temperature hit the magic 100.4 and I started making calls to get blood cultures drawn. Usually we have some time if we catch it that quick. However, as I started to try to make plans, his fever kept rising. At 101 I started packing for the hospital, at 102 I put some hustle into it and by the time we made it out the door his temp was 103.

Being our 3rd fever in a month, I wasn’t too happy about the return trip to Primary Children’s.

When we arrived they checked his vital signs and then they did something they’ve never done before… instead of finishing the standard check-in process, the triage nurse disappeared for a minute and then came back and took us straight to a room. And not the typical room, either… They took us into one of the “resuscitation”, a.k.a. trauma, rooms. Patrick’s temp was over 104 and his pulse near 200. He had a serious infection and was in shock.

They quickly worked to cool him down with cold packs and fever reducers and eventually he was looking and feeling better.

Labwork revealed that Patrick had a yeast infection in his central line. Since yeast gets into the plastic of the line, it had to be removed. It has to stay out we are sure the infection is out of his blood. In the meantime, he has a peripheral (in the hand or foot usually) IV. You can’t give full TPN through this type of IV so he’s getting a sugar/saline solution instead.

So now we are in the hospital waiting out the infection so that Patrick can get to feeling better. He doesn’t get as much sugar as he’s used to so he’s lacking energy. The IV antifungal medicine upsets his stomach we think. He’s getting rather stir crazy. The two things that bother him the most, though, are 1) the blood draws they wake him for at 6 a.m. every day and 2) the splints on his foot and hand to keep him from damaging his IV.

He’s just not himself these days. Keeping him calm is a 24/7 job for me. I’m basically living at the hospital while Howie works, manages the house, and does his best to take care of me. But we can’t imagine doing it another way… Patrick is fighting hard to get healthy and needs support in the fight.

I have to share one example, though, of Patrick’s indominable spirit. This morning we added the IV to his hand and so he woke up to having a splint put on that immobilizes his left hand. For the first part of the day he’d look at his hand and just whimper… he’d try his best to hold it still. Finally later in the day the nurse helped me get some toys that work with the touch of a button so he could use his splinted hand to play with them. After some work with that he started to get a little more adventurous.

He got a wrapper in his free hand and was playing with it and, after some work, he managed to hold the wrapper with the fingers on his splinted hand. He worked on that for a good 15 minutes, then he reached over and grabbed my hand with his free one. Using his new skill, he put my finger where he could hold it with the fingers of his splinted hand.

Patrick is an amazing kid. This is one of the hardest trials we’ve seen him go through so far… However, tonight’s adventures show me that he is determined to push the limits that his imperfect little body give him.

We hope that he’ll be able to stay healthy for a couple more days, have a new line surgically placed midweek, and then be able to come home for the final weeks of his recovery from this infection. If any little spirit is strong enough, Patrick’s certainly is.