Top 10 ways you’ll know that Patrick has had his transplant

It seems that our fundraising efforts have created some confusion about Patrick’s transplant. The fact that the Produce for Patrick stands coincided with Patrick’s intestinal reconnection surgery has led a lot of people to believe that transplant has already happened. As much as we wish that were true, Patrick is still waiting for his transplant.

I’m asked every few days how the transplant went. And when I explain that we’re still waiting, the response I almost always get is “Well, you’ll let us know when it does, right?”

So – for all who are afraid that they’ll miss word of Patrick’s transplant, here is a list of ways you’ll know it’s happened. (It’s also a little intro to what we expect life to be like after transplant.)

1) We’ll be in Washington. Patrick is having his transplant done at Seattle Children’s Hospital.

2) Brian will be alone when he’s at home. Patrick needs to live near Seattle Children’s for at least 6 months. I’ll be there with him.

3) Brian will achieve frequent flier status. The plan is for him to go back and forth between cities until Patrick and I can come home.

4) We’ll be germophobes. To prevent rejection, Patrick’s immune system will be suppressed. We won’t often take him into public places, and when we do, he’ll probably be wearing a mask. If you visit us, we’ll demand that you be healthy, and that you make sure to wash your hands… often.

5) Patrick will be allowed to eat. Not just a teaspoon of formula and one bite of solid food every 3 hours. He will need normal quantities of real food because…

6) Patrick won’t need TPN anymore. At first they’ll slowly decrease the number of hours that he has it. A goal before he comes home will be that he doesn’t need it at all anymore. He won’t have an IV anymore. It’s possible that for a while he’ll be fed through the tube in his stomach.. but eventually, even that will not be needed.

7) Patrick and I rack up a different kind of frequent flier miles. For the first little while after coming home, Patrick will need to go back to Seattle Children’s much more often than he goes now. To make these trips while he’s on immunosuppressants, we will probably stop flying commercially and use smaller planes through a service like Angel Flight. Since small planes fly more slowly, the trip will take a day each way, not counting time in clinic.

8 ) We’ll have to start watching our budget even more closely than we do now. Right now, most of Patrick’s care falls under our insurance company’s catastrophe protection. However, immune suppressants are a pharmacy benefit, to which no out of pocket maximum applies. Co-pays for transplant medications average hundreds of dollars a month.

9) We’ll probably change a lot of what we do. Patrick’s care will require a whole new and different routine. Because his health will be at risk, we’ll have to be careful of where we go with him, as well as what we do around the house. (For example, gardening is a huge health risk for Patrick.)

10) WE’LL TELL YOU! I promise, when it comes time for Patrick’s transplant, we will be overflowing with excitement, fear, and anticipation. An intestinal transplant is MAJOR. You won’t be guessing if it’s happened. It will be all we can think about for a long time.

Now, the next question I’ve been getting is this. “If Patrick hasn’t had his transplant yet, why are you fundraising?” The answer is this… Patrick’s transplant is a VERY expensive one. It’s a newer form of transplant with higher rejection risk, and so follow-up care for this transplant is quite intesive. Furthermore, we have to travel to have the transplant done, which ups our cost exponentially, especially when you add in cost of living and travel on top of out-of-network medical bills and medication co-pays. Raising $70,000 can take some time, and we’re trying to be prepared and to help in the fundraising efforts while we are still in a position to do so.

There is, of course, the possibility that Patrick’s health could fail before he gets to transplant. This is one of the biggest reasons that we decided to work with COTA to do fundraising. Any money raised that Patrick doesn’t need will go to the transplant-related expenses of other children.

So there’s my educational spiel of the morning. Hope it helps to answer some of the questions you may have.

Lines

Patrick just got a new PICC line.

PICC stands for Peripherally Inserted Central Catheter. It’s “peripheral” because it is put in through his arm (or sometimes leg) but “central” because the line then runs up through that vein into his aorta (a.k.a. into his heart).

Central lines are very important. Because they run into the bloodstream closer to his heart, they are able to put things like TPN or medications into it that would damage a smaller vein because they are too thick.  Also, because they are in a main vein, they can draw blood from it to run tests rather than having to poke him every time he needs bloodwork. (Which for Patrick is sometimes done several times a week.)

Because Patrick needs TPN to survive, he needs to have a central line. Sometimes he has a PICC line in his arms. Other times he has a “Broviac” or “Cook” line in his chest.

Lines can be lost to infection, to damage, to clotting, or to accidents that dislodge them. But every line lost is dangerous for Patrick. One of the biggest factors if his survival is continuing to have veins to put lines into and so it’s not uncommon to find us discussing what semi-heroic measures to use to make a line last just a little bit longer.

This line placement went remarkably smoothly. The procedure took less than half an hour, following by a half hour nap. Now he’s awake and happily playing in his bed. Still a bit shaky from the anesthesia, but trying his best to sit up. He must be feeling ok.

The surgery went smoothly

According to Patrick’s surgeon, the procedure went as well as could be expected.

We got up at 4:30 this morning to be able to make it to the hospital by 6:00 a.m. We discovered as we were getting him ready that his TPN pump had malfunctioned and did not run overnight. Amazingly, though, he was doing ok. I learned to use his glucometer just the day before and confirmed that his blood sugar was low, but as soon as we gave the TPN, it picked back up. When we got here, the surgeons weren’t overly concerned, since things had normalized.

We checked in as usual, put Patrick in little hospital pj’s (he’s now big enough to wear the pants!), and then waited to talk to the surgeons.

Dr. Rollins, the surgeon, came first and we talked about the plans for the day. As we discussed things, we decided that in the interest of not wasting places for a central line to go, that we would leave Patrick’s PICC line in until it becomes medically necessary to pull it. Then we visited a bit with the anesthesiologist, who looked an awful lot like Shaggy from Scooby Doo.

Then it was off to the surgery waiting room. Urology was scheduled to see him first so,  although we were tired and starving, we hung around till we talked to them. They were able to get a catheter in with minimal difficulty so they didn’t do any other procedures. They gave us written and verbal instructions to prevent future problems and then went on their way.

We grabbed a quick breakfast, then went back to waiting. Dr. Jackson, Patrick’s GI, stumbled across us in the waiting room and was excited that he could go in and see Patrick’s anatomy firsthand.

Then we had a long, long wait. We didn’t hear much over the next 3 hours. But about 12:30, Patrick’s surgeon came in smiling. Since we had a lot to talk about, we got to go to one of the consultation rooms for the very first time.

The surgery went relatively smoothly. The only thing unexpected was that the adhesions (severe scarring) that he had were worse than they’d anticipated. They had to take extra time to remove them and find the ends of his intestines.

They put the two pieces together, although they are a less than perfect fit. Dr. Rollins held up his fist and touched one finger to it and said that it looked proportionally about like that. As it turns out, he does not have any jejunum.

He has 17 centimeters of duodenum, measuring from the base of the stomach. This means he doesn’t really have any of the absorbative portion of the small intestine. He does have the left side of his large intestine, the descending colon. It is pretty apparent from what is left that the cause of his short gut was probably that the blood supply to the intestines was lost because they twisted. None of this is really new to us… but it was nice to have it finally confirmed.

They also did a liver biopsy. Dr. Rollins said that on visual inspection the liver looks relatively healthy. It is generally a good color and only a little more firm than normal. This is VERY good news for Patrick right now.

So – where do we go from here? Because the large intestine has never been used, it will need to stretch out and get used to being used. First, though, the point where the intestines were stitched together needs a chance to heal. Right now it is most likely swollen closed.

Until that point, Patrick has a tube going through his nose into his stomach that will suction out stomach acid. Eventually, his intestines will heal and adapt and that won’t be necessary.

The main goal before we can take him home is that he be able to pass stool and no longer need the suction. We’ve been told to expect about 2 weeks of recovery before this is possible. Then we can begin again to work with him on feeds.

In the short term, he’ll stay here in the PICU for a little while. Because of the amount of scarring that needed to be removed, he is in more pain. So right now he is still intubated so that he can safely be on a morphine drip. That is the plan through the night, and then tomorrow they’ll talk about extubating.

With all the tubes, though, he looks pretty good. He obviously hurts. But he has woken up and looked at me… and with the morphine, seems to be resting very well.

The rest of our day will be spent getting settled and keeping Patrick comfortable. And then just working on a quick and smooth recovery. I see all good signs here that they think he’s very stable.

I’ve got pictures to post… but forgot my card today. I’ll add them ASAP.

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.

Transplant Pre-evaluation: Day 1


So the first big question about getting Patrick to Seattle was transportation. With current airport security, how do you get a kid who is connected to running IV fluids through security? And how do you go about transporting a week’s supply of TPN? It has to be kept at a certain temperature and, well, there is just a lot of it. Hauling a cooler and coordinating tubing through the airport just didn’t sound like much fun to us, but neither did dealing with any lost luggage.

So I did tons of research: called the TSA, read every page in the Delta website about baggage, and read websites written by other TPN patients. Finally, I asked the pharmacy if they could ship the TPN ahead of us. Turns out, that’s a free service that they provide. And our wonderful friends Lindy & Kelly helped us find a place in Seattle to ship to and then picked up the shipment and kept it in their fridge until we could get there.

So we were able to travel with just 2 day’s worth of medical supplies in our carryon… which was still enough to fill an entire carry-on sized suitcase, but probably saved us TONS of grief. Patrick’s luggage was by far the biggest and we were probably quite the sight making our way around with Howie hauling 3 rolling suitcases behind him and his carry-on and me with a stroller, a duffel bag, and a diaper bag.

We were surprised by how smoothly things went at security. In Salt Lake a TSA worker came up to us when she saw us getting our stuff ready to go through X-ray. I explained to her Patrick’s IV’s and showed her my suitcase full of medical equipment, including IV solutions and syringes full of saline and heparin. She took over right away. Patrick and I went through the metal detector and (of course) set it off because of his pumps. Then they took us to the little security station and ran their little tests on his medicines. When they were all done, they patted Patrick down and then did a wand/hand search of me. Then they thanked us for keeping things organized and making them easy and sent us on our way.

We were allowed to board the plane first because we were travelling with an infant, which was different but nice, especially since we needed to get his stuff settled so we could get to anything he needed during the flight.

We booked him a seat, not to sit in, but to give us some extra space. His backpack rode there buckled in and Patrick started the flight in his daddy’s arms. He played and he slept and he flashed his bright eyes and smile at the flight attendants and the passengers around us. He was by far the best behaved child on the flight! Whimpered only when he was hungry.

Finally we landed and took our crazy little caravan to the rental car company and checked in at our hotel. We took a much needed nap before heading over to visit Kelly and pick up the TPN shipment.

The day of travel was much smoother than I could have ever expected! Which turns out to be a good thing, as we had a very long week ahead of us

Transplant Pre-evaluation: Introduction

We’re going to have a little series of posts here about Patrick’s transplant pre-evaluation at Seattle Children’s Hospital. I decided to break this up into a series not to extend the suspense for you, but to increase the odds that I would be able to finish a post in a single sitting.

So, we’ll start with an introduction. As you know, Patrick has extreme short gut syndrome. Without intestines, he is completely dependent on TPN for nutrition. And the lipids in the TPN are notorious for damaging the liver. If he had more intestine, there would be the option of adapting Patrick’s intestine, but with so little, he needs to have a transplant before his liver fails if he is going to survive.

Our GI in Utah recommended that we go to Seattle Children’s Hospital where they have a relatively new intestinal transplant program being started by some of the most experienced doctors in this field in the country. So, after some prayer and some research we requested a referral and last week we flew out for an evaluation.

There are several purposes for a pre-evaluation for transplant:
1) It gives us a chance to meet the team and see the facility and decide if we want to pursue treatment there.
2) The doctors can see the patient and have tests done to give them first hand knowledge of the case so they can recommend a plan of action, including deciding if transplant is the only option for the patient.
3) They do lots of tests that check to make sure Patrick is healthy enough for a major surgery, to detect any unknown health problems, and to gather the information needed to match him with a donor.
4) They look at our family’s ability to maintain Patrick’s care financially, emotionally, and physically both before, during, and after transplant.

Once the workup is complete, Patrick’s case is presented to a review board and a decision is made as to whether or not he is a good transplant candidate. When the decision is made, they’ll notify us.

So that’s the purpose of the pre-evaluation. The next few posts will describe our experience and what we learned.

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.

Broviac Line

I wrote earlier that Patrick was going to have a broviac line placed after his infection had cleared. However, since he has tiny, tiny veins it’s really hard to get a peripheral IV into him and equally hard to keep him there.

Because he doesn’t have enough of his bowel to be able to absorb nutrition or medicine that he takes orally, Patrick depends on an IV to give him the nutrition that he needs. Also, as he’s recovering from this most recent infection, he needs IV antibiotics.

When I arrived at the hospital this morning, they told me that they’d be placing his Broviac line today instead of waiting a week. He’s been stuck just so many times trying to place an IV that they were running out of places to look – and he was running out of patience for it. He went to surgery this morning to have the line placed. It goes in through a vein by his neck and is “tunneled” under his skin. A catheter, or IV tube, comes out of his chest. This is a more durable IV line that should last him several months. In fact, one requirement to take him home was to have this more durable line put in.

Patrick went into surgery a little before noon today and was in recovery by 12:15 p.m. So far he’s been sleeping quite peacefully. We expect a quick and easy recovery. As soon as he’s awake, he should be able to go back to his normal routine.

If you’d like to know anything more about the line, this link will take you to the info sheet that Primary Children’s Hospital gave to me.

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.