surgery – Page 2 – Patrick Hoopes

Getting a line in and back on the transplant list

Sorry to have kept you waiting for updates. As you’ll see from this post, it’s been a crazy few days.

First of all, if you haven’t heard word any other way, the doctors in Nebraska were able to get a new central line into the Superior Vena Cava and Patrick is back on the transplant list. I mean to post updates but didn’t expect them to order bed rest and minimal activity for the next days after the procedure and, well, accomplishing that is kind of a full time job where Patrick is concerned.

We checked in to pre-op at 5:30 a.m. which is 4:30 a.m. Mountain Time and we were all incredibly sleepy. Pre-op was the usual flurry of activity as we met anesthesiologists and got fluids ordered and labs drawn. (They had an amazing phlebotemist who managed to draw blood without Patrick even crying and on her first attempt.) We met the OR nurse whom Patrick loved so much he said she was “Kinda Jo”, in other words, put him at ease like his favorite child life specialist. He collected teddy bears and various and sundry medical equipment to use on the bears and charmed everyone in sight.

Then we got the meet the doctor and go over the plan.

The procedure it took to get us there absolutely terrifies me. I order to get around the blockages, they put a guidewire in through Patrick’s femoral vein and ran it up to his heart where they repositioned the veins in order to reach the right ones and get around the clotting and scarring. At least, that’s what I understood. He followed along with x-ray and ultrasound the entire way to make sure things went where they should.

What I really gathered from the description of the procedure is that it was insanely dangerous. As the interventional radiologist was going over the risks with us, I just kind of had to shut off the part of my brain that could process what those risks might mean and remind myself that without it, he had no long-term chance of survival. Instead, I honed in on the fact that he sounded confident in what he was doing and that, well, it just felt right. I couldn’t help but think that THIS was the reason we’d been impressed to transfer Patrick’s care to the University of Nebraska. Because they had doctors who had developed this technique to save access and save lives.

Knowing how difficult Patrick’s access can be, we all kind of hunkered down expecting them to need hours. So, when we looked up at the status board after just a couple of hours and see that they were closing. Then, sure enough, there was the doctor telling us that everything had gone well and that he had a new line in place.

As we understand it, this is a rare direct superior vena cava line, entering the vein directly after going through soft tissue. (Patrick’s GI is questioning this, so I’m getting a copy of the procedure notes so I can go back over what was done and we can understand it.)

He went ahead and put in another double lumen line for us. Because they stock a different brand, the line they had was rather large, a 9 french, but that could kind of be a good thing. Should be less prone to clotting problems.

He also us that this line is to, under no circumstances, be taken out without his approval. If Patrick gets and infection, if the line breaks, if it clots, whatever… the team at the University of Nebraska needs to get involved. Maybe they will teach the team here how to keep the site open. Or, maybe they will fly us back out again. Whatever happens, they do not want to have to attempt to repeat this procedure. We were told that, next to transplant, this is one of the riskier and more specialized things that they do at their hospital.

Whew!

And by the end of the day, Patrick was back active on the transplant list.

The rest of the day was kind of crazy. Because of the risks of bleeding from that femoral access, Patrick was ordered to 3 hours of total bed rest with that leg completely immobilized. Knowing our child, we quickly agreed to request sedation for that.

At first, the sedation made things a little easier as we scrambled to attached fluids to the new line to keep it open. We also called to ask that his old line be removed while he was sedated (they’d left it in thinking it was still needed, but decided we didn’t need that to be done at home.)… and then scrambling to round up information about the new, different brand of line and repair kits, etc.

Patrick started to wake up just a little and was, well, cuddly. That’s normal for him, but normally I’m also allowed to hold him. This time, he had to stay in bed. So he settled for holding onto my head. For half an hour, he held my head as tightly as he possibly could. (Meanwhile, the doctor came back to pull the old line.)

Patrick making his teddy bear play tablet while on forced, sedated bed rest

About an hour in, the nurse decided to stop giving him sedation and just let what was in his system and me distract him. So, we played games on the tablet and we checked the blood pressure of the teddy bear and tried out a Nintendo DS. Meanwhile, Brian went back to the Ronald McDonald House to bring back TPN and to try to meet our delivery of medical supplies.

2 hours in, the doctor said that Patrick could sit up in bed and make sure his leg was ok with the extra movement. The post-anesthesia nurse was kind of tired of him tying up the space in PACU I think (they could only keep giving him sedation there) and so she discharged us to their extended care unit.

The extended care nurse acted as though she hadn’t received report from the PACU nurse, though. When we got there, she tried to insist that Patrick needed to stay lying still in bed for another hour because that’s what the orders in the computer said. And so, well, yes, I went a little angry mama bear on her and told her that I would not have agreed to come to her unit had those been the instructions.

And then we spent the next half an hour trying to keep Patrick still sitting up in bed, doing crafts, sipping water, and not chewing on or removing the COMPLETELY inappropriate non-pediatric pulse oximeter on his finger.

And then, I don’t know who talked to her, but the nurse came back in and cheerfully told us we could get Patrick dressed and he could be discharged. Like the nurse who I’d gone crazy on didn’t even exist.

Anyway, we were grateful for the dismissal as we had managed to squeeze in an appointment with one of the transplant surgeons at 1 p.m. and 1 p.m. is when Patrick was supposed to be cleared after 3 hours’ bed rest.

So, we hurried over to the Intestinal Rehab Clinic and checked in for our visit and a little while later, Dr. Langnas joined us. We explained to him our concerns about whether or not waiting for a combined liver/intestine transplant might be increasing Patrick’s wait time. He listened to our concerns and then explained the benefits that he sees for Patrick in the liver listing. Then he promised us a future date where, if Patrick has not received a transplant, he will take our concerns back to the transplant review board for reconsideration.

The rest of the day we spent trying to help keep Patrick down. We went back to the Ronald McDonald house again for a little back and let Patrick play in the playroom. Then, in the interest of some forced holding still, took a drive instead. Patrick heard us mention the temple as a possible destination and voted for that. So, with our bruised and bandaged and druggy little boy, we went and visited the Mormon Trail Center and Winter Quarters Temple grounds. Then came back on time for a yummy lasagna dinner courtesy some generous Ronny House graduates, then went to bed early and exhausted.

Playing pioneer at the Mormon Trail Center

After tucking Patrick into bed, it hit me just how serious what he’d been through that day and week really was. Another case of him surviving against the odds, an unquestionable miracle. And a VERY close call. I shed a few tears of fear and relief that night, said a prayer of gratitude, and went to bed.

The line placement was a success

We are home and in our own beds after a very VERY crazy day. Before you have to read too far, I’ll tell you that the surgeon was able to get a central line into the same vein.

Now back to the day…Patrick wanted out of the room after being cooped up yesterday, but we were a little too late in our attempt and the nurse needed us to hang around to make sure medications were given on time this morning. He spent the entire 2 hours the medications were running doing some running himself around the room, despite my protests that he was pulling his line with the very short tubes.

When he finally got to leave the room, he took off literally running… fast enough that I had to run to keep up with the IV pole.

We got to the playroom and he starting flitting from thing to thing.. And then I realized that the damp spot I’d seen on his chest was more than just damp… it was dripping wet. So I looked and, sure enough, the good lumen on the central line had broken.

So, we turned and headed back to the room, picking up Patrick’s favorite child life specialist on the way back. You should have seen the nurse’s face when I walked onto the pod and said, “His central line is broken. Please call the team and the IV team right away.”

We cleaned him up, talked to the doctors, and wrapped up the line to keep it clean. Then Jo from child life helped Patrick place an IV into Tubes’ (Patrick’s medical me doll) hand. As we finished, IV team arrived and we went and got a real IV for Patrick. Explaining the procedure actually seemed to help a little bit with his fear.

Then the GI team came for rounds, got brought up to speed, and redressed the broken line to keep it sterile. We opted not to repair it as it was due to be replaced anyway. Then surgery came by and had me sign a consent.

By then, Patrick HAD to move. So we took advantage of the short break from tubes that having to wait for a bag of fluid that was safe to run through a peripheral IV (TPN has too much sugar and other goodies in it that wreak havoc on veins.). We hopped on his physical therapy bike and started doing rounds of the hospital. My goodness is that boy fast! And even with only one good hand to steer with, he was flying through the halls.

Did I mention that Patrick’s OT said that she was going to recommend that Patrick always get to borrow a bike when he’s inpatient to burn off energy and help him calm down?

Amazingly, riding the bike wore Patrick out. He was so tired he didn’t want to pedal anymore. We came back to the room, rubbed his lavender calming cream on his feet, and he fell right to sleep.

While he was napping, my cell phone rang. It was Dr. Jackson (Patrick’s GI) calling to say that he and Dr. Rollins (the surgeon) had looked at the radiology and decided it was too risky to change out Patrick’s central line. And as I started to explain that that ship had sailed, Dr. Rollins arrived in the room.

He’d just been brought up to speed and knew that the line needed changed. But he told me that he honestly didn’t know where a new line could go. We talked about how much of Patrick’s access had been lost and how he wasn’t sure he could get a catheter to pass over a wire to change the line out over a wire. Then we talked about those scary other places central lines can go like in the groin or liver. It was the first time those options seemed real and I was quite scared when he left.

Thankfully, Patrick napped a little and Brian came up and we grabbed some lunch and talked and I didn’t spend too much time alone with those thoughts.

And then Patrick woke up from his nap and Jo from child life came back with a box of things to teach Patrick about surgery. And surgical transport came to get Patrick, then got called away on an emergency, and came back an hour and a half later.

Patrick finally made it to the OR around 3:30 p.m. The surgeon was cautious, but hoped it wouldn’t take more than 3 hours. We went and set up shop in the waiting room.

And because I didn’t expect a fast outcome, we were surprised to see him back after a little over 2 hours instead

We were amazed when he told us that he’d been able to change out the line over a wire. We were even more amazed when he told us that there was so much scar tissue in the superior vena cava (the vein that enters the heart where lines are usually placed) that the wire wouldn’t go through it. And surprised yet again when he explained that somehow his wire had landed instead in another major vein called the azygos vein. He said that sometimes they do put lines in that vein, but usually have to go in surgically through the chest.

I can’t help to think that that represents a bit of a miracle.

And when we got back to the room we flushed the line. I almost wanted to cry at how smoothly it flushed. I knew Patrick’s line was bad, but feeling the contrast makes me amazed that it lasted for 15+ months.

And then, because they offered and because we were tired and homesick, we accepted a quick discharge.

We will still need to go back in a couple of weeks for a venogram to see exactly where Patrick’s veins run now. There’s this amazing process called collateralization where the body, when it starts to have thrombosis or scarring in a vein, starts to make new blood vessels instead that connect to the heart in all kinds of crazy ways. A venogram will show us exactly how those things connect.

We did one in Nebraska, but it was somewhat inconclusive. So we are going to give Primary Children’s a go.

But for now, it seemed like we’d had enough hospital and enough sedation and it was time to let everyone rest. Patrick ran around home very happy tonight. And very funny. He was making up all kinds of silly jokes that made me laugh. He even ate 1/4 of an applesauce cookie.

And on that note, I’m going to quit staying up while the rest of the household is asleep.

Thank you all for your prayers and thoughts and love.

Losing the line we were told never to lose

Or perhaps I should title this post “A date with the devil.” We are being forced to get to know the devil we don’t know.

Believe it or not, we finished a course of antibiotics and we went on vacation. Brian went on a business trip to the Ukraine. Patrick and I went to visit our good friends, the Laylands, in Seattle.

But writing about those things will end up waiting for another day. Because I’m writing tonight from a hospital room. Again. And there are things on my mind that, for me, have been the subject of nightmares for many months now.

Patrick has lost his central line. Not entirely yet. But it will have to be replaced.

It all started Saturday night right after I put Patrick to bed after our first day home from Washington and went to clean up before Brian returned from Ukraine. Patrick had been in bed about half an hour when I heard a plaintive “Mommy”, and then that unmistakable, heart stopping sound of him throwing up in bed.

I ran up the stairs but was too late. The poor little guy threw up half a liter of nasty green stuff. He must have felt awful all day. It took an hour to settle him enough to sleep.

Saturday morning, a homecare nurse had come to draw some labwork and follow up blood cultures. All seemed well at that point.. But i was very glad for those cultures when Sunday morning, Patrick was having low grade fevers. We went to church just to be able to take the Sacrament and see how long we could make it. We had a backup plan for our assignments at church.

And it wasn’t long before it was obvious Patrick didn’t feel well enough to sit quietly. So I took him to the foyer to let him move and I got on the phone with his doctor to see if we could come get more bloodwork done. And I pulled out a thermometer, and there was the number we had waited all morning for. 100.4 degrees farenheit. And official fever.

So, we made a bit of a scene leaving church, packed bags, and came to the hospital.

It took several hours to restart Patrick’s antibiotics. 8 for the one I thought he needed most, which just about made me crazy waiting for as he got feeling sicker and sicker. But as soon as they were given (along with a Priesthood blessing), Patrick started to feel a little better. We even slept through that first night.

All seemed to be going smoothly by the end of the 2nd day. I was a rockstar advocate mommy and got Patrick therapy, a picture schedule, integrative medicine & aromatherapy, and even talked to the palliative care team about signing him up for their services. I even managed to get his GI, surgeon, and a radiologist to have a care conference to discuss replacing Patrick’s positional line. They came back in favor of a change and suggested a plan of action to decide if and how to proceed.

And then, at 4 p.m., we came back to the room to draw cultures and start his antibiotics and his line wouldn’t draw. Or flush.

We ordered TPA and we worked it, and we worked it… and, well, after 4 hours of effort, he was exhausted, I was heartsick, and the line was still not working. And the plan from the care conference was upgraded from a hypothetical, optional plan to a necessity.

I did not sleep as well last night. (And not just because the nurse was slow about keeping the pumps from alarming and banged the door.)

Today we put the plan into action. Patrick went to radiology for a sedated ultrasound of the veins in his upper body. The order was for light sedation.

We learned today that Patrick is very capable of fighting light sedation. Made him silly and sleepy, but he was still perfectly able to fight the test. Moderate sedation didn’t fix things either. In fact, with sedation all of his inhibition control was gone and none of my usual distraction tricks were even an option. The ultrasound was wiggly, to say the least.. but the technician was patient and kept trying to get the information the doctors wanted.

Listening to her review her images with the radiologist, though, made my heartsick. As usual, Patrick’s right side vessels are fairly scarred. (Though perhaps a little better looking than the last I’d known.) But, they worked enough to give a better answer about the left side than before. Instead of just saying “Inconclusive”, what they said was that the left subclavian vein (the one in his shoulder) has lots of little collateral vessels around it too and shows evidence of being swollen at least, if not scarred, and also probably has a clot in it.

I asked the radiologist if that would explain the tricky behavior of this line for the past year and he said absolutely, that the vessel may have been pressing on the line. He also said that changing out the line over a wire was a risky move, given the clot in the line. But that I’d need to discuss that plan with our surgeons.

Other vessels were open, but most of them looked to have some kind of narrowing.

The rest of the afternoon was a little crazy. I got permission to change out Patrick’s button while he was still sedated and that went quickly and smoothly and he doesn’t seem to understand it even happened. That’s what we hoped for.

And that meant that Brian came up for the ultrasound and stayed the afternoon.

But it was a rough afternoon. Patrick didn’t sleep under sedation and he didn’t sleep after, either. He fought REALLY hard all afternoon to stay awake. We could tell when it started to wear off because he finally stopped fighting.

But because of low heart rates, he still had to stay in bed till 5:30. We got out for a short walk, but when we came back for TPN at 6, and I asked the nurse if all was done so we could leave, she told me no. She didn’t want to use the automatic settings to taper Patrick’s TPN levels up (to protect his blood sugar levels)… and so, we couldn’t leave the room.

The idea of making Patrick stay any longer in the room with the same old toys and bed and short IV tubing kind of broke my heart. So I had a very short little cry about it. Then I went and helped myself to several fitted sheets and used the extra safety pins around the room to build us a fort.

That tided us over for the rest of the evening.

Tomorrow will not be an easier day. As of tonight, they plan to take Patrick to surgery tomorrow. The surgeon will probably attempt first to put a line back into the same vein. That means that he’ll put a wire into the catheter, remove the old line leaving the wire, and then use the wire to guide a new line in.

That is the best case scenario.

The worst case scenario is that that won’t work. In that case, they want to repeat a venogram.. which is a contrast study of the Patrick’s veins. And they will use that to pick a new vein to put a line into.

It is entirely possible that the surgeon will come in in the morning and decide that he wants to have that done before Patrick goes to the OR. And then we’ll just do that tomorrow and the surgery the next day.

And the worst of worse case scenario is that the wire over doesn’t work, none of the other vessels are still wide enough to get a central line into, and then we’ll start discussing desperate measure that I don’t really want to get into in a blog post unless they happen.

Needless to say, this is scary. I am still terrified of the idea of Patrick no longer having veins to give nutrition through. I do not want to imagine that happening.

We are not to that point yet. There are veins in other places in the body that can be used. But there is still a lot of pressure to make one of these sites work because in order to have a transplant, Patrick has a have a central line in his upper body.

I’m scared and I’m sad.. and I’m really, really lonely for some reason this stay. But I’m calm. We have been praying and fasting about this line for a while now. I can’t help but think that this is an answer to those prayers.

So, if you’re the praying type, please join us in praying for the surgeon and his team and the radiologists tomorrow. We’d love to save this access site. We’d love to get another year and a half or more out of another. And I have this faint little hope that maybe the next line won’t scare me every time someone else flushes it, (and sometimes when I do, too.)

Adoption memories

We had Patrick’s g-tube study done. (Great results! Nothing wrong. Just a slightly upward angle that makes positioning the tube tricky.) As part of the history, they asked when the gastrostomy (g-tube hole) was created and I realized last night that I could have answered “exactly two years ago.”

Why do I remember that? Well, because exactly two years ago yesterday, the court officially named us as Patrick’s legal guardians. It was the best birthday present I’ve ever gotten.

A friend of mine has been doing something special this month on her blog. Because it’s national adoption awareness month, she’s been posting daily adoption related posts. She invited me to be a guest blogger and, by coincidence, will be running my post today… a very significant 2 year adoption anniversary for us.

So, I thought I’d share with you what I wrote for her. Here goes:

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Ours is not a typical adoption story, because Patrick is not a typical little boy. His life was meant to be something different, something miraculous, and so it required that it start in a very different and miraculous way.

But my part of the story starts the way a lot of others do. We wanted to have children. When that didn’t happen easily, we involved doctors. For years, we went through the ups and downs of charting and temperature taking, tests and medications. Finally, after several years and a minor surgery, our doctor sat us down for “the talk.” He explained that there were several causes of my infertility. The cards were, essentially, stacked against us. He still felt it very possible that we could have children, but only with major medical intervention. We had some big choices to make.

We talked about it and we prayed about it. And then, that Sunday, as we sat in church, we received a clear answer that it was time for us to stop medical treatments. Our child would come to us through adoption.

With a path finally before us, we moved forward quickly. I’ve never felt so driven to do anything before in my life. In under a month, we completed the application process, training classes, and were mostly done with our home study.

During our home visit, we had a conversation with our case worker that would play a major part in bringing Patrick into our family. She’d looked at our “preferences checklist” and noted that we seemed more open than most to adopting a child with special needs. We explained that we felt that adoption was a faith process. We believe that Heavenly Father puts families together. We knew we’d never turn away a child born to us with medical problems. So, if God was in charge of adoptions, too, then why would we limit His options? We knew Heavenly Father would help us find our child and that, if the child really belonged in our family, race and health wouldn’t stand in the way.

We decided to adopt in June. Our application was approved in September and we hunkered down for a nice long wait. We figured two years, at the least, was the average we’d heard. And still, by the end of October it felt like far too long. My heart ached for a child it knew was missing.

Then, on a very snowy morning the first week of November, my phone rang. It was my case worker. She started out by saying, “There was a little boy born on Halloween in Michigan.” My heart skipped a beat. I grabbed a pen and a piece of paper and started scribbling notes. She told me he was Korean. And then, she went on to tell me that he’d had a birth defect. His intestines had developed on the outside of his abdomen. The doctors were saying he had a life expectancy of 1 to 2 years. They needed to find an adoptive home quickly because doctors wanted to discharge him from the hospital. All she could tell me about his family that his birth mother wanted him to be able to go to the temple to be sealed to a family.

She said she’d send an e-mail with more information and a picture. She encouraged me to talk to Brian and decide if we’d like to be among those families considered to adopt this little boy, and then to call her and let her know.

As soon as I gathered myself, I called Brian. But he wasn’t at his desk. Meanwhile, two e-mails arrived. One was a short paragraph from the baby’s caseworker in Michigan explaining his medical needs and the unconventional and hurried search for parents. In the other were two photographs of a sweet little Korean boy with great big eyes and an IV in his head.

Since Brian wasn’t at his desk, I called the insurance company to find out if this we even had coverage to pay for this kind of medical problem.

That’s how Brian first found out about the offer. While I was on hold with the insurance company, he called back on my cell phone, so he heard me finish the conversation about “preexisting conditions” and “adoption”.

I gave Brian the information and, after a quick moment of thought, he said he’d come right home.

We had a prayer together, then went to the temple – the perfect setting to make decisions about life and death and eternity.

I knew that families are eternal. I knew that mortality is not the end of life. And yet, I was filled with grief. It was as if I’d just been told I was carrying a child with a terminal illness, but he wasn’t even mine yet. And I was scared. I didn’t know if I was ready to leave the life I knew then.. abandon it all, and become mom to a child who would need so much help, and who had such an uncertain future.

Still, when Brian turned to me and said, “I think we should pursue this,” my heart leapt with joy.

So, we called our caseworker and gave her a list of questions we had. And then we went to visit our parents. We felt we should tell them about the offer, because we knew that whatever happened, we were never going to be the same. And we both wanted father’s blessings. We showed them the little boy with the angel eyes and explained that we didn’t know if he was ours.. But from that moment, all of our families were praying for a little boy whom the e-mail called “Patrick.”

That was Wednesday. Thursday, I sent a copy of our profile. Friday afternoon, as I on my lunch break with Brian, our case worker called my cell phone. The birth family had seen our profile and had chosen us to adopt their baby.

Now, we had a choice to make. Because we’d been selected, we could finally start filling in the gaps in the medical information we were getting. And boy, where there gaps! We called the baby’s caseworker, who referred us to the hospital social worker. Finally, we decided we needed to talk to doctors, and we needed to do it face to face.

I called my mom and told her to take my credit card and buy airplane tickets. Then, I went back to work, explained what had happened, and asked for a leave of absence. After that, we went to the adoption agency where we signed pre-placement paperwork required for us see the baby in the hospital.

Friday night, we tried to get ready. We booked a long-term stay hotel room. We faxed legal documents to Michigan. We make a shopping list of nursery items. And we tried to pack.

I packed my bags that night not knowing what exactly I was packing for. We still didn’t know enough to say if we could take care of this baby. We didn’t know if or when he’d be discharged. We didn’t know how long it would take before we’d be given permission to leave the state again.

And yet, Saturday morning as I sat on a plane to Detroit, 10 rows ahead of my husband, I felt a quiet, happy calm. If nothing else, I knew it would be ok.

We met Patrick, his family, and his doctor Saturday night. It wasn’t what we expected. Due to unforeseen problems, things were tense at the hospital when we arrived. We felt like we knew nothing at all about his condition when we heard the doctor’s account. His case was much more severe than we’d understood, but the immediate prognosis was better.

At last, they led us to his room. My first impression was of how small he was. He was SO tiny! Just a little ball with wires and tubes attached. Without them, you’d have never guessed there was anything wrong.

They let me hold him while we talked. He felt so small and fragile.

I thought that the moment I met my baby, or the moment I held him, that I’d know he was mine. But that isn’t what happened for me. There were too many questions, still and I’d have to wait for that confirmation.

Sunday, we arranged to spend the day with Patrick. The nurses were so kind to let us change his diapers and help with other aspects of his care. I sat for hours singing him lullabies and watching monitors and letting him sleep.

When we arrived, the nurses warned us that he had a reputation as a very irritable little boy. There was even a sign on his door warning not to wake him. He was famous for screaming hysterically if his sleep was interrupted. But that’s not the baby I met. He was just a sweet, tiny little boy who wanted to be held.

I remember singing to him: “I am a child of God, and he has sent me here. Has given me an earthly home with parents kind and dear.” And my voice choked on the words because I knew that right at that moment, Patrick didn’t have that. I couldn’t imagine how any little boy could go through all he’d need to go through alone.

That night, as we looked at pictures from the day, I came across one that showed just his face with a white background. I knew, when I saw that picture, that I loved him.. and I wanted to keep him.

Monday morning, we held a “family conference.” It was a business day so we finally had been able to confirm that there were doctors to take care of him at our hospital at home. Our insurance confirmed that he’d be covered. Brian needed to hop on a plane to go back to work. (He was running a conference that week.) So, knowing we had the resources to provide for his physical needs, we asked Patrick if he’d like to be a part of our family. I swear, he looked up at Brian and smiled.

The case worker rushed to the hospital and by 1, we’d signed paperwork, and I was on my way to the airport with my husband. I was staying behind to start a whole new life.

The next few weeks in Michigan are among the sweetest of my life. With nothing else to do but hold my new baby and learn to care for him, I virtually lived in the NICU. My mom came for a week and shared with me in Patrick’s first feeding, first bath, and first time wearing real clothes. This time was also some of the hardest I’d experienced as I received a trial by fire as a mom of a child with major health problems. Patrick had his second surgery the day Brian flew back to be with us.

Two weeks after we signed papers, on my birthday, the birth parents appeared in court, and we were named as Patrick’s legal guardians. A week later, we had permission to bring him home. At 4 a.m. Thanksgiving day, Patrick and I arrived at Primary Children’s Hospital by air ambulance. He’d spend the next few weeks there as the doctors here got to know him and made arrangements for us to take care of him at home.

Because of his medical needs, the courts granted an early finalization of his adoption and we were able to take Patrick to the temple to be sealed as a forever family in February when he was just 4 months old.

Patrick just turned 2. He is an active, happy toddler who loves cars and music and Elmo. He is a living miracle! Patrick’s birth defect came with a rare complication. As a result, at birth he was missing over 95% of his small intestine. Without intestine, he doesn’t get nutrition by eating. In fact, eating large amounts puts him at risk for dehydration and bowel obstruction. Instead, he is entirely dependent on a form of IV nutrition called TPN. He has a permanent IV tunneled through his chest, into a vein in his chest or neck that runs to his heart.

The TPN leads to complications like infection and liver disease. In his short 2 years of life he has already struggled with both. Patrick’s doctors warned us before we adopted him that we’d become such regulars in the E.R. that we’d be on a first name basis with the staff. We soon found that to be true not just for the E.R. staff, but also the IV team, the infectious disease team, the PICU team, most of the residents, several of the medical students, and the entire gastroenterology department.

At 9 months old, as a result of infection, Patrick’s heart stopped. The fact that he is alive now is nothing short of a miracle. No doctor who hears his story and then meets him can help but confess that he has beaten the odds in countless ways.

Patrick will eventually need an intestinal transplant. He is already running out of places to put new IV’s and each new infection makes him a little more fragile.

Since they don’t do intestinal transplants where we live, we have chosen to have Patrick listed at Seattle Children’s Hospital. Patrick has been on the waiting list since April of 2009. He is status 1A and will have his transplant is soon as a donor match is found.

People try to tell us sometimes what a tremendous thing we did in adopting Patrick. We don’t really feel it’s something we can take credit for. As we told our caseworker when this all started, Heavenly Father puts families together. He knew Patrick needed us. And what’s more, He knew we needed Patrick.

Raising Patrick has taught us more about life than any other experience. We have learned to rely entirely on the Lord. We have learned to live each moment to it’s fullest. We have learned to lean on one another when things are hard and we to trust in hands of friends and strangers when we felt too weak to stand on our own. And we have learned to love like we didn’t know it was possible to love.

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.

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.

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.

An excellent Seattle trip

Patrick had his quarterly appointment at Seattle Children’s on Thursday. And it was a very good trip in every way.

Because Patrick’s morning med schedule is so complicated right now, I opted to fly out on Wednesday afternoon. Our flight left at about 2 p.m. As usual, it took some effort to get through security and I probably looked insane hauling Patrick, his duffel sized diaper bag, two suitcases, a carseat, and of course, him in his stroller around the airport. But we made the flight without incident. In fact, we landed early and had time to visit and exchange blogs with a very nice woman from the same flight while we waited for our ride.

We stayed with my friend Lindy, her husband Kelly, and her little girl, Lauren. Lauren is 4 months younger than Patrick. They have always gotten along really well and it was fun to let the two of them play. Most of the play consisted of stealing each other’s toys and pacifiers.. but they did spend some time dancing to YouTube videos and there was more than one hug exchanged.

Patrick and Lindy

Thursday were the appointments. It was kind of strange to actually be seen in clinic. This is the first time since Patrick’s evaluation a year ago that we’ve done this visit in clinic instead of inpatient.

They did the usual set of vitals: weight, length, blood pressure. As we finished, another little boy about Patrick’s size came in to be weighed. He had a Broviac line and TPN in a backpack, too. I think this is the first time that I’ve ever met another kid on home TPN. It was kind of strange for me to see.

Our first visit was with Patrick’s dietician. She walked in and her first words were, “This weight looks spectacular! I had to come see if it could be correct!” She remembered meeting a tiny, frail, jaundiced baby last year. To be met by a happy, chunky, energetic (almost to a fault) toddler was a surprise.

She looked at Patrick’s TPN, his labs, and his growth charts. We talked about his current diet and in the end, she said that she was nothing but pleased with what she was seeing. She even said that it’s time to back off a bit on his feeds so that we don’t make him overweight.

It’s been recommended recently by some doctors to try continuous feeds again so I asked her her opinion of it. She told me that it’s pretty common for kids with anatomy similar to Patrick’s to stop continuous feeds after this long. She said that focusing on oral feeding so that Patrick would have an easier time learning to eat after his transplant was her preferred goal.

She also explained that some kids who’ve had problems with hypoglycemia when tiny can outgrow the problem and tolerate breaks from TPN. She watched Patrick attempt a few head dives off the bench we were sitting on and said that she thought it might be good for him to have some untethered time. This is something I’ll discuss more in depth with Patrick’s GI and dietician here. We’ve always been a bit nervous, considering his history.

Looking at books in the waiting room

Next, Patrick’s transplant nurse came in and took copies of his labs and other medical history that I’d brought with me. Then Dr. Reyes, the transplant surgeon joined us.

Again, he was excited to see how much Patrick has grown. He asked me how well he was eating and pooping since his ostomy was taken down. I explained to him all the questions that had been raised last month about whether or not Patrick had an obstruction that needed to be fixed. Then I told him that some of the doctors wondered if he needed another surgery to try to correct the problem.

Dr. Reyes’ reaction was quite direct. He said “No. We’ll get him a transplant. That will fix the problem.” He didn’t think it was a good idea to mess with things when Patrick is otherwise stable and healthy… especially if that reduces the remaining pieces of intestine.

I asked how Patrick’s reaching 10 kilos in weight would affect his candidacy for a transplant. Dr. Reyes said that that was a really big deal for him. This size changes the rules a bit for what he needs in a donor. Before, we’d been told the donor needed to be the same size as him, preferably smaller. Now that he’s bigger, they can reduce the size of a larger donor, too. His donor could be up to 6 or even 8 years old. The result is that his chances of finding a match go up.

So I had to ask if they could estimate a wait time. The answer, for all who are wondering, is still no. Dr. Reyes was careful to explain to me that Patrick’s B positive blood type is a mixed blessing. It means that there will be fewer matches. However, it also means that there are fewer waiting children with his blood type, which means his priority is higher, even while he’s healthy. Dr. Reyes just kept saying “We’ll get this transplant done.”

Next we talked about liver health. Patrick’s biopsy in September showed some early scarring of his liver. However, doctors responded quickly with a low-lipid diet and for the past several months his bilirubin and liver enzymes and other measurable signs show that his liver is relatively healthy. The clarity of his eyes and skin are also proof of this fact.

I told Dr. Reyes that we’ve been worried that Patrick’s spleen reacts so severely to infection. He admitted that the scarring in the liver was probably contributing to problems with the spleen. Recurring infections don’t help either. However, he said that a large spleen wasn’t as much of a worry if the liver isn’t also large.

Transplants are scary in a patient with a failing liver because as the liver fails, the body stops clotting as well. Dr. Reyes said he’s not worried about that at all with Patrick. He feels safe doing the surgery. Then he said that if you fix the problems with the intestines, the liver can heal, and the spleen will get better. And he told me again, “We’ll get him transplanted.”

I asked one last question. Should we be keeping our bags packed? The answer was a resounding “Yes”. I really need to wrap my mind around that and get things in order so we’ll be ready to go quickly. The regular trips to Seattle and to the hospital here keep me practiced in packing and packing quickly – but still, it would be good to feel in some way prepared.

The mood of Patrick’s appointments was almost celebratory. His good health, his weight gain, and just the fact that we made it to a clinic visit without being admitted were all worthy of celebration.

We’ll go back again in July.

Roughousing with Lindy

The rest of the trip was pretty laid back. Lindy, who was kind enough to drive us half an hour to the appointments and then wait two hours for them to be done, took us back to her house. Patrick and Lauren crashed early. I was amazed that Patrick put himself to sleep there on just the second night.

And then, after a pretty amazing feat of getting three babies (Lindy was babysitting a 4 month old that day) into the car and off to the airport on time to catch our flight home… including all of Patrick’s medical care.. was impressive. Not the smoothest, but we accomplished it.

We got home Friday afternoon exhausted. Patrick and I both went to bed early. We all slept in. And today has been spent mostly in recovering from a pretty intense week.

I can’t really complain, though. It may be exhausting to chase after a one-year-old who crawls around the house emptying drawers and making monster noises… especially when I am the only thing standing between him and many broken lines. But I wouldn’t want to trade having him happy and wiggly and full of life – and best yet, at home – for anything in the world.

Results of today’s tests and surgery

Today’s been a pretty busy day. Patrick went at 9:30 to have an upper GI study today. They put a contrast solution into his stomach through his G-tube and then watched it move through his intestines. He’s had this test done a couple of times and the results are always quite interesting to see. As we knew, Patrick’s small intestine was quite fat and stretched out and his large intestine was pretty narrow, though not as narrow as I remember it being last September.

At the end of the study, the radiologist compared today’s images to the ones taken in September. Her result: “No significant change”. Yup, that’s right folks.. all that worry revealed that they officially discovered that Patrick’s anatomy is just as we expected it would be 6 months after his reconnection.

They are still wondering if this odd anatomy is to blame for some of the recent infections. (Bacteria or yeast from the gut leaking into the bloodstream through thin walls).. but are going to watch for a while to see rather than taking immediate action.

So – this afternoon Patrick had a new central line placed. This one has two lumens, meaning there are two tubes so you can put incompatible things in at the same time without them mixing like antifungals and TPN. We’ll be starting a new therapy hopefully tomorrow, too, where we fill the unused lumen with a solution that helps kill bacteria and fungus.

We’re still waiting for a plan to move forward from here. For some reason, even though little has changed anatomically, they’re acting as though something major was still wrong and therefore trying to make changes to diet, etc. I’m having to go all out working as Patrick’s advocate right now.. fighting for people to think things through and decide what’s best for Patrick based on himself, not on general rules and practices.

It’s exhausting work, so since he’s sleeping, I think I will too. Hopefully it’s a calm, restful night and I’ll be ready to get up and start pushing for a discharge plan tomorrow.

Worth the wait

Last week was one of the harder hospital stays we’ve had, and I think it’s because there was so much waiting for answers to scary questions… and while we waiting Patrick didn’t feel all that sick and couldn’t figure out why his boundaries were suddenly so much smaller. Had he not discovered opening and closing cabinet doors as a way to spend his time, I think I’d have been a goner.

After 3 days, the lab tests showed that the infection was, in fact, the same infection Patrick had back in January. This type of bacteria can sometimes live in the plastic of a central line. The doctors theorize that the reason Patrick only sometimes had low fevers and only sometimes acted sick was that the infection was living in the line and only sometimes making its way into his bloodstream.

The best way to make sure Patrick got better was to take out his central line. So – Thursday afternoon they took Patrick to do an ultrasound of his veins to see where a new line could be placed. Friday morning they explained a plan to me that involved removing his broviac line and putting in a temporary PICC line instead. (Please see previous blogs for descriptions of the differences between these lines). After 3 days, they’d take out the PICC line and put in a new broviac line instead.

I explained again that we’d been told that Patrick couldn’t have PICC lines because of the collateral vessels in his shoulders. But – it was better to try than to plan for peripheral IV’s in his hands and feet for 3 days.. So we went ahead.

Both the broviac removal and the PICC placement are sedated procedures and it took some talking to convince them that they could be done at the same time – but, despite a full-to-overflowing hospital, they made it happen.

We got ready by putting an IV in his hand where contrast could be injected and an NG tube down his nose to drain his stomach and make sure he didn’t vomit and aspirate again. This took over an hour to do. Patrick has learned to block tubes with his tongue as they try to pass them down his throat. It took several tries and a very crafty charge nurse to finally get it all done. With music therapy there to try to help calm him down, the room seemed a bit like chaos. In the end, Patrick was exhausted and furious. I took this picture as I tried to calm him down right before he fell asleep from total exhaustion.

Late afternoon on Friday, they took Patrick to Special Procedures where they use a technique called fluoroscope to view the blood vessels to view the blood vessels as they work.

The anesthesiologist gave Patrick a dose of Versed and let me hold him as it put him to sleep. This was a first for me, and interesting to see his reaction. First he got all giggly. They he took my face in both hands and gave me a big sloppy kiss on the mouth. They he went kind of limp and I put him on the procedure table and left as he was drifting off to sleep.

Less than an hour later, they called. They explained that he did indeed have collateral vessels that made a PICC line impossible. However, they’d put in a deep peripheral IV that would better survive the 3 day wait.

Picking Patrick up, I learned that Versed does two things to Patrick. It makes him loud, and it makes him fearless. He spent the entire ride to his room and then at least an hour afterwards yelling “Hi!” at the top of his lungs to every person who passed by.. including the ones all the way out in the hall where they couldn’t see him. He also took to jumping and climbing and bonking his head into things. (He still has a bruise between his eyes from this game).

Soon he got tired and went to sleep. And we went back to waiting. Surgery requires a 3 day wait before they can put in a new broviac line whenever one is pulled for infection. In the meantime, the sugar in Patrick’s TPN had to be reduced to prevent damage to the peripheral vein. This meant he didn’t feel quite as well. He also kept the IV in his hand because we don’t dare take out any working IV, for fear we won’t get one later when he needs it.

Patrick didn’t want to slow down, though. Within a day he’d figured out how to still crawl with a splint on his hand.. he was determined to stand at the side of his crib.. and he taught himself to sit up to make sure that no one else would be able to get away with trapping him by laying him down. It was an exhausting 3 days because he was extra motivated to stay active, despite his new restraints.

Finally, Monday rolled around and Patrick was eligible for surgery again. We waited all day, and finally Patrick’s doctor told the nurse to call and see what was taking so long. We found that his name had been accidentally left off the schedule. They added him at 4 and around 6:30 took him down to surgery.

While we waited for the anesthesiologist to come, Patrick was his usual bundle of energy. He discovered a pretty big blue button on the wall that he pushed. He was thrilled by the alarm that sounded and how quickly people made it to the room. Yes, he found and pushed the “Code Blue” button that is used to call emergency help when a patient stops breathing or worse. I caught on and cancelled the alarm as the anesthesiologist got to the room. He only got to the button once more as we talked, which just got a big grin from the doctor.

The pre-surgery talk with this doctor scared me. He explained that there were big risks in intubating when Patrick had RSV. He also explained that the surgery might take a long time, as they didn’t know for sure how hard it would be to get a line.

Again, they gave Patrick a dose of Versed and I kissed him as he drifted off then went to the waiting room – a nervous wreck. Howie joined me about 15 minutes later, and after another 15 minutes the surgeon appeared and explained that they’d easily gotten a line in.

When I got to the recovery room, Patrick was trying his best to sit up while everyone else tried to keep him laying down. An hour later, though, in the room, he was up and full of energy. Again, he was fearless. His nurse kept calling him “wild” as he would quickly try to escape guarding hands to stand and jump, etc. Fortunately, by 10 he wore himself out completely and other than being woken by vitals, slept through the night.

Tuesday morning, we were finally able to go home. We arrived home almost exactly 7 days after we were admitted to the hospital.

When you’re confined in a little hospital room, you don’t necessarily notice all the learning your child has done. Patrick is now able to sit himself up and just needs a little more practice to master crawling on hands and knees. He’s playing peek-a-boo and other interactive games. He is a HANDFUL and it seems as though it came overnight.

He was so happy to be home with space, though, and so was I! It’s so much easier to contain a tornado if it has a little bit of space to bounce around in. We’ve had to adapt some, though, to adjust to his new skills. It’s no longer safe to use the changing table.

Patrick did manage to break his line his first morning home, so we spent yesterday morning up at the hospital getting it repaired. (Big thanks are owed to the GI staff who managed this in their clinic and saved us a trip to a very overworked ER). Between that adventure and his daily appointments this week, I was quickly reminded that, even at home, keeping up with Patrick and his needs is plenty of work.

We did see his pediatrician yesterday and she was all grins as she handed me a growth chart that showed Patrick’s weight in the 5th percentile! He’s always been well under the lines on the growth chart. We’ve never even talked percentiles.

I don’t know how we’ve been so blessed that, even with infections, he’s been really very healthy for so long. But we are grateful as we take each day at a time. Some days are harder than others, but at least this week, the outcome is worth the wait.