Tag Archives: being an advocate

Transplant Day 26 and Atelectasis

Atelectasis: the collapse of part or (much less commonly) all of the lung.

Last night was one of the hardest we’ve had here. Patrick’s fever reached 104. And he was really struggling to breathe. Anytime he’d lay down, his oxygen saturation dropped. Anytime he sat up, he coughed violently. Finally, at 1 a.m. his nurse put him on oxygen and as long as we slept with the bed up and me helping to support him sitting up as he slept, he was able to rest.

At 5:45 a.m. radiology came to take a chest x-ray. It showed that Patrick’s pleural effusion had about doubled in size. It also showed that both lungs had “atelectasis.” In other words, his lungs were partially collapsed because of pressure.

When the team came around, they said that he needed them to help get the fluid out. If the fluid was from a pneumonia or infection, they could culture it and give the right antibiotics. If not, then they could from there start looking for other explanations for his fevers. The effusion itself can cause fever.

But he’d need sedation and that meant he’d need to have his feeds shut off for 6 hours. And that meant the earliest time would be evening.

Getting him up was rough, but once he was up, he seemed to do better. To help with the lung collapse, we played games that made him take deep breaths. We used birthday blowers to knock down towers of cups. We blew bubbles. We played with whistles. This kept him doing as good as possible, but as the day wore on, he needed more and more oxygen. I just tried to keep him happy sitting up, playing games, coloring.

His new homebound school teacher Mr. Chambers. came this afternoon. Patrick was dead tired and had figured out that sign language was easier than talking. So, this isn’t exactly how I figured Patrick’s first day of school in Omaha would look. But – it was the first step and that’s what matters. We’ll have an IEP written by the end of the week and dive in with 3 one-hour school sessions a week. Mr Chambers is very nice and very compassionate, too.

Also, Home Health came to deliver Patrick’s enteral feeding pump, get signatures, and give us any training we needed. We’ve used this pump before, but it’s been a long time and we weren’t using it all the time before.. So I figured a refresher course was in order. This pump is tiny and lightweight and Patrick will have no trouble at all moving and playing while wearing it in a backpack. It’s purpose is to do a drip feed of formula into his stomach all day long until he is able to eat enough calories on his own.

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At this point in my blogging, from yesterday got interrupted. It is now Wednesday morning and I’m going to fill you in on the rest of what happened last night.

About 4 p.m. yesterday, we heard from Patrick’s nurse than Interventional Radiology’s schedule was full and they were putting Patrick onto his schedule for 10:30 a.m. today. Thank goodness for our awesome nurse Debb who was worried about Patrick’s continual decline. She made a lot of noise and I think is part of why things are better right now instead of just starting right now.

A little later in the afternoon, the nurse practitioner came to check in on Patrick before going home and tell us the plan to wait till morning. We said, “What if things keep getting worse overnight?” She answered that if there were an acute emergency, they’d take him down sooner. So Brian asked what constituted an acute emergency. The answer: Needing 2-3 liters of oxygen. So we pointed out that he was already on 2 liters of oxygen and desatting when he tried to sleep. She countered, “but at least he’s resting comfortably.” And I said, “No.. he’s so uncomfortable he’s been lying there trying to sleep and is resting because he’s exhausted from the effort.” She left the room rather quickly at that point. Half an hour she came back to say that they were working on setting up the procedure as soon as possible.

That was at 6 p.m. They took him down at 8 p.m. Because things were happening quickly, we got to give the same general history a few times to a few different residents. But eventually, the anesthesiologist came over to explain that, with his lungs already stressed, they thought it safest to intubate him for the procedure.

And then we kissed him goodbye and they said it was a quick procedure and we’d see him soon.

The procedure actually was pretty quick. With general anesthesia, an hour and a half is really fast… and that’s about how long it took for the doctor who performed the procedure to come tell us that things had gone well. They removed about 250 cc’s (or a quarter of a liter) of milky white fluid from the sac around his lung. That doesn’t sound like a ton, until you imagine Patrick’s tiny body carrying around 8 ounces of liquid in his lung. Then it sounds like a lot. They let us see the x-rays last night. His right lung had been entirely collapsed.

She said they’d call us back soon. But then we just waited. And waited. And we finished our show. And I started a blog. And then a chaplain came looking for someone to visit. And it before we knew it an hour had passed.

(A side story about the chaplain. After visiting for a while, she asked if she could pray with us. She said the prayer and closed “In Jesus’ name.” Then after saying “Amen” she blushed and said, “I didn’t think to ask if you were Mormon.” We said that yes, we are. Then she tried to apologize for praying in Jesus’ name. So we had a minute to stop and explain that we do, in fact believe in Christ and pray in His name and that her prayer perfectly fit our method of praying… And then that’s when the doctor came.)

Back to the story – the interventional radiologist came back to tell us that they weren’t having success taking out Patrick’s breathing tube. His lungs were too weak and needed extra time to recover before they’d work properly. He was making significant progress and she was sure he’d be ok before long. But, to be safe and give him time to recover,  she told us they’d keep him intubated till morning.

We were joined by a nurse manager who explained that in the hurry to get Patrick into the ICU, they’d put him into an adult room but that they were moving him to a pediatric room in under an hour and that they’d like us to wait till then to come back. We started to say, “OK. That gives us time to go clean up and move his things,” when we looked up to see one of the techs from the pediatric floor coming with a cart of things from Patrick’s room.

This kind of the last straw.. The idea that they couldn’t even wait for us to have time to get an update from his doctors before they were packing up and moving out his things. While we cleaned up, there was someone from housekeeping waiting because he’d been called to come clean the room and hospital policy requires that they respond within 5 minutes of the page. We don’t mind so much that they tried to help clean up and move the things… as the fact that he wasn’t even settled in the PICU before they had done it.

On our way out the door with the mountain of things that Patrick has accumulated during our stay, the nurse manager from the PICU came to find us to tell us that they had extubated Patrick. Ok, THIS was the straw that broke the camel’s back. Patrick was awake and we were downstairs cleaning his room and unable to go be by his side. She might have said something about “this is just how things go.” And we might have given her an earful about compassion. We are a little less angry this morning. But it’s going to be hard to bring ourselves to try to make Patrick’s next room feel homey again because it caused such a problem when he needed to move.

Anyway – with the fluid off of his lungs Patrick has been doing much better. He his heart rate is down, meaning his pain is going away. He is weaning off of oxygen. He is catching up on his very much needed sleep.  His fevers are gone. His lungs are a little bit crackly, but that will probably get better once he wakes up and starts moving and breathing again.

They are still waiting for lab results about the fluid that was drained. However, right now the working theory is that he had developed a chylothorax. “A chylothorax is a type of pleural effusion. It results from lymphatic fluid (chyle) accumulating in the pleural cavity due to either disruption or obstruction of the thoracic duct.”

I asked the team to teach me this morning what it means. What it means is this… Patrick’s transplant required cutting his lymphatic system. While it heals, it might become “leaky.” When they switched him to Elecare instead of Vivonex formula, they changed the type of fatty acid he was getting. And those fatty acids go through the lymphatic system and if the system is leaking, the fats can get trapped in places like the lungs.

Most transplant kids go through this. Patrick just got it worse than others because they switched his formula over so early.

They’ll go back to Vivonex formula. They will restart feeds slowly. They’ll watch closely to see if the problem comes back. And we’ll go from there.

It means more time in the hospital for him. But, hopefully before long they’ll get him back out of the PICU and onto the pediatric floor.

Another IEP meeting behind us.

I feel like a huge weight has been taken off of my chest. Although we have always been very blessed with a caring and cooperative IEP time, hammering out an IEP that meets Patrick’s many needs is no small feat. And this year, with everyone on the IEP team, except the classroom teacher, being brand new to us, I was especially worried.

So I got dressed in my best “I’m competent” clothes, a change from my usual “I’m a special needs mom and you’re lucky I am dressed” wardrobe. I even put on makeup and did my hair. I packed a bag of toys for Patrick and brought along a stack of supporting documents for me. I stopped at the store and picked up some new puzzles for Patrick, even. Then went to Dunkin’ Donuts for goodies since the meeting was at lunch time and I wondered how at least the classroom teacher was going to manage to eat.

Then, as I was sitting waiting for Brian to meet me, I noticed that I’d mixed up my brand new jeans with an old pair of jeans with a hole in the crotch that I’d worn gardening last week. And I crossed my legs and shook it off because I couldn’t let that throw me today.

It seemed like this year’s IEP was all the more important than years past. Before, we were just making goals to help move forward his academic and developmental progress. This time we were dealing with new and worsening behavior problems as Patrick has become aware of his limitations. He wants with all his heart to fit in and make friends, and he just doesn’t have the skills and savvy to do it right. And so he’s taken to hitting, kicking, and pulling hair when he feels frustrated instead.

I had a feeling stress was building. But, I’ll be honest, I’ve been surprised and quite devastated that things got this hard this fast.

As the school year ended last year, I knew that impulsivity was getting to be more of a problem the more Patrick could do things for himself, but still couldn’t be independent. I asked his neurologist for help and he referred me to an amazing program designed to help children with developmental delays and behavioral issues.

But when I started down that path, insurance informed me that the program was through a non-contracted provider. They are a non-profit and we could maybe have made things work, but it was going to cost us more out of pocket than I expected. And, to make matters worse, their wait list was months long… all summer long in fact… just to get an evaluation.

My sweet insurance case manager felt so bad delivering this news that within a day, she’d called around and found a neuropsychologist who they contracted with who could squeeze Patrick in for some developmental testing. I had to fill out a mountain of paperwork. The questionnaire was over 50 pages long. Plus provide a medical/developmental history. (Another 50 pages at least). Then, Brian and I went in for an interview where we talked about all of the things that concerned us about Patrick’s development and behavior. Then it was Patrick’s turn. 4 hours of alternating standardized testing and play therapy and observation. In the end, we got a 25 page write up describing our child. His strengths. His weaknesses. His learning style.

In the end, Patrick was diagnosed as having many physical and cognitive delays stemming from his brain injury. (No surprise there.) And with ADHD. (Also no surprise, though really nice to give it a name we can work with.) The evaluation also included testing for autism and the doctor and Patrick’s therapists and I had a long drawn out series of conversations in which we discussed the way that Patrick’s brain injury sometimes makes him act like he is autistic (sensory processing disorder, social difficulty, quirky little obsessions).. but in the end decided that that diagnosis would only cloud and confuse things for him as it doesn’t exactly fit.

Armed with new diagnoses and 25 pages about how to help Patrick learn (with very specific examples of areas to teach him in), we supposedly had all the makings of a rockstar IEP.

Hence my anxiety over the past month in trying to get things just right. I’ve been e-mailing and talking to Patrick’s new special education teacher (this is an extra teacher who works with him in a regular classroom). I have felt like the super duper stubborn bad guy with my list of unreasonable demands. I really wondered if they were starting to hate me.

But today’s meeting was yet another IEP success. I feel like Patrick’s got a group of very astute and caring team of people working with him. And, in the end, they found a way to give Patrick just about everything we were asking for for him. In fact, a little bit more, even. Like a motor aid to help him in PE. And picture schedule cards for each type of activity in the class. And a more supportive chair for work table time. The occupational therapist offered to work with him on a sensory diet (meaning physical activities to meet his sensory needs throughout the day), which is virtually unheard of in IEP’s in Utah. And the speech therapist offered to build Patrick social stories with him as the main character on her iPad. And, as icing on the cake, they have a written behavioral plan in place for Patrick and are calling in a psychologist to consult and help Patrick learn to control his temper in class.

Of course, the trick now is finding practical ways to make it all work together.. But it is such a relief to feel like we’ve got our feet pointed in the right direction again.

And a big relief to be done with a crazy month of trying to see all the doctors and all the therapists and gather recommendations and write firm but kind “parent advocate” style e-mails that say what they need to, but then have to be trimmed down because, face it, I’m verbose. It will be a relief to be done rehearsing arguments about the IEP in my head all the time.

At least till next fall. Or maybe spring. Or maybe earlier, if things aren’t going quite as they should.