Here it is, 10:19pm on Friday and I’m so tired. Sarah is almost asleep and this is the earliest I’ve had a chance to go to bed. But, some big things happened today and I need to tell you. I was pretending to be a cheerleader doing a cheer and I knocked her water over. It hit the floor just right and water went flying across the room. What a mess, but it really didn’t matter because she had such a good day! We redid her schedule to lighten it up and take a little pressure off, but it ended up just packed. She was so weary tonight.
She met with her doctors several times, behavioral health, music therapy, occupational therapy, child life, had several glucose tests, questioned her feeding schedule, had her drain tube pulled, took two hefty walks, sat in a chair most of the day, sent a couple of texts and was amazed at herself for pushing further than she thought she could. All the while I sat in awe of what I was seeing.
It seems her PLE symptoms are settling down just a bit. Her protein levels are higher. Her magnesium, calcium and potassium is all higher. Her kidneys are working a little better but have quite a ways to go. She smiled more today so much so it began hurting her steroid swollen cheeks.
After consulting with the surgeons, her transplant cardiologist felt her last remaining drain tube should come out. The collection bulb at the end of the tube looks like a grenade and that what I call it. “Better empty that thing or it’s going to blow”. It just hangs and bounces off her leg when she walks. This morning she got up to go to the bathroom forgetting about it. It was stuck under the blanket and when she stood up it pulled on the tube site on her belly. It must of hurt. The concern is that the potential for becoming infected by leaving it in is greater than the remaining fluid build up. So there is the physical reason for pulling it but there is also the psychological reason. She doesn’t have to worry about carrying it around or having it pull on her when it’s full. There is a real awareness of being free.
Pre-transplant she had PLE related fluid build up in her belly and legs. We are hoping that clears up as time goes on but it is still happening now. Some of the fluid will drain for a while from the incision where the drain tube was. As that hole heals she may get uncomfortable as her body gets used to the fluid build up again. If it becomes too much for her they will tap the fluid out when she’s under for her heart cath next week.
Several of her supplement meds are being reduced as she is doing better. The weaning of the oxycodone finished today and so far so good. Her albumin (protein) infusions are being cut it half as well. When her PLE flairs up her intestines swell and essential proteins and nutrients are sloughed. With her numbers up the docs are seeing if she can hold her own.
Wednesday morning her oxygen was set at 4 liters per hour and when it was turned down the oxygen saturation in her blood would drop to the mid 80s. She was doing better that night so it was turned down to 3. Yesterday she was satting in the high 90s so we turned it down to 2 and she stayed in the low 90s. This morning she asked to have it turned down again to 1.5 and tonight she was staying in the mid 90s. This is a big deal. It’s like a wind tunnel in your nose and this progress gave her relief and again was a mental signal to her things are getting better.
Julie came this afternoon and we were able to play a partial game of Skip-Bo. It was nice being together. I was nicer to watch Julie be amazed at how different things are from when she left last Monday. Unbelievable progress. Here’s her thoughts…

This is so amazing. Sarah truly is a new girl. She has changed so much since I left her last Monday. I saw her take off on our walk tonight at a pretty good pace. I was the oxygen tank driver and she actually left without me! We had a good, long walk where she went twice as far as she had committed to, and only held a hand the last quarter of the way. She does so much on her own now–standing up from and sitting down in the chair, getting in and out of bed, and my only job in the bathroom now is to make sure she’s ok. Guess I’m mostly here for emotional support now. Her hands are much less shaky. She spent more time on her computer today and actually wanted to play a card game tonight. I think one of the greatest things I witnessed today though was when her daddy did or said something silly, and she laughed! It was so quiet, I would have missed it if I hadn’t been watching her. She laughed so hard her chest hurt. I grabbed her a pillow to hug to support her breastbone, and she laughed some more. Her whole face smiled, her shoulders shook, and she laughed so hard she almost cried. Oh, how I loved seeing that. It almost made me cry, too. Steve kept telling me how much better she was getting, but seeing her with my own eyes and holding her in my own arms manifested God’s love and miracles to me all over again.

Today was a good day. Sarah started the day off with removing the restriction on how many doctors that could be in her room at one time. This was a big step for her. We are trying to let her make the decisions for recovering at her own pace. She has surprised me a few times today with setting some ambitious goals. She took me a on a very long walk. You wouldn’t believe the change in her over the last 33 hours after being moved back up to her regular room. United prayer works. Sarah is walking proof.
Last Sunday night Sarah was back in ICU and they were still getting everything set up and the monitor had a audible heart beat going. I asked if we could turn off the heart beat and Sarah’s eye popped open in total panic and said, “Don’t turn off my heart beat. I need that. Don’t turn off my heart.” I can’t imagine how scary that was. But tonight I tucked her into bed after she climbed in all by herself and she calmly told me to sleep good tonight, closed her eyes and peacefully fell asleep. Amazing. Miraculous.
Thank you for your love. Thank you for your prayers. We could never have made it this far without you.
-Steve

We were sitting in the ICU last week and realized that there is really something you all (at least you who can sew) can do for her!! With her NG tube in her nose and her PICC line in her arm almost constantly hooked up to something, wearing anything but a hospital gown is really hard for her. We need some t-shirts converted into hospital shirts for her. In the hospital she would probably be most comfortable in a Boys XL (14-16 or equivalent girls size) or an Adult Small. Unfitted t-shirts would work best. I found a link that can show you one way to do it, but I can’t imagine there is a wrong way. We just need both arms to open at the top so we can easily slip it up over her shoulders, regardless of where her PICC and tubes are connected.

Hospital T-Shirt Tutorial

Thank you for your service, your prayers and your love! We love you!!
-Julia

P.S. We thought with this request, many of you would be really excited to be able to do something to help, and we might end up with a whole lot more shirts than she needs. Don’t worry, we found a solution and promise they will be appreciated. Any that don’t fit right or she doesn’t need will be donated to the CICU or the Surgical Unit at Primary Children’s. T-shirts are always more comfortable than gowns, and easier is always better in the hospital. If you get excited about this project and want to make some specifically for donation, any size from 2T up would definitely be used, and the families would be so happy! Sarah would be excited to be able to give something back to our favorite hospital.

I have said before we have not experienced the same 12 hours since the transplant 5 1/2 weeks ago. It still holds true. If I were to predict Sarah’s today based on her yesterday, I couldn’t have been more wrong.
Let me start off by saying sorry. As I reread my post from last night I found it a bit depressing. We wanted these posts to be as uplifting as we could make them and I missed the point last night. It would have been much shorter had I left out the frustration. I’ll share more about that in a minute. First I need to tell you about our new Sarah.
This morning she was pleased to report to me she felt rested and had a comfortable night. I am so grateful I insisted on having her receive the Zyprexa – that’s the drug that calms her down and helps her sleep. It did its job. She did have one short episode this morning while Dr Everett was examining her but it was short and she helped talk herself back. What a huge improvement. After participating in the rounds report with the doctors we were excited with the assessment that she needed to get out of ICU and up to the regular surgical unit. The nurses were kind enough to hold her room so we wouldn’t have to move all her stuff.
While she was having an extended music therapy session, I went up to the room to straighten it up. We left rather hastily Sunday and it was in need of a tidy up. I made sure everything was in order, the blinds were up with the outside light shining in and the lights on. I didn’t want her to have any feelings of chaos, frustration or any unnecessary distractions. We were back up by noon and Sarah settled right in. Fifteen minutes after arrival she was getting herself up to go to the bathroom and she did it mostly unassisted. I know that sounds routine, but for her it was huge.
At her own request we went for a walk. Last I was here, she was unsteady on her feet and was very apprehensive in trusting herself to walk. Today I asked her if she could make to the end of the hall to the window and back. She said sure. I asked her if she need a wheelchair behind us as a backup and she just shrugged her shoulders and said no. We went down to the window and back and she wanted to keep going. She didn’t even hang on to my arm. This was a totally new girl. We went down the other hall which is about twice the distance. Finished, she was tired but extremely proud of herself.
We changed the sheets on her bed from the hospital ones to her own brightly flowered ones. She put on her own pajamas and brushed her teeth. Wow.
I just need to follow up on my post from last night. We had a care conference scheduled this afternoon. That’s the one where everyone involved in her care meet to review and coordinate her care. It’s a lot of people in one room. It is an incredible experience to sit will all of the people to discuss Sarah. After thinking through my last post, I was prepared to charge in and speak my mind. But as I made my way through the day, a thought came to me. I could be the problem parent or I could be the parent trying to solve a problem. I settled on the latter. What a great meeting. I was scared to share my concerns and criticisms with the people taking care of my daughter. People we have grown to love. People who saved Sarah’s life. More than once.
I tried to do it as humbly as possible. My feelings are still very fresh. My emotions are raw. However I was able to let them know of the struggles we had had. To have them feel the feelings we felt. To see the loneliness we experienced and the absolute terror in seeing our daughter suffer so badly. I told them how tired and abandoned we had been. I shared specific instances.
I let them know I wasn’t searching for someone to be held accountable but that with everything I had in me, I never want another parent to live through the same thing we did because there wasn’t a standard operating procedure to handle the issue of ICU psychosis. Which through this meeting we all discovered it should more appropriately be called delirium. This has never been adequately addressed here. In preparation for the meeting it was reported that 80% of adults in an ICU, long care facility environment experience some level of delirium. It can manifest in many different ways and levels. So, if can be that prevalent among adults, why not kids. Mainly because they are seen more as being difficult and because they cannot communicate the same as adults, this had not been raised as a problem. Well, I think, now it has in a personal, rational, passionate and emphatic way.
There was a firm commitment to researching the issue, putting in procedures and training the entire hospital staff to better deal with the issue of delirium. 30% of delirium can be stopped in the early stages if the signs are caught in time. I think when your mission is to heal the whole child, this is one area that can no longer be avoided. I asked to make sure that there are procedures also to include instructions to parents on their roles in this difficult experience. I offered our family as a resource to use our experience as a template to move forward.
For the first time in four days I felt listened to. I believe it was productive and useful. For me it was therapeutic.
I expressed my appreciation and love to them. I still trust them with Sarah’s life. While this was traumatic, there is still no place else I would want her to be. Her care has been superior and this will make us stronger and better advocates. When completed, this project will make Primary Children’s Medical Center an even more miraculous place.
The numbers on the monitor in this picture may not mean much to those not familiar with Sarah. For all of her life she has been “blue”. Her blood was mixed. A regular person’s oxygen saturation in their blood may be in the high 90s. Maybe 98 or 99. Sarah has had her stats in the low 80s. As a result she never really had energy. But she lived life anyway, despite how bad she felt. As we were settling back in to her room today, I looked up at the monitor and for a brief moment, she hit 100%. Now that’s a miracle.
So, here’s to another 12 hours. I wonder what they’ll bring…
-Steve

Just wanted to let all our blog followers (that are not already in our text lists or on facebook) know that Sarah has moved back up to her room on the 3rd floor. Steve reports that she is doing much better and has only had one small episode so far today. She is anxious to go for a walk (or maybe two), get outside, and start getting better! Thank you once again for your fervent prayers.

I hope you have time, because this is a long one…
Today (Tuesday) I officially became the dreaded stressed out, frustrated and overly emotional parent of a child in the hospital. I have watched over the years how hard it is for the doctors and nurses to deal with difficult people and how it damages relationships. We have incredible relationships with these great people who do incredible jobs and I hate the idea of ruining that. But today with my emotions spent, I broke and wanted my frustrations acknowledged.
The last four days have been among the most difficult of my life. Seeing my little Sarah terrified as she slipped into the deep dark waters of confusion and pain. It has taken every ounce of mental and physical energy I could muster. I wake up in the morning already drained. Being exhausted has not helped in my ability to communicate clearly.
The day started better. Sarah was sitting up in a chair when I got back to her room. She was lucid and we had a nice conversation. Then she had her first slip back into the deep. However, she only dipped her toe in. It was short and I was able to bring her back quickly. Amanda from Music Therapy came and I thought it was perfect timing. She started to slip again but I told her she had to focus on Amanda’s eyes. They sang songs for an hour.
The psych folks came by and that’s when I started to fall apart. It was their observation that treating Sarah is a very delicate balance right now because they are to help her with this psychosis but she has these other underlying issues of panic and anxiety that was observed last week and it is coupled with the overall anxiety with procedures she has had her whole life.
Here’s the problem. First, I cannot connect the two. Anxiety over procedures is much different than anxiety that leads to a panic attack (which she has never had before last week). I am certainly not an expert in medicine, but I am an expert in Sarah Brown. She did have growing anxiety last week. Last Tuesday is when she started a new anti-biotic that we believe was the problem leading up to this. How can you base your assessment on how to treat someone when they are already suffering from side effects of a drug? I know there was no way to know that at the time. But to continue forward now that it’s in question is wrong. Following that logic, I could say the psychologist started working with Sarah last week and now she’s broken. Therefore this his fault. Well, that would be as ridiculous as treating her based on a false foundation. Please know I have the utmost respect and love for the people helping Sarah. But Doctor, please be careful in your assumptions of causality.
Now for our second problem. I assumed (and we know what that means) that since we entered the ICU with this psychosis problem, her care givers would notice when she was checking out and when I worked so hard to bring her back. Apparently, I needed to be more communicative. I needed to point out when and what was happening. It appeared to them, I guess, that I was just having intimate moments with her when in reality we were in opposite sides of hell together. In their eyes there was so much more improvement than Sarah was actually experiencing. I understand what happened and it’s no one’s fault, it was just beyond my ability to process in my current condition.
This led to 4 hours of pushing them to give her the drug that would give her some relief from her psychosis and help her get some much needed sleep. “Let’s just let her go to sleep and see how she does”. Except she can’t go to sleep because she is too scared to close her eyes because over that last several days her mind seeks up behind her and throws a wet burlap sack over her head.
In the end they relented and by 10:00 she was sleeping in a comfortable place. I still don’t know if they gave it to her because they believed she needed it or to satisfy me. Either way I know the guy without the medical degree hanging on the wall was right.
Sarah is better tonight than she was Monday night and she’s leaps and bounds over Sunday. We may never know what really happened here but she got bad when she started a new medicine and now that they stopped giving it to her she is getting better. I think I’m pretty confident in my assessment.
Now for a couple of more important events today. Fluid had built up in her right lung cavity making her breathing very labored. I watched her bed shake a little every time she inhaled and exhauled. This caused lower oxygen saturation of her blood which leads to less o2 getting to her brain which could contribute to her condition.
They tapped that fluid this afternoon and drew out 505cc, about 1/2 a liter. That is a lot of fluid in such a tiny space. She immediately felt better and they were able to lower the oxygen to her by 25%. What a relief to her system.
But the most important thing of the day happened when her Aunt Kathy came. She washed her hair, combed and braided it. She was in bliss. She loves having someone play with her hair. She was so relaxed.
I need you to know through this last experience, I would not have Sarah in a different hospital. I wouldn’t trade the people caring for her for anything in the world. Sarah has always taken to road less traveled. She has no normal. She is unique and independent. And really, I wouldn’t have it any other way. We are better because of her.
A woman from the “staff” silently slipped into the room tonight. (I don’t want to get anyone in trouble). Sarah’s eyes were closed. She just stood there quietly watching over her in the dimly lit room. After some time, she explained that Sarah was her friend. Always saying hello to her. Making her feel important. She told us she was “working” in Sarah’s room one day when Sarah was recovering from some procedure and was still out. The nurse said, “Sarah knows you”. “Oh, I don’t think so”. “Yes she does. Look at her smiling at you”. After asking Sarah if she was okay, she opened her eyes, smiled and gave her a thumbs up. At that moment, in her condition, Sarah made her the most important person in the world.
-Steve

Today I found a strength deep inside me that was not my own. Julie needed to go home to the boys this afternoon and things with Sarah were pretty good when she left. It didn’t take long for Sarah’s mild and infrequent episodes to escalate. I was nervous about being alone with her for the rest of the day. I wasn’t sure how I would make it and have enough strength. Her episodes started happening closer and closer together. The intensity began to build. But to my surprise I was by her side every step of the way with this energy that poured out of my core. I know your thoughts, prayers and a loving Heavenly Father made up for what I lacked.

From afternoon through evening she experienced a continual break and up until 7:00 we were able to focus and keep her from losing total control. However, from 7-8:30, the panic and confusion set in to stay. It wasn’t as intense as yesterday though and we had the knowledge that medication was coming that would bring her relief.

They believe this was all brought on by the new anti-biotic she started last Tuesday. Looking back Julie was able to identify mood swings, meltdowns and displeasure over the course of last Wednesday, Thursday and Friday. In a normal healthy adult the drugs should work themselves out over a 24hr period. But in her fragile condition, with her kidneys and liver not up to full capacity, they are hoping for up to 3 days. We should see changes for the better leading up to Wednesday evening.

By 9:30 she was able to relax enough to allow herself to close her eyes. When I asked her if we could have family prayer, her eyes flew open in total panic. Family prayer means I leave to go to sleep. “Please don’t go”. I promised her I would be back in the morning and her nurse promised she would sit next to her bed all night to keep watch over her. Her muscles relaxed and her eyelids closed. We had prayer and then she opened her eyes and with clarity said, “I love you, dad” and then closed her eyes. I kissed her on the nose and told her it was okay to sleep. She was safe. And with a very different perspective tonight and knowing what it meant, I wished her sweet dreams.

-Steve

PS Could you do me a favor? Zach, Sarah’s special little heart buddy needs help. He and his family could use your prayers. Would you please pray for them with the same intensity we have felt these past couple of days? There is tremendous power in united prayer. From the bottom of Sarah’s new heart… Thank you.

I’m sorry for the low quality picture but I didn’t want to disrupt Sarah’s concentration. She is focused on Julie as they work through another episode.
Julie and I slept for about 9 1/2 hours but woke up with massive headaches. We decided we needed some time together to talk and pray. It was helpful. We got back to the hospital with renewed strength. We acknowledge your part in this renewal. Your thoughts and prayers have not gone unheard. We have felt them and received power when we had felt we had none. We love you and cannot adequately express our thanks for you.
We walked into ICU with hope and faith there would be improvement. We were not disappointed.
Sarah is not really back because she is still on all her meds until they figure out what is causing this but the new med to help control this psychotic break is helping.
As we came to her room, we were greeted with a huge smile and a big hello. She told us she knew who she was, who we were and exactly why she was in the hospital.
She doesn’t remember most of the last few days but has expressed how hugely scary it has been for her. She has had several episodes today. Julie hasn’t let go of her hand since we got here. She’ll get a panicked look on her face and we’ll make her look into our eyes and start to sing primary songs and make her sing the words with us. Through those she’ll stay focused and we work through them together.
It’s hard but she is much more calm. Julie is singing to her now and just told her it was okay to rest. With great relief, she closed her eyes and relaxed. It is so good to see.

-Steve

Sarah hasn’t closed her eyes to sleep for, well we’re not sure. It could have been Friday night for a couple of hours but probably Thursday night. Saturday morning about 4:00am she had a terrifying dream that began this nightmare. We thought she was calmed down Sunday morning about 2am. We got to bed about 2:30 and the nurse called at 3 and we were at her bedside by 3:20. So in the last 2 days we haven’t had any rest. Which just compounds the experience.
I just don’t know how to tell you what has been happening. A psychotic break? Hallucinations? Memory loss? Sure, all of the above. She has been having what she calls a recurring nightmare. She has been gone for most of the last 2 days. Her terror includes believing she is in the hospital to be born, then comes back as a toddler, and then she is horrified because we are all dead.
Sometimes she knows us and sometimes she doesn’t. This morning about 4am I nodded off for just a second. I came to with a start and she had pulled off her oxygen and pulled out her feeding tube. Why did I have to go out then?
The cardiologist decided she needed to be in ICU this afternoon. They have done a brain activity scan and are fairly confident there is no damage, stroke or seizure and are holding off on a CT scan for now.
They then did a lumbar puncture (or in my language: spinal tap) and while the culture results will take a little time, the doctor said the fluid was so clear he couldn’t believe there would be an infection. There are multiple blood cultures in the works to see about other infections.
At this point it seems likely she is having a drug induced psychosis. So tonight they are reviewing all of her medications to find the probable culprit and spend the next couple of days reconfiguring her meds that are keeping her alive so they can bring back our little Sarah.
We are exhausted and have absolutely zero mental energy. We are just empty. It was so difficult to leave her but we had little choice.
In the midst of all this anguish, Sarah’s PICC line (IV to the heart) stopped drawing blood. Just before her transfer to ICU, her nurse needed to draw a considerable amount of blood for labs to test for different infections but she just couldn’t get any out of the line. Sarah was so agitated she didn’t want to poke her for the blood draw. She looked at us and said it was time to pray. She left the room. We prayed hard. She came back and pulled back on the syringe and the blood flowed like it was a brand new line.
In the middle of a bleak day here was a life line reminding us we are not abandoned by God even when we felt alone.
-Steve

After a long and difficult day there is no emotional or physical energy to give a report. We will detail all this more in the morning. I will just say we have a new appreciation for those that go through severe drug withdrawals.
-Steve