Home Sweet Home

Well, my daily blog posts of our hospital adventure didn't last very long. I'm really really glad, though. That means that we're home! Sarah did pretty well today. She did throw up some today and had a low-grade fever tonight, but I don't think it's serious. Without nausea, her PLE is probably the cause of the vomiting. She's gone a couple of weeks though without, so I hope it goes away again soon. Her appetite has got to get better, now that we're home and she's not forced to choose from the same hospital menu every day. I really think it's going to take a while before she feels all the way better. Being sick for a month has taken its toll and she's thin, weak, and tired. I spent over an hour today organizing her medicine and making a chart so we could keep everything straight and keep track of her progress. We put all the hospital stuff away (kind of) and cleaned up all the boredom busters we had collected in our four weeks at the hospital. We had certainly moved in and made ourselves at home! It's so nice to unpack, knowing that we'll be home for a while (hopefully a very long while).

Steve found me this cartoon today in the paper. It made us laugh, and felt so appropriate at the moment.

I suppose when doctors aren't really sure what you've got, or what to do about what you've got, it would be comforting to create another problem that CAN be solved! :) We never really experienced that at the hospital, but it did seem occasionally like any progress would have been a good thing!

Today I learned that when you come home, even after a stressful month in the hospital, "normal life" is waiting for you, even if you're not ready for it. Grocery shopping, errands, dishes... they all think they're still important. It did feel good to be in my PJ's til noon, though! I suppose the rest of the "lots of things to do" will just have to wait! (How long do you think I get to use this excuse for my lack of desire to do all those things?)

Today we're thankful for being home together again. I'm so grateful that Sarah is doing okay still, and that we were able to be home together. In some ways it feels like we've never been apart. Then I look at my boys, and it seems they have changed so much since I hugged them 11 days ago. It just feels so good to be back together!!

PCMC - Day 27

WE CAME HOME!! YAY!! HOORAY!!

Today I learned that we could come home!!

Today we are grateful that we got to come home!!

:) Silly, I know, but we're just so happy be be here together!

(I will expound in the next few days, I promise!!)

PCMC - Day 26

Pretty good day today. Sarah was still tired and spent much of the day sleeping off the rest of the anesthesia.

We met Dr. Lynn Gershan, the medical director of Pediatric Integrative Services, and Dr. Rafael Firszt, the immunologist. We learned a lot of interesting things today about altertnative medicine and Sarah's immune system. She's still feeling pretty good, but had a fever again tonight...darn it!

I'll re-do this post in the morning and expound. We're really tired and need to go to sleep.

Goodnight!

Daily Blog - PCMC Day 25

Today actually started in the wee hours of the morning. Sarah spent most of the night being awakened every hour or half hour for uncomfortable things to help prepare for her colonsocopy. After morning vitals, we were visited by the oncologist (the doctor doing the bone marrow aspirate) and she said she'd see us at 1:15. We were obviously confused, since we had been preparing all night for tests at 7:30 a.m. They were planning to run them together since she'd already be under anesthesia and in the OR. They had originally scheduled them separately, then together in the morning instead, and somehow didn't get the message to oncology. In looking at the schedule, the teams decided the later time worked better for them. We were beyond frustrated with the inconvenience and stress this caused Sarah (not to mention serious lack of sleep, and no food or drinks now til afternoon). I expressed our frustration to the poor innocent nurse and resident, and then realized that it was already decided, and there was not much to do except be positive and try to help her cope. We passed the time pretty well with a morning nap, a visit from Aunt Kathy (Steve's sister) and a game of doodle dice. Before we knew it, the time had come.

All Sarah remembers is talking with the anesthesiologist, getting some "relaxing" medicine, and telling me goodbye. The next thing she remembers is waking up in her room, 4 1/2 hours later, feeling sleepy, but pretty good. Even though it makes her a little weepy, versed is a pretty great amnesia-inducing drug! The procedures actually only took about an hour and a half, and all went well. There will probably not be any results for about 48 hours, but she handled them beautifully, and the doctors were able to collect all the cells and biopsies, and see everything they needed to. She is pretty comfortable and now receiving a broad-spectrum antibiotic in her IV while we wait for answers. (No reason to sit around wasting any more time, huh?) Hopefully, by Friday we'll have the answer to this puzzle that has been so aggravating these past few weeks. I'm frankly a little nervous about the results of these tests. I'm scared that they still won't find the answer to her inflammatory markers and  mysterious fevers. When I decide to be positive and hope that they really will solve the puzzle with these tests, I'm kind of scared of what they will find. I know that's the goal, and what we've all been praying for, but the unknown is not something I'm very eager to face head-on these days.

Steve is home with the kids, being a daddy, mommy, and candidate, catching up on the last 3 weeks away from home, and putting together Halloween costumes and a City Council campaign. Mom has helped a lot after school, and continued being the wonderful Grandma she is. The kids are so happy to have him there, and as much as they need him, and he needs to be there, it was so hard today to be apart. Sure hope we don't have very many more of these "hard" days ahead.

Today Sarah is grateful for anesthesia and for good doctors that know what they're doing. I'm thankful that there were no bad surprises or complications and that it's all over for another day. I'm also thankful for our family and all the wonderful things they're doing for us to help us through this tough time.

Today we learned that just because a day starts out bad, it doesn't mean the whole day has to stink. Today ended up being a pretty good day, thanks to our Father in Heaven for sending (in various ways) the comfort and love He has promised.

Daily Blog - PCMC Day 24

At the suggestion of a member of the Rainbow Kids team, I decided that I am going to post on our blog every day now, at least for a while. I hope this will accomplish a few things for me and my family...

1. Provide daily updates for our family and friends to know what's going on through Sarah's current hospital stay.
2. Help me journal this experience in our life a little better and more accurately.
3. Give me a place to write my feelings and insights into what this experience really is to me, and how it affects me and the people I love.
4. Help me take a few minutes every day to reflect on blessings we're receiving and things we're learning through this experience.

PCMC Day 24

Sarah is doing pretty well today. She is feeling a little more sleepy than she has been, but it's been a pretty good day otherwise. Her tummy is a little smaller and she still has some diarrhea and fever, but her appetite is still really good, and she's pretty happy, considering we're still here. She is no longer receiving any antibiotics right now, with the assumption that the bacteria that's causing the fever will be able to grow better if it's not sterilized by the antibiotics. They have assumed the fluid in her belly is what was infected, and there were inflammatory markers and elevated white cells, but the cultures didn't grow. So, with no antibiotics on board, they are repeating a bunch of tests for common intestinal illnesses through blood and stool tests. At this point, we're hoping for some more symptoms to rear their ugly heads, cultures to grow something definitely yucky, or for things to just taper off and get better.

Tomorrow, she is going to have a bone marrow aspirate (collection of bone marrow cells through a needle) to rule out salmonella and a few others that sometimes "hide" in the bone marrow. While she's sedated, they will also do a GI endoscopy and colonoscopy to "see" what's going on inside and can do biopsies of anything weird at the same time. She's pretty nervous about new tests like these, but will be sedated and safe, and I'm confident she will do fine. The hardest part is the unknown, only second to how weepy and tired the sedation makes her feel.

Today we're grateful for fun distractions like games, puzzles, Teen Night and a long walk through the University of Utah campus.

Today I learned that there is not pathway or sidewalk that takes you just around the hospitals, and that taking care of yourself is not neglecting someone else.

My October Gratitude List

Since things have been less than ideal in our lives this month, I thought I should share some of the things we are grateful for these days... (in no particular order, and most likely not a very complete list)

• For Primary Children's Medical Center - that the hospital is only 2 1/2 hours away, for incredible doctors and nurses that really care about Sarah, for specialists and cooperative teams trying to solve her problems, special teams like Child Life and Rainbow Kids, and that one of its purposes is to keep kids happy while they have to be here
• For the love, prayers, support and visits from our extended family, friends, ward family, and acquaintances
• That Steve's boss has been so understanding and flexible to help get us through this and keep his focus where it should be right now
• For Steve's friends that have helped with his city council campaign in his absence
• For home teachers that have mowed our gigantic lawn more than once
• That my mom is retired and has been able and willing to "move in" to take care of my kids so Steve and I could both be here as much as possible, and for my dad for helping and supporting her (and us)
• For Steve's parents for providing us with room and board, and wonderful meals, and company
• For Relief Society leaders that have completely taken over my calling so I could focus on my family
• For all of the "love" that has showed up on our doorstep... hospital snacks, presents for Sarah, meals, treats, Halloween surprises, cards, and money to help us through this stressful time
• That we have good insurance and Medicaid for Sarah so the hospital and doctor bills haven't caused any extra stress
• For social workers that arranged a room for us at the Ronald McDonald House and other reimbursement programs to help relieve some of our other financial burdens
• That my sweet sister-in-law sewed Bryson's Halloween costume so I wouldn't have to
• For our patient children at home that haven't complained, but pray every day that we'll be home together again soon
• For technology (like videocams and skype) that allow us to "be with" our kids sometimes
• For Steve's sisters that planned a "surprise Hawaiian luau" to brighten Sarah's otherwise frustrating and disappointing weekend
• For the family members and friends that have come to visit, bring meals, do crafts with Sarah, and brighten our prolonged stay at the hospital
• For our sweet daughter Sarah, and her incredible example of faith and long-suffering
• For our Heavenly Father's love and care, His plan, blessings, and tender mercies
• For our Savior, Jesus Christ, and His infinite love and atonement that grants us the strength to endure and the grace sufficient to overcome

Another Ride

I don't even know where to begin this time.... So much has happened, and there is so much to say.

We did get off the "roller coaster", the very next day. Late Saturday night, Sarah was released from the hospital. We went home with strict orders to watch and monitor her fevers, keep in touch with the cardiologists, and follow up with her pediatrician within the week. It was so very wonderful to be home together! Sarah was still pretty sick, but we did our best to keep her comfortable and keep track of everything. Thankfully, we still had another week of Fall Break for the boys and me, so I got to be the nurse and mommy while Steve worked and we tried to get back to "normal". I called to schedule Sarah's follow-up for the following Friday, and they didn't have any room for her that day. So, we scheduled it for Wednesday morning instead. By Tuesday night, I looked over the careful notes we'd been taking of her "at home" vitals, and realized that things really weren't getting any better. She still had little appetite, and the other symptoms were much the same, if not worse. We headed to the doctor in the morning, and he confirmed those thoughts. He ran blood tests again, and told us that she seemed even worse than when he sent her to the hospital two weeks earlier. He told us to go immediately to the hospital (in Pocatello) where they would get some IV antibiotics and more maintenance fluids in her. She was to be flown (by the Life-Flight helicopter) to Primary Children's again, where the experts were that could help her.

So, I guess, we were forced back in line for another ride... It was a different roller coaster this time. Same amusement park, but a different ride. As we boarded this "same, but different" ride, I thought, "I really don't want to do this again...". It has been a different ride, with more hope and success, more support and company, and also more frustration and tears. As we're (hopefully) drawing near the end of this second ride (day 12 today), I've decided I don't like this part of the park much. Most of the rides really stink.

*     *     *     *     *

On October 12th, we watched Sarah strapped into the helicopter and lifted into the air. Steve arranged for his sisters to meet her at the hospital when she arrived so she wouldn't have to be alone. She was stable, but it was so hard to see her taken from us again... just like when she was a newborn. When we had arranged everything and talked to each of the kids about going back, we headed to Salt Lake to find our 18 year old baby girl looking much better than when she left us. The next several days were kind of like a continuation of our last trip, but different in many ways. Instead of doing more searching for the cause, it seemed the teams of doctors were more concerned with finding a treatment. They decided the oral antibiotics she had been taking at home must not have been fully absorbed, so she wasn't getting the medicine in her she needed. They also started looking at some of the long-term things we could do to help her PLE, since the nature of the symptoms had seemed swing more to that disease. She stopped throwing up the day after she returned, and the fevers seemed to go away by the next Sunday. We were making progress.... The fever and white blood count, however, were still baffling.

I went home Saturday afternoon and stayed there with the kids until Wednesday afternoon and Steve stayed with Sarah. I was able to get some much needed time with my sweet ones at home, and also all 15 hours of work in at the school. While I was gone, it seemed Sarah just kept improving. Her cardiac team brought in Dr. Angela Yetman, who runs the Adult Congenital Cardiology Cardiac Program at Primary Children’s and the University Hospital. She specializes in adult patients with congenital heart defects. Kids with anatomies like Sarah's didn't used to live into adulthood, and now most adult heart doctors don't really know how to work with patients with such complex heart anatomies and complications. Apparently these same issues and treatments are different in adults and children. She immediately put the kibosh on a feeding tube, more albumen treatments, and the seriously low fat diet. She ordered iron infusions (to help with absorption in her intestines, slow down the gut, and raise red blood cell and oxygen levels) and a calorie count, giving Sarah the freedom to eat what she really wanted to, hopefully proving she could keep in enough nutrients to gain weight and be healthy again. I couldn't wait to return and meet this doctor whom Sarah has officially hired and seemed to turn things around because of her experience and expertise. If nothing else, it was a new (and welcome) perspective, and gave us a connection and starting point with an adult cardiologist.

Sarah was doing really well. Fevers had stopped, no more vomiting for a week, diarrhea was slowing down, and she was feeling really good. We were pretty concerned about how big her belly had gotten, but were assured that with all the swelling of her internal organs and the fluid that the albumen hangs onto, we'd need to be patient for quite a while before that would go away. With that settled in our minds, we were planning to be home on Friday. Then, late Thursday evening, there was another fever spike....

The doctors came in and delivered the sad news and my little angel fell apart. She was so disappointed and so homesick, she couldn't even really hear what the doctors were saying. Then, she wiped her eyes, and said courageously, "I really want to go home, but I don't want to have to come right back again. I'll stay as long as I need to to get better." It was a pretty hard morning for all of us, as we had hopes of being home with our whole family together again. Since she had a (new or recurring) fever again, they decided to go ahead and tap the fluid in her belly and test it to see if the peritonitis they'd been treating. (Everybody has a small amount of peritoneal fluid in their belly to cushion the organs in the abdomen. In the weeks prior, Sarah's hadn't shown up as an abnormal amount in the tests they'd run, so they hadn't tested it, but just treated it. They assumed that since everything else was negative, it was a logical deduction that her intestinal issues and swollen belly would contribute to that diagnosis.) When they checked on ultrasound, this time there was a serious amount of fluid in there. They took her in and tapped the fluid to test and removed 450ccs (almost 17oz) of fluid from her belly. It has made her feel better, and her appetite has really improved (more room in the tummy equals more calories in the tummy). We all feel much better about having had that done, and I wonder now if the fever was another tool of our Heavenly Father's to keep us here so they would go ahead with that procedure. Her fevers have continued the last 3 days at a low-grade level and now they're testing for common respiratory viruses to explain the fevers. If they come back positive, she'll be headed home, with a little "head cold", but knowing that the initial infection and issues are now better. More testing and more waiting....

It's Sunday again, and Steve and I are both here with Sarah at the hospital, hoping tomorrow will be the day. Waiting for cultures to grow can take a few days, and I'm worried that they'll want to have definite answers or no fevers for a bit before sending us home. Sarah is at day 29 of being sick, day 22 at the hospital and has had 35 pokes, with 11 IVs. I think it's time. But, I'm with Sarah on this. I really don't want to take her home until it's really time.... Heaven help us to finish this ride patiently.

The Hospital Roller Coaster Ride

I usually really like roller coasters. The twistier, scarier, and more adrenaline-rush-causing the better. I have decided, however, that I really don't like life's figurative roller coasters. In the midst of a struggle, it seems that every once in a while life tosses you some hope and then it's all dashed in a matter of moments with one sudden event. Then, you get to the worst part, where you think you might just lose your lunch, and there's suddenly a little more light and a little more hope again. Not that I'm ungrateful for the hope and the light. It's those miracles and blessings that makes our struggles and burdens easier to bear. I think it's just frustrating because the figurative roller coasters seem to be awfully long rides sometimes. What if I don't want to "keep my arms and legs in the car at all times"? I want to get off....

Last week, Thursday, September 29th, we checked Sarah into Primary Children's Medical Center. She had been really sick with a "stomach flu bug" (we thought) since the previous Sunday. I took her to see her pediatrician on Wednesday afternoon, worried that she may be getting dehydrated. With her diuretics and PLE, I wasn't sure how far to push her before we did something about it. We had blood drawn and an exam, and went home with some zofran (anti-nausea medicine) and waited for lab results. The doctor called back, close to 10 p.m., after discussing with cardiologists at PCMC what should be done. Her albumen levels (4-6 for normal people, should be at 4 for her) were down to 1.6. By the time we got her to the hospital the next afternoon, she was at 1.3. When she was so sick 3 years ago, her levels dropped to 1.2. The difference this time is that she hasn't been sick for months before doing something. But, her protein levels are about the same. Anyway, we checked her in for an overnight stay to receive some albumen infusions, with the hope that raising those levels would counteract the symptoms (swelling, diarrhea and vomiting) and calm things down in her gut. The problem, however, came with the fever she keeps spiking around 102 up to 103.4. The infectious disease team was called in to see what they could find. After days of stool, blood and urine samples, everything they tested for came back negative. They checked for things like urinary tract infection, bacterial infections in her blood, rotovirus, salomomonilla, listeria, and so many more I don't even know what they were. After several days of testing, growing cultures, and waiting for results, everything has come back negative.

The gastrointestinal team was called in a few days later (notice we are checked in for an extended stay now) to see if they could help explain why symptoms were not letting up with elevated protein levels. They recommended an ultrasound to see if she had an excess of peritoneal fluid in her abdomen that could be infected. It didn't show an unusual amount, so "tapping" it was kind of discarded for a bit. Yesterday, a whole week after our arrival, and the day following another fever spike, they did a CT Scan with contrast to see if her mal-rotated intestines maybe were twisted or pinched, causing the vomiting and diarrhea. They were also checking for arteries that could be clamping and pinching the bowel (because with her weight loss, she's probably lost most of the fatty tissue that protects the intestine) as well. Results of that test said that things seemed to be functioning "normally" without any blockages of any kind. That was a relief, but still left questions of what's causing the fever. They decided to treat the fever like any bacterial infection and gave her an IV antibiotic, hoping that in a day or two it will just fix the problem without explanation (because there might not seem to be one...).

So, here we are, 8 days since admission, still waiting and trying to fix what's wrong. She has improved, throughout all these tests, and probably just through the passing of time, her symptoms have changed from the original "stomach flu" style of symptoms with nausea to more of a PLE "rejection" type of  vomiting without the nausea. So, we're still here, unsure of whether those symptoms (diarrhea and vomiting) is PLE or if it's something else, but doing our best to help her heal, be comfortable, get some nutrition in her, kill the fever, and get her home.

Today is one of the best days we've had since we checked her in. She's felt pretty good, gone on a few walks, and actually kept food down all day! That's a huge milestone...it's been almost 2 weeks since that's happened. So, as I sit here telling this story, we're filled with hope and smiles today that we're headed a good direction. Maybe we're at the "tummy-tickle" part of the ride. I hope and pray in the coming days that the fever will go away with the antibiotics, and the food will stay down so we can all be home together again in just a few days.

We've had some really special times together trying to cope with the emotional and spiritual struggles that come with such an experience. We're so blessed to have my mom taking care of the other children so we can both be here with her. Steve's work has been so good to be flexible and just cover things so he can be where he needs to be. It's been such a blessing to have us both here so we can each take turns being strong enough for the other two. Steve had an wonderful experience with Sarah in the "Meditation Room", and Steve and I had a sweet healing experience on a walk and in the "Angel Garden". I can't imagine how we would be handling things without these incredible blessings. Between all the prayers and the opportunity to be here together, we've learned so many things and grown spiritually. We've learned more about the difference between wearing a "mask" and putting on your "game face", what "courage" really is, experienced and shared tender mercies, and studied and learned more about the Atonement of our Savior and His infinite grace.

I'd like to say that the roller coaster ride is over, and that we're finally getting off dizzy, giggly, and happy to be back on the ground. Not sure when that will happen, but on a day like today, I have hope and faith that it will be whenever it's supposed to be. Our loving Heavenly Father is in charge. It will be over as soon as He thinks it should be. We're where she needs to be to get the best care possible, and with all the love and prayers we've felt, I know He must be waiting to bring us great blessings.