Friday, January 29, 2010

It's Great to be Home!

Well, that was quite a start to the new year! Esther was in the hospital for 29 of the last 37 days. We pretty much missed January altogether. But we are home now and so happy to be here! It is as if Esther has come alive again. She is up and walking around, talking constantly, animated, happy, and in charge, as usual!

I, on the other hand, have collapsed into a pile in the recliner. I'd be up in bed, but it is much warmer downstairs. I had a long nap this afternoon, another one this evening, and I'm more than ready to head to bed for the night. Another day or two of lying low and I'll be back in the game.

It is SO good to be home!

Thursday, January 28, 2010

We're Heading Home Tomorrow!

Esther has had two days of stable labs and two days of drinking 3+ liters! Today she even had a slight increase in her red blood cell count! Except for the times when she was receiving medications, Esther has been detached from her IV pole all day. Tomorrow morning's labs will give us the first indication of how she is doing without the 3.6 liters that she has been receiving each day for her maintenance IV fluids. Assuming her labs look good, she'll be allowed to go home on Friday, which is a couple days sooner than projected!!

The antibiotic switch that the doctors talked about doing never happened. They thought that things were working well and decided not to mess with it. Esther has received a dose of IV antibiotic every 8 hours for the last 11 days. She'll likely have another dose in the morning before being discharged. The doctors believe that will be enough so she won't have to continue the IV antibiotic at home. She will have to stay on the oral antibiotic for the C. diff.

Even though she won't be continuing the IV antibiotic, Esther will be going home with the PICC line still in place. It will make the outpatient lab draws much easier for the next week or so. The PICC line will also be used next week to give Esther some extra Epogen. We'll be glad to have it if she should get into trouble and need some extra hydration.

Esther and I are both very excited to be going home. I am looking forward to being together again as a family. Because of H1N1 and RSV concerns, the pediatric floor is "closed" and visitors have been severely restricted. I also can't wait to sleep in my own bed. Most of all, I am hugely relieved that Esther is well enough to leave the hospital! She still has some recovering to do, but time, rest, and antibiotics should do the trick.

Thanks to all of you who have left encouraging comments on the blog or sent cards or emails! Thanks to those of you who have prayed us through another crisis! We are tremendously grateful for your love and support. Special thanks to Grandma Peach who sent Esther some comfy shirts and pants which she has been living in during her hospital stay. Thanks also to Joanne and Janina for teaching my Latin classes for me these last two weeks! Blessings to you all!

We're going home!

Tuesday, January 26, 2010

Tuesday's Report

On Monday, Esther had an ultrasound to check the status of her large intestine. The infection of the bowel wall is clearly resolving. There is only a trace of inflammation left. That was great news!

I was very surprised to be told yesterday that Esther will probably need to be in the hospital for another week. At least it is encouraging to be talking about going home. The doctors have put together a list of some things that need to be accomplished before she can be discharged. The three main things are:

1) Esther's electrolytes must be balanced and be able to stay balanced without help. She has required IV supplementation of calcium, magnesium, and phosphorus multiple times.

2) Esther's red blood cell count must be stable or on the rise. It has been on a steady downward trend due to the intestinal bleeding. Unfortunately, she has lost almost everything that she gained through the transfusions last week. Yesterday she was down to the point where (for most people) a tranfusion would be considered. They have really been pushing her bone marrow (where red blood cells are made) with daily doses of Epogen. Finally today her RBC count went up a bit! We're praying that this will be the beginning of an upward trend.

3) Esther must be able to consistently drink 3 liters each day. This is the only part of the discharge plan that she has any control over and she's done a great job. Both yesterday and today she got 2.5 liters down.

In addition to the IV antibiotic to combat the intestinal infection, she is also being treated with a second oral antibiotic for the C. diff. In the next day or so, they will be switching Esther from the IV antibiotic to an additional oral antibiotic so that we won't have to mess with the IV meds when we are at home.

As expected, Esther tires quickly. Her threshold for anything unpleasant or difficult is extremely low. The smallest things frustrate her and can escalate into tears. Yesterday, after a long and exhausting trip downstairs for the ultrasound, Esther had to battle with the IV pole to get into the bathroom where she then had to take some nasty medicine that burns her canker sores and tastes like rotten bananas. Shortly thereafter, the nurse came in to do a finger prick to check her glucose. It was the last straw for Esther. She had a meltdown right then and there. She absolutely refused to let the nurse poke her. After reaching an impasse, our compassionate nurse found a way around and no poke was required.

Esther's heart rate is still consistently too high. To attempt to address this, she got two one-liter boluses in addition to her maintenance IV fluids on Saturday. Today she got one extra liter.

Overall, Esther is greatly improved. She is feeling better and eating well. She spends more time in the recliner than in the bed during the day. She is walking longer distances. We are hoping that with today's increase of red blood cells, it might not take a whole week before she is well enough to go home. As eager as we are to get out of here though, no one wants to leave too early and have to come right back again, so the docs will be sure that she is really ready before they send her home.

By the way, Esther's kidney is holding up very well under the present circumstances. It is happy with the constant supply of IV fluids that Esther receives. Dr. Guillot always says, "A hydrated kidney is a happy kidney!" Between the maintenance IV fluids, the one-liter bolus, and what Esther drank, the kidney will be very happy processing 7.2 liters from today. The real test comes when her kidney has to work harder because she is eating more and drinking "only" 3 liters a day.

Sunday, January 24, 2010

Short and Sweet

This needs to be short because I am so tired that I can barely keep my eyes open.

It is sweet because Grace was a love and made time to bring Click to the hospital to visit Esther today. Poor Esther had a meltdown on Friday - lots of pent-up frustrations and sadness. One of her issues was that she was missing the dogs. With a little negotiating, we were able to get permission for Click to come.



Thank you, Grace! What a nice big sister you are!!

The other sweet news is that after 2 days of some scary intestinal bleeding, Esther is doing better. She is eating and is much more engaged in life.

That's it for me tonight!

Thursday, January 21, 2010

The Good and the Bad

Yesterday brought both good and bad developments. As expected, Esther's echocardiogram was fine. And best of all, she didn't have a fever all day!

The difficulties yesterday included the progression of the typhlitis. Esther developed some of the clinical signs that come with typhlitis - abdominal pain and bloody diarrhea. It was a confirmation of the diagnosis, but something I had hoped to avoid since Esther has been on antibiotics since Monday. She was able to sit up in a recliner for a few hours in the evening. We watched some television together and chatted. During the night, the pain made it difficult for her to sleep.

Today was harder. Esther just didn't feel well and didn't get out of bed except to use the bathroom. Her canker sores make it so hard for her to take some of the required medications. She was understandably irritable and teary. She wasn't up for even trying to eat until dinnertime.

The typical course of treatment for typhlitis includes giving the gut a rest by not eating for several days. The medical team is hesitant to require that of Esther because she is already behind nutritionally after being sick for the last three weeks. They recognize the importance that nutrition plays in her body being able to heal. She may end up fasting on her own because eating makes the pain worse. They are monitoring the situation and will make adjustments as needed.

Esther's labs were off today and she was given some IV magnesium and phosphorus. Her potassium was too high, so they have changed the composition of her IV fluid. Hopefully, we'll see the results of these changes in tomorrow's labs.

In addition to checking her vitals, a nurse or resident comes every four hours to feel her belly. As long as it remains soft and squishy, she is not in danger. If her belly were to become hard and stiff, it would be a sign that there has been a perforation of her bowel. That would be very bad. Soft and squishy is good.

Wednesday, January 20, 2010

Wednesday Morning

Wow! Four hours of sleep, a shower, and tapioca pudding for breakfast. It's gonna be a good day!!

And...it's Grace's 19th birthday!

Happy Birthday, sweetie! You are an amazing person and I am very proud of you! I love you!

Tuesday, January 19, 2010

A Quiet Day

Another day in the hospital...Compared to yesterday, today has been nice and quiet. Esther tolerated the blood transfusions last night without complications and some of her lab values looked much better this morning.

Early this morning, Esther had an echocardiogram. The machine was brought right to her bedside so she was able to pretty much sleep through the half hour procedure. It was scheduled yesterday even before the flip-flopping episode in the recovery room. Bacteria in the body can sometimes migrate to the valves in the heart. No one is expecting there to be any problem with Esther's heart, but the doctors thought it would be wise to double check. I haven't yet heard the results of the scan.

Despite the Meropenem and Tylenol, Esther continues to sometimes act feverish, even when her temperature is normal. At one point today when she wasn't registering a fever, Esther was sleeping on her back with the blankets pulled up to her chin. As usual, a floor fan at the side of her bed was blowing directly on her head. Her cheeks were bright pink and hot to the touch. Her tousled hair framed her freckled face. She looked very peaceful, even angelic, lying there in the bed. If you knew how miserable and unhappy she was yesterday, you would appreciate today's angelic look even more. (smile!) When she woke up, both she and her bed were soaked with sweat.

The infectious disease doctor dampened my excitement a bit today. I was very glad to finally have an explanation for the weeks of sickness. I was ready to take it on, conquer it, and get Esther home and healthy. After yesterday's findings, the good doctor was still not confident that we know everything that is going on with Esther. Sure enough, this afternoon we got results from yesterday's fecal culture. Esther has C. diff. That is discouraging news! They have added a second antibiotic to her list of medications to try to knock it out. At this moment, it appears that the C. diff is in addition to whatever is causing the infection in Esther's gut. Hopefully more time and information will reveal all.

The other troubling issue that needs clarification is the cause of Esther's canker sores. When I say that Esther has canker sores, I am not referring to everyday, run of the mill canker sores. These puppies are huge! And they hurt a lot! She has recently developed some new ones. This often makes eating and drinking difficult for her.

Someone asked about sending emails to Esther in the hospital. I can't get the in-text link to work right now, so look for a link down in the column on the far right. From there you can follow the directions and send an email to Esther. I'm sure she'd love to hear from many of you. Esther's room number is Baird 586.

Monday, January 18, 2010

An Intense Day

It has been a very long day and it is not over yet. The good news is that we have a diagnosis and a plan of attack. An ultrasound of Esther's abdomen this afternoon revealed that the wall of her large intestine is thickened and inflamed. The diagnosis is typhlitis. It is "a life-threatening, necrotizing enterocolitis occurring primarily in immunosuppressed patients." (www.uptodate.com)

Bottom line...Esther has an infection in the wall of her large intestine. It is suspected that her rejection treatment over Christmas, which caused her to be highly immunosuppressed, set her up for this infection. The average mortality rate from typhlitis is supposedly 40-50% due to perforation, bowel necrosis, and sepsis. I don't believe that Esther will be in this 40-50%. Despite having been sick for the last three weeks, I think that we have caught this on the early side. Esther's belly is still soft and she is not complaining of abdominal pain. It is, nonetheless, a serious condition and will likely require 3-4 weeks of IV antibiotics. Until they can culture a specific bacteria, Esther is being treated every 8 hours with a high-powered, broad spectrum antibiotic called Meropenem.

Esther's electrolytes are out of whack, so she is receiving IV doses of both calcium and magnesium. She is also severely anemic, with a hemoglobin of 5.7 (normal range is 13-16). She has been anemic for awhile and was being aggressively treated during her last hospital stay, but to no avail. Now her red blood cell count is even lower. Apparently, the bone marrow shuts down production of red blood cells when there is an infection in the body. Dr. Guillot made the difficult decision to transfuse Esther with two units of packed red blood cells. Introducing blood products is risky for several reasons, but it is an especially unpopular subject in our family because of the possibility of developing sensitivities to additional antigens. Samuel has been unable to get a transplant because of this exact issue. Thankfully, Esther has a lovely, functioning kidney and, Lord willing, won't be needing another one any time soon!

The two units of blood will tranfuse over 6 hours. Esther will have to be monitored closely, so the nurse will be coming in to do vitals every half hour through the night. Those visits, combined with the fact that I will be "sleeping" in a recliner, are likely to make for a very long night.

The intensity level has been a bit high today and got even higher while Esther was in the recovery room after having the PICC line (percutaneously inserted central catheter) placed. They had just started the antibiotics when Esther commented that her heart was flip-flopping and that it was making her head hurt. Dr. Guillot was able to hear it happening and once Esther was hooked up to the heart monitor, we could watch it happening. Suddenly there were a lot of questions. Was she having a problem from the anesthesia? Was she having a reaction to the antibiotics? Had the intestinal bacteria migrated to her heart? They told me that Esther would be going to the ICU so she could be more closely monitored than on Baird 5. Eventually, they realized that the end of the PICC line was too far in and it was irritating her heart. They undid all the bandaging and tape and pulled the line out a few centimeters. That fixed the problem! Big sigh of relief!

It is much too early to predict how long Esther will need to be in the hospital. Hopefully, she will respond quickly to the treatment. Once she is well enough to go home, we can continue the IV antibiotics at home using the PICC line.

Tom and I are extremely grateful that we now know what we are dealing with. It has been a long three weeks of fevers, diarrhea, dehydration, and a revolving hospital door. I spent hours on the computer this weekend searching for possible explanations because I wasn't satisfied with the diagnosis that we had been given on Friday when Esther was in the ER for rehydration. I was told that she probably had a Coxsackie virus. I did not agree. I was concerned that the doctors were content with this Coxsackie diagnosis and would stop looking for something else. When I brought Esther back in to the hospital this morning because her fever was high and her pulse was even higher (160!), I was prepared to insist that they keep digging. Thankfully, they saw the need themselves and worked quickly to arrange further testing. This afternoon I asked our Bible study group to pray specifically that the source of the fevers would be revealed so that it could be addressed. We are so thankful to have such a quick and specific answer to this prayer! God is good!

Well, I started writing this post at 11:45 p.m. and it is now 3:45 a.m. It has been a busy night. While we are waiting for the second unit of blood to arrive, I should try to close my eyes for a bit. I am still running on adrenalin.

In the Hospital Again

Esther is back in the hospital up on the pediatric floor. We came in this morning through the ER. We can't safely manage her at home anymore. The fever is causing too much dehydration and she is just too sick.

Esther has a temporary IV in her fistula and will be going down to Interventional Radiology this afternoon to have a PICC line put in. That will give good, longer term access and she won't have to be stuck everytime they need to draw labs.

They are running more blood tests and cultures and will be doing a series of abdominal ultrasound scans, but beyond that, I don't yet know what the plan is.

Stay tuned and please be praying for my poor pup.

Friday, January 15, 2010

You'll Never Guess Where We Are!

After being discharged on Wednesday morning, Esther started right back with a fever on Wednesday night. By Thursday morning, she was back up to 102+. There was still an unanswered question about whether something like a hidden tooth abscess could be causing the fever. In order to answer that question once and for all, I had to drag Esther out to the dentist for x-rays. Can you believe it? I actually had to get out of bed on Thursday! That certainly wasn't in my plans for yesterday!

Esther's teeth look great - no abscesses, no infection, no cavities - only several very large canker sores that have been plaguing her since her acute rejection treatment over Christmas. The dentist said they were the biggest canker sores he has ever seen in his life. Sometimes it is not fun to be special! Esther laid low after our outing and did a super job of drinking almost 3 1/2 liters. Tylenol kept her fever down, but not all the way.

This morning Esther couldn't stand up without blacking out. Her blood pressure was low and her heart was racing. She still had a low grade fever. We came into the hospital as scheduled for routine lab work and a clinic visit. After three attempts, the phlebotomist had only collected a very small amount of blood - not enough to run all the lab tests. They gave up in the lab and sent Esther on to clinic. Once there, the docs did a quick assessment and promptly sent her to the ER. Her creatinine has taken a jump up since being discharged on Wednesday. It appears that she is dehydrated yet again.

Dr. Guillot kindly came down to the ER and put an IV into her fistula. They didn't think they could get an IV in anywhere else. Normally the fistula, and even Esther's whole left arm, is totally off limits for IV's, lab sticks, and blood pressures. Very few people in the hospital are authorized to access a fistula. Thankfully, Dr. Guillot is one of the few and she got the job done without Esther having to be tortured.

Esther is currently receiving her second liter of IV fluid. Once that is in, they will reassess to determine if she needs a third. Even though she drank 3 ½ liters yesterday, it seems it wasn't enough to keep up with what she lost as a result of the fever. Initially, they said she would be admitted, but now, thankfully, word is that they will let her go home after all the fluids are in. We sure hope so! Esther is not happy about being here!

Wednesday, January 13, 2010

Home Sweet Home

We're so glad to be home! Esther and I were ready to go by the time Tom and Samuel finished up with dialysis, so we all left the hospital together. Two kids, two wheelchairs. We were home in time for a quick lunch and then Esther and I collapsed together on one couch and took a 3-hour nap. Samuel had a bad headache and was feeling awful after his dialysis session. Upon arriving home, he walked directly from the car to the couch, only pausing briefly to shed his shoes.


Samuel slept like this for about 6 hours today. This is actually a common sight on Mondays, Wednesdays, and Fridays. Samuel is regularly sick after dialysis and often spends the afternoon sleeping it off. Apparently, the coat-over-the-head is to keep out light.

After some unpacking, kitchen clean-up, and laundry, I'm jammied up and nestled comfortably in my bed. Yes, a bed, a real bed! It's heavenly! Esther is asleep beside me. I may never get out of bed again!

Before I can go to sleep though, I have to email some homework assignments to my Latin students. A sweet friend substituted for my weekly Latin classes yesterday. Thank you, Joanne!

If you are wondering about our late night escapade last night, we had even greater success with our mischief, I mean mission, than expected. Our accomplice in the crime was a pediatric resident who knew the secret code needed to gain access to the administrative wing. (Thanks, G.!) Instead of leaving Esther's water bottle collection outside the good doctor's office as planned, we arrived to find her office door wide open. We tastefully decorated her desk with the empty water bottles and left her a little love note. It was fun and our good-humored doctor had a good laugh this morning when she came into work. It was a nice diversion after having to behave myself for all those days in the hospital.

Oh, and if you are wondering why we spent all those days in the hospital and how a simple rehydration treatment turned into a fever and a 10-day hospital stay...you'll have to keep wondering. The final diagnosis was "fever of unknown etiology", which simply means Esther was sick, but they don't know why. Every test and culture that they did came back negative. No specific bacteria or virus could be identified. Of course, they can't possibly test for every possible pathogen, so something caused Esther to be sick, we just may never know what it was. And in the end, it doesn't really matter. She is getting better.

Tuesday, January 12, 2010

Delayed Gratification

Well, we will be going home, but it won’t be tonight. With the IV still in place and supplying 150 ml per hour, we did a test run today to see if Esther would be able to drink enough. The goal for today was 3 liters and Esther did it! But it was 9:30 p.m. by the time she reached her quota. Given the hour, the cold, the dark, the fact that my van is in a parking lot somewhere covered in snow, my state of exhaustion, and the fact that Esther would have to turn around and come right back to the hospital first thing in the morning again for labs, we’ve chosen to stay put for the night.

Esther needs to get up and walk laps around the pediatric floor every couple hours. For a change of scenery and a bit of mischief, we are thinking about sneaking out and down the hall to leave Esther’s eleven empty water bottles in front of her nephrologist’s office door.

We're all packed and will be ready to blast out of here tomorrow morning!

Going Home?

Esther made good progress yesterday! By evening, she was much steadier on her feet and had more of an interest in eating. Still some recovering to do, but she doesn't need to be in the hospital to do it. I think the biggest challenge for her will be drinking enough to stay well-hydrated. Once the IV comes out, she'll need to drink 4 liters a day.

We have to wait for lab results and official marching orders, but we expect to be able to go home later today.

Sunday, January 10, 2010

Sunday Update

After 40 hours of fever, Esther turned a corner last night and is doing better today. She is weak and continues to have diarrhea but, hopefully, the worst is over. The transplant surgeon stopped in earlier and is pleased with her lab results from this morning, but is still cautious and withholding judgment until today’s results become a trend and not just a one-time blip.

We are still waiting for the results from many lab tests and cultures but, in the meantime, the docs have been treating Esther as if she had some of these things, just in case. There are a couple pathogens that the doctors were able to rule out. One of those was C. diff (Clostridium difficile). Praise God! Samuel has had it and it is nasty! While the whole pediatric floor is “closed” due to H1N1 and caregivers are supposed to be the only visitors, they imposed extra handling precautions on Esther for a day while they waited for the results of the C. diff test. Again, we are very relieved that she doesn’t have it and that she’s been released from her “isolation”.

Esther is on four different immunosuppressant drugs. In addition, she was blasted over Christmas with IV steroids after biopsy results showed that her body was trying to reject the kidney. These extra drugs did their job of stomping all over her immune system and stopping the rejection, but her now highly immunosuppressed state has made her vulnerable to opportunistic pathogens. To give her body some chance of fighting off this illness itself and to lower some drug levels that were too high as a result of altered absorption, the doctors have temporarily stopped one of her immunosuppressant drugs and reduced the dosage of two others. At this point, we don’t know if it is the medications that they have given, the medications that they haven’t given, or just time and hydration that have made the difference for Esther. It is too early to tell if her improvement is “real”, as they say. More time, more lab results, more fluids, more prayers are all needed.

Friday, January 8, 2010

Temporary Setbacks

Last night's plan was for Esther to be discharged this morning after confirmation that everything looked good with the morning labs. Unfortunately, Esther spiked a fever in the middle of the night and is now quite sick. The docs are running more tests, changing medications, and calling in an infectious disease specialist. So we're back to square one. We'll have to wait and see what today brings.

Speaking of square one, another potential donor for Samuel was disqualified this week. This person wasn't compatible with Samuel directly, but he was willing to donate on Samuel's behalf through the the National Kidney Registry and their program of arranging paired exchanges. You can read about the work they do here: http://www.kidneyregistry.org/living_donors.php#welcome

What a pile of emotions come along with news of this setback!

~ Disappointment that it didn't work out yet again.

~ Sadness that that light at the end of the proverbial tunnel just got smaller.

~ Concern for Samuel. Dialysis is hard on the body. Long-term transplant outcomes decrease the longer one is on dialysis.

~ Grief for Samuel. He is longing for a transplant.

~ Relief that someone we know and care about won't be put at risk or suffer pain as a result of donating.

~ Thankfulness that the Lord used the screening process to reveal a potentially serious health issue for the donor.

~ Confidence that, if not this person, the Lord must have someone else in mind as a donor for Samuel.

~ Gratitude for the incredible selfless generosity of this would-be donor and the many, many others who have been willing to make the sacrifice for Samuel (and Esther and Katie!). These folks are heroes to us whether they end up being able to donate or not. How very grateful we are to each of them!

A special thank-you today to you, Chris. May the Lord bless you richly for your willingness to give such a precious gift!


Tom brought Samuel in this morning for his usual dialysis treatment. It is number 379, but who's counting? In the darkness of the early morning dawn, Tom and I were both able to look out our brightly lit hospital windows and wave to each other across the dark abyss between the two buildings. It was a bit surreal. I hate having two children in the hospital at the same time!

Wednesday, January 6, 2010

And She's in the Hospital Again!

Creatinine is back up. Could be a result of dehydration, could be caused by a high Prograf level. Either way, Esther is once again a patient on Baird 5. We currently have a roomful of IV nurses who are trying to find a good vein to use for an IV - two unsuccessful attempts so far.

The plan is to continue the rehydration. We expect it to be a short stay.

Tuesday, January 5, 2010

And She's Home Again!

Esther received four liters of IV fluid while in the hospital and her kidney is now a bit happier. Creatinine is down to 1.20. Esther came home this afternoon and is under strict orders from the doctor to drink another four liters before bed. It will be a challenge for her.

We'll go back in for labs in the morning to be sure the treatment is doing the job. So grateful that simple H2O is the medicine of the day!

Have YOU had a glass of water lately?

Monday, January 4, 2010

It's a Revolving Door!

Esther went back to the hospital this afternoon. Thankfully (and hopefully), it is only for the purpose of rehydration. We and our house guests were hit with a violent and virulent stomach bug beginning on New Year's Eve. In a houseful of 19 people, 16 of us got it over the course of 4 days. Two of our guests had already had it. That means, out of the 19, only one remains standing. Go, Kathryn!! Unfortunately, we also know of a couple others who are now sick after being at our house briefly over the weekend. It was quite a nasty bug with an incredibly short incubation period! We were washing hands like crazy, but alas, to no avail.

Amazingly, Esther was one of the last ones to become ill but, as a result, got quite dehydrated. I'll spare you the gory details of how she came to be so dehydrated. She is back up on Baird 5 getting plumped up with fluid. She has lost nearly 8 pounds since she was last weighed when she left the hospital on Wednesday and her creatinine is back up at 1.70. It was last 1.02. Tom took her up this afternoon and is with her now as I am still recovering. Hopefully, they'll get her fixed up and she'll be back home again tomorrow.

Never a dull moment!

P.S. We managed to have a great time with our friends despite all the throwing up. It will be a New Year's not soon forgotten!