This gallery is set up to allow my sister and brother-in-law (Sarah and John Galloway) a forum for updating on their thirteen month old son Will's fight against HUS/E. coli. His hospitalization began on July 4, 2006. I'm hoping the pictures will help as we feel compelled to join his battle in thought, prayer, words of encouragement, etc.

Thanks for your interest, prayers and encouragement.

WHAT and WHEN???

A little history: My thirteen month nephew Will was admitted to Vanderbilt Children's Hospital on July 4, 2006 with HUS (hemolytic uremic syndrome) after a digestive system infection started showing ugly symptoms. It has been determined that the infection was caused by exposure to E. coli (Escherichia coli bacterium) while on vacation in Santa Rosa Beach, Florida.

HUS is one of the most common causes of sudden, short term kidney failure in children. In severe cases, this acute kidney failure may require several sessions of dialysis to temporarily take over the kidneys' job of filtering wastes from the blood. This is where we are now as I write this description.

This is a helpful link that better explains what Will is facing... < http://kidney.niddk.nih.gov/kudiseases/pubs/childkidneydiseases/hemolytic_uremic_syndrome/

UPDATES IN REVERSE CHRONOLOGICAL ORDER

LATEST UPDATE FROM SARAH AND JOHN(09/04/07)

Will had a dr. appt. last week. Although his kidney function went from 42% to 41%, the protein in his urine was completely gone. Dr. Hunley said he'd rather have lower kidney function and no signs of protein than signs of protein with a higher %. He also said he thinks that's about all the function we will get back. A little disheartening to hear- but Dr. Hunley didn't seem to be bothered by it. Will should be able to function normally on the meds he is taking with that decreased function. Of course, I still believe in miracles- and we will continue to pray for one! Please pray that God will provide for Will to be healthy- regardless of percentages! We go back to the doctor in 3 months.

UPDATE FROM SARAH AND JOHN(07/30/07)

We got a good news call from Sherry, Dr. Hunley's nurse! Will's Creatine & protein are in the normal range FOR THE FIRST TIME since our hospitalization! I'm not sure the exact kidney function percentage. But, this is a great sign of, hopefully, good things to come! His potassium levels were a little high- Will is a potassium eater.... bananas, peanut butter, yogurt, milk, cheese, etc! We are being better about modifying the diet in hopes of bringing down the potassium. We go back in a month for more bloodwork to check the potassium.

UPDATE FROM SARAH AND JOHN(07/02/07)

It's hard to believe that it's almost been a whole year since the nightmare began! We took Will to the emergency room bright & early on July 4th last year. The past year has tested & strengthened our faith. The first night in the hospital we really weren't sure if Will would even make it. He had so many ups & downs. But, he's a fighter and very determined. That has been so evident to us in the last year as he has endured many obstacles! He greets the nurse who takes his blood with a smile, holds out his arm for her, and only exclaims a very sweet and calm "Ow" when she sticks him with a needle. I'm certain God has great things for Will's life and He will continue to provide for Will in ways only He knows. We continue to pray that kidney function will increase & keep giving Will the meds. But we know that the Ultimate Healer holds Will in His hands every day and will provide for Will's health as he grows through the years. Praise God that Vanderbilt is having a 'calm' ecoli season so far. I think Dr. Hunley said they have only seen one case so far. Will was the 9th or 10th case last year- and there were several cases to follow Will. I continue to try to reach Noah's mom, Amanda. I've left several messages which haven't been returned. I know they have gone through some tough family issues. Amanda was leaving Tim before they even left the hospital. There were issues before the stay at Vanderbilt- and those problems were worsened by a stressful month & a half at Vanderbilt. I will continue to try and reach her. I have no idea how Noah is doing- but pray God is healing him too!

We had VBS this past week and my neice & nephew came from KY. So, I was VERY busy- which kept my mind off of constantly thinking about when/how will go the dreadful ecoli! Pray for us on Wednesday that we will be able to celebrate the 4th with joy- and not dwell on the events of the last year.

Will had an appointment on Tues. His kidney function actually went down from 45% to 42%. Dr. Hunley told us to not get discouraged because there were other levels that were going in the right direction that are more important than the percentage. So, we will trust his knowledge and ask you continue to pray that Will's function will increase & all levels will return to normal (or close to normal). Right now Dr. Hunley is working hard to get the urine protein to normal levels- we are very close. But, he adjusted a medicine to try and help more. The nurse we saw accidentally didn't send the urine to the lab on Tuesday and Will's normal nurse found it the next morning. So, we have to go back this morning and do that part of the testing again! Our next appointment is in 2 months.

UPDATE FROM SARAH AND JOHN(05/01/07)

Will's kidney function decreased at the last check up in March. Now, it's creeping back up. We went from 39% to 45%. A slight increase... but we'll take it! We keep praying daily that God will restore his kidney function more each day. At this point, we've accepted the fact that Will probably won't get all function back. But, God can work miracles- and we keep praying for one for Will. Please continue to remember him in your prayers too! There were a few changes Dr. Hunley made to Will’s meds. So, we go on May 30th for follow-up blood work to make sure these changes are effective. Happy Birthday Will- his birthday is the 31st. Not a fun way to spend your birthday! He’s a trooper though!!! For this last appointment when the nurse was ready to take his blood, he held his arm out for her, didn’t cry & looked at her when she stuck him a said a sad, but calm, “OW”. Our next appointment with Dr. Hunley is July 10th. Thanks for your continued interest in what's been going on with Will. Besides decreased kidney function, he is such a healthy, ACTIVE almost-two year old! He and James keep us busy & bring smiles to our faces daily (and sometimes tears!). This whole experience has made us hold fast to them- and thank God for each day we are given with them... and for the daily blessings they give us in their individual ways!

UPDATE FROM SARAH AND JOHN(03/01/07)

We had another doctor’s appointment today. At our last appointment, Dr. Hunley was concerned by the increased levels of protein that have been in Will’s urine since we left the hospital. Back in September, the protein to creatinine ratio was 13. Normal for his age is 0.2… so you can see it was very high. Over the months it has been dropping very gradually. Dr. Hunley added Losartan to hopefully help decrease the protein amounts. It worked! His protein/creatinine ratio today was 0.5. He increased the amount of Losartan in hopes of getting it to normal- 0.2. We go late next week for more blood work to monitor this medicine increase.

Because the protein level dropped so much (which caused a slight increase in creatinine)- he said using the formula for calculating the kidney function would be skewed. Of course, I still insisted he calculate it because I knew people would ask. He calculated that the function has gone down to 39%. I was concerned/upset. But, Dr. Hunley seemed VERY reassured by the decrease in protein and not terribly worried by the increase in creatinine. He said the protein progress skewed the calculation- and that in time he may or may not increase function. It’s truly a waiting (and praying) process.

Will is a happy & fun toddler. He’s growing (2-inches in 2 months!) and learning every day. We go back on May 1st for another visit with Dr. Hunley. We are happy for the progresses made thus far. But, ask you to please continue to pray with us for an increase in Will’s kidney function.

Love- John, Sarah, James & Will

UPDATE FROM SARAH AND JOHN(12/23/06)

Just wanted to send a quick update on Will. We went to the doctor on Thursday... and Will gave us the greatest Christmas gift ever.... INCREASED KIDNEY FUNCTION! He went from 45% to 52 1/2%. The doctor said he thinks it could creep up some more- that was good news. He added one more medicine- to control the amount of protein in his urine. But if it will help, we will give it! Will is growing and happy- and just a normal 18-month old! He has really blossomed and we are amazed at how much his little brain soaks up daily. We go back sometime next week for bloodwork to monitor the new medicine. Then, we won't go back to Dr. Hunley for 2 months. Wishing you all a joyousChristmas and a peaceful, HEALTHY 2007!

UPDATE FROM SARAH AND JOHN(11/21/06)

Many of you have asked for an update. here it is...

I just found out from blood work we had done last Thursday that there wasn’t an increase in kidney function. He is still at 45% and has been that way for about 2 months. Still, we pray daily that God will work miracles and heal Will's kidneys. I'd appreciate your continued prayers too! I know what doctors say. But, I also know the wonderful mysteries of our God. Doctors may think this is all we will get back. But, we keep having faith that God will work miracles and restore more if not all of his function. Will is doing great- and to look at him you wouldn't know there was something wrong. His appetite still isn't hearty- some days he eats more than others... but what toddler isn't this way??? He is currently on 3 medicines and one vitamin. The vitamin was decreased to 2 times a week from 3 times a week (this is a blessing b/c it isn't covered by insurance and it's rather pricey... so now it will last longer!) We go back on December 19th for more blood work and another doctor appointment!

UPDATE FROM SARAH AND JOHN(10/24/06)

I have just come home from visiting Noah in the hospital. He had surgery yesterday to remove the colostomy bag and repair the colon. The surgery lasted just over 5 hours. Noah did beautifully. He was sleeping (on morphine) when I visited. They think they will be at Vanderbilt for 7-10 days. The really good news they found out just before I got there... Noah's kidney function was 41% at check in. Today, he was showing considerable improvements... 80%!!! That gave me hope that Will's kidney function could increase too. We pray daily that we will see great signs of improvement. Just wanted to update on Noah b/c so many have asked.

UPDATE FROM SARAH AND JOHN(10/19/06)

Another Dr. Hunely appointment today. Although we got a good report, his kidney function had not increased from the last check. He is still functioning at 45%. Dr. Hunley said this might be all we get back. Of course, he said the same thing when we were at 25%... so we will keep praying that God will continue to heal Will's body and increase his kidney function. He is still on all meds. He is taking 5 and will add a new vitamin which he will take a tiny dose 3 times a week. This one isn't covered by our insurance and a little on the pricey side. But, he needs it! Dr. Hunley's goal is to drop from 2 blood pressure medicines to one. We like the idea of doing away with meds rather than adding them! Administering that many meds several times a day grows old. We know he needs them to get better- so we just do what we have to do. Right now, we continue to ask for prayers for kidney healing/function increase. We trust God as the ultimate healer and pray He will continue healing Will's body. Our next doctor's appointment is December 19th.

UPDATE FROM SARAH AND JOHN(09/26/06)

We had an appointment with Dr. Hunley today. Will's kidney function increased from 25% to 45%!!! We were thrilled. We now continue to pray that the function will continue increasing until we are back to 100%! One more medicine was added- which we aren't thrilled about. This makes 5 medicines now! But, Will is a trooper... and, hey, what's one more medicine when you are already taking 4 others! The new medicine is another blood pressure medicine. His blood pressure was a little elevated. Also, his potassium is still in normal range. But, it is still running high normal. Dr. Hunley up-ed the amounts of 2 of his current meds to help regulate him better. Will's appetite is improving. Some days he eats more than other days. But, what 16-month old doesn't go through this??? We go back this Friday for another round of blood work. Our next appointment with Dr. Hunley is October 19th. It's a slow, long road to recovery. But we are thrilled with the progress thus far!

As for Noah, I've only spoken to Amanda through voice messages. We have been playing phone tag. From what I know, Noah is doing fine. He had 50% function- which decreased to 45% for some reason. He will return to Vanderbilt around the 3rd week of October to have his colon repaired and the colostomy bag removed!

UPDATE FROM SARAH AND JOHN(09/05/06)

We had a pediatrician visit today for Will's 15-month check up. I was worried he had lost weight. He was 25 pounds at his 12-month, lost 3 pounds while sick, and seemed to be loosing still. Today he weighed 25 pounds 4 ounces and is 33 inches long. So, I'm glad he has made up for lost weight and then some. Compared to James at this age, he is one pound less and 1/2 inch less. Not too shabby considering what all he has gone through! I was reassured that the eating issue was normal for kids this age. He may eat one meal a day... or somedays he may eat us out of house and home... and that is completely NORMAL, thank goodness. So, now I will relax somewhat about his eating! We meet with his kidney specialist, Dr. Hunley, on Sept. 26. I'll update then!

UPDATE FROM SARAH AND JOHN(08/30/06)

After 4 trips to the doctor in one week for blood tests, we finally got a break. His creatinine level (how they determine kidney function) dropped 0.2 points in four days. Before, it only dropped 0.1 in two whole weeks… so this is good news! His potassium level finally fell back into “normal” range. It was high normal… but normal nonetheless! We met with a dietician and discussed steps we can take to put Will on a low potassium diet. I was amazed at some things that are high in potassium! Did you know you can soak potatoes for an hour, pour off the water and rinse the potatoes before cooking them to make the virtually potassium-free? We did find out that his phosphorous levels were high. They put him on a new med for this (calcium carbonate). When these levels are high, it pulls calcium from the bones. Since Will is a growing boy, they wanted to get it under control. That makes 4 medications now! We are finally getting in a routine for giving them to him. He doesn’t like it AT ALL… but he’s being a little trooper! His appetite has increased a little bit. Some days he eats like a horse… other days he won’t touch a thing! The best news of all… we get a little break from going to the Children’s hospital to see Dr. Hunley… his next appointment isn’t until September 26th! He does have his 15-month check-up next Tuesday with his pediatrician. It will be nice seeing her for a WELL check! Please continue to pray for improvements in kidney function and appetite. Pray for all the little things out of whack (like potassium & phosphorous) to stabilize and that we can stop some of the meds. We are seeing improvements and are hopeful in that! I’ll post a new update after his Sept. 26th appointment.

UPDATE FROM SARAH AND JOHN(08/18/06)

We had another doctor visit Tuesday. We left thinking things were great… although, they had not yet gotten our lab results back when we left the doctor. When we got home, we had a call. Not so good- Will’s potassium level was really high. They decreased his milk intake by ½. He also needed to lay off potatoes, bananas and other starches. Here’s the problem… he is eating minimal things. The only things we can get him to eat are oatmeal, mashed potatoes, mashed bananas, yogurt, pudding & mac-n-cheese (most of these are potassium-loaded and seems he won’t be able to eat). This would explain the high potassium. But, now we are faced with the dilemma of what to feed him! They have also added another medicine and have increased one of his current meds back to 3 times a day from twice a day! One med has to be taken with food. Do you understand the vicious cycle???? He needs to eat…but will only eat things he really shouldn’t eat right now… and can’t take a medicine without eating… it’s a constant guessing game! He also lost a little over 3 pounds in two weeks. Since he still was retaining fluid at the last check-up, this weight loss wasn’t alarming. His “puffiness” is completely gone! We went back two days later on Thursday for another round of blood work! The potassium has gone down a bit is still a little high. Until his kidneys are back to normal function, I guess his whole body can easily get out of whack! His kidney function has not improved in the last 2 weeks. He is still only functioning at 25%. Dr. Hunley is hoping for more improvement. But, there is always the slight chance that this is all we will get. As far as his demeanor, he is back to normal. We are seeing more of old Will everyday! He is very active and very talkative. He’s soaking up his surroundings like a sponge and we see him getting “bigger” day after day. He still isn’t walking- but I think that will happen anytime.

Noah update: He did go home last Tuesday (August 8th) WITHOUT a feeding tube. He is doing so well at home! He is eating decently- better than in the hospital. Amanda seemed positive and excited about his progress. He’s a bit anxious when Amanda leaves his sight… but this is normal. Will is going through similar attachment issues.

As for the prayer pager, WOW what an encouragement that was for us. We appreciate all the “buzzes” we received and know many more prayers were lifted up for us than we were buzzed. However, the pager is being “retired”… it will be all work and no “pray” for this little pager now ! Please continue to pray for Will’s recovery. He has come a long way since we left the hospital. But, he has a long way to go to be completely healed. Pray for increased appetite (or that his food cravings will broaden). Most importantly, pray that he will have signs of increased kidney function. Your prayers have carried us through this entire experience. I know prayers will see him 100% back to normal. It seems it could be a long road to recovery- but through the power of prayer we will make it!

UPDATE FROM SARAH AND JOHN(08/07/06)

We’ve been home a little over a week now! And, we are ALL adjusting nicely to home sweet home. After 4 nights of sharing our bed with Will, we finally coaxed him to sleep all night in his own bed… and he’s been doing that ever since. For awhile, it was like having a newborn again! His appetite still isn’t back to normal. He was a child that would eat anything and everything put in front of him. Now, he turns his nose up and spits out quite a few things! He still really just wants bland things- yogurt, grilled cheese, etc. I guess once his taste buds are back to normal (I understand all the medicine and IV stuff does crazy things to the taste buds) he will begin eating more things. That being said, he is definitely eating more than he did in the hospital! The swelling is almost gone- only his feet are still a little swollen. He is back to the ole Will- smiling, crawling and finding all the “no no” spots! We had a doctor’s visit last Tuesday. His blood levels are improving and looking good. Dr. Hunley decreased one med he was taking 3 times a day back to twice a day! I found out he only has about 25% kidney function. At first I was alarmed by this, but was assured it’s normal and in time (like up to a year) he should regain all function! We will go back to Dr. Hunley on the 15th for more blood work and a check up!

As for Noah- he is still in the hospital. On Thursday, he started throwing up with diarrhea again. They ran viral cultures on him. He is doing better- although they did have to put a feeding tube down his nose. This helped him keep stuff down. He can still eat and drink. But, this is there if there is a need to supplement. The doctor said he may get to go home on today or tomorrow! He will have to go home with the feeding tube… but he will get to go home nonetheless! Amanda is a nurse- which is a blessing. Noah will return to Vanderbilt hopefully sometime in October to have the colostomy bag removed and his colon repaired. I firmly believe that once he is out of the hospital, he will improve greatly and quickly! That was true of Will and I know the same will be for little Noah. Pray for them. They are going home to some unspoken uncertainties- and the adjustments to being home after over 7 weeks in the hospital will be difficult. They have a 3-year
old daughter named Chelsea. I’m sure she’ll be glad to have her little brother home!

We thank you for all you have done and all you are doing. Will is home- and that is an answer to prayers. He still needs prayers as his little body continues to strengthen and his kidney function returns to normal. Prayers got him this far- and will continue to guide him through the recovery!

FOLLOW UP FROM ME (UNCLE SCOTT) ;) (08/02/06)

Will returned to Vanderbilt yesterday for a scheduled check up. All signs are still showing improvement. He has about 25% kidney funtion (expected to increase) and all levels are heading in the right direction. He is getting back into the routine of being a 14 month old boy and at home!

Sarah said she checked in on Noah who was still there. She asked for continued prayers for him and his family. They have been there for over six weeks and it is bound to be wearing on them. She knows the difference now having watched Will quickly adjusting at home.

GOING HOME DAY UPDATE FROM SARAH AND JOHN "LEAVING TODAY!!!" (07/29/06)

The resident just came in and told us that we are going home today! It's been such a long road. We are overly excited to be headed home. But, we are also a little sad to leave the friends we have made during our stay. The nurses and all staff have been so gracious and there for us whenever we needed something. Noah isn't ready to leave yet. He still isn't eating- but hopefully he'll be headed home first of next week. Continue to pray for them. They aren't certain when they will go- but they are very ready! We are coming back on Tuesday for an appointment with Dr. Hunley. I assume will be visiting him regularly for some time! I'll send one last update in a week or so to let you all know how we have adjusted to being back home- and if our doctor's visit has any news. Thanks for being with us on this crazy road. Your prayers and support have meant the world to us- we couldn't have made it through without them!!

FRIDAY UPDATE FROM SARAH AND JOHN (07/28/06)

Well, when things actually start to move around here... they really move fast. We were expecting to have Will's surgery to remove his main IV line and his dialysis catheter on Saturday or Sunday. A resident just came in to have us sign papers for our surgery which will take place about 4:00 pm today. He also said we are scheduled for discharge on Saturday. I don't know if that will happen- Will has stopped eating. He isn't interested AT ALL. They may keep him an extra night or two to monitor... or they may really send us home on Saturday for us to monitor. We have gotten conflicting details from 3 sources. We will work through all that tomorrow when his main doctor checks in. But, we do know for sure that he will be in surgery sometime today to have lines removed! We'll keep you posted as we know more. Pray for those doing the surgery and pray that Will pulls through without complications. Also, pray that Will has a coming appetite!

WEDNESDAY UPDATE FROM SARAH AND JOHN (07/26/06)

Today marks 3 weeks and one day! Monday Will started eating solids. He did a good job- and seemed to be glad to have real food for a change. His body wouldn’t allow him to eat a whole lot. But, it was so good seeing him happy to eat again. Tuesday morning at 9:00 the dialysis nurses came to our room and wheeled the dialysis machine away! Can’t say I was sad to see it go… although I will miss seeing Michelle and Sherry (the nurses who were in daily to set up each round of dialysis). The scrapbooker in me took a picture of Michelle waving as she wheeled it out! Last night Will was taken off TPN and lipids (his IV nourishment). The hope now is that he will start eating and drinking enough to sustain his nutritional needs. They are also are giving him lasix to help get rid of some of the extra fluid. But, for the meantime, he looks like a Sumo wrestler!

Today they have also taken him off of all 3 antibiotics. So, after the lasix, there will be no reason to hook him up to the IV line again! This morning, Dr. Yang (Will’s surgeon), came in to talk about doing the surgery to take out his dialysis catheter and the central line IV. He thought that would happen sometime this weekend or early next week. He also said that removing these lines would be the start of our way out the door! When Dr. Hunley (the kidney specialist) came in he said Dr. Yang would take out the catheters either on Saturday or Sunday! Things are progressing nicely- Will is gaining strength and showing signs of his personality! Our main concern right now is the bloating. He weighs 30 pounds and we think 5-7 pounds of that is extra fluid. In time, the puffy will end as his kidneys get back into the swing of things… and hopefully the lasix will help take some of the puffy away too! I may send out one or two more updates- to let you know how surgery went to remove the catheters and when we are expected to leave the hospital! Scott has posted a few more pictures- including one of a prayer quilt loving women from his church made for Will! He, too, is going to take pictures and Will and Noah together… they are friends by circumstance.

We are so glad God put the Perry family on our hall- it’s been nice having others going through the same thing to lean on! Noah is doing better. He is having a hard time eating and keeping it down. When you haven’t eaten in over a month, it is a little hard to find the desire to eat again! We thank everyone, those we know dearly as well as those we have never even met, for your love and support over this last, very long and emotional month. We have been touched by so many and are amazed at how many people Will’s story has touched. This has been a true testament to the power of prayer.

John & Sarah

SUNDAY UPDATE FROM SARAH AND JOHN (07/23/06)

Another good day. Will is awake more during the day. He is also more alert- babbling and smiling some! When he cries, it’s the ole Will cry… not the feeble, weak cry we’ve been hearing the past few weeks! He seems to be improving. And, YES, we are still getting wet diapers. He has had 4 or 5 daily for the past 2 days. The kidney specialist came by b/c they were planning to continue dialysis today. Due to his wet diapers and the fact that the levels during blood tests all look good, they decided to not hook him back up today. They will continue to monitor his diapers and keep a close watch on his blood levels. If they feel it necessary, they may hook him back up to the dialysis machine at some point. We are hoping and praying it won’t be necessary! His body is still REALLY bloated. They are giving him meds for it. Now that the kidneys are partially functioning, we anticipate him losing the “puffy”ness.

The tube in his nose (which he pulled out 5 times) was taken out for good yesterday. The surgeon came in bright and early Saturday morning & told us he would probably have it removed “sometime soon”. Thirty minutes later Will “removed” it himself… and the nurse was told not to put in back down his nose!

I forgot to mention a day or so ago; Will is able to now get out of the room. They have buggies for us to put him in and give him a ride around. There is a courtyard outside that is our favorite. I feel it does him good to feel the sun on his face and fresh air in his lungs! My brother took pictures of one of our “adventures”. You can see them below. Will has also started eating jello and sipping clear liquids. His old “eat anything” appetite isn’t back yet. But a bite or two of jello here and there is a step in the right direction! The surgeon checks in on us twice a day and his happy with his progress. Things are looking up. And, we will welcome visitors again. We feel we are definitely climbing out of the valley!

We thank everyone for their love and support during the past 3 weeks. God has richly blessed us. From food, to prayer pages, to cards, gifts, visits and calls… you have reached out to us in ways that amaze us. We are blown away when we receive letters or emails from people from all over the world who have heard our story b/c it was passed to them by one of our faithful friends. Several nurses have come to our room who heard of Will from their church’s prayer list. We can’t always figure out the connection between our family and their church- other than the fact that it’s a community of believers sticking together and praying our family through this. The last 3 weeks have been a crazy rollercoaster. I’m certain we wouldn’t have made it this far without your love, support and, mostly, your prayers. Give praise to God for His wonderful healing. Pray we stay infection-free and that Will’s little body will regain strength and wholeness. And, pray that his kidneys will regain full function… pray for more pee pee! Also, pray for James & any uncertainties he is feeling from being separated from us for so long.

John & Sarah

PS- A quick Noah update- they are still here and it’s been 40 days. Noah is improving greatly- he is much stronger and very playful. In fact, he isn’t here any longer for his HUS. He is now healing from complications due to infections. He was on a morphine drip and that IV was taken out b/c it got infected. Now he has to overcome a slight morphine “addiction”. It should only last a day or two- but it is an emotional ride for Noah and his parents. When he finally goes home, he will go with the colostomy bag. They will return to Vanderbilt in 6 months to a year for surgery to fix his colon.

SATURDAY UPDATE FROM SARAH AND JOHN (07/22/06)

We have had a few more good days! The best news…. WILL HAS HAD 3 PEE PEE DIAPERS SINCE LAST NIGHT! I’m only giving you the next details so that you can understand the significance… Previously his diapers were weighing 20-30cc. Last night he had a wet diaper that weighed in at 150cc! The two today were 60cc & 30cc. There are signs of kidney function! We started dialysis back yesterday. There were several complications. He wasn't draining off near the amount they were putting in. And the draining phase was taking way longer than usual. The good news, he wasn't in any pain during any of the three cycles (fill, dwell & drain). Pre-surgery, it was all he could do to make it through the fill & drain cycle. He would ball up and cry b/c of the pain. So, praise God that the pain was gone post-surgery!

The explanation (for low draining post-surgery…) could be a blocked catheter or scar-tissue or inflammation from the infection and surgery. We aren’t sure the exact cause. This afternoon they did an x-ray to make sure nothing happened to the dialysis catheter during the scope/surgery on Wednesday. According to the x-ray, all is well there! Dr. Hunley came by today and ended the dialysis session. Will is going to be off dialysis the rest of the day and part of tomorrow (See "The Ride" pictures below). We are giving his kidneys a chance to take over. They have been closely watching all blood work- and say the levels are all normal and there isn't anything that would make them insist he continue the dialysis. Now we pray HARD for more pee pee and for the kidneys to kick start fully again. If his kidneys prove they are fully functional, we will no longer need dialysis. If his kidneys still need help, we will have to figure out the next step. Two choices: figure out what is causing the trouble with the dialysis he is currently doing OR insert a new catheter and start hemodialysis. We hope to avoid the hemodialysis b/c it would require Will to be put under again to insert the catheter. And, a new catheter is also a new way for more infection to get in his little body.

We are seeing signs leading us to believe Will is starting the road to recovery. Pray that things move forward without complication & for the kidneys to do their job without any help! Keep on praying for pee pee!!!

FRIDAY UPDATE FROM SARAH AND JOHN (07/21/06)

Will has had two decent night’s sleep… which means so have his parents! The surgeon visits daily and thinks Will is healing nicely. He has had some pain- which pain medications control. He will probably start today on dialysis again. They will continue doing the peritoneal dialysis (PD). Switching to the hemodialysis would require him to be put under again to insert the catheters. It also could subject him to more infections in the blood. The surgeon said the PD shouldn’t do anything to the site on the colon that was sewn up. It could cause the incisions where they went in for the scope to leak. We will just have to watch that very carefully. He also said he examined all the bowels/colon during the scope and didn’t see any other areas that looked weak (or that could rupture). Good news- yesterday they removed the “contagion precaution” sign from the door. That means the nurses and doctors no longer have to gown up to come and check on us. It also means bacteria didn’t grow in Will’s cultures- now it’s time to hopefully start the road to recovery. We, too, can take Will out for buggy rides from time to time and get him out of this room! He still is annoyed by the tube in his nose, but he seems to pull at it less (he has pulled it out 4 times- the determined little thing!). Pray for complication-free & infection-free dialysis! Pray that Will’s little kidneys will wake up and do their job. AND, PRAY FOR PEE PEE! Once we start the dialysis and see how it’s going, we will welcome visitors again. It’s comforting seeing familiar faces from the outside world!

WEDNESDAY UPDATE FROM SARAH AND JOHN (07/19/06)

I know many of you are wondering…. I have good news FINALLY! Last night, we had our 2nd ct scan and it showed somewhere there was a leak in his bowel area. Surgery came to our room & got us up to speed. It wasn’t so concerning that they would rush him down that night. So, we tried to get a little shuteye in preparation for what could be a long day today. At 7:45 this morning, the student nurse came in our room and told us that surgery was on their way up to take Will down. We were expecting them somewhere between 10 & 3- so the early arrival was unexpected but very welcomed! They wheeled us down to pre-op and talked us through what was about to happen. We drenched Will in last minute kisses and cried and prayed as they wheeled him away. We sat and waited in the waiting room. About 1 ½ hours later, we were called back to a “sub waiting” room. It was there that Dr. Yang took us to a consultation room & told us what we had been praying we would hear! Will came through without complication. They did the small incisions and entered with a laparoscope. They did find a tear at that base of his colon. It was pressing against his appendix- which was keeping it “sealed” to where it wasn’t leaking bile all the time. The good news- the tissue was healthy and they were able to stitch up the hole using the laparoscope- rather than making a big incision across his stomach! Will is sedated and resting comfortably!

What now? We are cautiously optimistic. There is always a chance for infection from this “surgery”. Also, the stitching could come undone- or another tear could occur. Right now, they have a tube down his nose draining stomach gases and acid to prevent the colon from expanding. Pray for this tubing. They put it down last night- and Will has already pulled the tubing out twice! This will be a constant battle keeping his little hands away from it! Should an infection or retear occur, we would be at risk of having to do the bigger incision and possibly have a colostomy bag put in. Pray for infections to stay away from his little body so that healing can begin. As for the dialysis, they won’t be doing that for at least 2 days to give his suture time to heal. During the time off of dialysis, they will be closely watching his blood counts to see if there are increased signs of kidney functions. We will also be watching the diapers for pee pee. Should his kidneys show signs of improved function, we may not have to use dialysis again. If dialysis is needed again, they will weigh the options (continue on with the peritoneal dialysis or put a new catheter in and do hemodialysis). We will cross that bridge when we get there. In the meantime, keep praying for pee pee!!!!


Those of you who know about this, thanks for calling the prayer pager that was given to us! (See info above this update for more details) While Will was in surgery/recovery we got over 75 pages! John told the docs (who wondered why we were being beeped so much) that it was faithful friends lifting the doctors and us up at that moment. Our bodies are physically and emotionally exhausted right now. It’s God and your prayers that have given us strength to go on! I hope to send more and more positive updates.

Sarah

TUESDAY UPDATE FROM SARAH AND JOHN (07/18/06)

We had another restless night b/c Will couldn't seem to get comfortable. He kept grunting. Around 3AM I noticed a change in the color of the fluid being pulled out during dialysis... it was brown, the color we had been warned about. I've been watching the bag like a hawk - so I noticed it immediately and called the nurse. They did an x-ray and called in surgery to consult. It appears that there has been a perforation in Will's bowels. The x-ray showed the same as the x-ray taken a couple days ago. They aren't sure the extent of the hole. All his vitals are normal & no fever or throwing up- so they consider him very stable. He is resting comfortably and doesn't seem to be in any pain. They are continuing the dialysis to pull out any extra toxins. And the antibiotics that he is already on will hopefully help prevent many further infections. At "some time today" they will take him to surgery and look around the area using laparoscopic scope. If they find a need to do surgery, they will do so at that point. Pray there is no need for surgery and that the hole, if there is one, is small and can fix itself. If there is a significant hole, pray for the surgical team as they prepare & work on Will's little body. Also, pray for our strength... we are going on about 4 hours sleep for the past two nights total. Right now we ask for no visitors- until we know more. Your prayers are very much welcomed and have helped us carry the burdens thus far over the last 2 weeks! I'll update as I can.

Sarah

MONDAY UPDATE FROM SARAH AND JOHN (07/17/06)

We have had 2 restless nights. The peritonitis is causing will to wake every time the dialysis fluid is put into his body and drained out. It is getting better with each passing moment. But, the output fluid is still cloudy which shows there is still infection. They are running tests to make sure they are treating it with the right antibiotics... but it takes 24-48 hours for anything to "grow" from the culture. Last night 2 children "coded" on our hall (one of which is an HUS patient)- which understandably caused more noise. It was hard to sleep knowing what two other families were going through. We found ourselves drifting in and out of sleep praying for those children and their parents. Both children are in ICU now recovering. Will woke off and on all night seeming to be in pain. After watching and waiting for a while, I began to think his trouble was a need to make a dirty diaper. After about an hour, he had luck! When I was changing the diaper, we found another gift... he had actually pee peed again! Yes, that is a good sign. But, we are hesitant to celebrate excessively because it seems when things start going well; we have something that knocks the wind out of our sails. That said, we still were excited to see a second wet diaper. When the kidney docs came in this morning, they told us his platelet count was in the "normal" range. It hasn't been normal in over 2 weeks- so that was encouraging. We find ourselves praising God for small signs of kidney function. And, we plea with Him to rid Will's body off all the infections and to keep his colon/bowels strong and intact! A resident said she thought we are seeing signs of good things to come. Perhaps we are starting the long hike back up the hill! Please continue praying for Will’s recovery!

Little Noah is improving. He is more active and alert. He still is having trouble with infections- mainly where his incision is coming back open. But every time I see him, he seems to look better and better!

SUNDAY UPDATE FROM SARAH AND JOHN (07/16/06)

What a roller coaster.... I wanted to pass a quick note to keep the prayers going. Yesterday Will woke from a peaceful nap in horrible pain. They medicated him and took x-rays to see if the colon or bowels were tearing. They x-rays did show signs of "air" but the doctors and the radiologists believed it to be from the catheters not from tears. On Friday he was taken off one of his antibiotics b/c it seemed his peritonitis was getting better. Last night they put him back on that antibiotic b/c it appeared his peritonitis was coming back and that was causing the pain. His white blood cell counts when we first found out about the peritonitis were 18,000. After 2 antibiotics the count went down to 200. Yesterday they tested again and it had gone back up to 1,800…? (a sign that the infection isn’'t gone, and could be coming back). They still are concerned that there could be tearing.

As you read this, please pray that all Will’'s internal organs will stay strong, intact and TEAR-free! Pray that this round of antibiotics will clear up the peritonitis for good and that we can start our road to recovery. His vitals are all great- blood pressure, pulse, temp, etc. We are just now dealing with the chance of rupture somewhere in the colon/bowel line.

SATURDAY UPDATE FROM SARAH AND JOHN (07/15/06)

Just a quick little note to let you all know that last night around 7pm, we changed what we thought was just a dirty diaper.... only to find that Will had pee peed! He hasn't done it again since.... but there is sign of action!! We are waiting on the daily kidney doctor visit and will send a more detailed update later. But, we are so excited to have pee pee and wanted to share it with all who have been faithfully praying for a pee pee diaper!!!! We understand it might not happen again for a few days- but we are thrilled for the sign of good things to come!

PREVIOUS UPDATE FROM SARAH AND JOHN (07/13/06)

The past two days have been good ones… of course- they still have had bumps in the road. We found out Will had an infection in his blood (probably from his main line IV) and they started him on an antibiotic. There are signs of improvement there! Yesterday we found out that there is now an infection in his stomach probably from his Peritoneal Dialysis line. The infection is called peritonitis. It’s causing terrible pain during the dialysis cycles when the fluid is put into his body and later drained out. This infection could also cause thinning of the walls of his intestines/colon; which could, in turn, cause a rip/rupture in the wall (which is what happened to little Noah- the one I told you about last email). Our biggest prayer request right now (other than for pee pee!) is that his organs will all remain strong and tear-free! They did start him on 2 more antibiotics for this infection. One is being given through his IV line and the other is put into the dialysis fluid and going right to the root of the problem during his dialysis cycles! Hopefully this will take care of the infection before it causes greater problems in his body. His blood work is showing signs of improvement! Levels are increasing and showing his body starting to come around! Still no big signs of pee pee… but we are patiently waiting!

Last night, Will had another blood transfusion… and it worked wonders! He perked up immediately. We started seeing signs of “old Will” coming out- like the silly crooked point and the endless babbling. He even smiled, laughed out loud and tossed a ball! Not a big deal on any other given day… but this was the first smile in almost 2 weeks! You can imagine the joy it brought to us!!! We feel so blessed to be at such an excellent facility. The care we have received has been top of the line- and all the nurses, doctors, students, etc have been caring and sympathetic. We even had a nurse stay 1 ½ hours past her shift when we were having a “hairy” moment to make sure we were okay. That same nurse popped in days later to see how he was doing. We are still so grateful for all the words of encouragement and prayers. It’s what has gotten us this far! I don’t think we could keep going strong day in and day out with out all the prayers that are being lifted up for us!

PS- Noah still continues to need prayer. He has come across so many crazy obstacles during his HUS treatment. Tuesday he struggled with high blood pressure. Yesterday, the incision from his emergency surgery when his bowels ruptured started coming open on both ends. His little body has endured so much! But, he is so strong and continues to fight a good fight. (For those new to the email list, Noah is a 17-month old little boy who has been at the Children’s Hospital for almost 5 weeks fighting the same thing as Will).

PREVIOUS UPDATE FROM SARAH AND JOHN (07/10/06)

We found out Saturday that it was for sure an Ecoli bacteria causing all our trouble. Sunday evening and all night were rough for little Will. They gave him his 3rd transfusion on Sunday afternoon. The first two transfusions were 100ml. This 3rd one was 150ml and from the same donor as the first two. He had a hard time with the extra 50ml. Around 6:30, we noticed some changes in his appearance/behavior. He was very short of breath, agitated, and his skin appeared blotchy. His blood pressure was up as was his heart rate and he had started developing a fever. They did a chest xray on him and found small amount of fluid in the lungs- which was causing most of the problem. They immediately started to treat and he is slowly doing better. Today he has slept a good bit- making up for lack of sleep in the last 24 hours. They decreased part of the iv fluid/nourishment to help decrease the fluid in the body/lungs and also added more “sugars” to the dialysis in hopes of pulling more toxin fluid out! We talked to the kidney specialist and she explained all of the above to us. She also told us we still have a fight ahead. He isn’t declining- but we haven’t started that uphill climb back to good health yet. We consider ourselves in the valley. The doctor said it takes 7-14 days to see signs of great improvement. Right now they are starting his 5th round of dialysis. The good news from the 3rd transfusion, we are seeing better counts when they do blood work and signs of improvement there. There are hints that there maybe an infection (not ecoli- something else) and they have started him on an antibiotic today for that. The fluid in the lungs is temporary and go away as healing continues. He is drinking apple juice and water and keeping it down. Mrs. Sherry even got him to eat a couple cheerios yesterday. As he is more tolerant of food, he will gain more and more strength! AND, we have seen trace…. VERY TRACE signs of pee pee! They are just tiny drops…. But I’ll take that over no drops any day!!!! I’ll keep you all posted, as we know more. Thank you for all the prayers, the addition to numerous prayer lists and forwarding our story on to fellow prayer warriors! John and I are doing amazingly well- and we give all credit to the power of prayer!

On a side note, we met the mother of another HUS/ecoli 17-month old yesterday. They have been in the hospital just over 4 weeks. The little boy’s name is Noah- and has had numerous complications and emergency surgeries for things such as a ruptured colon. He is gaining strength and even began to wet diapers yesterday, I think. They live 90 minutes away and have the prayer support we do- but not the physical support due to distance. We have shared some of our yummy food with this family. You all have been so generous in all the acts of kindness to our family. We wanted to share our wealth with our new found friends!

PREVIOUS UPDATE FROM SARAH AND JOHN (07/07/06)

He started his first wave of dialysis yesterday around 3:30. He was having a little discomfort from it so they gave him the smallest dose of morphine possible. It took immediately- his little body became very still and he was able to get some MUCH NEEDED solid rest. In fact, since yesterday at 4:00 he has probably only been awake 1 1/2 hours. His vitals are checking perfect so there is no alarm for the large amount of sleep- it's just his bodies way gaining energy and getting better. The dialysis treatments last 20-24 hours- and the first one ended around noon today. They then came with a whole new round and he is currently taking his second dose. With each round, toxins are being taken out of his body in hopes of restoring kidney function. Once there are signs, they will cut back on the frequency/time of treatments. Also, his platelet count was decreasing again and some other levels that shouldn't be decreasing... so he is currently taking his 2nd blood transfusion which should end by 4:30. Hopefully this will be the last needed transfusion!

I think God has a great sense of humor.... and we need to pray for pee pee for Will! I am so looking forward to changing that wet diaper! Continue to pray for rest, comfort and gaining strength. Every day seems a little better than the last. We appreciate all the kind gestures through emails, visits, food, phone calls, etc. But the prayers, by far, mean the most. We know there are people in numerous states praying- and have found our family on SEVERAL church prayer lists all over the country. We can feel it! We are glad to have the Great Healer on our side and continue to be faithful to His plan.

PREVIOUS UPDATE FROM SARAH AND JOHN (07/06/06)

Will had a blood transfusion yesterday afternoon and perked up soon after. He was fussy and fidgity... which was a good thing to see. Around 8pm, we took him down to surgical to have a shunt put in for the dialysis and a iv in the chest to free up his arms (and his thumb sucking thumb!). They did put him under (which scares any parent). By 10:30pm he was in recovery and back to the room by 11:15. No complications- praise God! He was on pain medication which relaxed him. We were able to get better sleep than the previous night. He's improving slowly. Everyday has it praises- and sometimes we experience annoying side effects. But, we roll with the punches and do all we can to keep him as comfortable as possible. We are set to have our first dialysis in the next few hours. Once the process begins, it was take several hours- but can be done in the comforts of our room luckily! They did say it would give him some discomfort when the fluids are going in and when they drain the toxins back out. They will give him something for that. Mainly pray for Will- that his discomfort will be minimal- and that the procedures will work in record time so that it won't be a drawn out process. Pray his little weak body will fight, fight, fight and regain function in his kidneys. Mainly, we want him back to his old self and out of the discomfort. Thanks for the prayers (and everything else being done!)- we REALLY do feel the peace from them!

PREVIOUS UPDATE FROM SARAH AND JOHN (07/05/06)

Some of you don't know what has been going on in our lives over the past few days so I'm going to fill you in. For others, I will also update! First of all, I want to thank everyone for the phone calls, visits, text messages and mostly prayers for Will.

We spent last week in Florida and had a wonderful vacation. On our way home, Will get sick. He continued to worsen over the next few days and ended up in the pediatricians office on Monday after I found blood in his diarrhea. They sent us home and we slowly gave him liquids. Yesterday morning, he was worse and we headed for Vanderbilt Children's Hospital. They ran all sorts of tests- blood, stool, x-rays and ultrasounds. They became concerned when the ultrasound showed trouble spots- so they admitted us to the hospital. Long story short, they believe Will has HUS (Hemolytic-uremic syndrome) cased from possible ecoli or some other bacteria. We should find out any time now if it was from ecoli. The levels that should be rising are dropping... and the levels that should be dropping are rising. So, they are monitoring him and once it gets to certain levels- they will probably do a blood transfusion and later dialysis. If that is needed we could be here for up to 3 weeks. Our pediatrician came today- and eased our minds a bit. His body has to fight off the bacteria. And, his kidneys need to start processing urine. Pray for that to happen. If dialysis is needed, pray for the success so that we won’t have to start thinking transplant- which would be worst case scenario. Mainly, pray for his weak little body to start gaining strength so that he can fight with all this might.

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