Updates on Sara Kate

Sara Kate's Follow up & Bryce Update

2006-07-27T20:59:00.000-04:00

Hello friends & family~

We just made it back in from Knoxville for Sara Kate's follow up appointment. It went well. Her blood pressure was really good (or good for her) it was 99/59. So, apparently, the new medicine is working and we're just supposed to keep the current regimen. They drew labs while we were there also, but I don't know the results of them. I suppose they'll call if something is wrong, so I'll assume that no news is good news. But, I may call tomorrow and check on them....ya'll know how I am. Assuming her lab work is good, we do not have to go back to the doctor for 2 weeks.

Bryce is seemingly well now, he has not had any poop of any kind for two days now. (I can't believe I'm talking so much about poop....who knew?) Dr. Malagan saw him and felt like he was over everything. Please continue to pray both for Sara Kate & Bryce that they will continue to heal and not become reinfected.

I was able to meet Janet & Mark, whose two daughters have been hospitalized in Knoxville. Kelsey got to go home just today, so they were very glad about that. Lexy, the 4 year old who has HUS is doing okay, but they have had a very difficult time. Her central line got infected and had to be replaced and her dialysis catheter isn't draining well. Please pray for them. Specifically that her BUN and Creatinine will go down so that they will not have to put her back on dialysis. If they need to put her on dialysis, they will have to go to surgery again to replace it. Also, the hallucinations that Lexy is experiencing are very difficult on the parents. Again, please pray for Lexy, Mark, and Janet.

We thank everyone for their faithful prayers and genuine concern for our family. Please, do continue to pray for us.

Much love & Many blessings,
Shana

Bryce Update #3

2006-07-26T10:03:00.000-04:00

Hi guys!

I just wanted to let you know that Bryce is doing a lot better. Yesterday he only went to the bathroom a few times all day long, and after he ate supper he didn't go at all. So, I feel like he is almost over it. Bryce did so much better with it than Sara Kate.

Both myself and my doctor have talked to the health department people, and they have also talked with infectious disease doctors. Right now, they are thinking that Bryce did NOT get it from Sara Kate, and that it is a secondary exposure. We still don't know from where. But the state lab is going to do tests on all of the cultures they have received (Bryce, Sara Kates, and the other girl from Chattanooga who is in Knoxville) to somehow tell if they all came from the same place. We had our water tested (both from the freezer dispenser and the faucet) and it came back fine. I still would like to know the source so that it can be avoided in the future. And I also ask you to continue to pray for protection for Sara Kate (and Bryce) that they not get it again.

Sara Kate has a follow up tomorrow with Dr. Malagan in Knoxville. I will update ya'll tomorrow night about her progress. She is doing really well, but I can't check her blood pressure at home so I don't know how it is doing. Hopefully, the new medication is working and it will be lower.

On an unrelated note, our adoption social worker came on Monday to do our home visit. That is the last step in the home study process, which puts us closer to getting Malagan. We still have to submit the homestudy (within our dossier) in September and then it will be about a years wait until we actually get a referral (baby assigned to us). So, we still have a long wait, but I thought ya'll would be happy to know that we are one step closer to Malley.

Thanks everybody and please keep praying for protection and good health!

Shana

Bryce update #2

2006-07-24T21:55:00.000-04:00

Hi friends & family,

We had a fairly good day today. We have been encouraged all day because Bryce went through the night without having to go to the bathroom (quite different from the nights before) and also, the number of times he's having to "go" has decreased. In talking with our pediatrician today, she said that hopefully means he's turning a corner and starting to get over it. We pray that that is the case, and Bryce will be back to normal soon. We are so thankful that his little body has fought it off so much better than Sara Kate's. And, we pray that it continues to fight it off until it is completely gone.

Also, we have talked to someone from the public health department, and we're working on trying to find the source. We had the utility company come by today and check our water. We had him check from our freezer door water dispenser and from the faucet, and we'll hopefully know those results tomorrow. We will be talking to a pediatric infectious disease person in the next couple of days to further explore possibilities. We are not entirely sure that it is something in our home simply because we have heard of a couple of other E. Coli cases in the Chattanooga area. So, maybe the investigation will shed some more light on it, now that other families are surfacing.

Speaking of other E. Coli cases: I received a phone call today from one of our nurses from Knoxville. She was asking if I would speak to some parents who are there currently with a daughter who has HUS. I, of course, was glad to and hope that I was able to encourage her in some way. But, please pray for them. They had a very similiar story to ours, in that they are from Chattanooga and they were at TC Thompson's and transferred, etc. However, their daughter is 4 years old, and they also have an 8 year old that is also hospitalized in Knoxville. The 8 year old did not develop HUS, but did develop some Colitis from the diarrhea frequency. So, they have two children in the hospital in Knoxville, and a 1 year old son at home who also had a bought with E. Coli. The mom was really struggling emotionally, and I've totally been there, it is SO hard; at the very least I was able to tell her that I understand and that IT WILL GET BETTER! But please pray for them. The 4 year old's name is Lexy, and the 8 year old's name is Kelsey. They are expected to be in the hospital with Lexy for at least another week.

Again, I would also like ya'll to pray for protection for Sara Kate, that she will not get it again! And please continue to pray for Bryce, that his body continues to fight it off well, that his labs continue to look good, and that the infection is at it's end. And, then don't forget Lexy and Kelsey and their parents.

Thank ya'll so much!!!

Shana

PS- We'll try to put pictures of the kids on the next post.....I have to have Brad's or Scott's help with that!!

The saga continues........Bryce Update #1

2006-07-23T13:23:00.000-04:00

I can't even believe that I am typing this..... but as many of you have heard, Bryce started having diarrhea on Monday. We were concerned, but really didn't believe it could possibly be E. Coli...especially from the same source. We even spoke with Dr. Malagan about it at Sara Kate's follow up on Wednesday. However, it has progressively gotten worse, and has now been confirmed that it is E. Coli, and it is also suspected to be the "bad" strain, just like Sara Kate had. The culture is being sent to the state lab to confirm.

We are praying that it does NOT develop into HUS. Dr. Malagan said that only 3% of patients with the "bad" strain go on to develop HUS. And, usually older children do not go on to develop HUS either. So, those are very good signs. Also, Bryce is playing well and otherwise acting very normal, except for when he goes to the potty (which seems to cause him a good bit of pain), so we view that as a good sign too. Please pray that Bryce continues to feel "well" and that his body really fights it off well.

Right now, there is nothing that can be done for the E. Coli, it just has to run its course unmedicated. It is thought to last at least 10 days, and we speculate that we are in day 7.
Also, all of his lab work looks good or normal, so we are encouraged by that. You would think that it would get worse if the infection was getting worse. (my thoughts - not necessarily said by the doctor).

Other than praying for Bryce and Sara Kate, please pray that we will find the source of the E. Coli. Right now, we have no clue where either of the kids contracted it, and that drives me crazy. We had a couple of ideas with Sara Kate, but the investigation by the health department did not lead to anything conclusive. It doesn't make sense that they would have been exposed at the same time, because we are 5 weeks into Sara Kate's episode. And, it makes me insane to think that either of them could get it again. We should hear from the health department again, and I just want to figure out where it's coming from.

And, while I'm listing prayer requests, I would humbly ask you to pray for Brad & I. The thought of going through all of this again, quite literally makes me sick. I learned so much with Sara Kate's ordeal, and I felt God's hand so undeniably..........but I wouldn't say that I am ready to relive everything with another child. So, pray for strength of faith, and strength of body for us. We need both. And, pray that we would resist Satan's scare tactics.

Thanks,
Shana

Update #23 - Follow up #2

2006-07-19T22:20:00.000-04:00

Hi folks!

I know several of you are still checking the blog, so I thought I would update everyone with the latest news.

Our appointment went very well. Dr. Malagan didn't even feel like she needed to do labs this week. She said she looked great, and because her levels were so good last time, she decided to spare her the trauma. She will definately have labs drawn next week though...much to our chagrin. Her blood pressure is still very high. In the hospital, she said she wanted it to be 90/60 (it was never that low while we were there). Last week, she said that she didn't want it to be above 104/6? and last week it was 110/??. This week, it had risen to 126/??. So, she put her on another blood pressure medicine in addition to the patch and diuretic that she is already on. I was kind of shocked that it was that high, but she said again, that it was not uncommon for patients to be on long term blood pressure medicine. She also said that high blood pressure does not indicate that the kidneys are not functioning. She said that Sara Kate will be on the medicine for "a while", but did not speculate as to how long specifically. She did ask me some kind of scary questions regarding Sara Kate's behavior.....like has she been extremeley agitated and has shown any signs of banging her head. Fortunately, we were able to answer NO to those questions, and I assume that is a good thing. Ya'll can keep those things in mind as you pray...I assume they are side effects of high blood pressure, but I didn't ask..... As my sister, Shelley stated, I have an active imagination...I didn't want to go there. God didn't get us this far, right??? I'm sure she'll be fine! We are going back next Thursday when she will recheck her blood pressure and draw labs.

I happened to ask about Jose, and he went home 2 days after we did. She also mentioned that she admitted another HUS case from Chattanooga just today. She said this Summer has been the worst she's seen in a while.

Thats about it for the update, but I thought I just might take a few minutes and list the ways that God was evident to us throught out our ordeal. All of these "little blessings" were just continous confirmation that God was taking care of us, and while some of them may sound trivial, they really meant a lot to us. Maybe it will encourage ya'll or maybe it will just be nice for me to have it actually written out somewhere so that I can go back and look at it from time to time. I realize that these are just bullet points and I will not be able to elaborate on the whole story, therefore, they may not make any sense...but you'll get the idea...or you can ask me about it sometime. Ya'll know I never shy from conversation :)

1. The kindness shown to Brad & I by Dr. Keegan (Co-Head of the PICU at TC Thompson). He was very compassionate and was also instrumental in us being able to stay at the Ronald McDonald House.

2. Child life specialist in Chattanooga kept me from having to leave Sara Kate in the PICU by giving me a pair of scrubs.

3. Dr. Talbot (Co- Head of PICU at TC Thompson) was involved in the largest outbreak of HUS in the nation -- Jack in the Box, Seattle. He was there and was personally involved with 10 HUS cases at one time ....this gave me confidence and showed expertise at a time before I knew we were being transferred to Knoxville.

4. Care, concern, support, and prayer from family members, friends, church members, co-workers, and total strangers. We received actual visits, comments on the blog, and cards from people we didn't even know. And I bet we were the first PICU patients who had a "parking lot picnic" for the fourth of July.

5. The care and compassion shown to us by the nurses and doctors at UT Medical Center. (I can't say it enough)

6. Finding a replacement blanket out of the exact same fabric as the one she is attached to.

7. Having a follow up visit from the neurologist that I didn't know was going to happen, on the very morning following a really rough night.....gave me peace of mind.

8. Having the only PICU private room with a full bathroom. This made it easier for us to take showers, etc.

9. Having a room at the Ronald McDonald House ready for us basically before we even got there.

10. The financial gifts that we received....and we thank you for.

11. The fact that Sara Kate did not have surgery until the second day we were there (Saturday). I was exhausted on Friday night, after the whole ordeal on Thursday night and then the ambulance ride to Knoxville. Plus, she was the first, and only, surgery that morning...which has other benefits ( Dr. was fresh and alert and we were the only family in the surgery waiting room.)

12. The fact that there was a train table at the Ronald McDonald house for Bryce to play with. He is really into trains right now. When my parents would bring him on the weekends, he would stay at the RMH and it was so wonderful for him to have whole playroom of toys and a train table to boot.....ISN'T GOD GOOD!

13. We had friends who pulled a camper to a campsite that was really close to the hospital. This allowed for other family who would come up on the weekends a place to stay. We usually had 2 people at the hosptial, 2 people at the RMH, and 2 people at the camper. It was a huge blessing!

That's just a few of them, but you get the idea. God was faithful to us, foremost with Sara Kate's healing; but he was even faithful to us in the very small details....and I didn't want that to go unnoticed.

I've said it before and I'll say it again.....THANKS EVERYBODY!

Update #22 - Follow up with Dr. Malagan

2006-07-11T20:33:00.000-04:00

Hi everybody!

I kind of miss talking to you all this way..... so I thought I would update you on how our follow up went.

First of all, since she's been home she has done fairly well. She still has trouble sleeping, but we decided to restart the valium last night (we had taken her off since Saturday just to try) and she slept better, but still not where we were before we got sick. I'm sure it will take time. We eventually will wean her off, but she is just not ready yet. Everything else has been okay, I suppose. Her appetite isn't back to 100% yet, but it gets better every day too.

Today, at the doctors office she had her labs drawn and they looked great. Her creatinine was still coming down, and her hemoglobin and hematacrit had risen a lot. In fact, her hematacrit was the highest it's been since she has been sick....even with the earlier blood transfusions. The doctor thought she looked great! She changed her lasix medication to a milder one, which I thought was a sign of improvement. She did say that her blood pressure was higher than she wanted it to be, and we are on medicine for that too. It is a patch, and she had me change it out when we got home, so maybe it will be more effective since it is new. It is to be changed weekly. Dr. Malagan said that it is not completely uncommon for kids who have suffered from HUS to be on long-term blood pressure medication; but we're going to believe she doesn't have to be (however, if she does, it wouldn't be the end of the world).

Dr. Malagan said that she didn't have to be seen for a week; but when we went to make that appointment they didn't have anything available for next Tuesday, so we'll be going next Friday (10 days). If I get too concerned, or if she shows signs of low blood I can always have her labs drawn here; but I really don't think that will be necessary.

On a non medical note, the nurses sent a Disney princess gown to Sara Kate by Dr. Malagan (how sweet is that) and I had also left Sara Kate a UT t-shirt for the nurses to sign, and I got that too. So, our first Sunday back at church she'll be sporting a UT shirt (how's that for die hard Georgia fans).

Anyway, thanks so much for continuing to check on Sara Kate. We appreciate you all so much!

Shana

Update #21 - Home again, home again, jiggity jig

2006-07-08T11:41:00.000-04:00

We are in the middle of getting our last blood transfusion, and then we'll be on our way home. It will take about 4 hours (only 3 more now) and then they will take her central line out (pray it goes smoothly). Then I suppose they will go over all the discharge instructions and send us on our way. She will go home on pepcid, lasix, valium, and blood pressure medicine. Also, we will be back in Knoxville on Tuesday for a follow up appointment.

Our sincere appreciation for everything that everyone has done for us. Thank you so much for all the praying you did, for the calls, comments, notes, food, etc. etc. It's hard to believe that I would be speechless, but I really am. The words just aren't enough. Thank you so much!

Also, we want to thank Dr. Malagan and all the nurses in the PICU here at UT Medical Center. I can't stress enough the wonderful, compassionate care we have been given. I can't tell you how wonderful Dr. Malagan is. You will never ever know, how meaningful it is to receive such quality compassionate care when your child is so ill. As many of you know, we are adopting a baby girl from China. It will be more than a year before we travel to bring her home, but because of the impact Dr. Malagan had on our family, we have decided to name the baby Malagan and call her Malley.

Nurses, if you're reading this (feel free to send your comments on this blog, we would love to hear from you).....please receive our true, heart felt appreciation. You really are the best hands down. Several nurses called on their days off to check on us, or came by from the PICU after we were moved to the floor. That is genuine concern, and we were blessed by you all.

~Brad & Shana

A quick note from Aunt Sissy (the weary):
My current state of weariness comes only in part from caring for Sara Kate, but as most of you know, with Shana's overactive imagination, SHE is the true source of my weariness. Although, it could be from being Aunt Sissy (the untrained). I will be speaking to Aunt Sissy (the veteran) about my private tutoring as soon as I get home.
Seriously, I want to thank everyone for your prayers and love in the last 2 weeks. You have truly been the hands and feet of Jesus. It amazes me how God can use the smallest things to make His presence known in the middle of what we are certain is the worst time of our lives. Thank you again!
Aunt Sissy (the homeward bound)

Update #20 - Recovery

2006-07-07T14:56:00.000-04:00

Hey faithful bloggers!

We came through the surgery fine and are back in our room. She basically slept in my lap for a while, and is now awake but resting quietly in her bed.

Dr. Malagan said that we will probably go home tomorrow. (Oh Happy Day) She said they may transfuse (blood) her one more time (I guess just to top her off) and then as long as she is eating and/or drinking, we'll go home tomorrow. As good as it sounds, it's a little scary......but God didn't get us this far right? Anyway, she said that we will have follow up visits every few days for a while. She also said that she will send us home with the valium on an "as needed" basis, and that Sara Kate will also need blood pressure medicine "at least for a while." But, those things are the least of my worries....I'm a pro at administering medication now.

Oh, and You'll be happy to know that little Jose got to go outside for a while today (like we did last night). His mom was so excited because he actually had clothes on. She thinks it may be another few days for him, but he is making progress.

To Brad's Shaw Family: Thank you so much for your generosity, support, care, concern and prayers for our family. It has really meant alot to us.

Blessings,
Shana

Update #20 - Awaiting surgery

2006-07-07T08:43:00.000-04:00

Good morning!

We are up and awaiting surgery. Dr. Malagan decided to leave her central line in until we go home. She said that she would endure more trauma with each stick after her line was taken out, than to just remove it. She said a nurse can remove it, and that it really doesn't hurt. I'm not exactly wild about leaving it in, but I think the doctor is right. I'd much rather her be uncomfortable or scared once, than having her be traumatized every time they need labs. Dr. Malagan said we should be going home this weekend, but she didn't specify a day.

Also, I know ya'll have been praying....she had a much better night last night. She actually went to sleep on her own and didn't jerk or scream or breath wierd. But, the nurse came in and took her blood pressure, and she went crazy. But, after they gave her some Benadryl she went right to sleep and seemed to sleep soundly. It was still after 1 am, but I think she slept so much better. So, thanks!

Speaking of blood pressure, it has really been better. She is wearing a blood pressure medicine patch that helps control it, but when we were in the PICU she still had to have medicine administered in her IV too. So, I think it is stabilizing. It is still not where she wants it to be, but for the last couple of days it has not gotten above 120.

Also, if you haven't noticed in the comment section, little Jose has a website up too. If you want to check it out, it is http://jose.svnet.us (apparently you don't type the www). Again, I think he will be getting to come out on the floor today (last I heard). I was able to take our laptop in this morning and show her Jose's pictures, she was tickled.

Please pray for us around 11 or so, they'll take her downstairs then, and the surgery is at 12. It shouldn't take long.

Thanks!
Shana

Update #19 - Tubes out tomorrow

2006-07-06T19:59:00.000-04:00

Hi everyone.

Two blogs in one day... just for all the blog junkies out there. :)

Sara Kate will be having her PD catheter and her central line taken out tomorrow at noon.

She was unhooked from everything tonight, so we took her outside for a little picnic. She loved being outside. We put a blanket down in the grass and she read books and worked puzzles and played for a while outside. She has not been outside in over two weeks, and she really enjoyed it. Here is a picture from our little outing!!

Please pray that the surgery goes well tomorrow and that there are absolutely NO complications from removing it.

Update #18- Sleepless in Knoxville...but soon to be Ringgold

2006-07-06T13:33:00.000-04:00

Hey everybody!

Sorry for the late post, Dr. Malagan didn't round this morning, so we just now got to see her. I didn't want to post anything before talking to her, because I knew she would give me information that ya'll wanted to hear.

We have been having crappy (for lack of a better word) nights the last few nights. It started out about 3 nights ago, but has progressively gotten worse each night. She will fall asleep fine, but she will call out and cry out all through the night. Last night, she fell asleep and then screamed out suddenly and it was really hard to get her to settle down, and then every time the nurses came in, it started over. Because of the developments our first Sunday here, I was concerned that it was something neurological. As God would have it, it turned out that the neurologist came by this morning to follow up with us. I thought Dr. Malagan had called him and asked him to come in, but she didn't. So, it was a real, true "God Send". Anyway, I explained everything that was going on and exactly how she was acting, and he reassured me that it was nothing neurological, and that it just might take her a while, even after we get home, to sleep well and calmly just because of the trauma that she's experienced. He said everything that she was doing was appropriate for what she has been through. He said they might schedule a follow up appointment in 6 weeks and/or they might do another EEG before we go home. But basically, all is well even if she does continue to do that in her sleep. Now, that is not to say that ya'll shouldn't pray for her not to do that, and please pray for me as well, because when she does it it really freaks me out, not to mention I'm the only one that can console her....so I can't even leave and sleep elsewhere. Nobody is saying that I'm not neurotic....(ha ha--in case you didn't realize that was a joke). Enough complaining......now on to some good news.

Dr. Malagan is weaning her completely off of the TPN and lipids today. She said that she is no longer malnourished and the elements of her body that needed good nutrition (kidneys) are healed. She said that she is not worried about her eating, that it will come on its own; and it will most likely come when she isn't being fed intravenously.

Are you ready for this???? (How did you like my sense of drama there). Anyway, she said that they may go ahead and take her central line and PD catheter out as soon as tomorrow. I think she was just checking with the surgeon to see if he was available. Please pray that the surgery goes well whenever they do it, and also pray that there are no ill effects from removing them. I don't know how long they'll keep her after the removal, but my guess would just be a day or so. So, we're thinking we may be home this weekend sometime.

Also, she has been playing so well. This morning, Shelley (my sister who has been here the whole time....thanks Aunt Sissy-the modern) folded blankets and put them in the floor for her to have a little picnic play area. They are working puzzles and playing with all the stuffed animals (and sneaking in a bite or two as well). She is starting to sit up by herself some, although you can tell she is so weak still, she kind of shakes a little.

More good news......Jose may get to come out to a regular room tomorrow. He was still needing to be dialyzed some yesterday, but she thought he would come out on the floor tomorrow. So he is making strides of improvements as well. The interpretor (who is affiliated with her church in Guatemala, and lives here either as a pastor or missionary or something--feel free to comment and correct me Randy) was here today and I was able to speak briefly with them. Today, they took her out to eat and it was the first time she has left this building in two weeks. She is a woman of great strength. Ya'll please keep praying for them!!

Thanks so much for your care and concern and prayers and support and.......everything!

We love you!
~Shana

Update #17 - Moving Day

2006-07-05T10:01:00.000-04:00

We have moved. We are out of the PICU, and are now in a regular hospital room (422). This means we don't have all the cords on her, all she is hooked up to is her IV. So that is a great convenience. Her lab reports are continuing to improve, so her doctor feels that she will not need any further dialysis. She still has the peritoneal dialysis catheter for now, but the doctor said that they would not send her home with it or the central line; so that is a big relief. I think it is just in for precautionary reasons while they monitor her for the next day or so. They are also reducing the amount of TPN and lipids (nutrition) in her IV in hopes that it will make her want to eat and drink.

I don't really know any kind of time frame. I guess it just depends on Sara Kate. I suppose if she continues to do well without the dialysis, if we can get her to eat and drink, and if her blood pressure stabilizes, they will then take the catheter and central line out. Then, I assume they'll watch her for a day after that. But, I'm totally guessing here. Regardless, we'll be home soon!!

As for her blood pressure, she did not need any medicine for it during the night last night, only once yesterday afternoon; so I'm thinking it is probably fixing itself.

She is still bothered by people coming in, and it takes her a while to get settled each night before she actually goes to sleep. So, in addition to the things mentioned above, please pray that she begins to be less agitated and that she rests easily.

We love you all, and can't wait to get home! Thank you for your continued prayers, support, love and concern. We'll never, ever forget the love we were shown.

Much love and Many Blessings!
Shana

Update #16 - Independence continues

2006-07-04T20:51:00.000-04:00

Hi everybody!

We've had a really great day today. Sara Kate has really been alert and has played and laughed a lot today. They have only had to give her blood pressure medicine once today. She has continued to pee pee even without dialysis. In fact, the doctor decided to leave her completely off dialysis all night tonight and reevaluate her need tomorrow morning.

Tammy & Eric, and Tammy's parents came by and gave us a Fourth of July parking lot picnic , (how great is that) along with some great patriotic room decorations and some patriotic-wear for Sara Kate. As you can see, she loved it. Just look at that sweet smile!! Thanks to all of the EMC crew that put together our "party in a box". Again, I say, where would we be without our church family? Through out all of this, we've been loved on and loved on, and we sure have needed it. We pray blessings on you all!

Not much more needs to be said, I think the picture speaks for itself; and is certainly worth a thousand or so words.....

We are thankful to God for ALL that He has done, and we're thankful for ALL that He is going to do. May He get glory!!

Keep praying!! We love you!

Brad & Shana

Update #15 - independence.....from dialysis

2006-07-04T10:03:00.000-04:00

Happy 4th of July everybody!

We are doing well here in Knoxville. Sara Kate's dialysis has been turned off and we're waiting on the nurses to unhook the tube from the machine. When it is detached from the machine, it is easier to hold her. Sara Kate will be off of dialysis all day long. Yahoo!

Sara Kate still hasn't eaten or drank anything to speak of. She can eat and drink, but hasn't really wanted to. It will be a happy day when she does finally decide she is hungry. She did have a few tiny bites of vanilla pudding last night(thanks to Granda), but that is all so far. The nurse said last night that it is not uncommon for them to be disinterested, especially while her BUN and creatinine are still up (compared to normal). She said when that gets down more towards normal, she'll probably want to eat more.

Her LDH has dropped to 592. Her BUN is down to 54 (from 62), Her creatinine is down to 4.2 (from 4.7) Her hemoglobin has also risen to 10.3 (up from 9.1) and it did so without anymore blood. She has not had blood, plasma, or platelets for several days.

I haven't been able to talk with Jose's mom (she always seems busy when I walk by) but I did see little Jose sitting up in the recliner chair all by himself yesterday. That has to be a good sign....he seemed to be pretty happy sitting there watching tv. And, as I mentioned before he has been eating for a couple of days now. Thanks everyone for asking about him.

Someone asked about an address here at the hospital. It is:

UT Medical Center
Sara Kate Farmer
PICU #7
1924 Alcoa Hwy
Knoxville Tn 37920

Sara Kate is still agitated when strangers or nurses come in the room, but I'm thinking that won't change until we go home. But, please keep praying about that for us, it is really hard to see her go ballistic and its kind of hard to get her to calm down. She is still on the valium every 8 hours, and it does seem to help. I feel for her pediatrician at home, the first few visits there will probably be horrific.....but we'll cross that bridge when we come to it.

I hope everyone has a happy 4th! We plan on celebrating our independence from the hospital in a week or so.....and we're going to party!

I love you all so much!
Shana

Update #14- "Coasting to good health"

2006-07-03T09:06:00.000-04:00

Good morning!

Sara Kate's labs continue to improve. In fact, our night nurse (that we've had for the last 4 nights) wrote me a note on the lab report. The note said that we had "climbed the mountain and are coasting to good health," among other sweet and encouraging things.

Her LDH is 654, and her BUN & Creatinine (extra products that aren't supposed to be there-except for in traces) are also coming down. Dr. Malagan was very excited this morning, and said that we were "on our way out" (although we'll still probably be a week).

Dr. Malagan has decided to take her off of dialysis a little while today. And, she can also start having more to drink (other than water) and they are going to start her on bland, soft diet. Did ya'll hear that? Food and Drink!! What a happy day!

She is still slightly agitated at times and her blood pressure is still high. Please pray that she'll remain calm, and that her blood pressure will stabilize. Also pray that she is able to tolerate the new food & drink. Pray that these new introductions (food & removing dialysis) will be tolerated well so that we can continue to make strides toward home.

Again, I must tell you all how wonderful the nurses are here. We have been so blessed by being here and we have received the most wonderful and compassionate care by the nurses (and doctors). Pray blessings on them, they deserve it.

I love you all so much!
Shana

Update #13

2006-07-02T10:48:00.000-04:00

Good morning!

Just thought I'd give you all an update on Sara Kate. She had a decent night last night, the nurse tried to take her valium dosage down by half because she didn't seem to need it that much during the day. We're thinking that was a mistake, she didn't go to sleep until after 1 AM last night, and became agitated when the nurse came in. It wasn't horrible, but was not as good as the night before. Now that we're back on the regular dosing, she'll probably do better. Eventually, we will wean her off, but I think it was just too soon.

I will say that in the early evening she was playing peek-a-boo with me and laughing some. And already this morning Uncle Scott has had her laughing as well as my mom. So, she is starting to feel well enough to play some. So far, this morning she has rested quietly while watching TV.

Also, we have more good news concerning her labs. Her LDH dropped from 1054 to 817, so we consider that a great sign. The doctor said normal LDH is below 250, so we still have a way to go, but it is steadily dropping. When we first got here, her LDH was 3000. So, as you can see it is coming down nicely. Also, her platelets are rising on their own, and she hasn't had to have any blood in several days. Steady progress.

Here's a pic of Sara Kate from Easter. We are grateful for your prayers.
Brad and Shana

Update #12 - Good news/Prayer request

2006-07-01T11:07:00.000-04:00

Hello again everyone!

Dr. Malagan came in a few minutes ago and said Sara Kate is looking well. She did have a bit of good news that I thought I would pass on. She said the her LDH is dropping. I don't know what LDH actually is, but she says it shows how well her red blood cells and capillaries are healing. She said that it has been her experience that when that starts coming down it means she is starting to heal (meaning her RBC aren't being attacked & destroyed anymore). She said she couldn't do any length of time predictions, but she said that it "seems" we are "over the hump" (her words). Again, I think she was saying that we are making progress, but we'll still be here a while (we'll take it).

There is, however, something else we need to be praying for specifically. You all know that she has a leak in her dialysis catheter. The doctor has said that it developed as a result from having to use the catheter so quickly without giving it a chance to heal. In a perfect world, they would be able to wait several days before they started dialysis, but since Sara Kate was already in kidney failure they couldn't wait. Anyway, because of the leak there is an increased risk of developing peritonitis. She didn't necessarily say the risk was High...just Higher than if we didn't have a leak. Obviously, Sara Kate doesn't need any more challenges. Please pray specifically AGAINST peritonitis developing.

Please keep praying.....the prayers of a righteous man availeth much!! (We've already seen evidence of that truth)

Much love and many blessings!
Shana

Update #11 - Patience

2006-07-01T08:35:00.000-04:00

Good morning everyone!

Thank ya'll so much for continuing to check Sara Kate's progress and for continuing to pray for her. As Brad mentioned yesterday, it seems like we take a few steps forward (pee pee) and we take a few steps backwards (blood pressure, agitation). But, the doctor tells us all this is normal and is just part of the disease. Please pray for patience and endurance for us, as it is hard to see Sara Kate seemingly the same day after day. I certainly don't mean to whine or complain because God has truly been faithful to us. I think its just the fact that we're approaching being hospitalized for two weeks and don't really see an end in sight. It just gets discouraging. This is me being transparent.

On the bright side, Sara Kate does seem to be calmer with the valium. We have been able to hold her more, which she seems to prefer. Her dialysis is going well, except the leak has returned (probably from us holding her). And also, she has started peeing again (she stopped when the took her off the dialysis).

We still need prayer for her labs to improve and for her blood pressure to get under control (it was 145/100) last night (supposed to be 90/60). Please also pray that she remains calm. The doctors feel that her agitation is caused by anxiety, because now she feels well enough to know what's going on. (she is her mother's child)

A number of you have asked about Jose. I sure do appreciate ya'll praying for him. I have the greatest, most supportive friends and family. Anyway, he seems to be doing much better. Yesterday, he was able to start eating...which I would assume is a big step forward (Sara Kate is still not eating). Also, I was able to ask his mom last night if she was getting any rest.....and assuming she knew what I was saying, she is. The mom's (Marisol) sister is now in from Guatemala to help. They seemed to be encouraged when I spoke briefly with them last night...so that is great. Someone asked how old he is, and I can't remember for sure, but I know he is over 2...my guess would be about 27 or 28 months. It is encouraging to see him do well.

I love you all, please keep praying!
Shana

Update #10 - One Week

2006-06-30T08:23:00.000-04:00

Today is the seventh day of our "vacation" here in Knoxville. Everyday has been a roller coaster ride with many ups and downs. We seemed to have a few more downs yesterday, but nothing unexpected. Her recovery is a slow process, and sometimes it's hard to be patient.
Sara Kate seems to be becoming increasingly irritable and agitated, and I would be to if I here in her shoes. The doctor feels that this is being caused by anxiety more than pain, and has prescribed valium for her (I wouldn't mind a couple myself). Our prayer is that she might be able to rest comfortably today and for continued healing.

Brad

Update #9 - The pee pee dance!

2006-06-29T08:47:00.001-04:00

As Tammy posted last night, Sara Kate has started to pee pee. That is a huge sign of improvement. In fact, the nurse said last night that it is not all that uncommon for children to take up to 3 weeks to begin urinating. So, we're incredibly thankful that Sara Kate has begun after only 4 days. The doctor said this morning that they might take her off of dialysis for a little while today. Thats encouraging, but also a little scary for me....but I trust the doctor.

For the most part she is resting comfortably and quietly. Every once in a while she kind of cries out and grimaces...we think it's when she's tinkling (how many different words can we use for urine), but aren't sure. I asked if she could have an infection from the catheter that was taken out Saturday, but they thought that it was unlikely. They said the dialysis catheter is pretty uncomfortable and the pain could be when it is filling her tummy or when it is draining! Anyway, whatever the source, could you pray she is not in a lot of pain.

Her blood pressure is still a little high. The medicine seems to be helping now, and her sodium is starting to come down, so we're hoping it is just temporary.

Also, the doctor said that her CT scan was perfectly normal. Thanks be to God!!

We'll probably try to hold her some today, so you can pray that her catheter doesn't leak.

All the good news is overwhelming and we are so thankful! But, please keep praying!

Thank you again for all your words of encouragement and for your prayers and support. It is overwhelmingly evident that God's hand is upon her!

We love you!
Shana

Update #8 - We have pee pee!!

2006-06-28T22:15:00.000-04:00

Shana called tonight and said, "We have pee!" YEAH!!!!! It is just a little, but it is a start. It is a great sign that Sara Kate's kidneys are on their way to functioning again. Praise God!

We have had wonderful updates the last couple of days, for which we are so thankful. But, she still has a way to go before she is well, so please continue to pray for complete and total healing.

Ephesians 6:18
Pray in the spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints.

God bless,
Tammy

Update #7 - More Good News!

2006-06-28T08:23:00.000-04:00

Good morning!

We thank you so much for your faithful prayers and ask you to continue! We also thank you for your words of encouragement, you would be surprised how much it comforts us. Christ's love and care for us is evident, in large part by your love, care, and support for us.

Sara Kate had a wonderful day yesterday and a great night last night. We are heading for our CT scan this morning, but we really are not worried about it (OK everybody that knows me can pick themselves up off the floor--- me not being worried is a miracle within itself)! The neurologist had ordered other tests yesterday as well, (a liver enzyme test and a test for ammonia) they both came back normal. Dr. Malagan said today that she really just called neurology for our benefit. So we're thankful.

Sara Kate's blood pressure also came down last night. Also, she had a leak in her dialysis catheter. They said the leak was from using the catheter so quickly, but they weren't worried about it, it was just a nuisance. Anyway, it basically stopped leaking over night. So we have several things to be thankful for. First, she is no longer agitated. Second, her neurology results were not too bad, and some were even normal. Thirdly, her blood pressure seems to be more stable. Fourth, her catheter isn't leaking that much anymore. I know ya'll are happy to hear these praise reports and we look forward to adding to the list.

I also wanted to comment on the facility, doctors, and nurses. They have all been wonderful. Dr. Malagan answers all my (unending) questions, and the nurses have been really compassionate. Amy, Brad's sister is an editor of a renal medical journal at Emory, she asked the doctors there about this hospital, and they spoke really highly of it. They said there was not a better place that she could be. That is a great comfort to us, and we're thankful for God's providence in getting us here (nothing is by accident).

I was able to speak to Jose's mother through an interpreter yesterday. I was able to tell her that people that she didn't even know were praying for him. The mother has basically been by herself with her son for 10 days...I don't know how she has done it. Her sister was supposed to fly in from Guatemala last night to help, so that is good news. Please keep praying for him.

I'll try to update again later today or this evening!

Much love & Many blessings
~Shana

Update #6 - Neurology Report

2006-06-27T16:38:00.000-04:00

The nuerologist came by and gave us a report on the EEG. It was abnormal in the fact that the brain waves were slow, but there are no signs of seizures. The slow brain waves are most likely caused by her body not funtioning properly causing her metabolic levels to be out of whack. She wants to do a CT scan tomorrow to be sure there isn't any pressure on the brain, but she feels like it will be normal. We feel this is a fairly positive diagnosis with no permanent effects. The doctor feels like once she begins to recover and is metabolically stable again, she will have a normal EEG

Sara Kate has rested all day, and Shana and I got to hold her most of the morning and afternoon.

Thanks for praying, we know they're being answered

Brad

Update #5~ Sara Kate's new "do"

2006-06-27T08:44:00.000-04:00

Good morning!

Sara Kate's agitation and restlessness started improving yesterday afternoon. She had an EEG done around 11:00 or so yesterday morning, and we still have not heard any results from it. Neurology was supposed to be in last night, but never made it in. Quite honestly, I'm a little nervous about the results, but I am encouraged that she improved on her own and did not require constant sedation. The only time they had to sedate her again was during the EEG itself (and the picture explains why). It took 30 minutes or so to apply the probes and another 30 minutes to capture it. She did wonderfully during the whole process (there is something to be said for sedation). We are supposed to be hearing from Neurology today.

The only other development has been her blood pressure. It started increasing yesterday evening and it didn't seem to respond to the medicine. Finally, as a last result before calling the doctor, they did sedate her again. But, it was only because her blood pressure was high, NOT because she was agitated. The nurse felt like if she could really rest, that her BP would go down, and it did. Her labs during the night showed an increase in sodium. Sodium is in the TPN that she is getting intravenously, so the doctor ordered that it be diluted with regular IV fluids. Brad & I feel that the sodium may be elevating her BP, although that was never said by doctor or nurse. Maybe once she gets her new fluid orders (something done every morning) the problem will correct.

Specific prayer requests would be to continue to pray about the results of EEG, and for complete healing with her kidneys. Also pray that no other organs would be affected. And for wisdom for the doctors and nurses. Our praise for the day is that she is seemingly calm even without sedation!!!

Could I also ask everyone to please pray for a little boy two doors down from our room. His name is Jose and he has HUS too. He is hispanic and his mother doesn't speak english. She has come in to our room several times to try to communicate ( I guess to compare notes/progress), but the language barrier is hard. Yesterday, she came in and basically broke down. All I could do was hug her and cry with her. She doesn't seem to have the support that she should and not being able to communicate well with the doctors and nurses must be extremely difficult. I know everyone is honored to pray for him as well, and I thank you!

Thank you so much for your faithfulness and your encouragement!

~Shana

Update #4- 8:00 am -- KEEP PRAYING

2006-06-26T08:43:00.000-04:00

Hello Friends and Family,

As Cyndi stated in her post last night, Sara Kate did not have a very good day yesterday and it only got worse last night into the evening hours. Her fusiness increased and basically she did not get any sleep all day yesterday. At about 8:00, we were starting to think something was wrong because we had given her a different pain medication and that did not seem to help at all. We had the nurse page our doctor and she prescribed something for agitation. That medication did not help in the least, and Sara Kate was only getting worse. The doctor came in around 10:30 or 11:00 and said that the HUS was affecting her central nervous system. That was a very big blow to our spirits. HUS can affect any organ because it attacks the red blood cells. The more organs affected, the worse her chances of full recovery. HOWEVER, Dr. Malagan did say that she still expected a full recovery and that she has seen other children with worse CNS (brain) reactions still go on to recover nicely. She said that other children actually have had seizures, so Sara Kate's CNS only seems to be mildly affected.

She was given a drug to sedate her and she rested fairly well last night, which was a huge blessing after not having had any sleep all day. The doctor said that they could adminster the drug again if she woke up agitated again, but we're praying that they won't have to.

Our prayers right now should be that no other organs become affected by the HUS, because there is basically nothing that can be done. Last night, the doctor said that her heart, pancrease, and lungs all seemed very well. Her labs continue to look good. She was not given any more blood or platelets last night, which I see as a good sign. She was, however, given some plasma because the doctor mentioned that there was some thought (based on research) that it seemed to help when the CNS was affected. Our prayers also should continue to plead for complete and total healing!

Again, the doctor said last night that she still expected Sara Kate to make a complete recovery and we're claiming that as a promise from God!

Thank you so much for the out pouring of love, support, and prayers. We have been blessed by so many things that I can't begin to list them all. But please know that we view each one as a direct confirmation of God's love for us and for Sara Kate. You all have truly been (as a friend of mine once said) "Jesus with Skin" and we have really needed it.

To our EMC Church family: We are more than honored to be a part of such a wonderful and supportive church family. Thank you so much for the generous gift and for the being the ones to keep our arms lifted up to God. We can't express our gratitude enough. We are poster children for the fact that the "church" is needed....where would we be without it!! We love you all!

~Shana

Update #3 - 06/25/06 7:30 PM

2006-06-25T21:05:00.000-04:00

We visited with Brad & Shana this afternoon and they asked that we update everyone on how Sara Kate is doing. Medically speaking there is not a lot of change in Sara Kate's status. As Shana mentioned earlier, Sara Kate has been very fussy today and when we were there, Sara Kate would have moments where she was very agitated and seemed to be in a good deal of pain. Shana and Brad were having to work very hard to console her. Sara Kate went on this way from about 12 PM to 5 PM or so. This was a difficult period for all three of them. Shana felt like Sara Kate may be suffering from some gas pains and she asked the nurse for some medicine to help Sara Kate with the pain.

We called Brad and spoke to him around 7:30 and he said that the doctor did give Sara Kate some medicine for the abdominal pain and that the pain had subsided, but now she is dealing with itching around her eyes and her face. This was irritating her as well. Shana and Brad are fatigued from dealing with Sara Kate's fusiness today and with their being unable to help her. But, on the positive side, she continued to drink the water today and really seemed to enjoy it. Shana also feels that the fusiness is a good sign, because it might mean that Sara Kate is feeling better now and realizes that she is not home and that she has 2 tubes in her and that something is not quite right. As Shana put it, "she has some fight in her now" it seems. So, that was definitely a positive thing! She continues to improve, but Shana said that today was their hardest day. Brad and Shana both commented on how wonderful the doctors and staff are and that they are taking very good care of Sara Kate.

As we rode back to Dalton today, the following scripture came to mind -

“I lift up my eyes to the hills- where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip- He who watches over you will not slumber; indeed, He who watches over Israel will neither slumber nor sleep. The Lord watches over you- the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The Lord will keep you from all harm- He will watch over your life; the Lord will watch over your coming and going both now and forevermore.” Psalms 121

The Lord is truly watching over Sara Kate and Brad and Shana!!

As you continue to lift up the family in prayer, points of focus are Sara Kate's continual healing and her ability to deal with everything she is having to go through and for Brad and Shana to find renewed strength through every prayer and gesture of love being extended to them at this time.

Update #2 - 6/25/06 1pm

2006-06-25T13:18:00.000-04:00

Aunt Sissy and Uncle Scott took night duty last night, and we are thankful for our first nights rest in a week. Sara Kate is rather fussy today, but they say that it is normal, and we are still on track to recovery. We just have to play the waiting game for a while.
She was given more blood last night, but didn't have to have any platelets. They do labwork every 6 hours, and everything looks good at the moment. Also, she had been pulling her passy out and pointing to the sink, so the doctor said that she could have 3 ounces of water a day. The surgeon came by this morning, and thought all of her tubes were looking good.

Sara Kate's 1st Update

2006-06-24T19:06:00.000-04:00

Sara Kate is at UT Medical Center in Knoxville. She has been diagnosed with a strain of E Coli bacteria that causes complications with the kidneys and other organs. It is called HUS. Sorry, we don't know exactly what HUS stands for. Thursday evening Sara Kate experienced renal failure. While her kidneys have some function it was decided that she be moved to UT Medical Center for dialysis.

This morning at 8 am she had a procedure to place a tube in her stomach for peritoneal dialysis.Basically, the process makes the stomach act like one big kidney. She also had a central line inserted to administer fluids, nutrients and to draw blood when needed. She is resting as comfortably as possible and has begun her dialysis treatments which are expected to continue from 2 days to 3 weeks. Each child is different. Some bounce back faster than others. There are currently 4 cases of this type of E Coli infection in the state of Tennessee. Normally they treat 4 or 5 case in a whole year.

Sara Kate is expected to make a full recovery as most kids do; though it could be a few weeks. Our family really appreciates all the prayers and support we have experienced since Sara Kate got sick. We know she is in God's hands; as we all are. We have seen His hand at work through the whole process. Please continue to pray. That is the best way to help. If you would like to post messages here; we will check them as often as possible. Thank you again.

2006-06-24T17:23:00.000-04:00

This site was created to allow family and friends to know about Sara Kate's progress and to check on her updates each day. This will also allow friends to send messages to the family. We will have a new post of her progress up soon. Thank you for your prayers and support!!!