Sara Kate's Follow up & Bryce Update

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

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

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

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

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

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

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)