Saturday, August 23, 2008

She's outta here!

Day 11
We just received the final blood tests from this morning. Her red blood cell count is holding steady in the low 30's. It could take weeks or months before her count gets back up in the 40's. Everything else is looking great.
The doctor said there is minimal risk of future complications with her kidneys. Approx. 10% of children that get HUS can develop high blood pressure later in life. Overall the doctors and nurses said that she had a pretty mild case of HUS.
The specialists that put Halley's catheter in her neck were not available to take it out so one of the nurses pulled it out this morning. They did not use any anesthesia and apparently it was a little bit traumatic for Halley and Celeste.
Regardless, we are done and are now blowing this taco stand!
We'll see you back in the good 'ole Mountain of Green - Joe

Friday, August 22, 2008

Friday Night, the 22nd


We're all hoping this will be the last night!!! The doctors want to check her blood in the morning, but they are hopeful that we will be able to go home tomorrow! Halley did much better today. Her swelling has gone down considerably. She has been eating and peeing well. She is still pale, her body is still very weak--it will take time to build up her red blood cells and fully recover. Some unexpected side effects from this ordeal is she is very demanding, quite a bit grouchy, and she likes scary movies. But who can blame her? It is almost unreal that this is finally coming to an end. I can't thank everyone enough for all they have done for Halley and us. We feel so blessed to be surrounded by such love. Thank you, Celeste

Almost out!

Halley will not need any more dialysis. The doctors said she will probably be able to leave tomorrow depending on her blood tests in the morning. They will have to put her under general anesthesia again to take the catheter out of her neck. Other than that she is almost good to go.
I want to thank everyone again for all of the help with the mowing, cleaning, tending, cooking, watering, visiting, calling, praying, worrying, fasting, cards, balloons, toys, etc.
Thank you so so much - Joe

Thursday, August 21, 2008

Thursday Night, the 21st


So it is Thursday? I'm very disoriented after staying isolated in this one hospital room for 8 days now. So today the doctors pushed for an excuse to leave this room. Halley was so delighted. She was full of giggles just walking down the hall. We went around the revolving door at the front entrance 19 times. We made it to the children's playroom to play with some glitter and glue. Depending on the labs in the morning we might need dialysis tomorrow. She is peeing well, so that means the kidneys are starting to wake up. She is still monitored for any complications, but it is so relieving that she is on the upswing. Thank you for your continued prayers. Love, Celeste

She's 100% E. Coli free

The 2nd E. Coli test came back early. She is good to go out of the room and practically took the door off of the hinges when she went blasting out.
Her blood pressure has been pretty high lately. The doctors think that may be a result of her kidneys starting back up.
We were also told that she may need dialysis on more time to reduce some of the excess potassium and calcium in her system.
Awesome day - Joe

Halley Belle


Halley's red blood cell count is still at 33. Her platelets jumped way up yesterday. Overall she is slowly improving and we are hoping to take her home this weekend.

The swelling in her face has increased a little more lately. She looks like a little chipmunk running around with nuts in her cheeks.

Luke was able to come by and visit her yesterday. They were so happy to see each other. Luke has always been super protective over his little sister and you could tell he really missed her.

Joe

Wednesday, August 20, 2008

Wednesday Night, the 20th




Today, overall was a good day. We had a rough start at 6am when they had rough time with her bandaged catheter. The highlight is when Luke came to visit. Halley couldn't stop hugging him and kissing him on the cheek. He was also generous with his hugs and kept making her play dough rainbows. Halley was really disappointed when he had to leave. We were able to catch up on some sleep and eat well today. Halley was peeing pretty well today, so this is a good trend. We actually might be able to leave by the end of this weekend! Overall everyone thinks her kidneys are on the comeback and she is recovering. Thank you for your continued prayers and all the support. Halley and family feel extremely loved. Love, Celeste

Good mornin'

Halley's red blood cell count is at 32 this morning. They did not have a LDH reading for some reason. Her platelet levels have jumped up to 143 which is a great sign.
The lab results for her first stool came back negative for E. Coli. Everything is looking pretty good this morning.
I bought her a toy gun last night so she could shoot the nurses and doctors. She wouldn't shoot the "girl ones" but she blasted Dan the head nurse.
Later, Joe

Tuesday, August 19, 2008

Tuesday Night, the 19th


What a good day! Halley did have to go through three hours of dialysis today because of her fluid overload and higher levels of salts in her blood. So she spent about five hours today watching movies and not being able to eat. But dialysis really paid off. When she was finished she felt much better, ate a ton of spaghetti, bread, and apples dipped in peanut butter. She looks and feels much better, and had a great night playing with Dad in her room. All of the doctors and nurses commented on how much better she looks. We are all hopeful this will be the last time she will need dialysis. She went pee for the fourth time today, and she did have a bowel movement! Hooray! We have to have two bowel tests revealing she is E.coli free before they will even let her out of her room, which she is very anxious to do. The problem is that it takes a few days to get the lab results back. The doctor said that if things continue to do well we might be able to check out in about 5 days from now. We are all praying this will be the case. Thank you so much for your love for Halley and us. Love, Celeste

Dialysis Round 3

Halley will be finished with her 3rd round of dialysis at 5:00. Celeste said she is already looking like her bloating has come down significantly. She went pee again this afternoon. She peed more today than she has the last 5 days combined.
She is getting a little antsy to leave the room. Hopefully we can get another E. Coli-free stool here in the next day and get her out of that room.
She sure misses everybody. I read your comments to her and she will usually respond "I want to go to so-and-so's house" depending on who's comment I just read.
Thanks again for everything. Halley has some great fans!
Joe

!!!!!!!!!!!!!


Halley is doing absolutely awesome this morning. All the good stuff is up and all of the bad stuff is down. Her red blood cell count is at 33 and her LDH levels down to 2100. Her platelets went from 78 to 83 as well.
Her belly was getting a little bit big last night and the doctors were a little bit concerned with that however it is down considerably this morning and will go down even more after dialysis.
She was able to go pee twice this morning which is great. She was also able to go pee twice yesterday as well.
She had a big breakfast of oatmeal and milk and is taking a little nap right now.
Hopefully tonight will be the last dialysis.
That's all I have for now - Joe

Monday, August 18, 2008

Monday night

Today Halley had a pretty good day. There were no procedures so she was eating, getting up, and playing. She really wants to step outside of this room, but they won't allow it yet. She was able to eat pretty well and keep everything down. I'm glad she did not have to have a feeding tube inserted, for her comfort. She is very wary of anything connected or bandaged on her. She even has a really hard time every time they take her temperature or blood pressure, or anything else. We are still praying her kidneys will kick in. Tomorrow is a definite dialysis day, and labs will tell us in the morning if there is anything else. Tonight they are worried about the fluid overload in her body, and hoping that does not cause a secondary infection. I'm hoping she can get a good night sleep amidst all the hospital interruptions. Thank you for all your prayers. Love, Celeste

Luke's lab results


We just received the Lab results for Luke. He is 100% E. Coli free as of last Friday (when we took in the sample).
Halley ate a ton again today (oatmeal, chicken nuggets, noodles, juice, etc.) however she was not able to let very much back out. Hopefully she will have a good night.
Joe

CDC Update

The staff over at the CDC finally contacted us this morning. They claim that there have been several other cases similar to Halley's however the test results from the original stool sample have not been processed. Apparently once they obtain the sample they culture the bacteria for a week and ultimately are able to determine the genetic footprint and see if it matches the other cases. If it does they will begin testing the food in our fridge and pantry or they will try to pinpoint a restaurant, taco wagon, etc. If it does not they will write it off as a random occurrence.
Halley had a good pee this morning. She called me at work right after and asked me to bring her a big toy and a candy bar.
I better go shoppin', Joe



Technical Data

For those of you who are a little more savvy on the technical info Halley's Hematocrit levels (red blood cell concentration) are down to 33.8 from yesterdays 36. Her LDH levels (toxins) have actually come down from 4200 yesterday to 4100 today. We were just informed that She will not need dialysis or a transfusion today.
Pretty good news, Joe

Morning of day 6

Halley's blood tests came back this morning. Her LDH levels are up a little bit and her red blood cell count is down a bit. They will probably do dialysis again today but she will probably not need a transfusion or a feeding tube for another 24 hours.
We'll let ya know, Joe

Sunday, August 17, 2008

Sunday Night


Today was crucial because it was a day off for treatments and we were just trying to get Halley to get some food down and get all of her digestive system working to prevent having to need a feeding tube inserted tomorrow. The day started off ruff, with some throwing up and not feeling well, but by tonight she's got some food and got to sleep at a decent hour. I just want to thank everyone for all their fasting and prayers, because by the end of the day we could really feel the help. Tonight I'm praying that she will be able to heal enough on her own that tomorrow she might not need any more treatments. Thank you for all your love and support and especially prayers. Love, Celeste

Awesome day!

We have been super blessed today. We were able to disconnect Halley from the equipment and let her walk and play for a couple hours. Shortly after that she had a HUGE bowel movement - sweet! she was also able to pee quite a bit today. We are so excited! She threw up once after lunch but overall she was able to take in significantly more than she lost.
She has been super happy and playful today. She was almost nice to one of the nurses today too! It's been so nice to see her act like herself again.
Thank you all for all of your concern. I know it has been all our prayers and faith in Christ that has made the biggest difference.
We love you all, Joe

Day off



They are not going to be doing dialysis, transfusions or feeding tubes today. They have asked us to get as much hearty food as we can down her today and they will see how she does over the next 18 hours.

Halley cannot leave her room because E. Coli is so serious. That is somewhat unfortunate because there are so many activities and fun things to do at the hospital. She has had a lot of fun however playing with her play-doh, coloring books, eating, reading and watching any movie she wants (they have 1000's to choose from).

The CDC (center for disease control) is supposed to be contacting us within the next few days. They may ask to test some of the food we have left over at our house and will probably have us identify all of the eating establishments we have been to over the last few weeks. They will also test the E. Coli bacteria they found in Halley's stool and try to match its genetic footprint with the bacteria they have found in other patients. That way they can better determine where the bacteria originated.

The doctor said that Halley's heart had less of a murmur this morning which means she is less anemic. That could probably be attributed to the transfusion.

We are hoping that she can pee, poo and hold her food down today.

We'll let ya know - Joe

Good Morning


Halley slept really well last night. Her blood pressure is a little bit high and her temperature is up just a little bit. Her red blood cell cound is at 36 which is a little better than they expected however her LDH levels have not changed since yesterday.

Dr. Mauch will come in this morning and let us know whether or not she will need dialysis or not.
Later, Joe

Saturday, August 16, 2008

NEWS FLASH!


There has been a major outbreak at the hospital tonight (see picture). The entire wing has been quarinteened. All of the children who were hit hardest have had clayish red dots erupt our of their foreheads and have intense cravings for cheetos.
We will keep you informed of any changes! Joe

End of day 4

Halley is having a pretty good night. After she finished dialysis she had a big dinner and crashed. She woke up a few hours later to mom and dad watching the olympics and told us she wants to be a runner when she grows up.

If she can hold tonights dinner down she will probably not need a feeding tube tomorrow. We're crossing our fingers.

Joe

Flying colors!

Halley is almost finished with the transfusion and dialysis. She sure got a lot of color back. Celeste made another lunch order that would put Paul Bunion to shame.
Joe

Dialysis round 2


Halley's dialysis and transfusion are going well. The blood they are using is "Lucosite reduced" which apparently is comprised strictly of red blood cells. The white blood cells are pulled out and the blood is treated with radiation to destroy antibodies all of which should help lower the risk of infection.
The nurses and doctors have been so great. They have tried so hard to be kind to Halley but she will have nothing to do with them. She has no reservations about telling them off or kicking them out of her room. For those of you who really know Halley you will appreciate how funny that really is. She is the sweetest, kindest little girl but when it comes to nurses and doctors - watch out!
Joe

LDH down

Dr. Mach (Primary Children's E. Coli & kidney specialist) came in just a few moments ago and gave us a little bit of good news. She said that Halley's LDH levels are down to 4000 from yesterdays 6000 (LDH is the enzyme that is released when the red blood cells break down). We need them down to 700 before she can leave. They also need two stool samples to come back negative for the E. Coli cultures before she can be dismissed.
She will be doing dialysis again early in the afternoon. They will be doing the blood transfusion during the dialysis. That way they can clean the blood and introduce the new red blood cells she needs simultaneously.
Halley's blood pressure is still at a very healthy level. Most children that do come in with HUS have very high blood pressure. We are very fortunate that hers have remained so low.
Halley has been a little more sleepy lately due to her low red blood cell count. The dialysis and transfusion should perk her back up.
Thank you everyone for all of your love and support.
Joe

Update



The blood tests came back and have indicated that her red blood cell count has dropped down to 20. It's a pretty dramatic change and she is probably going to need a blood transfusion. Her temperature is good and her blood pressure is still low. It is very common for children who do have HUS to get at least 1 transfusion.


We'll keep you posted - Joe

Zzzzzz


Halley slept good last night. The nurses woke her once when they took her vital signs but she eventually got back to sleep and is still sleeping.

The one good thing about that dialysis catheter is they can now draw blood every morning without poking her. She slept right through that this morning (so did I).

The swelling in her face has gone down considerably. That is a great sign because it shows that her kidneys are doing their job.

I found a sweet couch in the main hallway last night and crashed there. Celeste came and kicked me off of it at about 3:00 and is still snoozing there even though there are people walking all around her. It's the first time she has been able to sleep for more than 2 hours.

Thanks for your prayers, Joe

Friday, August 15, 2008

Luke


Luke has worried us too. He was infected with E. coli as well, and with that bloody diarreah, but not as severe as Halley's. All the tests and blood work on him have shown that his kidneys are doing well and he does not have HUS. He is in the impeccable care of Grandma and Grandpa Torman and is in heaven. He has absolutely no desire to return home and much prefers to revel in Grandma and Grandpa's abounding love and attention. I must admit, I know I am the luckiest mother on earth to have Kathy and Reed as parents and the grandparents of my children.
Thank you for your prayers.
Celeste

Thankful!

We are really fortunate that our doctors were able to diagnose Halley as early as they did. I talked with Dr. TJ Eskelsen this afternoon and he made the comment that a lot of the time physicians are not able to diagnose HUS and E. Coli until after the child's red blood cell count is below 20. At that point the doctors and nurses are on crisis management rather than carefully monitoring the child's health such as Halley's case.

Through 1st round of dialysis



Halley is doing great this afternoon. Dialysis lasted approx 2 hours and she passed with flying colors. Her blood pressure is low (good low) and they were able to extract a moderate amount of fluid. The blood tests tomorrow will give us a better indication of how many toxins they were able to pull out.

After dialysis she had a bag of M&Ms (see picture), some ravioli, a bowl of macaroni & cheese, a can of sprite, a can of apple juice, a bag of cheetos, a cup of chocolate ice cream, a bag of animal crackers, a bag of teddy grahams and about half of my peach jamba juice. Right now she is watching season 4 of strawberry shortcake.

The doctor seemed optimistic after seeing her red blood cell go up last night. She also pee'd this afternoon which is a great sign.

Please keep her in your prayers, Joe

Halley @ Primary Childrens - Day 3


Halley’s doing pretty well this morning. She had her blood work tested again this morning and fortunately her red blood cell count is up and she will not need a blood transfusion for the time being. She will however begin dialysis this afternoon because of the damage her kidneys have sustained.

Let me rewind a bid to catch everyone up:
Just over a week ago Halley began complaining of stomach pains and we began to see blood in her stool. We took her into the clinic and they began testing her for different viruses, bacteria and parasites. To make a long story short last Wednesday we took her into Dr. Allred’s office after having just been there the day before doing more testing. He noticed that she had lost 2lbs over that 24 hour period and suggested that we check her into the hospital right away. At that point Dr. Allred had indicated to us that Halley may have contracted an E. Coli strand. Needless to say all of our jaws and stomachs hit the floor.
We checked her into Ogden Regional Hospital where they poked her like a pin cushion trying to get an IV in. After 4 or 5 attempts they were finally able to get one in her foot. Just after that we received word that more of her test results came back and that we needed to move her to Primary Children’s Hospital because of the damage to her kidneys.
The paramedics came and they strapped me to the gurney with Halley in my arms and then loaded us in the ambulance, needless to say it was an atmosphere in which I was well acquainted. Halley on the other hand was scared stiff to say the least.
Once we were at Primary Children’s we were bombarded with doctors and nurses all of which were absolutely awesome. They have been doing blood work on her every morning and as long as her red blood cell count stays above 20 she will not need a blood transfusion (40 is typical for most people). Her count was 30 the first day, 28 the second day and 29 this morning.
They have since confirmed that Halley does have HUS and is a result of an E. Coli infection. It is very serious however, she is in the right place – probably the best in the world.
We will keep you all posted, Joe