Sunday, December 20, 2009

Ecoli 157/HUS Miyah's story

Dialysis Machine
Papa Beach's friends the highway patrol men came to visit
Daddy and Miyah
Utah Grizzlies came to see Miyah
Mommy and Miyah
Due to poor kidney function, Miyah got edema and her face swelled


If you are like me, you have probably only heard of people getting severe Ecoli infections from ground beef or other foods in the news. It had never crossed my mind it could happen to me or my children, but it did, and where it came from we don't know. Most adults can get over Ecoli 157 (and mention I 157, because that is the dangerous Ecoli found in raw beef, not the normal ecoli we all have present in our bodies) within a week. I personally felt like I was going to die during that week and I did make an ER visit, but I got over it. 2 weeks later both of my children began to present the same symptoms I had previously had, so I immediately got them into the Dr. to be tested for Ecoli 157, both tests came back positive. Easton got through it, even better than I did, but Miyah got extremely sick and we made 2 ER visits and 4 Dr. visits. Just as I thought things were getting better, Miyah got sicker, and again I returned to the ER. Within 30 minutes the Dr. came in and told me Miyah was in the beginning stages of kidney failure and needed to be transported to Primary Children's Hospital ASAP. I drove to Primary Children's with one hand, while holding the other hand behind me in the back seat trying to catch Miyah's vomiting in a bucket. Some how we made it there.
Open arriving at PC, we were immediately met by a team of 5 Dr.'s, one being a Pediatric Renal
Specialist. The news was grave as the Dr. told me Miyah had "HUS". Here is a brief explanation of what HUS is, and how it occurs:

Only 1 in 10 children develop HUS following an E. coli infection. "HUS is a dramatic, explosive illness that most commonly develops within 2 to 4 days after a bout of gastroenteritis that is accompanied by bloody diarrhea. Children are hospitalized with obvious irritability, fatigue, pallor and a noticeable decrease in urine production. Some severely affected children may have life-threatening gastrointestinal problems. Neurological dysfunction including lethargy, seizures, cerebral infarction, blindness and coma can be present at disease onset or develop during the course of the illness."Nearly 5-10% of children with HUS die during the acute phase of the disease as a consequence of complete renal failure or multiple organ complications. A small majority of children with HUS experience a complete recovery with full restoration of kidney function and almost no risk of the disease recurring. However, 10-30% of the children who survive have permanent kidney damage and many of these children will have progressive loss of kidney function over the next 5 to 10 years."

After hearing about the disease, I was in tears and of course had a million questions for the Dr. Though the Dr. seemed very knowledgeable, he was very blunt and did little to combat my fears of Miyah developing a neurological disorder or blindness. He said he had seen it all before, and could not make promises of it not happening to her. He let me know he had seen much milder cases than what Miyah had, and a few more severe, but she was definitely closer to the severe side than mild. The Dr. let me know that Miyah may need dialysis to help her regain kidney function, but he wasn't ready to do it just yet. When putting a child on dialysis, it is necessary to surgically run two long tubes through the chest going directly into the heart. With this you run the chance of infection entering the tubes and going straight to the heart causing septicemia and or meningitis. These words were like taking bullets to the head as many of you know this exact thing happened to Miyah just two years ago when she was in the NICU. Bacteria entered her body via a pic line and we watched her "knock on deaths door," for lack of better words. I was SO worried about this happening again. Not only was infection a concern this time, but because Miyah's body was in such distress, she had a very low platelet and red blood cell count, doing surgery could cause her to bleed out. I just hoped that somehow she would not need dialysis, and I prayed for that, but only hours later the Dr. came in and told me Miyah was worse and that he had seen very few children decline in kidney function so quickly. Dialysis was our only hope, but he feared her kidneys had already completely stopped, where he needed at least 20% of them to still be functioning for the dialysis to work.
Miyah was taken into surgery and to our great comfort was operated on by Dr. Meyers, the chief of surgery, and Dr. that did all children's heart transplants. All went well.
The next morning the kidney specialist informed us that Miyah's cathetor bag was full indicating some kidney function! Dialysis just might work after all! Dialysis was started that morning and Miyah took to it so well, her hematocrit came up, and her kidney function improved greatly, she was dialized 2 more times throughout the week. Each time Miyah was dialized her kidney's began to function even better and things began to look up! 3 blood transfusions were given to Miyah to help bump up her RBC's. Just 9 days later we were told Miyah was stable enough to come home. News we weren't expecting! We couldn't' believe how quickly things were turning around. We had planned on spending our Christmas in the hospital was well as the weeks to come. While Miyah and I were getting ready to leave, Miyah told me she wanted to "stay at the Dr.s." It was amazing to me how fast she had seemed to forget her life before living in a bed and watching movies all day. As we walked out of the hospital Miyah was very unsteady and had forgotten how to walk, it was pretty cute. She seemed skeptical about leaving, but soon got excited to see very ordinary items like chairs and water!!! Miyah is still not 100%, and she still has a low hematocrit, and seems to get nauseated quite easily. She is still under close Dr.s surveillance, and we don't know what percent of her kidney function will forever be scarred. What we can say is that once again we have seen prayer bring us miracles. Dialysis is a miracle in and of itself. What other organ can be repaired by a machine! We are SO grateful for modern medicine, extremely intelligent Doctors, Primary Children's Hospital, and most importantly the love, prayers, fasting, and support of the Beach/Luekenga families, Quail Crossing Ward, and all other friends.

13 comments:

Silvia said...

I'm so sorry Miyah had to go through all this... that's just terrible and no kid should ever have to endure it! But she's a strong little one and she did great! I had no idea she had been sick until I saw it on FB. Thanks for posting the link to your blog on there. I'll start following it, if that's ok with you! We love you guys!

Jennifer B said...

Wow!!! Talk about deja vu. I'm so glad that she is starting to feel better. No mom should have to go through that twice (or once for that matter). Sending my love & prayers that everything heals perfectly. =)

Skinner Family said...

Wow. I'm so sorry your family had to go through such a scary thing. I'm so grateful she is doing better. Just from your family miracles anyone can learn the power of prayer and faith. We love and miss you guys!

Crystal said...

Michelle, I am so glad that Miyah is doing better! What a test of a mother to have to go through what you've been through. It's amazing the imprint that these sweet spirits leave on our hearts. Merry Christmas!

Megan said...

What an ordeal! I am so glad to hear that Miyah is doing so much better and I hope you just get more and more good news! If you need anything, let me know.

Mindy said...

Oh, this was such a scary thing. I just love her so much, and I am SO thankful that Heavenly Father has given us another miracle!

Jaden J. Petersen said...

We are so glad she is home, Michelle you are an amazing mother with a lot of strength. Hope she still likes her piggy:) Love you guys

kimbo said...

Oh Michelle! How scary. Glad to hear she came through it ok. She is one strong girl. I can't believe how big she looks! It's crazy that these kids grow so fast. We will keep you all in our prayers.
Kim

The Belnaps said...

I heard the news from Polly..we have been praying for your sweet Miyah. I'm glad she is home and doing better. Nothing is worse than a sick child.

Pettin'Tales said...

That girl is a trooper and so are all of you! We were so happy to hear that her recovery was quicker than expected. You will continue to be in our prayers. Way to hang in there on the dialysis, it is a life saver, literally. My dad was on dialysis for 2 years before he got his kidney transplant, those machines are miracles! I wish we could have been closer to help in some way. We love and miss you all and will keep our fingers crossed for a full recovery. By the way, mad skills on the driving while holding puke bucket! All our love!

Jill C said...

I am so glad that she is okay. I can't believe everything you have gone through with those 2 little ones. I hope you had a great Christmas despite the hospital stay previous to it.

Jamie said...

I'm so sorry your Miyah had to go through all of that! What a sweetheart. she is so beautiful! And I must say your kiddos looked so fun on Halloween-aren't twins the best!!

Momma Polly said...

Thank you for sharing the Christmas Miracle. Miyah will always know that the Savior healed her... again. She's something special, that one.