This post about our family’s Winter adventure of HUS and E Coli has been long over due.
It has been hard to just sit down and get serious about writing a post about it all because I am so buried with life and making sure Presto is getting what he needs to heal. It has also been hard to know where to start telling the story.
Luckily, I found an email I had written to my college roommate one week after Presto and EB came home from PCMC. It is an accurate synopsis of what happened without being too long and descriptive. I changed and corrected a couple of things in the original email and added some pictures to help tell the story of our 32 days at PCMC.
But the truth of it is–the story is not yet over; we are just in chapter two as of late.
Here is the first chapter: 32 Days.
On Dec 23, 2012, our little Presto (6 yo) started vomiting and having diarrhea. He continued to get worse and on Christmas Eve we had to take him into our Dr because we were really worried about dehydration. He was going out both ends continuously so we knew he was very ill. At our clinic, the Dr gave him two bags of IV and we took him home so we could have Christmas. But on Christmas afternoon, he had not improved and so we went to the ER. There we were told that they suspected E Coli and that Presto was developing into a condition called HUS (Hemolytic Uremic Syndrome) and that his kidneys were starting to fail. We were told to rush down to Primary Children’s Medical Center that same night as they could not help him at our local hospital.
We packed up our whole family (7 children, EB and I) and headed to PCMC on Christmas evening. We arrived there around 11:00 pm and were relieved to get Presto some help. He was so very sick and we just were distraught with worry. We stayed for a week with my brother who only lives 18 minutes from the hospital, and EB and I would change shifts between taking care of Presto at PCMC and taking care of our other children. After a very draining and sleepless week, around New Year’s Eve I decided to head home, restock and give my brother’s family a break from us all. Presto was stable and it was a good time for me to leave. EB stayed with Presto and the rest of us headed home.
After staying for New Year’s Eve, I packed up again and headed back to Salt Lake on New Year’s day, my birthday. JQ and Dolly M had to stay home for school stuff so I took Babups, Eboo, and JuBean with me to head back to PCMC. The only thing, Eboo (our 9 yo) started to show signs of what Presto had just as we were traveling back down to Salt Lake. When we arrived at PCMC, Eboo was having frequent diarrhea, cramping and throwing up just like Presto. Then her stools became bloody, a tell tale sign of E Coli. I couldn’t believe it, was in shock, but grateful we were already there in the right place. So on New Year’s evening, we admitted the 2nd child to PCMC hoping and pleading that Eboo wouldn’t develop into HUS like Presto.
After assessing this new turn in events, EB and I made the decision that maybe me being in the hospital during the day and then going home at night, could be endangering our other children and my brother’s family by possibly carrying the E Coli back on my clothing etc. How did Eboo come down with it too? So with much sadness, I took the rest of the family and headed back home. Gratefully, our oldest son, B Trout, was living in the Salt Lake area and was able to help EB out by staying in the other room with Eboo. (Eboo was having painful cramping diarrhea every 20-30 minutes for 3 straight days. She was also throwing up but not as much as Presto. She had an IV so she needed help going back and forth to the bathroom.)
The next day after getting home, Thursday, Jan 3, JuBean (my 18 mo) started having diarrhea and developed a fever. Yes, another one! But she was happy and eating and not vomiting at all. I still am nursing her a bit, so I started nursing her solely as I heard that breast milk kills E Coli. We also gave her a priesthood blessing that night and she did OK. We sent in her stools to be tested but she was doing rather well. I was hopeful that she just had a virus or something that was causing the fever and diarrhea. We were all praying like crazy. Meanwhile, Presto was doing very poorly and was soooo soooo sick. His kidneys had shut down and he was needing dialysis every day along with a couple of blood transfusions as his red blood cells were dropping. However, Eboo was improving and by Friday her diarrhea had ceased and she was feeling generally well–just a bit weak and tired. I do have to say, that week of the new year was dark dark dark, and I don’t remember much of it except feeling extremely stressed, worried for our three little ones, and feeling helpless at home and not at PCMC to help. I spent most of my days on my knees pleading to the Lord for relief and for the welfare of my children and husband in the hospital 3 hours away.
On Saturday, Jan 5, B Trout was able to bring Eboo home and we were so excited! But just as he got home, our excitement hit the reality wall, again. EB called to tell me that the stool sample for JuBean tested positive for E Coli!! What? She was doing so well, hydrated, no fever, nursing, and being pretty happy. But we knew that she could turn and we were scared what it would be like to have an 18 month old in the hospital hooked up to an IV. All I could see was a crying baby trying to pull out IV’s or any of the monitors that Presto and Eboo had on them and being poked by all the blood draws etc. JuBean hates to be constrained and it would be an utter nightmare for all involved if she had to be hospitalized. I was now at my wits end, the road of my strength had ended that night. But then EB consulted with the Dr and he said that if she was feeling good, urinating, and eating, just to sit at home and wait it out. So that is what we did.
Monday night, however, JuBean’s stools did start to show small bits of blood. It wasn’t at all like Presto’s and Eboo’s, but I got really worried. If she was going to get worse, she was going to need an IV to get through it. We were hoping she would be like Eboo and not bloom into HUS like Presto, so I took JuBean into the local ER. We put an IV in her, took a blood sample, and a urine sample. It took four adults to wrestle her down to do all that. She is a fighter and boy, did I see it that night in the ER. I was expecting and ready to be admitted into the local hospital with her, but the Dr had some much needed relieving news. He said she wasn’t dehydrated at all, that her kidneys were just fine, and that we could go home and watch her there. We kept the IV in her just in case she needed some fluids later on and also so we wouldn’t have to go through that wrestling screaming match again. What a blessing!! I have never been so happy to go home. The Lord was answering our prayers and we knew that JuBean’s case was a pure miracle. In fact, a day later, we had her checked, took out the IV, and she never had any more problems. The Dr said my breast feeding was probably what saved her. Now I know why I felt not to stop nursing her at a year old!!
We now had two of the three home, and yet, Presto was still struggling. I also came down with a nasty cough and cold (I was so worn out) so I couldn’t go down to Utah to help with Presto. EB was happy though that the girls had recovered and that we could now just focus on Presto. Finally, I headed down to PCMC to see Presto. We all went down and went to church at PCMC and then I stayed with Presto all day on Sunday while EB had a much overdue break. It was extremely hard to leave again, being there just a short day and a half, but my other kids had school and other obligations, and JuBean was a terror in hospitals and so I left again.
Presto then got staph infection from the catheter and that took a while to heal. He also had problems with his breathing and had to be put on oxygen, and his kidneys just would not start back up. It was a long haul, but on Jan 6, Presto finally urinated! It was a tiny bit, but it was urine! That meant his kidneys were starting back up. I’ll always remember the call I got from EB that night that Presto had peed. We both cried over the phone. It was a miracle because many had fasted that same day for Presto.
Presto still had some issues, was having dialysis 3-4 times a week, and many ups and downs with this and that. Both he and EB were becoming emotionally raw and so tired of being there in the hospital. It was a hard trial for us all. I felt so helpless at home trying to keep life normal for the rest of the children while EB and Presto were going through H E double-hockey-sticks. So many twists and turns were trying our patience and driving us crazy, and our life was consumed with worry and getting Presto well. I don’t remember much of the month of January in the way of normal life, but I am glad January is over.
After what seemed like forever, Presto starting to slowly get better one day a time and then last Saturday, Jan 26, JQ’s 18th birthday, we got the news that Presto and EB were coming home! The Dr’s were anxious to get him home as the Flu and RSV season were in full force at the hospital. It was almost more dangerous for Presto to be there at PCMC with all the many viruses floating around. We didn’t even know until the morning of his release that he would be coming home, but I was so happy as we could celebrate JQ’s last birthday together as a family before he leaves on his mission in April. BTW, JQ got his mission call on Dec 21 (2 days before this all started) to the Canada Calgary Mission and he leaves on April 10.
When Presto, EB and B Trout came home that night, it was a sweet reunion! All I can say is, I’ll never be the same. This trial has taught me so many things, and I know that it still is not over. Presto still has a ways to go to build his health and get those kidneys working. This week’s blood tests were very positive though and show that his kidneys are very slightly starting to filter. He has been creating urine in abundance, but the urine was just like water. His kidneys were not filtering. But this week he is having signs that his kidneys are starting to filter. Yeah! He even went to church today. Things are looking hopeful and we are just glad to be home all together.
Presto, Eboo, and JuBean are doing great! We still have more healing hurdles for Presto to clear as his kidneys are still not back 100%. Since both girls did not develop HUS, they are back to their normal health with no lingering after effects. The biggest question we get from everyone is “Where did they get the E Coli in the first place?” The girls contracted E Coli from Presto, but we have no idea were he got it. Our home well water tested negative for E Coli, and we do not have cows or live by a dairy. Maybe it was something Presto ate, or maybe it was something Presto touched and then ingested the bacteria from hand to mouth. Whichever it was, you better believe our family have now become full on germ-aphob’s. Our family motto just may be: Washing hands never goes out of style.
I cannot end here without acknowledging and expressing our sincere gratitude to the Lord. He was in the details of this adventure and provided many tender mercies that our family desperately needed. I knew before this all happened that God answers prayers and that God is real. But I know more now that God loves His children and watches over them, especially in their trials.
God is so kind and merciful and without His spirit and strength we would not have been qualified to make it through this journey. When I couldn’t muster one more ounce of faith and hope to get through the next day, the Lord made up the difference for me and filled in the gap. He truly is a God of mercy.
We are also so incredibly thankful to the hundreds of individuals that served, prayed, lifted and helped our family through this fiery trial. There are too many to mention of neighbors, church members, friends, family and even strangers that helped us lift our heavy load by their charitable acts of service. So many were thoughtful and kind and truly concerned for our family, making us feel so supported and hopeful that we could endure whatever would come. Thank you from the bottom of our grateful hearts. We love you all and wish we could repay you somehow.
We feel great humility and are so indebted to the medical doctors, nurses, technicians, and hospital staff at our local hospital and clinic and especially to Primary Children’s Medical Center for their amazing care of our sweet children. It would have been impossible for our family to have made it through the healing process without you all. So thank you, thank you. Medical technology saved our dear Presto and that is a very humbling thought.
There are also so many other families that are still in the midst of their stormy struggles big and small.Our hearts feel your pain, worry and stress. We will always be praying for you and ask God to comfort and bless you and your children with recovery and health.One of the lessons we learned from being at a place like PCMC, was that there will always be some family in crisis every moment of every day.
Presto still prays everyday for those “sick and in the hospitals” and I believe he will for as long as he lives.
This 32 day experience has changed all of us for the better and we are sincerely grateful for the heated opportunity.
That is what trials do for imperfect individuals. The heat melts away the dross leaving the desired end product, refinement.