Update March 22, 2009: Crossing the Sudan desert without a camel.

Yesterday Eli went through more Hemo-Dialysis. But, this time we had another approach. Our theory derives from experiences with Eli and heavy narcotics. It most children one serving of 25 mg would do the trick. With Eli the first dose would go in an hour before dialysis. An hour would go by and Eli would look dazed but his bodily function was still strong. The more agitated Eli was, the more strength he seemed to have. So, the doctors would give our young dialitic (made that word up) more narcotic. This was like calling Mr. T a sissy. Eli seemed to get even more agitated.

The drugs were telling him to go to sleep but his body wouldn't allow it. It was painful and frustrating, to be involved with as a parent, and the medical staff was also in confusion and sorrow. The final try was just plain old Valium. Which helped calm Eli down, in turn allowed the narcotic to take effect.

We came to a realization that something had to change. Yesterday we approached dialysis with another strategy. Only a small dose of narcotic was given to try to keep Eli calm. We kept the lights dim, our minds at ease, no big groups of nurses and doctors, and Eli stayed calm. We were able to start dialysis and Eli was still awake. Conversations were kept to whispers. Toys and books from our supporters, and well wishers, kept Eli entertained (Thank you). It was constant stimulation, that was the trick. Our efforts were not going without reward. Three hours went by and Eli was still awake and dialysis was complete.

Eli has come along way in his journey of healing and recovery. He has gone a week and a half without something to drink. With dialysis he has had dry skin, parched lips. Machines have been suppling Eli with nutrients and taking away fluids.

Once dialysis was complete the doctors discussed options for Eli to take in fluid on his own. Of course Jes and I were ecstatic. “ He loves juice” we said. The nurse came in with six ounces of juice in a bottle. It took some enticing. Eli must have thought of the bottle as a mirage. But once Eli realized what was in the bottle he attacked. He attacked as if he had just crossed the desert on foot and had not drank in weeks. His stomach had thought his throat had been cut. He gulped the juice. The bottle was empty in seconds, before the nurse even pulled her hand from the cage.

Have you ever heard of the survival techniques that suggest that if one is severely dehydrated from long stints without fluid in their stomach, they should not chug or take in large quantities of water? A result of this action would and could be extreme projectile vomiting. Jes never had a chance! Before she could say ooh S*%#&, Eli had unleashed. There was enough volume and force to put out a small garbage fire across the room. Poor Jes was dressed in her Saturdays best and though she has quick reflexes, she was still a target. I leaped to help Eli roll to his side, but slipped ever so slightly on the fluid now pooled on the floor. I caught myself on the lion's cage. I looked like Sylvester Stallone in the “Cliff Hanger” Climax. By the time I pulled myself to a stance Eli was finished, Jes was soaked, and the nurse was shocked. It took minutes to regroup, and make sure the worst had passed.

Eli's bed was also a victim in this regurgitation assault. New sheets and bedspread, all the way down to the vinyl hypoallergenic mattress. Another victim unaware of the attack was Eli's favorite puppy(as seen in photos). The puppy was actually just returned to Eli, after he had escaped to the dog wash, because of previous contamination from bodily fluids.

It took some time before we dare gave Eli another chance at keeping himself hydrated. The second try was deemed a success, it helped that we only gave him an opportunity to intake 2 ounces. That was all we could get Eli too take in. The trauma from the earlier events must have left a mark on Eli, our weary traveler.

We have been supportive advocates of his bladder function. Every drop of pee is measured. We got so compulsive that we asked for a new catheter, it turns out Eli's had a hole in the existing one. Jes first discovered the leak when she had placed Eli into his cage and a new faint perfume now graced her sweater.

Jes and I left Eli that night with four nurses. Four nurses were required to put a new catheter in Eli. First there were two, and then a shriek from the room “ A little help here!!” and another nurse entered the room. As we walked down the hall we heard the call for nurse number four and she came rushing past us. I now began to worry that one of them might be in danger. So, I turned and felt the need to investigate. If you the reader are a father of a son, I'll lend you some advice, “When your son is getting this procedure done don't go in for the fight!!” I went in and cringed, the sight alone was enough to double me in two. Arms and legs were kicking and flying. There was nothing I could do. With nurses on either side there was no room. I had to leave, the thought of that being done to me still sits in my craw. I walked down the hall in shock and disbelief. I should have heeded the nurses warning this was nothing for a father to watch or get involved.

Todays: Day Off


Well today Eli was given a chance to be a real tourist in the ICU. No dialysis today. Eli took advantage of a guided Red Ryder tour around the third floor. On his trek with his tour guides (mom and dad) they ventured into the hallway of fish. Where it feels like an aquarium, filled with stuffed plastic fish. Eli's facial expressions led us to believe he was enjoying the trip. With the occasional “Ooh!” and a point to a suspended Clown Fish. Eli did not want to return to his room, his discontent was expressed with great passion as mom tried to pick him from the tour guide wagon.

Today was also a day of catch up. Eli's treatments have left him deprived of sleep. It was more noticeable from the outsiders perspective, looking into the crib. Eli was so use to going to sleep with drugs, that his normal sleep schedule was scrambled. Finally Jes and I had to leave. Eli would look for any excuse to move or be active, and Jes and I were gracious parents, only to realize that we were contributing to his restlessness. I couldn't blame him, he has been couped up in his cage for a week and a half. So, we left our desert traveler for the professionals.

Eli did finally get about two hours of sleep today. The color of Eli's skin is starting to improve, and by 7:00 pm Eli had peed 101cc. So, we are still improving and the kidneys are working. We have dialysis scheduled for the morning, and hopefully it goes well.

I hope that you as readers enjoy my short stories, it seems to help me through this process being able to share with you. Thank you again for all the gifts, prayers and wishes.

Lewy

The Lions Cage

Update: The Lions Cage!!

March 20, 2009
Last night when we left Eli was not wanting to stay in bed. He was slowly recovering from his sedation and gaining strength and mobility. We fed him yogurt from a bowl. Before Jes could react Eli grabbed the spoon and tried to feed himself. At last our boy is back! Although his coordination is not spot on he is close to being mobile.

When we left the nurse was already saying her prayer on how Eli would do tonight. She called for assistance with a bath for Eli. A rather large muscular woman named Bertha walked in. I think Eli saw her as a challenge. That was how we left. We were down the hall about 20 feet when we heard “ Oh My God He's Strong” Jes and I laughed remembering our times in their position trying to settle down. We commented on the fact that these girls were going to have their hands full tonight.

Well this morning when Jes and I showed up, we did not know what to expect. We walked into Eli's room the crib walls were as high as they would go. There was a syringe of a heavy narcotic in the garbage. Alas the lion sleeps. Eli was covered by a blanket. There were padded restraints at the foot of the bed. Jes quickly asked if the night nurse was okay, concerned for the nurses health. Our new day nurse began to laugh. Apparently Eli was a two hands full last night. The poor girl never had a chance. She tried everything from empty non-used syringes to toys that made noise, and toys that moved. She rocked him and walked him but with no avail. She had to give in and they gave him the narcotic. That was at Midnight.

Jes and I couldn't help but laugh in joy that our boy was showing signs of improvement. Also, we have pee. Eli has started to produce short bursts of pee. Already were up to 13 cc and it's only 8:30 am.

It seems like we have been here for weeks. Thank you all again for your support. We still have a long road ahead of us not just including Eli's hospital treatment. It is a comfortable feeling to know when we need help that you all are there.


Thank You

Lewy

Update

Update March 19, 2009

Well here we Go.


Eli's original dialysis clogged up early this morning, at 4:00 am. So, currently we are starting Hemo-Dialysis. It is 3:30 pm. This is very quick 4 hour run, and then we should be-able to let Eli get a more normal schedule of rest and relax and then dialysis, in a cyclical fashion. This also means that we can leave the PICU to a recovery room, and only come back to PICU for Dialysis Treatment. His kidneys are responding well but no substantial urination.

Also, today we were able to get Eli out of bed. He slept in jessicas arms for awhile. Eli also has begun physical therapy to help him get adjusted from bed life.

Eli is even more closely monitored now due the the sophistication of the machine. Attached are photos of Eli (of course the star of this saga), and his new speedy artificial kidney.

Thank you all for your continual support and prayers they are not going unwanted. As you can tell in my reporting we are doing better and Eli is showing improvement.


Thank you

Lewy

Update & Address

Eli is doing well. He has been on dialysis since Friday Noon. In most cases in adults they will only run the machine for 72 hours and then switch the guts of the machine for new fresh parts. But, in children they will run for 5 to 7 days before intervention. Eli's doctor is waiting for the machine to form a clot in the lines before he will stop. This is a good sign it shows that Eli's body is taking control and forming platelets. We are still waiting for Eli to pee, but his bowels are still working. The last diaper just about cleared the west wing of the hospital. Poor nurse, I hope she regains consciousness soon. Haa haa just a joke. Hope you understand humor helps, good or bad.


There has been many request for an address to send items to us and Eli.

Eli is at Sacred Heart Children's Hospital Room 312, 108 w 8th avenue, Spokane, WA 99204

Jes and I are staying at The Ronald McDonald House Room 3, 1015 w 5th avenue, Spokane, WA 99204

Thank you all for your support.

Lewis

P.S. If Kurt & Mary read this we would be happy to see you if your in the area.

A Poem and an Update

A Poem By Baxter Black
Friend is a word....
that I don't throw around
Though it's used and abused, I still like the sound.
I save it for people who've done right by me
And I know I can count on if ever need be.

Some of my friends drive big limousines
Own ranches and banks and visit with queens.
And some of my friends are up to their neck
In overdue notes and can't write a check.

They're singers or ropers or writers of prose
And others, God bless 'em, can't blow their own nose!
I guess bein' friends don't have nothin' to do
With talent or money or knowin' who's who.

It's a comf'terbul feelin' when you don't have to care
'Bout choosin' your words or bein' quite fair
'Cause friends'll just listen and let go on by
Those words you don't mean and not bat an eye.

It makes a friend happy to see your success.
They're proud of yer good side and forgive all the rest
And that ain't so easy, all of the time
sometimes I get crazy and to go blind!

Yer friends just might have to take you on home
Or remind you sometime that you're not alone.
Or even so gently pull you back to the ground
When you think you can fly with no one around.

A hug or a shake, whichever seems right
Is the high point of givin', I'll tell ya tonight,
All worldly riches and tributes of men
Can't hold a candle to the worth of a friend.


Update on Eli March 17, 2009
St Patrick's Day

Well it wouldn't hurt if Eli received a little luck of the Irish today, but the doc says we can't go chasing rainbows just yet.

The poem recited above was in a book I just read. I thought it was a fitting reminder of how helpful friends are. We have a lot of support and offering s and if yours was declined don't take offense, right now were doing just fine.


Well this morning Jes and I got a shock. We walked in and found Eli was shaking and was informed that he was going through with drawls. He looked just like the documentaries of drug addicts in throws of rehab. He was in a lot of pain and was crying and trying everything to get away. The prognosis is that the dialysis is taking away to much of Eli's sedation. So they are trying another drug to help and it should not get taken out of his blood flow as quickly. A benefit to this medication is that Eli is really alert. He is able to stay still, but is verbally reacting to his surroundings. We are currently watching 101 Dalmatians, and ever time there is a dog on the TV Eli grunts and groans. Every once in a while he will actually say dog!! and laugh.

So, there is some good news. Eli is handling treatment better. The doctor says his blood is still improving. We are still waiting for Eli to pee. I keep running the faucet in his room, you know for the sound, but the nurse keeps giving me the evil eye. I explained my theory, but she's a woman and doesn't feel my hypothesis is true.

Also I haven't talked about it much, but Jes and I are staying at the Ronald McDonald house for the time being. Its actually a nice place. The rooms is set up a lot like a hotel with some other conveniences. So, if you feel a need, you can eat at Mcdonalds and make some small donations (Pocket Change), because there are a lot of families out there in the same position we are. The house often only works off of donations and contributions from outside sources.

Thank you all


Lewis Heil

Eli Update

Update March 15, 2009

Well today is another great day in Eli's progress. At 8:00 pm he had been on dialysis for 56 hours. The doctors has started a positive pressure of fluids into Eli's system. What this does is encourage Eli to remove the fluids on his own through his kidneys and bladder. So you might see message or comments praying for pee. Pee is a good thing but not the answer.

Even if Eli pees he will still be on dialysis for a couple of more days. This is to ensure that his kidneys have plenty of time to recoup from the damage already caused. If all goes well Eli will be off dialysis in a couple of days. Eli is also on a new type of drug. It is as strong as a narcotic but he will not go through as hard of a with drawl. The have turned my kid into a junkie. See attached photo, a picture is worth a thousand words

We will still have to be here for months to come to ensure that Eli's kidneys do not relapse and not other infections occur. So were are not in the clear yet but we are following a path with a light at the end of the tunnel.


Today was also a day of information. This is a preliminary decision on what caused Eli's kidneys to fail. There are still more test to come, but what information they are getting is pointing to E Coli. Finally a reason for all the drama, for now, not positive, but an idea.


Thank you again to those working behind the scenes, and those who a giving their continual support. It is so revealing how many people in this world generally care for the well being of others. TO all a Big Thank you.


Lewis Heil

Eli UPDATE

Update March 14, 2009

No news is good news!! Well last night was the first night since this began that Eli slept through the night without complication. So by no news, the doctors did call to tell us that something went a rye, is good news. For right now the doctors are monitoring Eli's blood very carefully and keeping him sedated.

We got to see him awake for a brief moment, and he is coming around from where he was two days ago. He recognized Jessica and began to cry (see picture). A picture is worth a thousand words.


This just in!! The doctor reported that they removed 600cc of fluid from Eli last night and his weight is down to 10.5 Kg. So, the doctor will consider this as a dry weight. This means that they will only remove an amount of fluid equal to what is being put in. Before they were, removing more than what was being put in, trying to catch up to the fluids Eli was retaining. With this information tomorrows plan is to administer more fluid, and take away less by machine, to see if Eli's body will start working and remove the liquids on its own.


So I will leave it at that with a positive note.


Thank you


Lewis Heil

Update March 13

Eli had a tough night last night, but he is fine. He had a reaction to the medicines they are giving to sedate him. He was sedate but active and moving around which he can not do for dialysis. The dialysis machine detect the slightest pressure change and will shut down. Another problem they are having is clotting in the the machine as the blood is treated, this also stops the machine.

So Eli has been on and off of dialysis due to the machine's issues. But in test results Eli is showing improvement his potassium levels have dropped and his kidney numbers are also improving.

They had some trouble this morning putting in a PICC line to help administer fluids to Eli. There is a problem in children due too small veins and arteries. SO, in their attempts they were unable to be successful.

On a positive note Eli looks better and is more active. Unfortunately we need to minimize his movement, but he still tries to tell the doctors what to do when he gets the chance.


Well thats all for now.


Lewy Heil

Eli Update

Eli is going to go through a process of dialysis. This process will help clean the disease from his blood. It will also help administer proteins and needed fluids to his system. This process will start slow. He will be on a machine that runs 24 hours a day. He will be sedated so that he will not move during the process. This will be monitored every hour and we will run for 48 hours, before accessing the results. We our confident that this will be the way to a recovery for Eli. Not a fast way, but a way to keep moving forward.

If I had any suggestions for those who have children or are close to children is: HUG THEM, HOLD THEM, MAKE THEM LAUGH, LOVE THEM, AND ASK THEM HOW THEY ARE FEELING!

When Eli was born I knew I was a father, but now that he is sick, and relying on a machine to keep him healthy, I feel like a father. There is no other feeling like a gut wrenching thought of losing your child to illness.


Thank You to all that have offered their support.


Lewis Heil

Eli's Needs your Prayers!!

Well at 16 months Eli's has found himself surrounded by medical staff and Strangers. To start at the beggining. March 10 7:00pm Eli had cesure, Jessca called 911 and Eli was taken to the Whitefish Hospital and stabalized. He was then transfered to Kalispell Medical. We stayed over the nght wth Eli. He had another cesure this Morning at 7:00am. IT was then decided to admit Eli back to the ICU of Kalispell. The diagnosed a Severe urinary track infection, which may have caued a fever whch led to the initial cesure. The second cesure was due to a rise in potassium levels in his blood. Ths they clam was a result from taken blood samples, and that blood cells can be damaged durng the process releasng potassium n to his blood flow.
Now even scarrier news. Eli's Kidneys are not functioning properly, so they flew him and mom to Spokane Washington to see a specialist. I drove and have arrived safely.

Eli's kidneys are not functioning as they should, so the doctors here are going to put him on a dialsis program to help regulate his blood. Unfortunatley ths is a very long proccess. Right now they are talking weeks of treatment.

I appreciate your concerns and at this time I have no more news. Thank you and please pray for the health of my son, and family as we go through this.


Lewis Heil