November 22, 2013

Rokie is so much more alert and able to use his hands more.  His brain is active and he can listen to some simple commands when we play occupational therapy games.  I am so impressed with his improvement since last Sunday.  Back then his eyes couldn’t focus on me and he would get tired so quickly.  Today he played with me for a few hours despite being so tired.  He seems to be more content and not so aggravated. 

He no longer has any lines in him at all except one IV and a feeding tube as I expected.  The ICU staff, along with the Rehab Team, are in agreement that Rokie should be moved to the fourth floor for rehab.  This makes me think that it won’t be too long before he is discharged.  I have not spoken with the surgery team yet.  They may have some other opinions that may lengthen his stay.  I will see what they say tomorrow. 

I emptied the ostomy bag for the first time today.  It wasn’t very bad at all.  I changed his diaper too.  After that, we put a gown and some pants on him before we got to go on a field trip!  The doctors have allowed us to take Rokie on trips around the hospital, or anywhere as far as I understand, as long as we don’t miss his scheduled prescriptions or feedings.  We disconnected completely from the IV, formula bag, and the leads.  I carried Rokie outside to the play structure and he loved it.  I think it really inspired him to do some physical therapy.  He stood on his own feet for about three minutes.  He turned all around looking at the structure and the little girl who was playing there.  On the play structure he did more physical therapy than ever in the hospital.  I think the outside air is amazing for him. 

 

Everyone from the ICU medical staff is so thrilled with his improvements and recover.  With sepsis and HUS there could be or have been very scary long-term effects.  He doesn’t appear to have brain damage.  His muscles certainly have atrophied but with each day he is getting stronger an stronger.  The surgeons feel good about his bowels too.  Of course, he will need monthly or weekly checkups for years to make sure his kidneys are healing or at least stable, but we will deal with that through time. 

November 20, 2013

After talking with Steph and the doctor, I learned Rokie has all lines removed except one remaining I.V. line.  The oxygen line is out too.  His creatinine levels decreased by 0.1 today which is a good sign.

November 15 - November 19

November 19, 2013

Today I found out Rokie had a pic line removed from his left leg and ... he removed his urinary catheter all by himself!  Yeah Rokie!  I love that he removed it and the doctor said he doesn't really need it anyway.  Steph and G. Booty keep telling me cool things about Rokie.  He tries to sing along with Steph, he is more focused, and can interact more.

November 18, 2013

Rokie's creatinine levels plateaued today.  If they do not increase over the next few days, it is highly likely he won't need more dialysis. 

November 17, 2013

Rokie is aware and more alert of what is going on around him.  G. Booty is making him laugh and smile.  His throat hurts him so he doesn't make a lot of noise but he does make noise when he cries or something hurts him.  Right now, Rokie is going through withdrawals and is not 100% coherent, his body twitches, and he gets nausea aches.  It is sad to see our boy suffering from drug dependence so young.

I spoke with one of the doctors today, and he said our concerns are (in order of importance) - (1) kidneys, (2) Bowels, (3) Drug Dependence, and (4) Respiratory issues.  The lungs seem to be doing well and require less and less support.  The kidneys are still very sick but the Kreatinin levels are only slightly increasing.  We hope they stabilize so we can start removing lines and catheters.

Rokie has been signing for food by continuously sticking his fingers to his mouth.  Until he receives occupational therapy to coordinate his "swallowing" he must continue with a feeding tube rather than eating orally.

This week will be a major time to make big decisions towards Rokie's improvements.

November 16, 2013

Rokie is looking much better all the time.  He is off the machines and just hooked to 2 PIC lines, an artery line, the CRRT catheter in his neck, and the urinary catheter.  He hates all of it and really works hard at removing everything.  I love that he reacts as a normal toddler would.  It makes me feel like he can recover to a normal status and be running around again.

Rokie looks like he is confused and is not sure why so many "strangers" act like they know him so well and are happy he is looking healthier.  I assume he wonders why he is in a hospital too.  Poor guy.  The only person who can make him smile or laugh is Grandma Boo.  His throat hurts and he can't make much sound.  The only sound he made was when he was crying when the nurses changed his dressing around the catheters.  His skin is so sensitive when they remove his bandages.  I help him sit up and I think he enjoys it.  His muscles are very weak so we have to hold him but it is really good for him.

Talking with the doctors, we are monitoring his Kreatinin levels, his BUN, and other levels to make sure he does not need more dialysis.  If he does, then we have to transfer him to another hospital that does hemo-dialysis.  One of the doctors feels like it is a low possibility.  We are still waiting day-by-day and hour-by-hour.

November 15, 2013

Today I held Rokie for the first time in over four weeks.  He seems confused and aggravated about all these "new" people he doesn't know but they all seem to know him.  He remembered how to use the iPhone.  He pushed the main button and scrolled through pictures even though he lacks a lot of strength and fine motor skills.  He is such a cutie and I really hate to see him frustrated with all the lines, tubes, tape, and everything else bugging him.

The doctors removed Rokie from the ventilator today and also moved him to a different bed where he can begin rehab with his diet and everything else. They also removed the oldest PIC line so he is doing quite well.  He hates the lines on him and keeps trying to rip them out.

November 8 - November 14

November 14, 2013

Mama got to hold Rokie today.  He came off the dialysis machine and we will continue to monitor his progress.  We are praying he won't have to go back on dialysis if possible. 

November 11, 2013

The medical staff is preparing Rokie's body to be ready to come off the mechanical ventilator and dialysis machine.  He is now to a plateau where he is perhaps not getting better on the machines.  That means the machines have negative effects that once necessarily allow him to get better.  The only way to heal is to challenge Rokie's body.  They are taking Rokus off the paralytic drug and he came out of it aggressive.  He doesn't like the dialysis catheter in his neck.  He is shaking his head and trying to rip it out by hand.  Although that is not good, I am proud of him because it means he is still aware and responding as he normally would.  Go Rokie!

November 9, 2013

Rokie was sleepy all day but his blood pressure and heart rate were up a lot.  The doctors decided to administer Atevan to reduce anxiety which may drop his blood pressure and heart rate.  Got a call from the docs that the Atevan worked.  They will drop the other anxiety med.

November 8, 2013

Rokie's eyes were open tonight.  He is coughing up a lot of phlegm tonight. 

November 5-7

November 7, 2013

I heard from Steph that Rokie is doing better and that he is maintaining stable after some
IV lines and tubes have been removed from his little body. Perhaps in 1-2 weeks he will be
removed from the dialysis machine. That will be awesome because it will mean he eventually
will be able to be removed from the ventilator as well.

November 6, 2013

Rokie was taken off the dialysis machine today and some of his tubes and lines were removed. Stephanie said his levels seemed to be doing well despite being off the machine. That is such great news. The nurses even laid him on his belly to give him a break of laying on his back. I am very happy about all of that. The blood cultures still remain negative for any infections.

November 5, 2013

Rokie’s levels have been fluctuating today and he developed a fever. The medical staff don’t fully understand why his levels are imbalanced but they have some blood cultures still growing. They believe that having so many IVs and pick lines may be the cause so they have decided to pull one or two of them out tomorrow. That is a bit scary because he may end up needing one or both of them.

November 1 - November 4

November 4, 2013

I spoke with the doctor, and they believe he has an infection but don't know where it is located so they can't appropriately treat it.  If they could treat it, they believe he could have great improvements.  Perhaps this would be the hurdle that gets him over the hump. 

November 1, 2013

Today, Rokie's doctors were concerned about the dialysis machines clotting so they had the hematologist determine what the best choice of action would be.  They are adding some blood thinner to the machine.

October 19-October 31

October 31, 2013

Today Rokie produced 150 mL of urine!  We are so happy that Rokie is getting better every day. 

October 27, 2013

Today, Rokie had a little setback.  The doctors added a second chest drain tube on his right side.  Immediately after installing the tube, 4 oz. of fluid drained out.  That should alleviate the pressure on his lungs.

October 26, 2013

I spent a good amount of time with Rokus.  He is calm and peaceful.  There aren't really a lot of things he likes but we keep trying.  He doesn't care for stuffed animals or books.  He likes holding syringes or other small objects.  He lives having a hand on his head.  I sing to him and he seems to appreciate it.

Later, I spoke with the doctor about the reality of Rokie's situation.  She reminded me of how sick Rokie still is.  That he is still quite susceptible to infection.  His immune system is VERY weak and the harmless bacteria normally in the body could harm him and cause another infection.  That's her biggest fear.

October 25, 2013

Rokus was cleared of E. coli today.  No more isolation, gowns, gloves, or masks.  That means only other infections need treatment otherwise the body needs to heal.  He looks like he's doing well and the nurses have complies with Steph's requests to not over-sedate him. 

October 24, 2013

Rokie looks more at people and healthy.  The doctor brought me up to speed on Rokie's condition and there did not seem to be anything new that I did not know.

October 20, 2013

Rokie is clearly uncomfortable in bed and the pain meds are making him feel itchy.  I feel bad for the little guy but I know he is healing so that is good. 

October 19, 2013

Stephanie let me know Rokie's appendix was removed as well as a small portion of the small intestine. 

October 17-18

October 18, 2013

To get caught back up with the whole event...Wednesday night, the evening after the emergency surgery, we met with the doctors and we were told things went well.  1/3 of the large intestine was removed and about 10 cm of small intestine was removed.  It was apparent the E. Coli attacked the intestines as well as the kidneys.  This is very rare and only seen in less than 1% of patients with HUS.  Most of the time, the patients with failing intestine bleed heavily from the anus, see the intestine lining remove itself from the vessel wall and discharge out the anus, and get very angry with their upset bowels and they become aggressive.  Rokus had none of these symptoms so the doctors did not check for it.  During the surgery, the surgeon found the colon to have burst, releasing bacteria into the abdomen and the body cavity.  Many spots of bacteria infection were found on the small intestine which concerned the doctors.  However, for the time being, the doctors saved Rokie's life.  The radiologist reading the CT scan noticed a problem with the bowels.  Because of him, Rokus is still alive.

Rokie still has bacteria in the bowels, vomit in the lungs, and the still-failing kidneys.  Although E. Coli responds negatively to antibiotic treatments, the doctors felt it was critically important to address the bowel infection with antibiotics.  They had to weight the risks.  It turned out the E. Coli had already been fought long enough that when antibiotics were introduced, the toxin levels did not increase.  This was very good news.  After the surgery, the doctors decided to use an adult kidney machine, put Rokus on a ventilator, add antibiotics, and administer various medications to treat the low blood pressure as well as stabilize his vitals.

October 17, 2013

Today is the day after the first day of Hell.  Rokus had emergency surgery for his E. Coli induced HUS and other complications.  Yesterday we were told he might not survive the surgery.  After the surgery, we were told it was successful.  Today we were told he has made improvements which are extremely welcomed.