Chicago: Take 2

Well, this trip started out very similar to our last trip (read about that trip here).  We had excellent luck with traffic and made it to the hospital in under 3 hours and didn't get stopped a single time.

Grant and Daddy looking out the window

Again, even once we reached the hospital everything was very much the same.  We met our nurse as well as the team of GI doctors (a total of 5 this time).  We had tried to take it easy on food leading up to arrival because we knew it would help with the prep.  The doctors informed us that we were going to try a different approach to the bowel cleanse.  They said if we could get Grant to drink enough miralax (7 packets and 1000 mL of pedialyte mixed with a little apple juice) then we wouldn't have to do the NG tube attached to a pump and "Go Lytely."  We were more than willing to try!  We struggled to keep him awake as long as possible (almost 10:30 pm) to keep drinking (he was allowed clear liquids only until 4:00 am).  All in all, he was able to drink almost all of it.  He had about half of the 7th packet mixture left but his stools were beginning to clear so they said we didn't have to do the NG tube.

Grant washing the windows

We finally allowed him to go to sleep and all was fine until the nurse came into the room at 3:00 insisting she had to start the IV because after 4:00 am he was on a no food and drink order because of the surgery.  I tried explaining to her that last time they had no concerns and were just going to the IV once he was under anesthesia.  Of course, she was only following orders and we had to wake him up from a dead sleep, hold him down, and let her jam a needle first in his hand and then in his arm.  Needless to say, regardless of whether this nurse was doing her job we didn't care for her much.  She was rude and seemed rather incompetent and our nurse, Sarah, on Friday confirmed as much when we asked her about our night nurse, Hana.  Hana kept saying over and over how she didn't want to do the NG tube if it came down to it and we should "really get him to drink all of his miralax."  Well like I said, he did amazing with that but how can you ask an 18 month old child to make sure he drinks his liter of liquid so it makes her job easier.  She also pointed out that she "really didn't want to do his IV either and hoped she could find his vein."  This isn't exactly what worried parents want to hear in the hospital.

Drink, drink, drink!

Overall, Grant did so well this time around.  Last time, he was in stranger danger mode quite a bit with all the faces coming and going but this time he wasn't too bad.  He said hi to nearly everyone that walked through the door.  It was so funny when the nurse came in to do vitals every 4 hours.  Grant would say "no, no, no" and as soon as she would start Grant would chant "all done, all done."  And then as everyone was done and walking out he would wave bye and say "bye bye" like he was dismissing them and he had won.

Friday morning started out very calm and relaxed.  Grant continued to clear his bowels and handled having an empty stomach and not being able to eat or drink like a champ.  His favorite activity while here was by far sitting in the windowsill and playing whether he was "washing windows", playing cars, or blowing bubbles he was a happy boy.  I made my deposit for the transplant and we waited patiently for the GI team to come in again before the surgery.  

     

The keyboard kept him entertained for awhile

Again, playing in the windowsill

We initially thought we were schedule for surgery at 11 so we were beginning to get a little impatient when 10:45 rolled around and they hadn’t taken us down to pre-op.  Well right about that time Dr. Kahn and the GI team came rolling in with the final paperwork and last minute procedure stuff.  They also said that we were actually schedule for 1:00 so we had more time to kill.   They had to take my stool specimen over to a lab in a different building and do all of the prep on it and then come back for surgery.  At about noon the surgical nurse came up to take us to the surgical floor for pre-op.  Once arriving at pre-op, we thought it would be a short wait and away he would go. Well we waited and waited and then waited some more.  At one point the surgical nurse came in and said we were waiting on the GI team to get back with my poop for the surgery.  Well I was finally at wits end and went and asked what was going on and about that time the GI team came in to say they were done. 

Grant and mommy hanging out in the windowsill

Throughout the process, we had to remind ourselves continually to be patient because this was just as new to all of them as it was to us.  It is all about trial and error and the stool prep did not go as smoothly as anticipated.  Apparently it isn’t as easy to take poop, put it into a kitchen blender (which Dr. Kahn purchased new at Bed, Bath, and Beyond on Thursday night!), add saline (a special type they previously stocked by the “case load” but now was very hard to find around the hospital), and then filter it to inject into Grant during the colonoscopy.  After our final meeting with the GI team before the procedure, the anesthesiologists came in to give Grant something to relax him before they took him back.   

Grant was taken from us at about 1:45 and at about 3:40 one of Dr. Kahn’s fellows (Dr. Young) came into the waiting room and told us the procedure was complete and they were moving him to recovery.  She was one of the doctors that had to break the news to us last time that we weren’t able to move forward with the procedure and witness my breakdown and sob session.  She said she just wanted to come in and personally tell us they were done and gave me a big hug.  Moments later, Dr. Kahn walked in to take us to Grant. 

When we walked in, Grant was out cold still and snoring away.  Dr. Kahn and the team talked more about how everything went.  They said it couldn’t have worked out better.  They first performed the endoscopy and took biopsies along the way (Click here to see the surgical report and pictures... nothing too graphic).  They then did the colonoscopy and moved up his rectum throughout the length of his colon/large intestines to the opening where the small intestines empty into the large intestines (terminal ileum).  At this point, they administered a total of 160 mL of the prepared stool and ended the procedure (Click here to see the surgical report and pictures).  Everything visually looked completely normal, no inflammation, bleeding, or pseudomembranes.  Although, we won't be sure until the biopsies come back that there hasn't been any permanent damage.  Dr. Kahn had also mentioned during her time in post op that they had been informed that insurance had denied our 2^nd night at the hospital because normally an endoscopy/colonoscopy is outpatient and we had already been allowed one night but they wouldn’t cover two.  The social workers called the Ronald McDonald house for Friday night and we were approved to stay there.  We waited about 30 minutes for Grant to sleep off more of the anesthesia and the nurse asked us to wake him.  Upon seeing us, he immediately said “up.”  The nurse laughed and said "That’s all we need!  He’s back with us and I’ll let the anesthesiologist know so you can go back to your room." 

Recovering in the room

Yummy Food!!!

When we arrived back in the room, Grant was beginning to wake more and we were trying to get him to drink some water.  He had a very raspy, hoarse voice and cough from the breathing tube during surgery.  Well needless to say, Grant ended up vomiting on me.  The doctors gave him some anti-nausea meds and we allowed him to sleep for about 30 more minutes.  After waking him again he felt much better.  Trying to take it slow, he downed a cup of lime sorbet, applesauce, water, saltines, and teddy grahams  over about 30 minutes all without getting sick.  You could watch the change in his attitude.  He was literally bouncing before our eyes as he was eating because he was so happy to have food.  Although, after mixing apple juice with pedialyte and miralax it may be a while before he wants any!  He refused apple juice with an emphatic "no, no, no!"    

Grant so happy to be with monkey in the car

 on the way hom

Matt and I debated the pros and cons of staying another night closer to the hospital but decided to head home on Friday night.  Before being discharged, they gave him some Imodium to hold his stool as long as possible and we were on our way after all of the formalities.  We pulled out of the hospital at 7:15 and high tailed it North.  

Possibly TMI but our world revolves around poop... Grant did have a bowel movement this morning.  There have been several studies done after fecal transplants and the recipients stool takes on the look, smell, and consistency of the donor's as well as bacterial make-up which is the point of the transplant in the first place.  Well, Grant was no exception and his poop this morning was completely normal and looked and smelled very much like mine do! LOL!  Therefore, we know at this point and time it worked!  However, there is no guarantee his C Diff won't or can't come back in the future if he were to go back on another antibiotic.  He will most likely always be susceptible and sensitive so we will have to tread lightly.  For now, he is back to his normal self running all over the place and playing "ball."  He still has a lingering cough.  The next several weeks are going to be wait and see kind of times.  We will re-culture him in about a week just to have a negative result on file and go from there.  Dr. Kahn said some protocols call for weekly testing for 3 months but she doesn't see the need unless he is symptomatic again and we suspect his C Diff has returned. 

Again, we thank everyone for all of your thoughts and prayers throughout all of this.  Although, we feel relief now we know we need to take one day at a time.  We feel so blessed and so loved to have such an amazing support network in our lives.  We love you all!

Love,
The Fishers