Yet another C Diff update...

Let me first begin by saying yet again we are so thankful for the outpouring of thoughts and prayers from our family and friends.  It has made all of this so much easier to handle and we wouldn't be able to handle all of this without y'all!

 

It's hard to see here but this was the TV screen in the room.  It was "Get Well Town" with a sign below that said "Welcome Grant"

Our trip down was pretty smooth and we had rather mild traffic on the way there.  We still made it in 4 hours with 2 stops along the way (not too shabby).  After parking the car, they walked us up to our room and we met Allison, one of Grant’s nurses (she was amazing!).  She took vitals and turned Grant into our “robot man” as Matt was affectionately calling him since he had a pulse monitor on his toe and heart monitors stuck to his chest with wires hanging out of his hospital gown.  We were then able to get a little settled in.

Robot Man playing with his wires

Just a Side note:  The entire time we were in the hospital Grant was in isolation because of the contagious nature of C Diff so every person that came into the room had to suit up in a gown and gloves and he was not allowed to leave the room AT ALL!  Talk about stir crazy!

It wasn’t long before the constant stream of people in and out of our room started.  We first met 2 doctor’s (one resident and one intern) whose names we do not recall and one of them even warned us that we would meet so many of them that they take no offense at being pointed out as this guy or that woman.  Dr. Kahn (Grant’s primary doctor) stopped in and went over some specifics of what we could expect for the next couple of days.  She also mentioned to us again that we would most likely have quite a few visitors stopping in because the University of Chicago is a teaching hospital and Grant’s case was rather rare and he is the first here at the hospital so people are interested in what is going on and boy was she not lying!  It felt like the door never stopped opening!  Matt said he felt like we were in Grey’s anatomy or something.   We then met with one of the anesthesiologist about the procedure then 2 more doctors came in… Dr. Kahn’s fellow Dr. Young and Dr. Kirchner (the head of GI department).  Every person that walked through those doors asked the same questions over and over.  I told Matt I should have made a pamphlet before we got there to hand out to everyone.  It also seemed that everyone insisted on listening to his heart, lungs, and stomach as well as pushing and poking at him.  He wasn’t too happy about that.  

Getting a little sleep in his cage...

Hanging out with daddy while the "GoLYTELY"

 does some work

After all the formalities, came the not fun part of the night… placement of the NG tube which was used to administer the “GoLYTELY” to cleanse Grant’s bowel prior to the colonoscopy.  Two nurses placed it in the first try and then the x-ray tech made sure the placement was correct but Grant was not happy and yanked it twice and the nurses had to fix it.  He finally got used to the tube and having the tape on his face.  The nurses were then able to start the bowel cleanse liquid at a rate of 100 mL per hour for 3 hours and 200 mL for the last hour before bed.  He could not be given any of the solution while sleeping at night because they were worried he my aspirate in his sleep.  To our initial dismay, there was no bowel action the first night.  We woke him up at 4:00 am on Wednesday morning and turned the pump on to hopefully get things moving.  7:00 am rolled around and the poop was flowing.  We wouldn’t even call it poop… it was pure liquid messiness.  The doctors had concerns his bowel cleanse would not be complete in time for the colonoscopy so there was talk of an enema.  Luckily, it never reached that point and we were able to get by with just the NG administration of the liquid.

The name GoLYTELY is extremely deceiving.  Notice the jug is half empty?  That was a 4 Liter jug and the missing half was pumped into Grant's stomach via the NG tube and there was nothing LYTELY about his poops

Then came the bad news…

One of Grant’s lagging stool results came back positive for something other than C Diff.  This particular bacteria is called plesiomonas so they delayed Grant’s procedure indefinitely at that point leaving us in limbo not knowing what was going to happen.  The GI doctors wanted to be completely confident moving forward so they called in the infectious disease doctors for a second opinion.  Dr. Kahn in the meantime had also been in contact with many of her colleagues and other peers who have performed the procedure seeking their opinion.  Grant was initially scheduled for the procedure at 10:30 and knowing there was going to be a delay we sat and waited and waited.  The infectious disease doctor we spoke to at 11:00 was very up front with us about everything and said he saw no reason not to go forward with the procedure given Grant’s case history.  Well, at 11:30 thinking we were all set to move forward Dr. Kirchner (the head of GI) and Dr. Young (Dr. Kahn’s fellow) came in and informed us that Dr. Kahn did not feel comfortable moving forward with the procedure. 

Needless to say at this point I broke down.  I was so upset we weren’t going to finally close this chapter of our lives and even more upset that they had already put Grant through all that they had only to cancel the procedure (At this point, Grant had not had any food or drink for 24 hours either!!!).  We spoke some more and they said they would speak to Dr. Kahn one more time.  They then left Matt and I to process everything.  At about 12:45, we still hadn’t heard from Dr. Kahn and were up in the air not knowing what the next step would be.  Dr. Kahn walked in shortly after and had a long conversation with us about why she wasn’t comfortable moving forward.  Basically, with the fecal microbiota transplantation (FMT) being so experimental especially in children they just didn’t feel comfortable moving forward with it while Grant had this underlying infection (even if he may not be symptomatic from it).  If you took the time to read about the plesiomonas, you saw that many of the symptoms can be very much like c diff with vomiting, diarrhea, and fever.  It can also cause inflammation in the bowels and colitis.  It was her worry that they would do the colonoscopy part of the FMT and take biopsies of Grant’s bowels that would come back positive for abnormalities and inflammation and not be able to attribute those abnormalities to Grant’s history of C Diff or the plesiomonas because both infections are present.  She did not feel comfortable scoping a 17 month old twice (once now and once later if there were abnormalities) if there is no need for it.  She would rather treat Grant for both the C Diff (again) and plesiomonas, make sure the plesiomonas is gone and comes back negative, take Grant off the C Diff medication and see if it comes back and then scope him and do the FMT if it does (history repeating itself we are rather certain that it will).

This all happened around 1:00 and we knew at that point that we would be going home.  Grant was finally able to eat which he was very happy about but as we learned nothing happens fast around there.  Dr. Kahn had to speak with infectious disease one more time about how we wanted to treat Grant moving forward for both the C Diff and the plesiomonas and they also wanted some additional blood work so we had to get that taken care of.  Needless to say we sat around until 4:00 when infectious disease came into see us.  Now note it wasn’t just one doctor that came it… It was literally the head honcho of the infectious disease department, 3 residents, and 2 interns.  The head of the department did all of the talking and he was wonderful at explaining everything yet again and reassuring us that we were doing the right thing by not moving forward at this time.  They left and the GI intern (who I might add was pretty much a complete idiot) came in with the final prescriptions for Grant.  To treat the plesiomonas, he will need to be on an antibiotic twice a day for the next 10 days (cifloxin) as well as going back on vancomycin using an crazy taper schedule that I won’t even try to detail here.  They made up a calendar for us and he will be on and off vanco until September.  The longest stretch he will be on it is in the beginning for two weeks straight but then he gets some pretty long breaks in between a dose a day here and a dose a day there.  After final discharge instructions, we were thankfully on the road by 6:30 and surprisingly made it home by 9:45.

Sorry this post has gotten so lengthy but we went through so much in the 30 hours that we were there.  As always we ask that you continue to keep us in your prayers.  Once he has cleared the plesiomonas and finished his vanco again we will very most likely be right back where we were the last couple days.  We already have a taste of what it is like and as I described here it is not fun.  It was a crazy emotional roller coaster and we thought we would be coming home today putting this behind us forever.     

Now I must end on a somewhat high, funny note.  At one point during the cleanse, Grant let out a very loud, juicy bubbly shart.  At the time Grant was standing up and he lifted his head and looked at Matt and I and said "Poop?"  Matt and I burst out laughing and Matt said "Oh Man" to which Grant responded "Oh Man."  It was absolutely hilarious and summed up the entire pooping/cleanse experience.  

17 Months

We have had such a great month!  The weather has warmed up and we have had tons of play time outside and are thoroughly enjoying it.  Our garden is in the ground and our tomatoes have some blooms already.  We are looking forward to a warm, busy summer (we have 7 weddings!), seeing my parents on the 14^th, and Brian and Ashley’s wedding on the 16^th!   

 

Growth:  On 5/16 at Grant’s appointment in Chicago he was 31.25” and 23 lbs 7.7 oz.  I imagine he is still pretty close to this but has maybe gotten just a smidge taller.  Grant is in all 12-18 and 18 month clothes, size 4 and 5 shoes, and size 4 diapers still. 

Teeth:  This month his bottom right molar and upper right cuspid popped through bringing his tooth total to 11.  He’ll have a full set in no time! 

Language/Comprehension:  We have a talking parrot on our hands.  Grant tries to say nearly everything that comes out of our mouths these days (we better watch out)!  Some of his words this month include:  all done, tractor, boat, bubbles, choo choo (more like “to-to”), bock bock for what the chicken says, diaper, his own name 5/15, up 5/17, tractor and duck 5/27, banana or “nana” 5/28, coo coo like our clock 5/31, bubble 6/3, 6/5 Elmo, Asher and David (his friends from daycare), Grandpa, and uh oh 6/7.  He even said Aaron which is David’s dad’s name from daycare.  He likes to point at your eye and say “eye” 5/21 and point to your nose and say “mose.”

Personality:  Grant has been an absolute joy this month.  Of course we always love him but he has been so fun and playful.  He is usually very happy with the occasional tantrum here and there.  He has had very few biting incidences this month and is getting much better at controlling himself when he feels the urge.  He actually stopped himself at daycare mid-biting motion when he was making his move to bite another child.  

Mobility:  Grant is all over the place of course but the thing that caught us off guard the most this month are his new-found acrobatic skills.  On 5/24 we were sitting on the floor playing and Grant was behind me and all the sudden I hear the pitter patter of little feet on a hard surface and I turn around expecting to see him running around the kitchen.  Well low and behold, he was on top of the coffee table proudly marching in place.

Grant playing in his new pool in the backyard

Things he likes:  Climbing on the furniture by himself and then running around and falling down, putting lotion on (which he calls bubbles… still working on that one), the hokie pokie and turning himself around, pointing to every tractor, lawnmower, semi, and cow he sees.   

Funniest moment(s) this month:  When you ask Grant to say grandma, he says papa and when we pull in the driveway at George and Denise’s (Matt’s parents) he says papa over and over again.  It pretty much never fails that if you say grandma he will say papa. 

When you ask him how old he is, he holds up one finger.

Walking into daycare last week, Grant put his hands up and shrugged his shoulders and said uh oh.  When I looked up, I noticed the life-size Jesus they have on the wall was missing.  Grant was very concerned about where Jesus went and kept saying uh oh.     

Biggest change(s) this month:  His speech!  Just when we were on the verge of thinking he was a little behind and going to be slow talking, boy has he made up for it!  He is a chatterbox which he never really had been in the past. 

Firsts:  Trip to the Shedd aquarium during our Chicago visit on 5/16.  Grant’s favorite exhibit was by far the penguins

On 5/17, he was sitting on his potty and the look on his face changed and you could tell he was thinking.  He looked at me and said all done and sure enough he knew he had pottied and was all done! 

Figured out how to blow bubbles 5/18

We took our first trip of the season on the boat on Memorial Day weekend and had such a great time.  We were out there for almost 5 hours and he never once cried, whined, or got upset.  He absolutely loved splashing in the water and cruising along. 

Driving the boat with mommy

Grant also got to see Grandpa Fisher’s semi, sit in it and sit in an army truck.  As excited as he is to see trucks on the road, he was a little timid about seeing one up close and personal.  The week after seeing George’s semi he saw a truck on the road and said truck and papa!  It was so neat to hear him make the association on his own.   

Sitting in Grandpa's truck

Sitting in the army truck with daddy

Illnesses:  On 5/16, Grant started his first 5 day break after 30 days on medication for C Diff.  Unfortunately, it was only a day and a half before the C Diff returned.  It was by far the quickest it has ever come back.  He went back on the meds one day early and we are in the middle of our second 30 day dose.  The good news is that we are tentatively scheduled for 6/20 or 6/22 for the fecal transplant in Chicago (see C Diff Update Post).  There has been one slight variation from the original plan.  Initially, the doctor had planned on using a NG tube to introduce the donor stool into Grant’s system but she has since opted to use a colonoscopy.  This option is a bit more invasive and worrisome for Matt and myself as parents because he will have to be put under general anesthesia for a "rather lengthy amount of time” and we have heard terrible stories of adults going through colonoscopies (mainly the night before and the preparation) and hate for him to endure this.    

We had one other hiccup on the illness front this month.  On 5/29, Grant had a mild fever, he was ok the next morning but then I got a call from daycare saying he had a fever of 101.9.  By the time I got there 45 minutes later, the fever was up to 103 and we headed to the doc. The doctor said his ear was very mildly red and agreed to try ear drops to clear up ear infection but a 103 fever seemed high for such a mild looking ear.  By the time we got home his fever was up to a little over 105 and I was very worried.  I called the doc back and I put Grant in a tepid bath and tried to push fluids and it brought the fever down.  Grant also had a very small rashy area on his tummy that I brought to the doctor’s attention and mentioned another child at daycare had hand, foot, and mouth.  The doctor didn’t seem too concerned at the time and said the rash appeared to be “heat rash.”  Well, little did he know it was indeed hand, foot and mouth because over the next couple of days Grant developed a rash on his feet and legs, a small area on his arms, and a couple spots on his face.  

Not the best picture but you can see some of his rash here