A C.Diff-erential

What a week.

Noah has spent every day this week (other than today) at the hospital or in the Emergency Room. Here is how it all went down.

Monday afternoon Noah's poop turned white with curds and mucous. His Pediatrician said we needed to go to the ER to make sure there was no blood. (Noah had also been very upset, not eating well, and had a painful liver for at least a week or so.)

We go to the ER, they check for blood, there is none so they send us home. After we got the routine Echo that is required if we ever got to the ER since he has had a Heart Transplant.

Tuesday Morning, Noah is still not well and then pukes. I called his Ped again and she wants to see him. I bring him BACK to the hospital and after she checks him out she decides he needs an X-Ray of his abdomen, stool samples, and lab work. She also says no more formula and puts him on straight Pedialyte. After all this was done, I ended being at the hospital ALL day. Later that day, his Ped calls to tell me his liver enzymes are too high and that I need to come back tomorrow for an Ultra-Sound and more lab work.

Wednesday we go BACK to the hospital for the Ultra-Sound. I also brought a diaper with me because now Noah definitely has blood in his stool so she meets me in Radiology to pick it up and ends up staying with me. Since she was there, I didn't have to wait for them to "read" it because the technician told us and also called in the attending "reader" so we didn't have to wait. Noah has 3 Gallstones. And they are NOT little. One is 1.2 cm, another is .6 cm and they didn't measure the 3rd. But those are fairly large for such a small baby. His Gall Bladder is also full of sludge (their word, not mine). It didn't look as if anything was plugged at the moment and his pancreas looked ok too. But after consulting with the GI team, Dr. Samson-Fang (his Ped) said we needed to go BACK to the ER for a Surgery consult.

We went back to the ER. We had ANOTHER echo... which I would just like to mention was perfect! Dr. Everett isn't even worried about his Co-Arch much anymore and even said that this echo was the best one yet. So finally... some good news.

Anyways, he had another echo, had to get an IV for fluid and lab tests (I requested the best of the best on the IV team because Noah is near impossible to get anything other than a heal prick out of but I was SO impressed. This girl went right for it, didn't dig, and got it on the first try. AND it not only opened for fluid but it even gave blood. I was SO relieved. I've seen experts fail at PICC and ART lines because he is so difficult!) They did more stool samples and we waited.

Then.... before the Surgeon could even come talk to me I got a call from Dr. Samson-Fang. The stool samples from yesterday came back positive for C.Diff. NOOO!!!!! Lilly was unfortunate enough to get C.Diff AND Rotovirus at the same time. C.Diff SUCKS. Terrible, Terrible diareah and it can only be cleared by a few very strong antibiotics. And that's in kids with healthy immune systems. It isn't even killed by sanitizer or bleach. All you can do is wash and wash your hands and rinse the bacteria down the sink. Anyways... The diareah was a new development so the C.Diff was probably brought on by the other poop cleaning out the good bacteria from his intestines and then him being immune suppressed... and out it comes.

So then the Resident Surgeon comes to talk to me. Now, unfortunately, I was NOT impressed with her. She had this vibe about her.... she didn't care what I thought (SHE was the professional and I was just someone who she had to talk down to) and she wasn't the easiest person to have an open discussion with. So I was VERY happy when the Attending Surgeon came in. Dr. Downey was WONDERFUL! SO incredibly nice and I felt like he validated my feelings as Noah's mom.

But back to what he said... Noah's current gallbladder attack has stopped. So at the moment he's ok. The main problem right now is getting the C.Diff under control which can be difficult since he's immune suppressed. But he didn't think it was a good idea, nor did he think it was currently necessary to do surgery to remove the Gall Bladder at the moment.

I then shared my feelings. I feel this diagnosis answers a LOT of unknowns about Noah. It explains his random spells (days at a time) where he cries and cries as if he's in pain and then goes days when he doesn't cry or get upset at all. It also explains him refusing to eat. Since it obviously makes him sick when he does. (Did I mention he drinks TONS of Pedialyte?). I also told him that while he currently is okay, I believe it was because it had now been 2 days with no formula and only Pedialyte. I completely believe that a stone had in fact blocked a duct and that's what was causing his liver pain, the bile to be blocked which in turn caused the white stools and the rash (bile salts can cause a rash when they back up in the system). I then said... I DO NOT want him to have surgery. I feel its MORE than important to do everything we can to prevent any sort of surgery until he is a year post transplant. He's not even going to be circumcised until then... But, I also don't want him to suffer and continue to have problems because we don't deal with it. As many of you know... getting your gallbladder out is almost like a right of passage in my family. I was even starting to have problems in Denver but I'm doing better now. So it's probably going to need to come out some time in the future, regardless... but I am all for it NOT being NOW!

Once he realized that Noah hadn't been on formula for a few days he came up with this plan.... We wait and treat the C.Diff. If he can make it through that without any symptoms, we will then run some tests to help create a better picture on whether or not his gallbladder is working anymore or if its gone bad. If it's gone bad, we will remove it. If the symptoms ever come back... we will assess removing it. If he starts to get sick again once he starts formula again then I need to call him and he will assess the situation and we will probably have to take it out laproscopically regardless of the C.Diff. but of course, that just makes it more complicated. But I agreed with this plan of attack and felt much better. Dr. Downey even said that he thinks a Moms intuition and feelings regarding their children are usually right on so he took my thoughts VERY seriously.

So, no surgery for now. But they were still going to admit him to treat for the C.Diff.... Hang on just a second. Why can't I treat it at home? I just need to make sure he doesn't get dehydrated, keep his bum clean and give him his meds. He's more likely to get better care and LESS likely to catch something else if he just comes home. (This is now about 10 pm). I pleaded my case and got them to agree. ONLY if I take him back up tomorrow for more labs and a Ped visit to make sure he is doing ok. I agreed. And we finally went home.

Today was alright. He has slept most of the day and I tried to re-introduce formula into his diet but he didn't want it. And it was SUPER hard to get him to take the antibiotic (not the best stuff... almost as bad as the Verapamil). But then... tonight, I finally got him to take 2 oz of straight (non-fortified) formula. He drank it and went right to sleep.... then about 10-15 minutes later the screams of pain came. His sats dropped to the 80's (I now have a pulse ox machine to spot check during the night so he can come off the O2) and he was NOT happy. When I picked him up I could tell it hurt too. The spell passed quickly and he went back to sleep. One time isn't enough for me to jump to conclusions. I didn't rush off to the ER again.... but I will mention it to Dr. Samson-Fang tomorrow. I have a feeling that he will need to have it removed sooner rather than later. Then we can get on with healing and learning to eat better.

Now on to why he probably has gallstones in the first place. When Noah was born and couldn't eat he was put on TPN. TPN is like liquid nutrients but VERY strong. It can't go straight into an IV as it would burn. It has to go in a central like. But if you are on it too long, it can cause liver and kidney damage and.... Gallstones! Noah was on it a LONG time. The whole time before his transplant and for a LONG time afterwards. So that, along with a predisposition to having a bad gallbladder.... and here we are.

So, I will try to update tomorrow on how it all goes. I do have a LOT of work to catch up on. I haven't been able to work much since I haven't been home. My boss has been SO incredibly supportive and understanding. I just can't be more grateful.

And if you made it this far and read my entire post, you deserve a treat. So get one....
Much Love,
~Crys