Rolling Stones

Noah's Rolling Stones that is....

My poor little man is in so much pain. He spent the whole day just crying and suffering. We were able to get his Surgical Consult moved up a week so his appointment is now on Tuesday. It just breaks my heart that he has to wait even that long. Plus, who knows if Dr. Downey will agree to remove it or when.

On a good note... I started using cortisone cream on his rash and it improved 100% after one day. So it must have been just eczema. I have it but very mildly. So maybe it's the meds making his worse, who knows. I knew it was dry skin on his head and face. I had been doing everything possible to moisturize it to no avail. But his tummy and arms looked like a different kind of rash. But the cortisone cream got rid of it so it must have just been dry skin too. Although.... yesterday Dr. Samson-Fang did ask us to switch formula "just in case" he was having a reaction to dairy. Which is completely insane considering I do not know one person on my side or Shane's side of the family that has any major food allergies, including anything lactose or dairy related. But... I figured it was possible that the C. Diff had killed his villi again! Which would make him lactose intolerant. So I bought the $30 small can of Formula that is neither Dairy or Soy (I got it from the Hospital's Outpatient Pharmacy). I was told it was possible he wouldn't drink it because it doesn't taste very good and with his oral aversions.... but he drinks it fine. And here's the thing... He's been screaming since he started it... but I think he was on his way there before anyways that's why we had the impromptu visit with Dr. Sampson-Fang. It also has a bit more fat in it than his other stuff which could upset his gallbladder. But here's the weird thing... since he started it, his poop looks more normal. Noah has NEVER had normal looking poop. I haven't seen mucous in his poop since he started it. And lately his poop is more mucous that poop. (Sorry if your about ready to vomit. I have learned that once you become a Mom, poop is a normal topic of conversation... fine, I'll admit it, it has ALWAYS been a topic of conversation in my family.)

Anyways... I should know more this Tuesday after his consult. But I must ask... Please pray for him. He is in so much pain. He just cries all day and I know he's suffering. Pray that the Doctors will be able to fix the problems and he will be strong and come out healthy and everything will go smoothly. I would really appreciate it. The thought of him having surgery this close to Transplant frightens me to death. And because of his delicate condition, he will most likely have to stay in the PICU for observation post surgery and the thought of him in any ICU or even being admitted to the Hospital again... scares me to death. I'm hoping I can keep it all together knowing how much this will help him. Heavenly Father has blessed him SO much already, I can't see the Adventure ending now. So I do find peace in that.

Some New Pictures of Noah

These were taken this morning.

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

What's Liver Got To Do With It?

Noah is still sick. His liver enzymes are double and that along with the white stools, pain, and not absorbing nutrients, oh and I can forget the rash, they figure something is obviously wrong. Could be minor, could be serious. We spent all day at the hospital yesterday and going again today for more tests and lab work. He was almost admitted to the hospital last night but they decided to wait until after todays tests since he seemed stable enough. He's been taken off all formula and can only have pedialite right now. He doesn't seem to mind. I never knew the kid could drink so much. He LOVES is (Lilly hated it). But he had already lost some weight and he'll continue to lose with the Pedialite but I guess if he's not absorbing nutrients anyways its sixes.

I'm typing this on my phone while at the Doctors so as soon as I know more I will update. I'm just praying the figure it out and it turns out to be something minor and he doesn't have to be readmitted.

Oh one last thing... his echo's look great so it isn't related to his heart and so far hasn't caused any problems in that area.

Our First ER Visit

Last night we made our first ER visit post-transplant. The reason? Poop!

Noah has always had strange looking and very foul smelling poop. At first it was attributed to either a virus or the meds that killed off his intestinal villi and gave him a carb intolerance. When that seemed to get better and yet his poop was still "odd" we decided it must be the medicine. He's taking several serious medications that I'm sure have to mess with your gut in one form or another. Then yesterday....

Noah has been extra cranky the last several days and from what I could tell, it seemed he was having a tummy ache. This worried me as a tummy ache and poor eating can be a sign of rejection but when I mentioned it at his weekly clinic visit they said he was doing fine. The crankiness continued and yesterday out "pooped" (a small attempt at lame humor on my part) the pictures you see below. The color on the pictures doesn't give it justice. This poop was WHITE CURDS with some PURPLE CURDS mixed in. And lets not forget the green slimy booger looking stuff. Now, it can't just be me, but this is not normal baby poop! And don't even get me started on the smell. It's not normal smelling baby poop. It is by far the worst thing I have EVER smelt. And I've smelt some seriously nasty things in my life, but that's an entirely different post.

But I digress...

So I emailed the pictures to Alison. I needed a second opinion. I hate paging his PCP for stupid things and I needed to know this wasn't stupid. And since I trust Alison and feel comfortable enough to contact her (even for stupid things... Thanks Alison!), I sent them on. Now, my FAVORITE Transplant Coordinator is expecting a baby (YAY!!!) so I was worried these nasty pictures would make her sick, but she was kind enough to take a look and was as surprised as I was. She confirmed that I should in fact call his PCP.

I really like Noah (and Lilly's) Pediatrician. Dr. Samson-Fang is wonderful. So I paged her and she asked if I could send her the pictures as well. Once she had a chance to look at them, she called me back. She said that while she does everything she can to keep families out of the ER, she felt very strongly that we needed to go and just make sure that the purple stuff wasn't blood or tissue. (We are all too familiar with worrying about NEC pre-transplant so I understood her concern.)

So, I called Emily his TC here at PCMC and gave her a heads up. Gathered all his papers, packed him up, and off we went.

I was very pleased once we got there because both Dr. Samson-Fang and Emily had called to tell them we were coming and that we couldn't wait in the waiting room. So we got right in without waiting. Several Doctors came to check out the poop including a GI Specialist and he thought that since the tests showed no blood or tissue, he was fine. We could just follow up with Dr. Samson-Fang later to see what's causing it to be so weird. But he really wasn't worried at all. He almost seemed intrigued since Dr. Samson-Fang was going to send him the pictures.

We also tested his blood to make sure his Cyclosporin levels were still good in case he isn't absorbing as he should be and then we got an echo. Denver requires that anytime we go to the ER we need to get an echo to rule out rejection. So we got one and all was well. His heart looked just as it did on Thursday with no decrease in function or leaking valves. So off we went. In total we were there about 3 hours. But the time passed by so quickly because we didn't really have to wait for anything. I must say it was the most pleasant, and by far the quickest ER visit I have ever experienced. Now don't get me wrong, ER visits are never pleasant. But since all was well and it wasn't a huge headache, it was as pleasant at an ER visit could possibly be.

So, no need to worry. All is well with little Noah. He just has the strangest poop I have ever seen.
What do you think?...

The House That Love Built

While in Denver, we were blessed to have a room at the Ronald McDonald House. There are no words that can describe what this meant to me. Being away from Family and Home, it was such a comfort to stay at a place that was understanding of our situation. Where we could meet and support other people in the same situation. Where we were humbled and strengthend by the love of the many volunteers.

I am so indebted to them. I will spend the rest of my life trying to repay them for this great service. I plan on volunteering at my local RMH as soon as the RSV season is over but in the mean time, I wanted to draw attention to the great need these places are in to give this wonderful service to those who need it. They are constantly in need of various items to help the house run smoothly and to provide for the people who are staying and are not in a situation where they can provide for themselves.

With that in mind, I want to send out a request to all who read this. If you are looking for ways to show your Thanksgiving this month or for a charity to support during the Holidays, I ask that you please consider donating to the Denver Ronald McDonald House. They have many different ways that you can do this but the easiest would be a cash donation that you can make by clicking HERE. Even a small donation helps!! How wonderful would it be if the staff at the Denver RMH suddenly got overwhelmed with a rush of donations!!

You will never truly understand or appreciate what these donations provide for these families. So, please, believe me when I say it could not be appreciated more.

Thank you so much for any donations you make. It is like you are personally giving ME a gift by doing so. I know you will be blessed for doing so.

Much Love,

~Crys

Another Milestone!

Today Noah had his first Clinic appointment at Primary Childrens Hospital. Everyone was very nice but the process was not as smooth as The Childrens Hospital in Denver. I am very happy to be home... I just wish I could have brought the Hospital with me.

Anyways...

Clinic went well and I think it will only get better as they come to know what I expect and I become used to their way of doing things. Afterward, Noah had his first well-baby check up ever. So... for you mothers out there you know what this means.... Shots. Poor little thing had to get 3 immunization shots today. He did super well though. He stopped crying as soon as I picked him up and he wasn't cranky at all the rest of the day. But... the best part... Noah has now been removed from Oxygen Therapy during the day!!!! He was off his oxygen for a whole hour at the Doctors and he was in the high 90's and even 100 some of the time (when he wasn't moving his foot.) He will still stay on it at night because breathing tends to be shallower while sleeping. I am getting an O2 monitor to check him to see how he does while he sleeps and then if he does well, he can come off at night too. They also did a chest X-Ray today and the Doctor said it looked really good so he wants to check with the Pulmonologist from Denver and see what the concern is because he doesn't see anything.

So two milestone. O2 removal (my baby is finally unplugged!!) and shots. But that's not all.... I think he has two teeth trying to break through. I can see them just under the gums. So we are definitely using the Tylenol these days.

It was kind of odd though. Today as we walked across the walkway between Primary's and the University Hospital (Cardiac Clinic is in Primary's and well baby is at the U) Shane and I reflected that the last time Noah was taken down that hallway it was right after he was born and he was being wheeled by the Life Flight team. Brought back very sad memories. But all I had to do was look at him sleeping in the stroller to be filled with Peace. So of course I had Shane, Lilly, and Noah pose for a picture. (I'll post it soon.)

It's so great being home and being home with everyone. No one is missing. No one is somewhere else. We are all together. My Joy is complete.