Picking up where I left off on the New Year’s Day post…

Pictures taken right before we left the hospital – she was feeling GOOD by this point.?? 🙂

So Wed morning I got her out of bed and noticed that her diaper was bone dry since 9:30 PM Tuesday and she was unusually cuddly.?? She fell back to sleep in my arms immediately.?? She has never done that.?? I wouldn’t have been as surprised if she would have had a fever but there was no fever.?? For the next hour I laid her different places figuring she would decide to wake up if I wasn’t cuddling her.?? I laid her on the couch…in Tanner’s arms…on my bed….nothing.?? By 11:15 AM I was getting really worried.?? I could rouse her a little bit but she would just go right back out.?? I also was then worrying about dehydration because she still had a dry diaper.?? I woke her up and gave her a sippy in my arms.?? She drank an entire sippy of water.?? I then filled it with orange juice and she drank the entire thing.?? I figured that would perk her right up but it didn’t.?? She went right back to sleep after drinking 16 ounces of fluid (which was HIGHLY unusual all by itself).?? I then called and made a 2:20 Dr. appointment.?? Jim came home to watch the boys and we woke her up again at 1:00.?? Her diaper was still dry and Jim notice that her belly was very distended and hard.?? She started complaining of some belly pain.

I couldn’t fathom dehydration because (a) even though she had a fever Sunday – Tuesday, she had never been listless and she was drinking and eating normally and (b) I had filled her up with about 20 ounces of fluid by that time and it wasn’t coming out.

We then assumed it to be a UTI.?? Worried that she was about to be in enormous pain with all I had given her to drink, I rushed to the pediatricians office a bit early.

When the on call PA saw her she was immediately concerned about the hard belly.?? She wondered if it was an appendicitis.?? We also noticed at that time that Tori wouldn’t sit up on her home (better said, couldn’t rise to a sitting position on her own).?? She didn’t seem to be in enough pain for an appendicitis though so she agreed that her bladder was over filled and that she had a UTI.?? Another Dr. came in to see her and they both agreed to try an in office catheter before sending her to the hospital.?? We expected to drain a LOT from her bladder but barely anything would come out.?? To make matters more concerning, the urine tested normal.?? No UTI.?? When we put her diaper back on, she immediately urinated some of the fluid out but the Dr. said that was due to the catheter.?? They decided that we needed to go to the hospital immediately and wanted to transport her but Jim was on his way by that time so we decided to drive to Mendy’s Place.?? The Dr. then reiterated that we were to make NO stops before getting there.?? It was obvious to me she was concerned -?? so were we.

We got to Mendy’s at about 4:00.?? I LOVE Mendy’s Place by the way.?? We saw three Dr.s while we were there and they all admitted to being baffled.?? They started with blood draws (which were very difficult to get out of Tori) and then cathed her again so they could test the urine better in the lab.?? They also did a CAT scan but the bladder was so enlarged they couldn’t check any other organ.?? I could have told them that.?? I had been saying the whole dang time that she wasn’t dehydrated and that her bladder was full…..

By 9:00 PM we were no better off.?? She had now gone nearly 24 hours without urinating!!! (Again, she hadn’t urinated on her own since the cath in the peds office). ???? I told them that I thought that needed to be handled immediately because she had to be in tons of pain over that.?? They agreed and put a foley in her (catheter that stays in).?? Over the next three days an unreal amount of urine came out and the Dr later told me that she had been building it up in her system as her bladder couldn’t have held it all.

In the meantime, the blood tests came back.?? The Dr.s didn’t like the looks of the first one, so they drew blood AGAIN from my screaming baby, put an IV in her, and retested the blood.?? Somewhere into the evening three Dr.s came in to talk to us.?? They said they had no idea what was wrong with Tori and that the none of her symptoms were adding up.?? Because of the fact that her platelet count was so low and white blood count was low (actually lower the second time around), they admitted to being very concerned.?? They then told us that they needed to transport her to the hospital for more tests.?? They had been talking with specialists by phone and all agreed that Tori needed to see a urologist, a hematologist and an oncologist.

Somewhere around 11:00 PM were were transported to St. Joe’s.

David and I had a phone conversation in the hospital that night that went something like this:

David:?? Part of the problem Doni is that you have been through so much with your kids that you EXPECT worst case scenario to happen.

Doni:?? Yes David, your right but you do have to admit, we went in to visit the pediatrician and now we are having this conversation while I am sitting at SAINT JOSEPH’S!

I sat there counting and realized that between me and my children, we were making rounds with all the valley hospitals.?? Need to know about an over night stay at a local hospital? I may be the resource for you.?? Here is our list:

Banner Thunderbird – Tanner born there and Ty 4 week stay there

John C. Lincoln – Gall Bladder surgery and many ER visits

Arrowhead – 2 day procedure following gall bladder surgery

Chandler Regional – Ty born there

Banner Desert – Ty 8 week stay

Phoenix Children’s – Ty one week for surgery and apnea issues, one week for apnea issues, all his specialists there.?? Visited the peds floor and PICU with Ty

Scottsdale Shea – Tori six day stay LAST January for RSV and pneumonia

St. Joe’s – Tori’s recent four day stay.

That’s eight.?? EIGHT.

Anyhow…

So we got to St. Joe’s by midnightish and settled into our own room (thankfully).?? Two Dr.s came in to see her and again, both admitted to being baffled.

There were many more blood tests done (and Tori learned to say “DONE” and “NO MO” quite well), an ultrasound, a VCUG (to see if the bladder was refluxing into the kidneys), several Dr.s looking at her and finally it was concluded that Tori had experienced a rare and unusual reaction to a virus.?? The drop in her levels was idiopathic (meaning related only to the virus and temporary).?? The kidney retention issue also attributed to a viral reaction.?? Apparently, kidney retention is a viral symptom yet an uncommon one especially for a 20 month old baby.?? We will be following up with more blood tests to ensure that her levels come all the way back up and will follow up with a urologist as well.?? While the platelett count did rise from the 90,000s to 114,000, I will not feel good until they are back in normal range and low normal is 150,000. They removed her foley on Friday and she was able to urinate on her own within a couple of hours and has done just fine ever since.

We really don’t know what to think of it and can only assume that this diagnosis is correct (and we certainly hope that it is as it is by far the most benign).

(Side note on a funny moment…

Tori was miserable to say the least and would cry to look at a nurse or Dr. most of the time.?? Her blood draws were terrible to get because her veins are very tiny and blow easily.?????? They would try and try and sometimes would have to quit – even started using a J tube (which is lidocaine). Add that to four cathetars and an IV and she was NOT a happy camper. At one point, a chatty nurse was talking to us and kept asking if we needed anything else.?? Tori finally looked at her with solemn eyes and pointed to the door.?? LOL!?? She gave that nurse the boot and the nurse read her sign language loud and clear).

So that’s what happened.

I would be remiss though if I didn’t comment on one particular point throughout this whole experience.?? I knew what you would be thinking when I told Jim to post that an oncologist was going to be seeing her.?? I am not naive to the dangers of WBC and platelet count issues.?? In fact, when the three Dr.s came in to talk to me about this in the ER, I was just short of a meltdown and they knew it.?? It was that moment as a parent that is part of your worst nightmares.?? Doctors speaking in hushed tones and watching your face carefully for a reaction.?? Their pitch dropping when they said the word “oncologist” as they watch closely to see if you apprehended what they just said and what that could mean.?? It was evident I understood perfectly.?? They asked if I needed some time alone before they talked to me anymore.?? From there on out, I could tell by the behavior of the nurses and Dr.s that they though an oncological problem was at least a possibility.?? In fact, the attending nurse hugged me, told me how special Tori was and asked me to call her personally with updates when we left.?? Not usual behavior for ER nurses.

So yes, I was scared out of my mind.?? I couldn’t talk about it.?? I didn’t even want to say the word to my mom over the phone and wasn’t sure I could get it past my lips but I knew we needed the prayer support.?? I also knew that I am not one to grieve alone so I figured I had better start preparing my circle of influence for the possibilities even if I was in NO FRAME to discuss them.?? I had an unspoken pact with my family – the oncology questions would not be researched or discussed with me.?? I couldn’t go there.?? NOT.?? AT.?? ALL.

Jim chose to stay in the hospital with me most of the time.?? He too was very concerned.?? I suspect nearly as much for his wife who was about to go over the edge.

One precious moment in all of it though was when I had a talk with Father in the late night privacy of St. Joe’s that first night.?? I was sobbing but underneath it all I realized I was, yet again, in a different place.

The night Ty was born, I thought I had come a long way with my grief over the losses of babies.?? Even though I was on my knees vomiting in our garage before I even got to the truck, I was able to release Ty to God before I saw him.?? I had decided to quit fighting God on the issue of my children and all I asked was that I be given the opportunity to tell him I loved him, was his mommy, and say hello and goodbye.

It was still about me though.?? The sacrifice “I” was willing to make.?? What “I” was willing to do and say to please my Father’s heart.?? The trust I wanted to gift Him with.

Not this time.?? At Saint Joe’s our conversation was much different.?? My heart settled in on one thing.?? Who He is and how much HE LOVES ME.?? I didn’t know what He would do or allow.?? I didn’t know if my daughter had leukemia or a cancerous tumor creating a blockage (which later was what her St. Joe Dr admitted to looking for).?? I did know that God redeems all things.?? Even death.?? I still can hardly talk about this out loud.?? You always wonder how you would feel/react if someone even mentioned the possibility of cancer in your child.?? Now I know.?? There is nothing on earth more terrible.???? There is also nothing that surpasses how much the King of all that Is loves me.?? So I sat there and dwelled on that.?? Just that.?? And again…lived to tell about it.