The whole story…

(sorry… The beginning of this is a repeat from a previous post and it is Long, but I wanted it all in one place)

On Tuesday, July 19th, Willa’s fever was still there… After she vomited one time too many during the night from Monday to Tuesday I could no longer sleep and decided to get up and take a shower and head to the ER at the Montreal Children’s hospital. I left my house at 4:30 AM and was there at around 5:30, bypassing traffic and arriving in an empty waiting room. When we arrived she didn’t have fever but we were seen shortly after and her overall look got the attention of the doctor. I explained the last few weeks and what had already been done and then was handed over to the next doctor as it was the shift change. The same tests were ordered, blood, urine and x-ray blood tests. As we went to the blood test her fever spiked again and they recorded it at 39.6 under her arm (so 40.6 C or 105F)

We waited for the results and waited for her to pee for a urine test and when she wasn’t doing so, they cathed her for just a sec to get just enough urine out… I hated to put her through that…. Especially because after a few hours of waiting for the results the tests came back mostly negative, or at least showing the same problems as were shown nearly two weeks ago… Her body is fighting off some type of infection and there is evidence of inflammation somewhere but they have no clue what it is.

The ER doctor said that he would like for her to have a bone scan as a bone infection could be likely as they could not see where the infection and inflammation was though they knew it was there. However, the bone scan is a test that is done over three days so instead of having us drive back and forth it might be a good idea to try to get it done in around our house in Sorel. I had already had an appointment at the pediatrician for thursday so he gave me the test results from her blood work and said to bring it to him.

On Wednesday, when I was out, the ER doc called to see how she was doing and wanted to make sure that I still had the appointment for the next day. Simon talked to him and confirmed that we did. That call, though showing at the doc was amazing, also put me on edge. I felt that something was wrong and we really needed to get to the bottom of it. Our Thursday appointment with the pediatrician confirmed that… Her inflammation levels in her blood were way too high and there was clear sign of infection. Along with the weight loss, she was in need of immediate care. The pediatrician mentioned that her symptoms could be a sign of juvenile arthritis and he too thought that the bone scan would be a good idea and sent me home with a note for the ER to have a consult and for her to be hospitalized.

I headed to the ER in the early morning, again before traffic, and there were only two people there. We met with the triage nurse and she was classified P3 which meant that she was called quickly and instead of waiting once in the ER we were met by a resident right away. After taking the history and reviewing the symptoms he was not convinced that a bone scan was needed but I insisted as it had been recommended by two doctors already. Another doctor came in with more questions and then she went in for a blood test (they took so many vials the poor thing) and then she had a hep-lock put in…. Like me, Wilhelmina has really small veins that run away from needles so both the blood tests and the hep-lock took many times to get in. We were then sent up to nuclear medicine for an injection of radio-active liquid for the bone scan and then were sent back downstairs to wait until for the actual test.

We went for the test and the technician was really nice and explained what she was doing and what we were seeing and when it was done she injected another liquid called Gallium for a test that would be done a few days later. We headed back downstairs and were promptly called back up because they noticed that the gallium had actually leaked onto the student technician’s hand and we had to make sure there was nothing else contaminated. We cleaned her up and then headed back to the ER to fix her IV. Just as we were about to head back into the waiting room to wait, the doctor stopped us and told us that we would be more comfortable in the observation area and that they had a bed for her there… I overheard something about her kidney at that point but I didn’t hear any details and after a few minutes of waiting we were called to the desk and asked to go back upstairs for an ultrasound.

By that point Wilhelmina was tired and cranky, feverish and she was not wanting to stay still and they needed to hold her down as they did the ultrasound. I wish it would have been easier on her but I felt that they were closing in on answers on why she had been sick for so long. After the ultrasound we started getting visits from the doctor, then the nephrologist and the urologist. The bone scan highlights inflammation in the body, but instead of showing anything wrong with her bones, it was her kidney that lit up. The ultrasound then confirmed that her kidney was very inflamed and her ureter, the tube that brings the urine from the kidney to the bladder was severely dilated, which it should not be at all. Furthermore, both the kidney and the ureter were full of puss and there was a blockage at the point that the ureter goes into the bladder.

They then realized that she had not had another urine test that day, though they had a negative test from a few days prior. The negative test was a bit alarming as it meant that there was most likely a full blockage. A full blockage would mean that the kidney might be acting like an abscess with the infection contained and if that was the case it might need to be drained. When the dip test in the urine came back positive there was a bit more hope that IV antibiotics would be enough. She was started on two antibiotics to cover as much ground as they could without knowing what bacteria was infecting her and then she was finally admitted and we waited to be transferred upstairs.

We had a bed near the window and Wilhelmina fell asleep deeply as the day had completely worn her out and her fever was still high.

I learned quickly that not much happened on weekends in the hospital. We had a few visits from the medical team, from nephrology and urology, and her temperature went down to a low grade fever that we only treated depending her mood, but besides that, everything was at a standstill. We hung out together on the chair, walked around with her in the sling and just were together. I though that there would be a problem with her sleeping with me but no one said a word. Not only did she not have an appetite for the weekend, but she became nauseated and started to throw up at the sight of food… Even seeing Cookie Monster eating a cookie on TV was enough to trigger her nausea.

On Sunday, my mom went and got Colin and Khéna from the house and brought them to the cabin and Simon and Xavier headed to the hospital with a few things I wanted from the house. Wilhelmina was so happy to see them and though she was sleeping when they arrived just hearing her dad’s voice woke her up and she went straight into his arms. They gave us the go-ahead to leave for an hour with her in the sling or so so we went to the mall across the street and had lunch and then picked up a few things at the grocery store and at the pharmacy before heading back to the hospital. When they came to plug her IV back in they realized that it had infiltrated and her hand was swollen with fluid. It took more than an hour and multiple pokes to get another IV back in and when they finally did they only place that they could find was in her foot which meant that she could no longer walk. We came back to the room and then Xavier and Simon needed to head out again. Wilhelmina was so sad when she realized that her dad was gone again… She is such a daddy’s girl.

All weekend we waited for the next tests and the urine culture results and by Monday, they had the results that the bacteria was E-Coli and it was sensitive to all antibiotics so they were able to stop the most invasive of the two that she was receiving.

On Monday morning we headed for the Gallium test she was already scheduled for and then a follow up ultrasound… This time, instead of screaming and fighting, she fell asleep deeply and stayed asleep for the whole exam… We were supposed to go for the VCUG test which is when they insert a catheter, inject a dye into the bladder and then do X-rays while the bladder fills up and empties which shows them the shape of the bladder and if she has uterine reflux which could be a cause for the ureter being dilated. However, they scheduled the wrong test and we would have to wait until the next day…

With the Gentamicin taken off, Wilhelmina’ nausea seem to taper slightly and on Monday evening she grabbed a rice cracker and ate about half of it and then licked a few other things without actually taking bites but we all took it as a good sign. They also stopped her IV as they realized that she was well hydrated and nourished with nursing alone and instead we just hooked up the IV when it was time for the antibiotics. There was a bit of hope that we would be able to try to get her on the Oral antibiotics soon and maybe head home…

On Tuesday morning, it was my birthday. At about 10am we headed to radiology for the VCUG and though it was not pleasant, Wilhelmina did the test so well and to make things easier she peed on cue instead of them having to wait for her to pee. The technician was so impressed and said that it would be so much easier if all kids could do that… EC has some hidden benefits 🙂 While they test was happening I was able to see the screen and we saw that she did not have reflux which eliminated one of the scenarios.

Also, during the night from Monday to Tuesday the nurse kept on seeing Wilhelmina react when they flushed the IV before putting the antibiotics in and by Tuesday afternoon we realized that that the IV had infiltrated again and needed to be taken out… again, it took 5 times and an ICU nurse to finally get another IV in, and even then it was touch and go for a while until we realized how to tape it up better to relieve the pressure on the IV each time she moved.

After the VCUG, we headed back up to the room and encountered the people in the hospital that are in change of family life/entertainment and they invited us up to the terrace on the 8th floor which is like a park in the open on the roof with an amazing view and scheduled activities for kids a few days a week. We went up there quite a few times after that… she mostly stayed in the sling but it felt great to get some fresh air after being stuck in the room for a few days.

On Tuesday her fever still seemed to be wavering and then in the evening it went up again, we treated it and then on Wednesday morning it spiked again…

Now the problem….

With reflux ruled out, they knew it was an obstruction but the positive urine culture a few days before should have meant that it was not a complete blockage which meant that the antibiotics should be working. Having her fever back was a clear sign that the antibiotics were not working though. Also, though the time that her fever was down was taken as a good sign, I kept on bringing up the fact that over the last month her fever would come and go in cycles and her fever going down would have fit into that cycles so I was still not convinced.

The next step then was to see how and where exactly the ureter was obstructed. However, the test that needed to be done was another nuclear test but it could not be done right away because she still had the Gallium in her system for the last nuclear tests.

The urologist and nephrologist both hinted that they would rather become proactive at that point but the pediatric team was staying cautious and they decided to add gentamicin back.

Then the resident that I had been speaking with since Friday was not in and as I tried to talk to the med student that was talking to me on behalf of the team I realized that he didn’t know much of her backstory there were too many things that he was not able to explain or his explanations were weak especaily when he was saying things that were opposite to what the specialists were saying and then I began to panic a bit.

Finally, the nephrologist came in to talk to me and I found out that I was on the same wavelength as her and that waiting for things to happen when they might not happen was not the ideal situation. She said that she would go talk to the team and come up with a solution.

A little later she came to say that what she thought would be the best solution was to insert a nephrostomy tube in order to drain the kidney.The tube would let the infection and urine drain and give the antibiotics the chance to work and we would be able to go home sooner and we would just need to go in a few times before surgery. They had told me about the scenario the friday before so it was not surprising… but it was a shock to think about her going for surgery…

However, the team was still wanting to try one more night to see if she would continue to have fever and see of she would start eating and and taking things by mouth. It frustrated me completely that the medical team was digging in their heels and wanting to wait when both the nephrologist and the urologist were wanting the same treatment and were both certain that was the only solution. The nephrologist had even said that she had entertained the medical team’s wishes and hoped to be proved wrong but thought that she was pretty sure that this is what would be happening from the time she met us on Friday and the urologist basically said the same.

With the nephrologist and the urologist on their heels they asked for another urine test and I was told that it would be a pivotal night. If the fever came back, if she didn’t start eating again, they would change their game plan… I also mentioned to the resident that we had seen since the beginning that she was urinating less and that she seemed to be flinching when I touched her back on the right side and that seemed to get things moving also.

During the night her IV infused again and for the fourth time she got another IV put in and again it took multiple people and multiple pokes to get it. Wilhelmina is amazing though, she may cry and make it known that she is not happy but she doesn’t fight it and just lets them do what they need to do, especially if they are explaining what they are doing to her. If they try to distract her though, she gets more upset.

On Thursday her fever came back in the late morning and things finally started to move… the Nephrologist came to see us and was “happy” that her fever was back as it was a nail in the coffin and proved their point that the infection was being contained in the kidney and like an abscess, it needed to be drained in order to heal. The urine test also came back negative and it was yet another nail as it meant that the original theory was confirmed, her kidney is completely blocked.

I called Simon to ask him to bring some more things as it was certain that we would be there for a few more days at least, so he got the kids ready and left with the next bus. It was amazing to see Wilhelmina perk up when she saw her daddy and brothers… we were going up to the terrace often but she never wanted to get down. However, with them there she was ready to play and have fun for a bit and though she was very tired afterwards, her smiles made it worth it!

Playing foosball on the terrace…

The brothers

The teams finally all started to work together and by the evening she was scheduled for the Nephrostomy first thing in the morning which meant that I had to stop nursing her by 4am… It was hard but it went better than I thought.

Friday morning we woke up at around 7am to get ready for the surgery. Nephrostomies are done by a surgeon in the radiology department. A tube is inserted into the back and placed in the kidney while X-rays guide the surgeon and then once inserted the kidney drains into a bag on the outside. We went down to the radiology dept. at 8 and they realized that the anesthesiologist had not yet been called and needed to call one down at last minute. The anesthesiologist finally arrived and I held her in my arms as they slipped the mask on her and she fell asleep. I headed to get coffee and a few minutes later the nurses came and found me and told me that they needed my consent to put in a PICC line as the IV she had again was not good anymore. Though the PICC line scared me, the largest complication is infection and with the amount of antibiotics that she is on there was not much chance of that and the insertion of a PICC line would mean that we would no longer have to deal with IV problems and endless needles.

(just before surgery…)

I then went upstairs to wait for her at the recovery room. The surgery lasted about 1 1/2 hours and when they called me into the recovery room she was already awake and I was able to pick her up and nurse her right away. I glanced down at the tube coming out of her back and it was full of puss… Every inch of it….

After an hour in recovery we headed back to the room and then began the visits from all of the specialists, residents and nurses… Some were surprised, some were not and I seemed to share the same view as the nephrologist and the urologists… Relief.

They had found the problem and though invasive, it was the best solution and now we would be able to go to the next step. Getting the infection out and under control, going home and then doing a few tests before heading for surgery in a few weeks time.

Nephrostomy tube in and what came out…

Full of “debris” or puss…

PICC line in…

When Wilhelmina woke up, most likely after sleeping off the morphine she asked for water and then grabbed a chip from a bag that was on the windowsill and ate half of it… I couldn’t believe it! Her colour was back, she was making more eye contact with everyone and by the end of the day she was even starting to smile at people.

The next day was even more amazing, she was singing and talking and even started to smile and laugh at the nurses. She ate. She ate some cereal for breakfast and then we went out for a walk and she ate a few fries and some ice cream and then had chicken and few veggies for supper. The difference was like black and white… My little girl was back. I can’t imagine the pressure in her kidney and how crummy she must have been feeling. She then got the nickname “princess” from the staff as she started charming everyone…

I had asked if I could bring her out of the hospital for a little while and they hesitated because of the nephrostomy tube but then I reminded them that I would be going back home with it and then not only did they say yes, but the doctors gave us permission to leave at anytime between doses of antibiotics.

So for the next three days we headed out between her 9am and 3pm doses… Basically staying in the hospital just for those and with each urine sample result we waited for her white cell count to go down. However, the results came back with the word “packed” instead of a number because there were just too many to count.

On Monday, a new team of doctors were on the floor and they decided to convince Urology to switch her from the two IV antibiotics to one oral one which would mean that we would be able to leave as soon as there were signs that the white blood cell count were coming down.

The next day, we had the OK to head home. We just needed to wait for a teaching session from urology on nephrostomy care, for them to set up care with the CLSC near our home for bandage care, have the PICC line taken out and do a final blood test. It took all day, but finally we left the hospital just after 8pm….

While we were heading home, the hospital called the house saying that her blood test came back abnormal and they wanted to see us in the day hospital on Thursday for a followup and if things were the same she might be admitted again… luckily, it seemed to have been a glitch and everything was in the normal range again…

So now we are home… she will have the nephrostomy tube until she has surgery in 6-8 weeks… so most likely in October. Her official diagnosis is pyonephrosis/hydroureter/hydronephrosis due to a ureterovesical junction obstruction. (UVJ) in her right Kidney. The next tests are on the 15th of August and those are an ultrasound to see what her kidney looks like when the infection in gone and then right after she has a nephrostogram which is a test in which they insert dye directly into the kidney from the nephrostomy tube and see where/how the ureter is obstructed. We will then meet with the urologist to see the results.

On the 1st of Sept she will then have a DMSA which is another nuclear test which will look for kidney function. After those tests are done, they will then know exactly what she kind of surgery she will need. Most likely though it will be a ureteral reimplant. She is not completely over the hump yet, but she is doing so much better and knowing what is wrong is so much better then the unknown…

I want to thank everyone for all the thoughts and well-wishes and help that was given… it means so much to all of us.

 update…. read the twist to the story here…