Medical Maladies – Page 2 – a hippie with a minivan

Fever and fears…

In just a few days it will be a year since our whole ordeal with Wilhelmina began and six months since it ended. If you are new to reading my blog, here is a bit of the summary. In June of last year we went camping in New Brunswick and PEI and in our last few days in PEI, Wilhelmina started a fever and was vomiting. She then got better, then got worse, then better and worse. She stopped eating, she stopped drinking everything but from the breast, she was lethargic, she lost more than 3lbs and trips to the ER, and pediatrician were not finding anything. For more than three weeks I had a feverish and very sick little girl and she was only getting worse. Finally, the pediatrician demanded that she be hospitalized and the ER finally did different tests and finally found the problem.

She had a Kidney infection. But not just a kidney infection, her kidney was blocked and was filled with puss and was basically mimicking an abscess. She had pyonephrosis and hydroureter/hydronephrosis due to a congenital malformation of her right ureter. After a week of IV antibiotics, she was not getting better, the kidney was blocked off. She had surgery and had a nephrostomy tube inserted through her back, into her kidney and all that came out was puss. Within hours of surgery she started eating again, after a month of being able to eat a bite. You can read the whole ordeal in detail here. We stayed for another week in the hospital and then went home with the tube for three months while we waited for tests to make sure that her kidney was still functioning.

Then on October 4th, we headed to the hospital early in the morning for surgery. She was taken away from my arms at 7:55am and was wheeled into recovery at 4:30pm. The obstructed (malformed) segment was a lot longer than her Urologist would have thought (5 cm long)and he had to cut out much more than he thought he would have to. That made the remaining ureter too short, so he had to lift the bladder up and attach it to the muscle higher up so that so that it would fit. He also had to taper the ureter which was still 5cm in diameter, so that it could be reimplanted into the bladder and to make things harder, if all of that was not enough, the infection left scar tissue and damage all over. It was the longest day of our lives. .

Two very intense weeks in the hospital (you can read all about the surgery and stay here) and then we were home again. A few more tests and then finally in January a last test confirmed that everything was working well and we had a healthy little girl. It was over, but not forgotten.

A few days ago, Simon remarked that it being the same time of year and almost a year to the day, that it was bringing back bad memories and she better not get sick anytime soon because it would make him sick with worry. I was feeling the same way. Then during the night from Saturday to Sunday I felt she was hot. I got flashbacks of the feverish nights of last year. Her fever was on and off all day yesterday and then she started vomiting also, more flashbacks, more worry. I am not scared of fever, if it was one of the boys I would not even bat an eyelash, but I am scared of her having a fever that mimics her fever of last year, especially since she has not had a fever since her hospital stay in October. Yesterday I was panicking inside, knowing full well that even if it is an infection, it will not result in what happened last year…But, the head and the heart do not always meet.

During the night, she was feverish, vomiting and kept on going to the bathroom but nothing would come out and then this morning her urine was darker and a bit smelly. I called her urologist this morning and got a prescription for a urinalysis faxed over to the local hospital. Even if I had a horrible experience in the past, the results will go straight to her urologist, so I am less worried of using the local services with that knowledge. If something needs to be done, I have complete trust in him for this.

I hate feeling so afraid of such a simple and harmless thing such as a fever and hopefully we will be through it soon.

What a coincidence for it to happen now though…

And now… my dad…

The morning my uncle died I got the news that my dad was missing from the hospital. He had received an overdose of meds and had received bad news and decided to go home. He called the ambulance a few hours later and was returned but was in end stage renal failure and refused to go through dialysis. I talked to him briefly that night and he said he would call me back.

(My dad and I when I was about 9 months old)

My Dad was another that had a hard life. Drugs, alcohol, partying, jail time and countless other hardships. My mother left him and took me with her in the middle of the night when I was about 18 months old. He tried for years to find me and to get me back. I met him again at the age of 9 and we had some rough times and times that I stopped all contact. Finally, in the years before I got married I let him back into my life.

(My dad, brother, Xavier and I the last time we were all together)

Over the week I prepared for my uncles funeral and waited for my dad’s call but my mind was elsewhere. He was in and out of the hospital often because of his COPD so him being there was not a shock especially since he spent 2 1/2 months there around the holidays. I won’t go there with the kids so I told myself that I would go see him on the weekend. Saturday was the day of my uncles funeral. In the afternoon, I got a call from my aunt saying that things were not looking good. I needed to stay at the funeral but I decided to head to the hospital before heading home. It was nearly 10pm and the security guard wanted to stop me but I told him that I was going up anyway. It was a shock to see him. His legs and belly were so swollen because of the fluids and he was suffering. It tool him a few seconds to realize I was there and who I was but when he did he sat up and for 15 minutes he said goodbye to me. We held each other and said “I love you’s” and then I left to let him sleep.

On Sunday, I decided to go spend the a bit of time with him and then go to supper with a friend to change to give my emotions a bit of a break. It was a rough time at the hospital with him. The swelling was at a point where water was coming out of his skin and dripping down. He was hallucinating and seeing people who were not there. He was alternating between talking about current events, talking about the future, talking about death and repeating over and over that he wanted to die and then being completely confused and not there at all. He told me that he wanted to go be with his mom… he had always said he would not die before her, but now that she was gone, he wanted to go be with her. He was tired but could not sleep as much as he tried. I knew that being there was not helping him relax so I said goodbye and helped him lay down and gave him a kiss and left. I talked to the nurses just before leaving and I knew that he was nearing the end. I told them to call me if there was any changes.

I went for supper and talked with my friend for a few hours which felt great and then drove the hour back home arriving at about 11:30… I looked up what my dad was going through and it confirmed what no one wanted to say. Simon asked me if he should stay home Monday and I said no, that I would call him if something happened and he said “I just hope that it doesn’t happen in the night again”… I told him… “It always happens in the middle of the night”

I wrote my half-brother on Facebook (he doesn’t talk to our dad) and told him in a few words that it probably wouldn’t be around much longer… and the 5 min later my cell phone rang. I just knew why. The nurse on the other end told me that he could not wake my dad up and that though his oxygen was at the highest setting, his breathing was laboured and that I should come in.

I left within minutes and like 8 days before I drove down the highway in the middle of the night to say goodbye to a loved one. I talked to Annie and my mom on the highway to keep my mind occupied and arrived at the hospital at about 1:25am. The nurse met at the elevators and I went to be next to my dad. He had been agitated but as I arrived he calmed down. He had suffered for so long and I didn’t want him to suffer for longer than he should. I asked the nurse what was the best way for him to go. He told me that if we took him off the oxygen he would be gone within a few minutes. I told him to do it.

I held his hand, I kissed his forehead and watched him take his last breaths and said goodbye to him for the last time. He died just before 2am.

I gathered his things and went to my car and wept and then headed to my grandmother’s house to try to relax a bit before morning. I fell asleep around 4 and woke up at about 7 and started to make a few phone calls. I went and got my aunt and headed over my other aunt’s house and we talked about what he would have wanted and I then realized that being his daughter, I was the one that needed to make all of the decisions and do everything. I knew that he didn’t want anything special, he didn’t want the funeral at a funeral home and all that comes with it. So I decided that we would forgo that, even though one of my aunt’s doesn’t understand, and instead, everyone that wanted to honour him memory would gather at a restaurant and we can raise a glass to him and be together and think of the good times.

(with Xavier, Colin, Khéna and Wilhelmina)

My grandmother, his mom, who died on new year’s day, had not been buried yet, so their ashes will be buried at the same time, next to each other in the family plot. He will be next to his mom.

I have so much to think about now… so much to do and so much to process… He was just 60 years old and he too is gone…

I’ll miss you Normand…

I have a healthy little girl!

Today was Willa’s last test to make sure that her surgery was a success and that everything is now working as it should be.

The VCUG is a test done in the radiology department. A catheter is inserted into the bladder and a contrast fills the bladder while an x-ray machine takes images. When the bladder is full, the patient then needs to urinate and again images are taken to see if there is reflux of the urine (or dye) going back into the ureters.

The technician that was there was nice enough but she had trouble getting the catheter in. Having a catheter put in is already unpleasant but when someone has trouble it is worse…and when they still can’t get it in and then have to try again it is excruciating. Especially when you have to be held down and don’t understand why it is all happening. So Wilhelmina cried and looked at me with the saddest eyes and my heart just broke. When they finally got it in and got it secure and filled her bladder, it was time for her to pee. Last time she did this test it was easy. I just signalled for her to pee and she did. But this time was different. She is now 6 months older and she doesn’t like going to the bathroom in front of strangers and she doesn’t usually go to the bathroom strapped down on a cold table. She told me she had to pee but she just couldn’t let herself go. Finally after about 10 minutes the technician poured a bit of cold water on her feet and she went and it was done. She stopped crying immediately and I could see the relief take over her. A few seconds later the catheter was out, the images were done and I was able to take her in my arms and she just held me. I got her dressed and she was back to herself but she was different in a way also. I hate putting her through things like this.

The results were not in but we could see pretty clearly that there was no reflux by looking at the images. We headed up to the urology dept. to see her urologist and he said the same. She is fine. There is no reflux. She is healthy and everything is now working as it should. The surgery was a success and now we can get on with our lives. No more antibiotics, no more worrying about how things are working… We just need follow up with ultrasounds every year or so to keep an eye on things… but that is it!

The only thing now is that we left the hospital and stopped by a friend’s house on the way home and Willa needed to pee and she was in so much pain from that catheter. It was awful seeing her that way. When we got home though she soaked in a warm bath for a while and it was better but she was still in pain while she peed. Hopefully it will be over with soon though and we can finally just get back to normal.

But now I have a healthy perfect little girl with a few battle scars but who has been an amazing trooper through this whole ordeal and can now work on just being a normal little kid.

Catching up….

Last weekend with all we did in the house, I didn’t get around to taking the holiday pictures that I wanted in front of the tree to include in the family picture book I am making. So on Monday, I asked all the kids to get dressed, got dressed myself and took pictures. Simon wasn’t there and Wilhelmina was in a bad mood, so taking pictures was a bit interesting, but it worked!

Not only did I get photos of the kids, Xavier took the camera and got some photos of me and Willa as well…

And even a rare photo of me nursing… not that I don’t nurse often… it feels as though she is always nursing at the moment… but because it is rare that I am in front of the camera instead of behind it. Honestly, the only way I get pictures of myself is when I ask for a picture to be taken…

She looks so small cuddled in my arms nursing…

Another thing we did last week is to go to the hospital with Wilhelmina for a follow-up Mag3 Renal scan…. The test was a bigger one than I thought. For the other tests in nuclear medicine she would have a dye injected and then we would wait a few hours and then head back for images. This test however started the second that the dye was injected and because timing is everything in this one, and there were two injections involved and her bladder needed to drain etc. our first stop was the nursing station where she had an IV and catheter put in. The nurses were amazed at how well she reacted to having the IV put in. She wasn’t happy, but didn’t fight and didn’t need to be held down. I told them that her veins were awful and they saw what I meant when they put the needle in and her vien rolled away. The nurse was patient, took a deep breath and changed the needles direction and got it. Only one poke and a rare one of the many, many IV’s that blood return. The second she got it and I told her “I love you” she said it right back directed at Wilhelmina for how easy she made it. They hooked up the IV so that she would be hydrated and then put the catheter in which was not fun at all. When the catheter was in she cried and cried and screamed peepee until I told her to just let it go and pee around the catheter… she did and it helped.

We headed to the nuclear department and she was strapped to the table (her arms free) and they injected the dye and the test started. The camera was under her and nothing moved so she just talked to me, watched a movie and held my hand. At the 30 min mark they injected a diuretic (the goal of the test is to see kidney function and see how well they drain) and they helped her empty her bladder with the help of the catheter and she stayed calm through the whole test. Another 25-30 min later they analysed the test quickly to make sure at least 70% of her kidneys had drained, they did so we were able to leave right away.

We went to see her doctor after the test but he was in surgery so the secretary said that we would get the result either by the end of the day or the day after… He called the next morning to tell us that everything looked great. Only one more test in a month and then we will hopefully be able to put this all behind us.

The last thing I want to catch up on is what we are doing in the house. I am not completely finished the kitchen but we are a bit closer. I was able to clear up a problem spot that we had next to the water machine.

I found a picture of what it used to look like… that little container with drawers was where we kept blank paper, makers etc… and that basket above it was mostly things that I wanted access to but that did not have a “home”. We would tidy it up often but within a day or two it would go back to looking like that…

Furthermore, I had a high storage bin with drawers in the sewing room with craft stuff that was never being used because it was out-of-the-way. So I decided to bring that into the kitchen in the opposite corner, clear it out and again only keep what we will use. that cleared up more than enough space to put the stuff that was in that basket. The smaller bin now has a crayons, pencil crayons and markers all in their respective drawers and can be put on the table when the kids are using it.

That space that got cleared up ended up being the perfect size for my dehydrator. I was getting ready to put the dehydrator in a bottom cupboard but that would mean that I would have to get it out and move things around when I wanted to use it. So having it out-of-the-way but plugged in is great for me and now I have that much more counter space back. It’s great!

I also did my kitchen drawers. I was surprised that I didn’t need to take much out as I use most of it on a regular basis, but it did need a big over haul of organization and once that was done it looked like it al took up only half the space that it did before.

The other thing we tackled was our room. I went through my clothes and took out what I just don’t wear even though I might like the idea of wearing it and then cleared out our closet and got all of the dust out. We really don’t have much clothes hanging so our next step might be to put Simon’s dresser in the closet and then we could put Wilhelmina’s toddler bed in our room, she has never slept apart from us but I think it would be fun for her to have a space of her own.

So the big cleanup is continuing and our regular house work seems to be suffering a bit because we are focusing on the stuff behind the scenes. But when we do clean up now, things are actually being put away instead of travelling from one temporary home to another and are now gaining permanent homes.

I am loving the results and can only see more positive ahead.

One of those days…

If it were not for NaBloPoMo I would not be posting right now.

I am sick. It’s not fair for a mom to be sick. Who takes care of us? We have things to do, we have people to tend to, we have meals to make. My head feels like a watermelon that is about to explode. Heavy and stuffed to the brim…

But my day went on as usual… breakfast, cleaning up, starting stock for supper, hanging out with the kids, lunch, doing other misc. things in the kitchen, watching a movie, making supper etc…

At this moment, I am ready to be done. I finally finished making super and it is in the end stages simmering on the stove. Chicken and dumplings, ultimate comfort food and great sick food…

Of course being right before supper it means that it is the witching hour when kids are getting tired and hungry and everything is getting on their nerves… especially their siblings so I gave them the look (not my proudest moment) and asked them to go do something in the computer room so that I could have a bit of quiet and they went and did just that.

Luckily Willa also fell asleep about 45 min ago so I can sit for a few minutes trying to keep my head from exploding while waiting for Simon to get home…

As moms we should be exempt from colds…

It’s not fair to be sick and be a mom at the same time…