The Chronicles of Ellie Bellie Bear: April 2017

Tuesday, April 18, 2017

Why I let my 7 year-old carry a blankie

My daughter was given this pale pink lovely as a gift. Angel Dear lamb. She loved it. She actually still loves it. She never took a pacifier. She never sucked her thumb. Yet, she latched onto that blankie and chews it. We have multiple blankies. All are the same. Only Ellie realizes that they are not the blankie. Her blankie is now pale grey and nasty. I have 2 other blankies that she has deemed acceptable. Also grey and well loved. One is constantly in the wash.

She is 7 years-old and still chews on the the lovey. She sleeps with it. She takes it to doctor's appointments and it comes with us to restaurants and outings in her backpack which also holds diapers, wipes, and the iPad. In public, she has blankie, but she doesn't chew on it.

I was one of those parents who was going to be all "alright, she is 3 years-old, cut the ends off the pacifiers!". Yet, 7 years later, I still let me child suck on a blanket and take it out in public. The things is, I. don't. care.

Ellie also has a sleep disorder, she has great difficulty falling back asleep. She used to wake up sometime between 12:30-2:30am and not fall back asleep until the following night. One of the things that soothes her and calms her for sleep is the ratty lovey. Again, who am I to take it away? After all, mama needs some sleep too!

I don't really care because there are more important things to get worked up over. Never mind that my daughter is just now developmentally at a 3 year-old level. My daughter has been under anesthesia 14 or 15 times (yes, I have lost count) for some surgery or medical procedure or other. She has been hospitalized twice in the last year. ER visits. A least one appointment with a specialist visit each month. We have 3 last month. If her blankie gives her a bit of comfort, who am I to take it away?

So while my daughter may be 7 years-old and lugging around a blankie, I have decided to focus on other things. On more important things.

Tuesday, April 11, 2017

It is always something

I feel like every other week, there is something going on health-wise with Ellie. Yesterday, we had our follow up with urology. Ellie was quite naughty. She has this thing where she throws things off tables and giggles. She also throws things off exam tables like her iPad, which is now cracked.

We discussed Ellie's urinary issues where she strains to urinate and then may pees in her diaper 20 minutes later. We also discussed her urinary retention issues. There are a few options. None of which I am thrilled about.

Someone will only keep her glasses on in 5 minute increments.

The first option is to put her on the cath program. Essentially, we would have to catheterize her 3 x day. This is where you take a catheter (a tube) and insert it through the urethra into the bladder to allow urine to flow out of the tube. Obviously, this is not a good option for Ellie. It would take at least 2 people to hold her down while I catheterize her. Totally not happening.

The second option is a vesicostomy. This is where you bring the bladder to the surface of the stomach to allow urine to drain. She would have to wear a diaper to catch the urine and it would mean another surgery.

Fortunately, Ellie's kidneys, while small, are looking okay on ultrasound. So I decided that we need to go with a wait and see approach. Ellie will continue to get renal and bladder ultrasounds every 6 months. If it starts to look like there is kidney damage, we will have to look at those 2 options. I figure that her kidneys have been looking good for the past 2 years so they should continue to remain healthy.

We also were referred to nephrology (kidney doc). Like we don't see enough specialists. Over the past several doctors' visits to specialists, Ellie's blood pressure has been high and she is on clonidine which is a blood pressure lowering medication that helps with sleep. In children, aside from rising childhood obesity, blood pressure issues are related to the kidneys. Surprisingly, we already have an appointment for next week. I can't believe we don't have to wait months to be seen! I don't anticipate any kidney issues and I imagine they will just monitor her. Fingers crossed!

I was really hoping for a few months of calmness, but I guess that is too much to ask for. I am feeling down about all of this. Ellie always has something going on. We just cannot catch a break. Out of all of these health issues, only the sleep apnea is related to her having Down syndrome. I do not know why she has all of this, but I feel bad for her and I am sick of it all. Fortunately, most of these issues are minor and she is relatively healthy.

Wednesday, April 5, 2017

The Missing Cecostomy Tube

Oh Ellie Ellie Ellie. Life is never boring in the Theurer household. It is always something and that something can usually be traced back to the Bear.

This past Sunday, Ellie decided to remove her cecostomy tube. She went in her room for one minute and walked out into the kitchen completely naked, minus the tube. I about died. This of course necessitated a trip to the ER where they are to insert a Foley catheter (a urinary catheter) into the hole to keep it open.

The thing is, we couldn't find the tube. I mean she had to have just removed it. Right?! Maybe. Did she remove it earlier and we just didn't notice? We checked her clothes, all the rooms of the house, drawers, the trash can and nothing. How did it disappear? Also, how she get this tube out without any pain is beyond me.

My parents were visiting so it was mom, dad, Andrew and me all accompanying Ellie to the place of germs. I discovered a few things: 1. a cecostomy is so rare that the docs had never heard of it; 2. it was up to me to educate them on what a cecostmy is, what the tube looks like, what size catheter to use, and how far to push it through the hole. That being said, they were really good about contacting the radiologist on-call.

It wasn't a bad experience. For mild "emergencies" you can schedule an appointment. Yes, an appointment at an ER. They took us right away. The doctors saw us right away. They placed the tube right away. The X-ray confirmation occurred quickly. Then we waited another 3 hours.

Sorry for the gross picture. This is when she had the infection.
Anyway, this is what the tube looks like outside the abdomen.

The normal protocol for when kids pull out their cecostomy tubes (apparently this is relatively common according to interventional radiology [IR] ), you place the catheter and then called IR the following morning to get on the day's OR schedule. The ER docs decided they wanted her on the schedule before we left the ER. At first they thought they could do it that day through fluoroscopy. Then they realized that they were not sure they had the correct size tube. Then they worked on getting us on to day's surgery for Monday. They got it all worked out.

Monday, I call IR and request that they double check to make sure they have the cecostomy tube in the correct size. Apparently, the tubes were under lock and key over the weekend which is why the ER docs couldn't figure it out. The tubes are always in stock according to IR.

I don't know why she was so excited.

Day surgery went well. We have decided to keep her tube covered with heavy tape and gauze and to deal with the skin issues that will arise because of bandages. The IR nurse gave us an abdominal binder to also cover the tube. I cut it down to size and it goes from her lower ribs to her hips. Ellie does not seem to mind this.

I am anxious and paranoid. How are we going to keep this thing in?! My thought that if it comes out before a year is up, we should just let it close and I talk to GI about the Malone procedure instead. The Malone procedure involves bring the appendix to the belly button and then you catheterized the belly button. The enemas would go through the catheter. There is no button, no equipment. I will be squeamish.

As for where the tube ended up . . . well let's just say Sophie dog had it in her mouth the following morning. Yuck!

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