Emergency surgery....surgery #12

I will post a longer version of this when I can do this for my computer and not from my phone. But I wanted to post a quick update in Riley. We had to go in for emergency shunt revision surgery today. Riley is doing really well, but we will be in the hospital for at least the next day if not two days.

Thank you to everyone one who sent us their thoughts and prayers today.

Return of the apnea

I am been meaning to write this up for a while.

On 1/20/12 Riley went for another sleep study. And, the results came back saying that her obstructive apnea is back. Her overall episodes per hour were up from 5.7 hour (obstructive (ob) - .2hr, hypopnea (h) - 2.2hr, & Mixed apnea (MA)- .7hr) to 16.6hr (ob - 2.0hr, h - 10.3hr, MA - .8hr, & Central (C) - 3.5hr). This falls into the severe obstructive apnea category. When I first saw these numbers I was concerned that they had gone up but not overly so until I saw that they were high enough to fall into the serve range

Now you might say "If I saw that my child stopped breathing 16.6 times in an hour while sleeping I would be freaking out. Why aren't you?" And I was concerned but the fact that Riley is on oxygen at night which helps to keep her oxygen up even if she stops breathing for a few seconds helps to keep me from freaking out. Also 16.6 was nothing compared to 68.7 which was the number of episodes she was having in December 2009. Riley's first sleep study results showed she was having 68.7/hr. (ob - 38.6/hr, h - 15.6/hr, MA - 3.0/hr, & C - 8.4/hr). So when I saw a 16.6 I was disappointed that it was up and a little worried but though we would just increase her oxygen.

Well the doctors had other ideas; Her pulmonologist felt that the obstructive apnea was back for one of two reasons: (1) Riley's tonsils and adenoids were blocking her airways and if they were removed then the obstructive apnea would go away again or (2) her Arnold Chairi could have gotten worst, as your brain stem controls breathing. Riley's pulmonologist wanted us to go see her ENT before we got in touch with her neurosurgeon.

We went and saw the ENT and she thought based on the result so the sleep study that it was a good idea to go ahead and take out her tonsils and adenoids. On 3/16/12 we went in to have Riley's tonsils and adenoids out, we also were going to have her trach site and g-tube site completely closed. During the surgery her ENT decided that her tonsils were not very big and they didn't need to come out.  

On 7/2/12 Riley had a follow-up sleep study that came back it the result of 26.6/hr (ob-14.0/hr, h-10.0/hr, MA-1.6/hr, & C-1.0/hr).  So those results were not what we were looking for.  The  pulmonologist wants Riley to wear a CPAP. HAHAHAHA...is what I say to that.  We have had the machine for 6 weeks can still can't get her to wear it with it turned on.

We also went for two MRIs on 8/28/12.  One was a cine MRI, the hope of this one was to see exactly where she is obstructing.  We went on Friday to see the ENT and were disappointment that they were not able to get her to obstruct during the test.  So we got no answers.  The second was a regular brain MRI which showed slight changes in her brain.  Her neurosurgeon has scheduled us for a Shunt Patency test this coming Thursday.

A shunt patency test is used to evaluate the proper flow of cerebral spinal fluid through the shunt system and to make sure there are not any blockages. The scan involves the injection of a radioactive tracer into the shunt reservoir by the nuclear medicine doctor. Pictures will be taken to follow the path of the tracer through the shunt.

So we hope at after we meet with the neurosurgeon on 10/2/12 we might have so more answers.

Seizures

This is a blog of wrote last summer but never posted for some reason.  I am posting it now.  Enjoy.

Last June (2011) while we were in NC, Riley had what we believed were 2 seizures.  So we took her to see a neurologist.  She decided that she wante to get an EEG (An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain.) to determine if she was having abnormal activity. 

It is similar to a sleep study with all of the pobe on your head, but that is where it ends..  She HATES getting the probes put on.  As son as the tech put on his gloves and picked the first pobe Riley started to freak out.  It only got worst from there.  She screamed at the top of her lungs as he put a;; the pobes on.  She was bright red, snot and drool running down her face.  I always feel bad for the techs, they always look at me like "Do you want me to stop?" And I always tell them that she is fine and just to keep going that she will get over it.  Then you get the "Are you sure look?"  I figure that she is already pissed so you might as just keep going and I will calm her done when it is all over. 

After he left and turn out the lights she calmed right doen, just like I know she would.  She even fell asleep.  The test lasted about an hour then at the end they wake the child up and flash light in their eyes trying to see if it will cause a seizure.

Riley did goo and had no more abnormal brain activity then they would expect from someone with a shunt placed.  This of course does not mean that what she had in June were seizures, but it also ti does not mean that she isn't having them either.  The problem with this test is gthat it can only tell you if she is having seizures during the time of the test.

The doctor did say that she doesn't believe Riley has a seizure disorder.  but seh cautioned us that she could develop one.  So her advice was to keep an eye on her and if it happened again we could do a 24 hour EEG.  She told us to watch for any sudden head dropping, if she stared out into space and we were not able to get her attention back quickly, and tighting of her limbs.

Riley does still state into space sometime, which could be an absence seizure, but we can get her attention back pretty quickly  So we are just watching her at this point.

Kathie Lee and Hoda

So I have not blog in a reallyreally really long time. But today I felt the need. More out of fustration thananything else.

If you have followed my blog, whichI am not sure why you would since I have become terrible at updating it, youknow that Riley had a feeding tube for alomst 2 years due to reflux andaspiration. Kathie Lee and Hoda on the Today show seem to think that feedingtubes are something to laugh at. AND I AM PISSED!!!!

Ok so a little back story:

The New York Times ran an article byLinda Lee called "Desperate brides try feeding tube diet."  It's about all these crazy fad diets bridesare using to loss a few pounds before their wedding day. It lists several diets(Master Cleanse, HCG, Atkins, etc.) and gives examples of women who have beenable to lose a quick 15 or 20 pounds before their wedding. 

It then goes on to talked about thisdoctor in Florida who has started offering a "feeding tube diet" topeople who want to lose weight quickly. It’s called the K-E diet"ketogenic enteral nutrition" diet. It goes go about a woman whowanted to lose weight quickly so that she could go dress shopping for herwedding that is a few months away.  Shespends $1500, and the doctor places a nasogastric (NG) feeding tube. She thenis fed a special formula that only has 800 calories per day for 10 days anddoesn’t eat any other food while the NG tube is in.  Does this sound like a bad idea to anyoneelse?  So these women who do this are notvery smart.  I mean come on as soon asthey start eating again they are just going to put all the weight and probablemore back on.

Ok so you might think that would beenough to piss me off.  But Kathie Leeand Hoda had to take it a step further.

They started out saying that thesebrides are doing this a new diet using feeding tubes. Hoda thinks it is"actually kinda sick" (as I diet I don’t disagree with her) andKathie Lee thinks it is "ingenious." They go on to talk about how thewomen get the tube put in their nose and have to carry a bag (which she calls asack first, then a purse, then a bag) with their calories in it.  I mean come on that can’t even do theresearch to find out what is in the back or how the women get thecalories.  They are think that these women have to sleep with it and take it to work with them.  They don’t seems to know anything about thediet, when they are talking about the diet they call it “the whatever K diet.” Didthey do any kind of research about this at all, it sure doesn’t seem like.  This is great journalism NBC.

When they show a clip of. a womanhaving the NG tube place Hoda actually says ; Don’t look, la la la.  Look away but then look back at us.”  Really, really if you are that turn off by itWHY ARE YOU DOING THE STORY!?!  Hodastarts to talk about the risk of infections with the NG tube but then wrinklesher nose in disgust and asks, "And if it gets knocked out? What if youfall down?" THEN LAUGHS. It all a big joke to them.

THIS NOT  A JOKE TO THE THOUSANDS OF PEOPLE THAT NEEDTHESE NG OR G-TUBES OR J-TUBES TO SURVIVE!!!!!

They think it ok to laugh andjoke.  By they have never had to livewith a child who has one of these tubes. Or had to deal with people staring at your child as you feed them througha tube.  And I can you people stare andthey don’t think you notice.  WENOTICE!!!  You have never had to pin yourchild down and the tube up her nose and down her throat while she cries andgags and chokes and screams. Then try to hold it down in place with one handwhile sticking a piece of tape on it with the other hand and then get out astethoscope to listen to their stomach and make sure it's in place.  Or had the fear that a g-tube will be pulledout because you child is being a child and sliding off a couch and have itcatch.  Or had to take you child to theER to have a J-tube replaced.  No butthose are all things that we are parents of tube feed kids go through.

So maybe NBC you should do some moreresearch before you put a story on the news. And maybe, just maybe your “talent”should be more concerned with some respect their viewers and less about upsettingBrad and Angelina by calling them Brangelina. Hmm

Smash session

So I told you that I did a smash session over the weekend with Riley.  I thought I would share some of the pictures.

 

 

This is the cake I gave her.

 She was not sure what she thought it at first.

After the first taste she dug right in 

This is actually one of favorite becuase seh looks so lazy like playing with icing is such hard work.

And that wonderful smile.

 

She had a good time and was such a mess afterward.  But it was so worth it to see her have a good time.

Feeding Tube is gone

I have been a terrible blogger....but I do have wonderful news.  The feeding tube that Riley had placed sbout month after she was born was removed on November 14th.  We are so excited, we have been working toward this for the last 2 years. 

 

Last year on Riley's first birthday she could not have any cake, but this weekend at her 2nd birthday party she will be about to have cake, smash it, and enjoy it. 

I always wanted to have a cake smashing session with her so yesterday I borried my sister-in-law's really nice camera and had a cake smashing session.  And Riley was all about it. When I edit them I will post some here. 

 

Until next time.

Weight loss updated

I have reached the 20lb mark.  People are really noticing now that I have lost weight.  I have hit a plateau right now.  But I have started to add some exercise into the mix and not just the diet.  So I am hoping to start seeing results again.  I am going to Zumba once a week.  Last week was my first and while it was alot of fun I thought I might die by the end of it.

So wish me luck.