Sleep Study update

Hi all. I guess you are wondering how Ivey did during her sleep study?

Based on my experience with Ivey Monday night, the trach would come out when pigs fly. She just wasn't herself. It seems she has a cold. The congestion prevented her from breathing through her nose well. Every few minutes she would shoot her cap across the room if she coughed. That cap can be lethal. She could not get comfortable. She could not suck her thumb. In a nutshell, she could not sleep.

I stood over her crib for the duration of the night (9p-6a) semi crying, semi hallucinating from exhaustion, semi delirious from her coughing and just plain ole frustrated. I stood pleading that things would improve. Finally around 4 am I sat down on the bed and I think I dozed off while sitting up for about 45 minutes. Then at 6am the nurse buzzed me on the intercom to let me know it was finally over and we could go home as soon as Ivey was unhooked from all of the sensors. That was that.

I did speak to the nurse practitioner later in the day. The pulmonologist glanced at the results and did not see anything that shot red flags up. Amazing. He should read the study by the end of the week. If all goes well, we will be back at Scottish Rite next week to attempt decanulation. However, if I hear from the NP before the weekend, we will be rescheduling a sleep study, no decanulation.

Today Ivey and I spent the day at Scottish Rite making pre-op rounds at the ENT, registering in Day Surgery and making our way through anesthesia. Same old routine. In between visits we did visit with Steve and Nicki. They are taking everything in stride. I am so proud of them. So please keep the Hunt Family in your thoughts and prayers. I will double check the web address and post their website so you can all keep up with them.

Ivey also went to the Seating Clinic today. I can't wait to post pictures of her new 'stuff'.

Short summary:
Friday Ivey will be in Day Surgery at Scottish Rite for an ABR and possibly new tube in one ear. Next week she will attempt decanulation pending her sleep study results. All of these things may seem so minor compared to issues that have come up in Ivey's past, but both of these procedures will effect Ivey to the core. These two things will make her quality of life better. The ABR will move her one step closer to hearing the world she in which she lives. Without her vision, Ivey depends on her hearing and right now it is compromised. So we desperately want to fit her with hearing aides so one more door opens for her. Can you imagine going outside and not hear the sweet sound of birds chirping, especially now that it is Spring? I want Ivey to hear all of the wonderful sounds. Where the trach was a setback initially, except for the fact that it literally saved her life, decanulation will be a true positive event in Ivey's life. I would never want to remove the trach if it would compromise her safety or make her uncomfortable. But, she is ready, so very ready to have a life without the boundaries of her trach.

So please please please pray for her and send her words of encouragement. So many wonderful things are just within fingertip reach. She has worked so hard these past two years, overcome so many obstacles; I think she is due a ray of sunshine. Things are always easier to face and fight when you know you have an army behind you. We need encouragement now.

Sleep Study

It is 11:27pm and I am sitting here watching Ivey sleep. I am watching a monitor with numbers that I have no idea what they mean. Matt would frown if he saw the time and knew I was not trying to sleep too.

Ivey and I made it down here to Scottish Rite tonight by 8:00 pm and only by the Grace of God did we get here. This morning Ivey woke up with a nasty little cough and some congestion. Both to which make me extremely nervous about this sleep study and the outcome. Once we got here tonight I realized that the trach that was changed out this morning was missing a vital piece to it. So, it took an hour to find a trach here in the hospital that could be switched out again just for tonight. Finally, they rounded up a cuffed trach, which Ivey does not wear, but can for the night. Unfortunately I will have to change it out again once we get home. Just so you know I should always have a spare trach with me. I managed to make it here with everything but the kitchen sink and a spare trach. Not good. I am most certain the nurse thinks I am a dimwit. As we were registering tonight a mom was also registering her son. When the girl at the desk asked the name of her son's pediatrician she could not remember his name, nor could she remember where her husband worked?. ? I almost fell out of my seat. How in the world could you not know that? Well, I am eating crow now. Here I sit empty handed running some poor boy all over the hospital for a trach that is a 'special order'. Go figure. Leave it to us to make everything special.

Any way I am listening to my IPod watching an angel sleep. How she can sleep is beside me. Electrodes to her head, tubes at her nose, belts around her midsection, welcome sleeves on her arms and a brand new cuffed trach. But one of my theme songs right now is Suzy Boggus and her song "Hey Cinderella". Truly it makes me laugh. Maybe I will put it on Ivey's player so that you can hear it and get a good laugh too. Seriously, if you are a wife and mom, you will like it. And if you know me, it is my ringtone on my phone, so you may get to hear it for your listening enjoyment. Before this it was "Just another day in paradise"- both are very fitting. Oh, I love my life and in its own special way it is a fairly tale, but it is a unique one.

The plans for decanulating Ivey changed last week, but I wanted to wait until after her birthday to throw it out there. We are at the sleep study tonight, but will go home first thing in the morning. If they results are good, decanulation will come later. This Friday Ivey will go in for her ABR hearing screen. The screen requires her to be put to sleep, so we want to leave the trach in just in case there is a problem during the procedure. So we are here today, come back Wednesday for pre-op and will drive back down at a rooster calling 6:00 am on Friday, which means I will be up by 4:00 am.

Did I mention that so far this week is not going exactly as planned? Honestly, we were all a little deflated that the trach is not yet coming out. But the ABR takes Ivey one step closer to hearing aides. Personally it was a hard blow not having this week go as planned. You know, most things with Ivey have not gone 'as planned' and I think, for the most part, I have taken it in stride. Unlike Matt, I am a little more on the high strung side. He is more level headed than I am. I wear my emotions on my sleeve and he always seems to be a little more in control. (I speak first think later; he thinks first and normally keeps his mouth shut.) He is trying his hardest to teach me that little lesson, but old habits are hard to break.

Anyway, when it comes to Ivey you would think that we would get a break at some point. I just can't explain how big this would be (to get her trach out). I know everyone is excited for Ivey. But no one is more excited for her than I am. It will change her life – literally. In all the ways it changed her life to be trached a year and a half ago, this would set her free in so many ways. It is one more step toward becoming a little girl, not someone held captive to a piece of equipment. And for me personally, it is also a gigantic step. I must tread lightly on how I say this, and I may not say it perfectly, but it will affect my own personal life unlike it will any one else, even Matt's.

There are many crosses to be carried on this journey, but this trach is the one that many times brings me to my knees. So yes, my dad helps with it by coming over to watch Ivey sometimes during the day, as does my aunt, my mom, Christa, Traci and a few friends, but when they all go home IT is always my responsibility, even when they are there it is my responsibility. And yes, I get to do things, but so much time is absorbed by her trach, especially time that could be spent with Ivey and the boys. This trach has altered almost every aspect of all of our lives, and I honestly think she is ready to move past this stepping stone. Not only Ivey is a prisoner of her trach, so am I.

Not long ago someone asked me if I always suction her that much, what he didn't realize, it was a really good day, to me the suctioning was almost nonexistent that day. Unlike today, Ivey required suctioning at least every minute, literally. I desperately want the opportunity to be Ivey's mom, not her nurse.

My point to this, Ivey is coughing more than normal tonight and she is much more congested. It seems that she is getting a nice cold and unfortunately this is the worst timing possible. The nurse is even asking if this is normal for Ivey. NO. She needs your prayers. This sleep study is so important. Please lift her up tonight in prayer that she does what needs to be done tonight to make this study successful.

On an up note, Ivey said 'Momma' for the first time yesterday! No she didn't speak. She signed mom. We have been working on it for days now. Luckily Stacy was there as my witness. Knox and Walker both said dad first and Knox actually called me daddy for along time. It was crazy, but dad was interchangeable between me and Matt. Maybe I will get her on video soon signing 'mom'. It will make any mommas heart melt.

And on the subject that this week is not necessarily going as planned, I had a wonderful root canal this morning – not planned!

Just Another Ordinary Miracle - Two Years Later

HAPPY BIRTHDAY SWEET IVEY #2

Today is the specialist of days.
Today she turned two and at 5:30am her daddy and I were sing Happy Birthday!
I will put all Birthday messages in her book, so even if you have never left her a message, now is the time!
H.a.p.p.y. .B.i.r.t.h.d.a.y. .t.o. .y.a.,. .h.a.p.p.y. .b.i.r.r.r.r.t.h.d.a.y.!!!!

Today is Ivey's last day being ONE....

So today we look to her future, remembering her past, grateful to have her today.

You've Come Along Way.....Ivey

Waving Bye-Bye

Yesterday Ivey waved bye-bye for the first time. She did it again today as my dad was leaving. Coincidence? I don't think so. The thing is I have been adamantly trying to teach her to hold up two fingers as a little surprise for everyone for her second birthday, which is this Friday. Not so much. She could absolutely careless about 'counting' on her fingers. This is just another stance Ivey is taking to remind her momma that she will do what she wants, when she wants, and how she wants!! That little girl has spunk.

Ivey has a couple of appointments coming up at the end of the week. So, here is the plan for the remainder of the week. First we will see her neurologist on Thursday and hopefully get his blessing that all things are leveled off in that little brain of hers. Friday morning we will wake up to sing happy birthday to the birthday girl. Then we will hop in the car and head to the trach clinic, which by the way, we hope to be her last trach clinic! All things going well, I expect her pulmonologist will give us the thumbs up to check in to the sleep clinic next week. My baby girl may just get the best birthday present we could ask for and get that trach out next week.

Right now the idea of life without the trach is surreal. Honestly, I can't remember what it was like to never have a coughing baby, breathing treatments, that horrid green bag (Ivey's suction), and an aching back from carrying the suction around – Everywhere. Can you believe I might get to take Ivey out, in public, and just carry her – like a baby- my baby! Anyway, I am trying not to get my hopes up too much, but that is the impossible at this point. I guess waving bye-bye is the more appropriate thing to learn this week. We will definatly be waving bye-bye to the trach. Maybe waving bye-bye to the past year of her life, trached, isn't such a bad thing.

Speaking of the past year, can you believe she will be two? Two whole years in Iveyland. Obviously, there will be more to come about her birthday. For now keep in mind that I will print out and keep all of the comments on her birthday, so make sure to leave a message to my sweet pea wishing her a happy birthday!

Optimism

The week so far has been a little on the wild side, but at least it has not been boring. However, I think I would like to find some boredom for awhile.

Basically, Ivey had another seizure on Monday night. This time is was much worse than any I have ever seen her have thus far. Luckily Matt was home for this one. So before I go any further I want to say a special thank you to everyone who helped us Monday night. That special group includes grandparents, a neighbor, a Godmother, a friend and the ER staffs at both Floyd and Scottish Rite. What we do without all of You?

We did get Ivey to the ER at Floyd after I administered her Diastat which had absolutely no affect. Fifty minutes later with a one time attempt at an IV and two medications her seizure finally subsided. The rest of the details I just don't want to relive right now. After she was stabilized we transferred her to Scottish Rite, where we spent the night. The neurologist checked in on her frequently and decided to make medication adjustments and let us go home. Now we wait to see if the medications are leveling off or if they will still need to be adjusted. Hopefully, we are getting to a resting point again.

Now for the OPTIMISTIC bright side ….. Next week Ivey will have her second birthday. Nothing big this year. We are saving up for the following week when she goes in for a sleep study and the POSSIBILIY of getting her trach out. That would be the best birthday present she could receive!!

We are all pretty tired this week. With the events that took place Monday night both Matt and I lost one full night asleep. I have to say he amazes me. We got to Scottish Rite around midnight and after we were settled in the ER he left for home. He probably pulled back in to Rome somewhere around 4:00 am. Then our middle child had him back up at 5:30 am and he still worked hard all day long. I don't know how he does it, but I am so thankful that we have him.

Maybe I will come up with something a little more entertaining for the next post. As for now we are taking it easy and praying for subsiding seizures.

g

Casualty Count

Yesterday- was Circus Day at preschool. Here was the scene for the well one in our house.
A circus horse - of course!!

The Big Slide

Walker and his best friend Emma - I never could get them on the down jump.

THE SCENE AT HOME -

Maybe I was meant to be a hermit or maybe I should just live on a deserted island or somewhere in the Arctic. After all, that’s what it has been like for the past three weeks, oh, maybe it’s four. Who’s counting? One thing is for sure, I missed my calling. Life keeps insisting that maybe, just maybe, I should have invested my brain cells somewhere in the medical field while I was in college. I guess I fell short considering I majored in Biology, which is somewhat in the right vicinity, but let’s face it – that degree isn’t really helping me much these days. Anyway, I have been pretty much in solitude – scratch that – quarantined for the past few weeks.

It all started with Ivey’s seizures, then Walker, in the midst of Ivey, decided to come down with four days of a 103 fever. That I believe was most likely the flu or some version of it since he had the flu vaccine. (Some good that did) Ivey had more seizures. I am hesitant to tell you that now Knox is home with strep. So, yesterday while I had Knox at the doctor, sweet baby Ivey decides to throw-up and convince Dr. R to look at her and guess what? She’s got it too. Basically, we are on eternal lock down.

The good news, Ivey has not had a seizure in one week. That is good. The bad news, I – the momma of this crew- am delirious, void of daylight and adult conversation.

This past weekend I did get to get out of the house for a couple of hours. One of my student/cheerleaders from my teaching days is getting married in a couple of weeks. Going to her wedding shower, quite frankly, made me feel old. When did that happen? It was great to see a group of girls that in my eyes are all still 15; it doesn’t matter that they will all be graduating from college at the end of May. But, they are all still sweet beautiful girls with big dreams. And, I miss them - well, I do as long as they aren't really still 15 with raging teenager hormones.

Any who, I have been getting all of my ducks in order for various annual reviews that will be coming up for Ivey. Meetings are being scheduled and papers are being filled out, another reason I am delirious. I keep thinking that I should write a manual and hand them out on the street corners. You know they have all those baby books about pregnancy and child rearing, things like “What to expect….blah, blah, blah”. Well, I have a couple of titles picked out. How about, “What to Expect from The Special Needs Child You Weren’t Expecting” or maybe “The Girlfriends Guide to the Real World of Special Needs”. Now don’t get upset about the titles.

In my little manuals/books, I would by pass chapters about what life is like raising a special child or the joys of special needs (there are plenty of those out there).
Chapter One of my book would simply say:
Chapter One: Living with A Special Needs Child – see your own life-immediately!

Then we would proceed on to the chapters about the paper work, the scheduling, the balancing acts, figuring out an organizational plan, more paperwork and did I mention S.C.H.E..D.U.L.I..N.G? Like I said, delirious.

Maybe that is what I should do, become an organizational consultant for special needs families. I am becoming quite good at it- never mind what anyone else thinks (don't ask my husband or my mom or the majority of my friends, and for heavens sake, don't ask my dad).

Well, I have to go now. Alvin and The Chipmunks is going off and everyone is getting rowdy again. We saw it no less than twenty times last week. Did I mention that this week alone (and it is only Tuesday)that I have already seen Alvin seven times. Delirious- the only voices I hear are 10 times that of the normal speech speed. Delirious.

Automatic Pilot

I mentioned in the last post that Ivey's seizures have abruptly decided to show themselves frequently in the past three weeks. Since March 13th she has had at least 10 seizures that we have observed. She is having a combination of types of seizures, predominately she is having myoclonic seizures, but most likely having grand mal seizures too.

We still have not pin pointed specific warning signs signaling that she might seize. Some days she is in a playful mood and then suddenly begins to seize. Other times Ivey might be sleepy. They happen morning, noon or night. They do tend to follow a similar pattern, myoclonic, where her muscles twitch discretely. Other times her arms and legs thrash violently in a pulsing fashion, as does the muscles in her face. Her body becomes very tense. She is incoherent and non-responsive. Consistently she looses her color and turns a 'dusky' shade, drools and urinates. Unfortunately, Ivey also tends to have long seizures. On average they range from 5 minutes to 25 minutes. The longest seizure Ivey ever had lasted about 45 minutes. A LONG seizure is over 5 minutes, so Ivey's length of time is of concern.

Yesterday morning Ivey had another seizure lasting close to 25 minutes. She did have twitching in her muscles; however, this time her body became more limp. During the first 5 minutes of her seizure, I began to locate and organize her medication that is administered if her seizures continue past the 5 to 10 minute mark and also placed a phone call to Matt. As I was laying the medication out, her dusky color began to change and she became a bluish shade. Hurriedly, I pulled her oxygen tank and administered oxygen to her. She was probably 'holding her breath', but she regained her dusky color in no time at all. Then I administered her Diastat. Her seizure continued on for several more minutes subsiding about the 25 minute mark, where at that time, Matt had made it home. During this time I was also on the phone with her neurologist.

Ivey is okay today. She is actually napping right now. Upon the recommendation of her neurologist, we did take Ivey to the ER at Scottish Rite yesterday afternoon for observation.

Ivey's seizures have been under control for the past year. She has been in the process of a medication change, which can trigger seizures, and she has also gained weight, which can also trigger seizures. I pray that this is the explanation to her seizures. Hopefully we will get her medication levels high enough to control the seizures, but not to sedated her too much.

Watching her go through these terrible things is heart breaking. For all the things that we do to try and make her comfortable while she is seizing, there is nothing we can do to really help her. We hold her, love her and talk to her, but we can do nothing to physically stop them. Please pray that we get these under control again very soon. They make her feel bad and increasing her medications make her sleep more until her body adjusts to the new dosage.

Long story short, say a prayer for her. The end of this month holds big plans for Ivey and we need to knock down any obstacle(s)in her way. If all goes well, her trach may come out at the end of April.