Monday, 27 February 2012

Seizures are driving us crazy!!! February 27th

Well.....where does one start explaining what the last two weeks have looked like when there is so much to say. I honestly can't even explain how long these last two weeks have been, have stressful they have been, and how much I just want to pull my hair out at times.

Well Wednesday February 15th started out as a normal day in the Halloran family! Mom got up and went to work, Nanny Helen was babysitting and Dad was working down the road...we didn't realize how important this would be. It was going to be a great day at work for me! I was on in-school PD and out of the classroom.

At 9:10 the phone rang in the room we were in for PD. I can't explain how much my heart sinks when the phone rings during the day and I just knew it was for me. The presented dumbfounded that the phone is ringing answers the phone and hangs up saying can Ashley Halloran please go to the office. I flew out of there like a bat out of hell and had to call Helen. She told me Addison was asleep, woke having a bad seizure, vomited everywhere and she wasn't sure if it was over or not. I hung up the phone, ran up the stairs to get my keys only to realize they were in my jacket pocket in my classroom..I got the keys and left. 

When I got in the door Helen looked like she was in great distress and Addison definitely was still in a seizure. Helen had given her a tablet of Ativan which didn't seem to be working, I immediately called into the IWK Neuro on call who told me to call 911....really a nightmare...was I really going to be calling 911 for my daughter who was seizing. She ended up having four horrible seizures before they got the are which all ended in major vomiting and then aspirating. 
(They are called Partial Complex Seizures and she all of a sudden turns her head to the right, holds her breath, stiff as a board, turns very red and blotchy sometimes even blue and more often then not ends in a major vomit)
In between these episodes she never really did come around. As I am on the phone with 911 and they ask me to have her health card ready I realize I didn't grab my wallet which is in my bag at work...Tyler then leaves to go to OPA to get that before we had to leave by ambulance. 
I can't explain how it felt to call, wait and see the ambulances and firetrucks arrive at your house. It is nothing less then frightening. 
The firefighters were there a minute before the paramedics.
The paramedics gave her valium and strap her to the stretcher and away we went. A sight that no one ever wants to see and as we walked out the front door and the nosey people of Jeddore crept by with stares I held my head up focused on Addison. This was my first ride in an ambulance and I hope to not have to do it ever again. Addison laid there seizing and there was nothing I could do. After about five minutes the guy in the back told the girl driver to step it up a notch and the sirens were turned on for the reminder of the trip. They gave her another medication up her nose called Midazolam which seemed to calm her a little bit but not stop it. 

Addison on the stretcher going to the ambulance

We arrived at the IWK emergency and went to the trauma room. They immediately tried to get an IV in and didn't succeed. Everyone always has a hard time getting IV's on Addison. They had to freeze her leg, drill her bone, freeze the inside(lidacane) of her bone and then put the IV in her bone. The first leg didn't work and the second one only lasted 10 minutes. Finally they got an IV in her arm and were able to give her dilantin which stopped the seizure. Well this IV business was going on they gave her Midazolam a few times. It was finally over around 11:45....a very long long time to have a seizure last. 
The IV in her leg

My poor girl

Peacefully asleep in ICU

So innocent

At that point she was asleep, fussing the odd time and shivering. She seemed to have calmed so they took us out of the trauma room and put us in a room in the ER but it was a matter of less then 60 minutes and she was seizing again. They gave her more dilantin and moved us back to the trauma room. It didn't seem to stop the cluster so they had to giver her Phenobarb. This is a very sedating medication which she got in the NICU. We then were taken to the pediatric intensive care unit (ICU)  where she continued to have seizures off and on until 8:30 that night. For the last few at 5:30 and 8:30 they were giving Ativan. It was like she would be fine and then have a few(well as many as possible in the time it took them to get the Ativan). 

That evening we realized she wasn't peeing so the nurse had to catheterize her.
She had Thrush and began nystatin for that four times a day 
We were given a parent room right outside the ICU and went to sleep around midnight for a few hours. She had another cluster of seizures in the middle of the night. 
This whole time she was getting IV fluids and we weren't feeding her. 
In the morning the neurologist team came by which our Dr. W led. They said we would increase her Keepra and see if that helps and also that there must be something else going on. Dr. G our old neuro was in the back of the group and I heard him say I call Bladder. When they left I asked the nurse if they were doing a urine test she said no. I told her what I heard Dr. G said and she said well she has a catheter in so we can do it. It is moments like this that show you have have to be nothing but pro-active and on the ball when dealing with hospitals. She did have a fever in the middle of the night of 37.8 so they were giving Tylenol. Addison had been asleep all this time waking every few hours fussing a bit and she would calm when given Tylenol. 

The ICU brought back lots of memories of our NICU days. The hand washing, locked doors, having your own nurse, the smell of the antibacterial gel and the fact that Addison just lie there so innocent and so young to have gone through what she has. Every nurse and doctor that we saw asked for her story and I retold, retold and retold more. You know though as many times as you tell the story it never makes the hurt go away. It brings back all of the why, why and why's and when sitting in the ICU having these feelings it makes it that much worse.
Cuddle with Dad

Throughout it all we had a few smiles

Well at noon on Thursday(16th) we got moved to the MSNU unit of the IWK. She was still sleeping from all of the medication she received. All of her grandparents visited that day along with Auntie Debbie. 

On Friday, she was very irritable and cried most of the day. By mid afternoon we were getting very tired of seeing Addison in so much pain we got the Doctors to come in and asked for a stronger pain med. Of course our pediatrician went right for the major one (chorolhydrate) thank goodness we had a good nurse who stuck up for us and said we not giving her another sedating medication we just want I.B Profin. Within an hour of that we found out she had a urinary tract infection. They treated her with Ceftriaxone(an antibiotic). He said her numbers were 10 000....which to me means nothing but I guess not very high but something has to be causing her irritability and increased seizures so we treated it. 

Saturday she was in a much better mood, they moved us to PMU a different unit. We only had to give her Tylenol once that day and didn't see any seizures. She did have major Diarrhea which made explosive messes. We spend the day having company and passing the time. 

Sunday we got to leave on a day pass. We went over to Dartmouth and met up with the Walsh's and Mom and Max for lunch and of course I got a blizzard on the way back!!!!
Reading for book club

She is soo cute

Not a fan of her thrush med

Ready to go out on our day pass

Monday she was irritable and was waiting for surgery. So we decided with the doctors that because she is so hard to get an IV we should get a port a cath put in to save the major headache and pain we dealt with. She couldn't be fed because she was having surgery so it was a long day for her. At one point they were going to send us home without the surgery because something else came up but I set them straight about that and we got the surgery!! The other docs were like we should get you to do that for other patients. 

Around 5 that evening we took her down to surgery. This was Addison's forth surgery and she is only 16 months old. I really don't understand why she has to be put through so much. This was the hardest one yet to give her up. She was sitting on my lap and smiling at me and then they had to take her. It was very hard. They were going to be cutting into a major vein so there are always risks on major complications and it was  hard not to think the worst. We got the call to go get her at 8:00. (She did well with her surgery but the poor girl can't win it took them three tries to get the port in so she had to be cut three times instead of once) We came back up to the room she was in an okay mood in the beginning but we were up overnight with her and had to give IB Profin to ease the pain. We were discharged before lunch on Tuesday exactly one week from when this all began. We went home giving Tylenol for pain and amoxicillian for her UTI and the meds for thrush. 

Before Surgery

After surgery back to the room we go

After surgery. You can't see the port it is under her skin. When not in use we go in once a month for them to use it  so it doesn't block.
So I would love to stop here and tell you the week from hell was over but little did we know it was only getting started......

We walked in the door at 12:00 lunch time. We had time to unpack, tidy up, do laundry, cook supper and minutes before we went to sit down for our first home cooked meal in what seemed like an eternity I went to the bathroom to find I was bleeding a large amount. We called Helen and Leo who came to stay with Addison so we could go to emergency. So six hours after being home our night that was supposed to spent at home relaxing was spent in a hospital emergency room. We finally saw the doctor and were on our way home at 2am. We were very happy to see the heartbeat and the doctor didn't seem concerned. Although I was not convinced that we were out of the water. 
I didn't go to work Wednesday. It was a good day at home with Addison. I always wonder what other people do on a day off. I am sure they accomplish so much more then I do but I got to cuddle with my girl and I even got a little bit of physio in. Helen came down for a few hours so I could catch a nap which was nice. However, by 4:00 Addison got very irritable and remained that way during the night.
I went back to work on Thursday which was nice to see everyone but a lot of work to get caught up. The one thing I hate being about a teacher missing so much time is how much effort it is planning for a substitute and then how much work it is to get the class back in order once your back. The students seemed happy I was back which was nice. Addison had three seizures on Thursday and was fussy a lot of the day and night. Friday morning before Tyler and I even left for work she had two seizures. I knew this was going to be a bad day. She had three more during the day and the last one Helen gave Ativan and called me to go home. I went home got her settled and went back to work to prep for a sub because I knew I was out on Monday for appointments. By the time I got back home Addison was arching so bad and had her body so stiff we didn't know what to do. It lasted for one hour and 15 minutes so we brought her into emergency. We saw her neuro there and she increased her keepra again so now she is at 6mls twice a day. She talked to us about dystonia and gave us a medication we can use as needed called Nitrazepam. We left with a screaming child and had a very long drive home. She did fall asleep half way and pretty much went back to sleep when we got home. I cleaned the house because I felt like Saturday was going to be a bad day...and was I ever right.

It started with Addison waking up having a seizure and by the time the day was done and we were in emergency getting Dilantin she had 16 seizures total. We gave her ativan at 9:30am because she had had 5 seizures. After this she slept, seized, or cried all day long. By 4:00 we knew it was beyond our control, packed our bags and were off to the IWK emergency AGAIN...might I add that they all know us by name which shows we are there way to much.  

I have to tell you because we deal with the hospital so much we see major things that go wrong, people who suck at there job, and does it ever get frustrating. Well that night in Emergency I think they had all those people working. 

We were admitted to PMU and got our room around midnight. It took them 2 hours to get her meds and 3 hours to get her formula, they ordered her meds wrong, and didn't order her ativan incase she has more seizures. I think I will stop here because it is not necessary to be mean.....

The Dilantin stopped her seizure and she went to sleep. Although this time she didn't sleep for as long she woke in the middle of the night. Sunday she was still dopey as to be expected since she had the strong meds. By suppertime the meds were wearing off and she got fussy and ended up having more seizures(these ones looked different she was turning her head and eyes from side to side) this is when I had to give her ativan from home because it wasn't ordered. The ativan helped her sleep all night. 

Jared came to visit on Sunday

Sunday Addison actually didn't mind her toys at the beginning

This is her port in use!

Then there was today....which by far was a horrible, stressful, cranky kind of day. 

I had my prenatal appointment at 11:30 in Dartmouth, We had physio here at 1:00 and I had an ultrasound at 2:30. In between all this we saw all the doctors, nurses, early intervention and had a nothing less then hysterical child who did not stop crying for more then the 2 20 minute naps she had. She was given Tylenol and IB Profin. Neither of these seemed to help. They have been trying to find out why she has been so fussy but haven't had too much luck. Her urine did come back with a small trace of whatever it is in it and they are treating her with antibiotics. By 4:00 everyone on the floor had her Addison scream enough and the doctors decided maybe they should treat her for dystonia with the med they gave us in emergency on Friday night on an as needed basis. The only problem is this medication is sedating and increases drooling but at this point we couldn't take much more. Dad, Brenda and Debbie came in to visit so they stayed with her when we went to the ultrasound which was awful hard on their heads too. It is no fun to have a baby that is in so much pain and there is nothing you can do. 

We gave her this med, took out her IV in her port(which was no longer in the right place and she was all swollen) and within 30 minutes she was sound asleep and is still lying there peacefully in her crib as Tyler and I are sitting her in the hospital room very thankful for the quiet time. 
This is when the took the IV out because it slipped. She was swollen.  Poor girl can't win.

But like always on a day like today it can't just end there.

I had my ultrasound on the seventh floor and got to see the doctor. The baby is growing at the proper rate and the heartbeat is great but the placenta has separated from the upper and lower edges. Very rarely happens in early pregnancy...but of course it does for me. This puts me at high risk of miscarriage, I went for a whole bunch of blood work and go back in a month to see him. We will see where this takes us. My dreams of having a normal pregnancy like the majority of the population were flushed down the drain today and I wont lie it stings a lot.........

Throughout the last two weeks life continues to go on around us as ours seems to be standing still in the middle of a fire we can't seem to put out. In our life outside of the IWK we have sold our house and potentially bought land to build a new house on. I'd love to say that we got to walk through our property and see what it is like, or meet with the contractor, or go looking at stuff for our house but I can't. We have talked about it and look forward to when our life gets back to our "normal" which we know is far fetched from the normal of most of the world.
But at the end of the day, the normal that we deal with everyday is part of who we are know, how we will live and how we will love our life. We love our little girl and will climb every mountain ten times to fight for her. 

Thanks for listening! Sorry it took so long to write...I guess you can tell I have been preoccupied. 

On a positive note my all day nausea is getting a bit better!!

Wednesday, 8 February 2012

Wow...that was a long month with no blog updates!!!!

January 13-February 8

I love this outfit!

It is going to be hard to try to remember everything that happened in the last month but I will do my best! I must first let everyone in the blogging world know why I have been so slack. Addison is going to be a big sister!!!!!Since about the second week in January I have been in the nausea and tired stage. I have been going to bed at 8:00 leaving Tyler to make bottles, clean up, do lunches and get Addi on the pump! Thank goodness he doesn't mind because I am just useless. I normally do the blog at night when Addison is in bed but I have been going to bed with her!

January 17th- Addison still wasn't herself and seemed to be sick. We weren't sure what was going on so we brought her to our family doctor (Dr.Murray) and found out Addison had a double ear infection. After 48 hours of antibiotics she started to improve finally!!!!

January 19th-
We went to the IWK for appointments with Dr. Wood(neuro) and Dr.C(pediatrician). Both appointments went well and fast. Dr. Wood said it is good that we are not seeing any seizures and just leave medications as they are for awhile. If we can go three months or more without seizures we can talk about meds dosage. Some children will out grown the seizures where some will continue to have them throughout their life.
Dr. C put our referral in to have another swallow study done to see if she is still aspirating. That test is today that is why I am not at work. He also gave us the name of a sleeping med we can use if she doesn't improve in the sleep department. Addison weighed 21 pounds 3 ounces and was almost 30 inches long! Her head is still just over 39 cm.
Our serious little girl!

Ok now a smile!

January 22nd-Addison and Mommy went to Chelsea Burgess(Laybolt)'s baby shower! Addison was a very good girl!
Loving her I Pad

Look at the teeth!

January 24th- Speech with Brenda. Brenda just wanted to catch up and see how Addison was doing. At this point there isn't much she can do for us. It is more for us to get information of what we can do with her. We are continuing her oral therapy three times a day and hope to find more toys for that.

January 27th- I had my first pre-natal appointment with Dr. Murray. She didn't have much to say that I didn't know. I willl be seeing  Obstetrics at the IWK in March and also be going to the 7th floor for ultrasounds more frequently. We are very interested to see what obs has to say about how they are going to handle this pregnancy. We are trying to treat it like everything is find and like everyone else!!

February 4th- We went to 3D Miracles with Auntie and Uncle Walsh to see if their baby was going to be a girl or a boy! Unfortunately the baby didn't want us to know and wouldn't cooperate. They are going back at the end of February.

Addison has been sleeping better for the last few days. January was a very hard month for sleep in the Halloran residence. For the most part we were averaging 5 hours of broken sleep. Addison wasn't getting much more. An example night could be bed at 8:00, up at 11:00 until 2:00 then sleep till 4:00 and up for the day. We even had one day that we were up at 2:00 and she didn't fall back to sleep until it was time for us to get up for work. We tried everything...cuddling, sleeping with us, melatonin, and structure but none of it worked. I called the Neuro last week to get a sleeping med because we were getting worn down as was Addison when she called back a few days later she said she talked to Dr. C and they decided on Chlorohydrate. Then proceeded to tell me they don't like to give it at home too often because if they have too much it can cause breathing problems.......WE DIDN"T GO GET IT! Sleep is not important enough to have her with breathing problems. I was very disappointed that they would even prescribe that. They said there is nothing else which I am not sure I agree with. But we have decided we are just going to leave it alone and if we need a break we will get family to step in!!!

What is new with Addison!!!

  • She is still smiling and laughing! Actually last night she was laughing in her sleep it was tooo cute!
  • She is still taking 4 oz of formula at a time three times a day! 
  • She loves her black and white crib toy that we hang off of the black poster board for her
  • She loves Reba! I have tried to play Shania and other female country singers but she doesn't respond like she does to Reba!
  • Rona the cat loves to cuddle with her and is always sitting on her lap!
  • She likes her wheel chair but lately she has been having a lot of tone when she is in it. 
  • Wee See are still her favorite videos on the I Pad along with Sparkabilities. 
  • She is wearing size 18 month-24 month clothing and size four shoes!
  • She is still a diva who is the best dressed girl around!
  • We often put three ponytails in her little curls!!
She loves the black and white crib toy and red mini lights

Life has been good to us lately and we are hoping things will continue this way!! We have our house on the market and are looking for land so we can build! We are not convinced that this is going to happen as we cant seem to find the perfect piece of land but it is an option!!! 

Hopefully I will start to feel better soon and will be able to update the blog on a weekly basis again!

She looks so good in blue!


We went out to supper Ava and Jared were texting

Check out Jared he is texting Ava back!

Hanging out with Mom before our Saturday trip to town!


Enough with the pictures!

Add caption

I was singing Reba to her and like always she was loving it!

I went to a girls night on Saturday and we did a clothes exchange! It was awesome!

Snuggles with Nanny Donna

Poppy Max and Addi


When I got home from work on Monday she was all smiles!

Tank was playing with his baby!

Please mom let me out!

Saturday morning TV time!