Fate in Victoria. It’s a small world - May 4, 202

 This day was a strange day. I was sitting down for lunch during day 2 of OH&S course in Victoria, BC. I was chatting with one of the nurses I had sat with the day prior. I mentioned something about a Gracie and why I don’t visit the island more often. We started chatting about that a little bit and I mentioned the Victoria General and how I wished never to return there as it is part of the trauma with losing Gracie.

Another nurse arrived at our table with her own lunch (it was a beautiful day in Victoria and there was a patio outside our meeting room). Her name is Julia and I had not spoken with her prior to this. She mentioned that she works in the NICU (neonatal icu) and the PICU (pediatric icu). My heart kinda went number for a second and I remember a lump in my throat as I asked her “what hospital?”. Her response made my skin tingle and my heart drop. I literally can feel this as I write this down here.

We talked about the doctors (who at this particular moment I could not speak their names as I’d noted weeks earlier that I’ve left them behind). As this trip to Victoria was coming closer. I thought more and more about Gracie and being nervous about coming to this city. When she said “Raphy”, I responded with Dr. Raphy (Beck) and Dr. Jeff (B**********). I told her that they were amazing doctors and I knew they tried to help Gracie survive the H1N1 but I had been angry with one of them because of the comment made on the day following Gracie’s intubation “you daughter has a significant chance” of not  making it. But these doctors are professional, smart, and I know they did everything they could.

I told her that I would love them to know that I am now a nurse and I took this journey in Gracie’s memory and I found something positive from the trauma of her death that I have endured for so long. That I wanted to care for people and families in the same way that my family and Gracie was treated as she was fighting for her life.

She told me “I work with Dr Jeff” and that “Dr Raphy is now in the clinic because his passion is pulmonary and is usually working until 3”. Somewhere in this conversation lead to the craziest of ideas when I eventually said, “I’d like to see them and I would love to tell them myself”.

There was tears, there was hugs, there was passing of Kleenex. I couldn’t believe I was having this conversation about my girl and that place and the doctors that took care of her.

She said to me “I’m going to make some calls”. I continued trying to eat my lunch which did not work well. I chatted with the other nurse who was I initially was chatting with.

Julia came back and told me that Dr Raphy was not working at the moment. She said she was going to make another call.

She came back and told me that she called up to the PICU and spoke with nurse(s) who knew/remembered Gracie. My heart thumped and I felt butterflies in my stomach. This was becoming surreal. I am at a nursing meeting and here I am chatting with people close to my world. I haven’t only returned to the island maybe 3 times now since so left in 2012.

She asked me if I would like to have a conversation with the nurse. I felt like I did but I was nervous about that. I don’t remember our nurses names but I remember them by face and the little things they did for Gracie like reading her favourite story, braiding her hair, and the little sponge baths as she lay asleep in her healing coma.

We came up with the idea to go the PICU instead even though I was scared to do this. I had not been there in at least 12 years. I would love to be able to share with them my nursing journey. It was arranged. I would go there for shift change.

After our course was done for the day, I went back to my room. I changed my clothes and I took a shower. I went for a walk down at the Victoria Cruise Ship Terminal. There was not one, but THREE giant mega ships all parked in the docks. I just walked and walked and walked down the pier at Ogden Point.

On my way back, I ran in to a couple who asked me if I wanted my photo taken in front of the ships. They explained that they were Christian people who had a set up for people to come to which was located beside the ships. I told them that I was reflecting on my Gracie and that I was on the way to the hospital to meet someone. I told them I would probably be back as I wanted to watch the ships set sail after dark.

I will continue this story in the next blog post.

The Compassionate Friends

I've been a member of the Nanaimo chapter of The Compassionate Friends since February 2010.  I first learned about it from Gracie's paediatrician, Dr. Betty Bartleman, when I had an appointment and conversation with her following Gracie's death.
It is a support type group for parents who have lost a child of any age.  I decided to go the following month and see what it was all about.  The group met on the third Monday of each month at a local church.  I have now been a member for a little over 2 years, although I took some time away from the group during my pregnancy with Oliver.
It is helpful to get together with other parents and grandparents who have been in a similar situation.  We are all missing someone dear to our hearts and minds, our children.  We are all grieving and wanting to learn ways to keep our children's memory and spirit alive; we want for it to be acceptable to speak our children's names and to keep them close.

The group dynamics have now changed since I first started in February 2010.  We have gained new members, while some members have moved on.  We now meet in a new location and at a new time, second Tuesday of each month.  Some things are being changed in how the group is being run and organized.

Gracie's days in the PICU

I am going to skip writing about the morning she died for a little while, because I don't want to go there right now.

Gracie spent almost the entire 3 weeks in the PICU on life-support, only beginning to stir in the last couple of days of her life.  Not too many people are aware of what exactly Gracie went through, mostly because we were avoiding the press and other unwanted things.  Also we expected Gracie would pull through and I would tell her story at that time.

At the height of the virus, we counted 14 pumps of medications hooked up to Gracie at one time.  Medications infused in to her were: (I stopped writing them down after awhile, so this is not the entire list:
Chloral Hydrate - Used to sedate Gracie and to keep her comfortable.  This drug has a calming affect and helps to lessen anxiety.
Rocuronium - It is a paralytic used to completely relax the skeletal muscles, esp in use for intubation.  Our nurses told us that it can only be given once a patient is COMPLETELY asleep/sedated.
Midazolam - An amnesiac that helps with the sedation.  I think that I was told that it would make Grace feel like she hadn't been asleep for 3 weeks.
Dopamine - To assist with stabilizing her blood pressure
Epinephrine - Used as a blood thinner and for her bloodp ressure, helped with the blood clotthing that she had going on.
Morphine - Pain medication
Hydromorphone - Pain medication, similar to morphine
Fentanyl - A very strong pain medication similar to Morphine, but much more potent.  Gracie was given 3 different types of pain medications to becoming "addicted" to one particular.
Lasix - Is a diuretic used to treat water retention.  It was used to help Gracie when she had become "puffy" and really edemic.
Nitroprusside - A vasodilator,(constrictor) used to open the blood vessels.  It was used to help the clotting in Gracie's legs.  An extremely dangerous drug.
Cefotaxime - A strong antibiotic used for many things, including respiratory illnesses.  This was the last antibiotic that Gracie was on, it was trying to destroy the abscess in Gracie's lung.

Gracie had 8 blood transfusions/platelet infusions during her 3 weeks in the PICU.  Blood was drawn from Gracie's fingers and toes often throughout her day, her poor fingers and toes were so scabbed up because of it.  Her platelet counts were often low, dangerously low.  The average is between 150,000-195,000 - I remember once Gracie's test came back as 15... only 15, and I remember two other tests being in the 80s and 90s......

She battled fevers alot of the time.  It seemed that Gracie was either very warm or very hot.  The highest fever that she had was around 40.8 degrees celcius = to nearly 106 degrees fahrenheit; she battled these fevers for days.  A few hours later her temperature would be around 37 degrees and then just spike for no reason.  Gracie's nurse always tried to make her as comfortable as possible whether her temperature was moving up or down, either with tylenol or the bear hugger.
At home when Gracie was ill with a fever, we would switch between tylenol and advil back and forth and it always took care of them.  But due to Gracie's low platelet count, ibuprophen was not recommended at all. Ibuprophen can cause low blood platelet counts and further bleeding problems; Ibuprophen could tragically harm Gracie.
The bear-hugger blanket is a blanket hooked up to a machine that blows air in to it, it is used to regulate the patient's temperature.  Gracie's bear-hugger had two temperatures, low and high, so depending on which direction Gracie's body needed to be regulated, the bear-hugger aided.

I'll probably add more to this, but I need to take a break for now.

Gracie's Final Weeks - Victoria General PICU

October 28th-November 15th, 2009

Continuing on from where the last post left off, it was the following morning (Wednesday).  Dr. Beck was now on his days off and Gracie's new intensive care doctor was Dr. B************ (who we called Dr. Jeff because it was much easier).  After the morning shift change and Gracie's assessment was completed, I went in to the PICU to stay with Gracie and got to meet Dr. Jeff.  He seemed very kind, but I remember standing there beside Gracie's dad and being told, "your daughter has a significant chance of not making it through this".  I remember kissing Gracie's hand and walking out of her room and in to the clean-up room.  Gracie's dad and I were very upset at this news, and I tried so hard not to believe those words.  My baby girl HAD to come home with me.

I think Gracie must have heard those words, because from then on she fought and fought so hard; I think she was determined to win her fight and get better.  Most days were up and down, she would improve in some way, but then take 2 steps back; it was like that alot.
My parents came to visit us in the PICU on the morning of Halloween; I asked them to stop at our house and bright Gracie's halloween costume back with them.  So I got to dress Gracie up in her bumbleebee costume, well not the dress part of it, but the antennas and her want; she looked beautiful as a pretty yellow bumblebee.  She was extremely puffy because of all the fluids being pumped in to her; at that point she had 14 pumps of medication and fluid being carried in to her through the IV lines.

On Friday the 6th (November), I was getting ready to head back to Nanaimo until Sunday.  Dr. Jeff decided to do a CT scan to look at her abdomen because he was concerned about the fluid building up and her edemic condition.  I followed her crib down to the first floor where they took her to do the scan.  It seemed to take forever as I stood waiting outside the large double doors for Gracie's crib to be wheeled back out.  This was Gracie's first time out of the ICU in 10 days.  After the results came back, Dr. Jeff said that there were some pockets of fluid and that they may need to be drained.  Gracie was on diuretics to help drain the fluid, but it wasn't catching up enough for her body.

It took 3 nurses to bring Gracie to the Imaging Department - Two to push her crib, and one to make sure all of her pumps were moving along smoothly with it.

I left the hospital at 3pm when Gracie's dad came to stay with her, and headed back to Nanaimo.  At 10pm, I received a call from her dad. He told me that the surgeon had come to see Gracie about the fluid pockets and that he was worried that he if he made the incision in to her abdomen, that he would not be able to close it up because of the swelling.  I remember feeling like I needed to get back to Victoria as soon as I could; I did not want to leave my little girl there like that and I was scared to death.  He assured me not to worry and that he would call asap if anything changed.  I don't remember sleeping much that night.  Possibly a surgery could take place the next day;  I would wait for her dad to contact me.

I got back to Victoria on Sunday morning (the 8th) at around 9:00am, just as we got the news that Gracie would be taken to the OR for her sugery.  Not a nice way to come back to the hospital and hear that news.  They prepped Gracie and got her ready for the trek to the OR.  I tried to give her a kiss on her way out, but I was too short to reach her up the crib; I followed her to the elevators and then she was gone.  The surgery was to take about 1.5 hours; my parents were so worried that they decided to drive up and stay with me.  While we were waiting for news, I went up to the PICU to ask the nurses if they had heard anything.  They told me that they didn't really know anything, except that Dr. Jeff called up to them asking for a camera because "something" was interesting.  We waited and waited, for what seemed to be eternity.  Finally Gracie's crib was brought back up to the PICU.  Dr. Jeff explained to us that what they found was a necrotized piece of the bowel, meaning that about a 4-5" piece of her bowel had died inside of her.  They removed it, drained some fluid pockets, and attempted to stitch the incision back up.  Dr. Hayashi (the surgeon) had to put a vacuum seal in her abdomen because he could not close it up; Gracie would have to return to the OR in a few days to have the seal changed, or her abdomen closed.  Gracie had a colostomy bag now because the bowel was split in to two temporarily; it would be resected at a later time when she was healthy again. 

                                                   

The first picture is the nurses prepping Gracie to take her down to the OR; the second is recovery back in the PICU afterwards.

We had some issues with Gracie later that evening.  Her stats were very unstable, and her heartrate was jumping between 195-205.  Extremely high for a 3 year girl whose heartrate should be around 110-115 normally.  I got a nice text message from a friend, and then a few more friends, that Gracie was all over the news.  I ran to the parent room to see, panicking, because I was trying to avoid the press putting Gracie's story on the news.  Sure enough, there was a short story and some pictures of her that were taken from a facebook group that my friend organized for her (3,000 members of support and encouragement for her fight).  I was pissed off.  Pissed off that they would go behind our backs and do this, especially because I had told them no.  It pissed me off that I was now worrying about the press instead of worrying about my little girl laying in her room with an excessively high heartrate.

Gracie went back in to the OR three days later to have the vacuum seal removed, and Dr. Hayashi was able to close up her abdomen.  Her post-op was scary; I remember sitting there looking through the glass of her room and seeing her heartrate drop to the 40-50s and her stats were very unstable.  Dr. Jeff was called to come in and check on her.  It was about two hours before she was stable again, and she seemed to do ok.  The incision was pulled together from the middle, kinda like a diamond shape, and brought together and stapled.  The ends were left open to heal from the inside out.  It was scary looking; Gracie would have one hell of a scar eventually. I only saw it the one time, when it was being cleaned by her nurses.

Post-Op #2 - My brave brave little girl

After the surgery, Gracie seemed to keep moving upwards.  Her doctors were thrilled with her progress.  She was taken off of most of her medications, although she was still kept asleep and ofcoarse kept on the pain medications because of the surgeries.  Dr. Beck left for Israel, so it was mostly Dr. Jeff looking after Gracie at the time.  Three days after the surgery, the nurses began trials of turning the ventilator real low so that Gracie could try breathing more on her own; they also started lowering the paralytic to begin waking her up.  Dr. Jeff's estimate was about another 6 weeks for Gracie to recover; 3 weeks of trials with the ventilator and about 2-3 weeks of recovery in the regular pediatric ward (and may even get to transfer back to Nanaimo's pediatric ward that we were comfortable with).  Although a lot of things cleared up after the bowel removal, Gracie did develop a fever that wouldn't cool down; Dr. Jeff tried to treat it with a very high antibiotic.

Usually when Gracie developed a fever, which was often in the ICU, the nurses treated it with tylenol and the bear hugger blanket.  The blanket was a big puffy thing that had two settings, warm and cool; they would be used interchangably depending on the patient's temperature.  It looked really comfortable, and usually it helped quite a bit.

I went back home to Nanaimo on Saturday (the 14th) and returned to Gracie on Sunday.  I got there at shift change and waited to go back in to see her.  It was so stormy that night and the family back at home tried to get me to stay until early Monday morning and let the weather get better, but I missed my baby girl so much and needed to get back to her. 

I sat in with her and read Dr. Suess Hop on Pop.  She was no longer on the paralytic, but was still on the chloral hydrate to kind of keep her sleeping but kind of aware; she had restraints on her arms to keep her from attacking the tubes if she woke up too much.  Dr. Jeff wanted it this way though, to begin slowly waking her up.  Such good news this night.  Gracie had been off the ventilator for 8 hours this day, and 6 hours on Saturday; the new estimate of getting home would be around Christmas time.  Dr. Jeff expected Gracie to remain attached to the ventilator for about 5 more days, and then begin recovery!

While I read Hop on Pop to Gracie, her eyes fluttered and she was so aware that her mommy was with her; she tried to open her mouth and cry.  I was so happy to see my little girl coming around, but yet worried that she would wake up too much.  I held on to her finger and she held tighter.  I was so proud of my little fighter; she was so brave, so courageous.

I did not know that this would be the last time I would have with my little girl, just the two of us spending time together.

Gracie's Illness - Facebook Statuses

My facebook statuses during the last 4 weeks of Gracie's life.  Read this post from bottom up.

Caylee Angels can only spend a short time on earth, before they leave to shine among the stars. Gracie had so much strength and fought as hard as she could, until her little body could fight no longer. Now she sleeps among the angels, always and forever my little girl. Grace Ellen Breanne ~ July 4, 2006 - November 16, 2009 (Tue, 17 Nov 2009 14:21:37 GMT)


Caylee missing a certain little ponytailed girl, who loves to turn the computer on and off and on and off, repeatedly pokes at my eyeballs because she is facinated by them, raises her hands so that she can wiggle her fingers and giggle at them, and who can melt anyone's heart. (Tue, 17 Nov 2009 06:47:47 GMT)

Caylee Back on the rollercoaster ride with Grace. She has blood coming up her endotrachial tube. Dr. Jeff was called in. More tests, more sedation. Gracie was doing so good :-( Going to get more information. (Mon, 16 Nov 2009 16:16:56 GMT)

Caylee Is so proud of Gracie and how far she has come. Gracie is having "trials" now where the vent is at lowest possible setting as if Grace is breathing on her own; today they did it for almost 6 hours. Sedation lowered every 24 hours. Grace knew I was with her tonight; she tried to cry. Her nurse put her hair in 2 French braids after her dad detangled it for an hour. (Mon, 16 Nov 2009 07:45:34 GMT)

Caylee *sad* (Mon, 16 Nov 2009 03:25:19 GMT)

Caylee Is lol. Can't wait to see my baby girl in 1 hour. But already missing my family back at home. (Mon, 16 Nov 2009 01:48:38 GMT)

Caylee Is making yetanother trip to nanaimo, without G-baby :-( (Fri, 13 Nov 2009 19:01:38 GMT)

Caylee Is ticked. Came out to car to find a $25 parking ticket. Can't find the one I paid for that was good until nov 16th. It either went out my window, or fell into the heater vent. Now I had to park on the road almost a km away and walk back to the hospital. I'm not paying for a new ticket. (Fri, 13 Nov 2009 06:35:01 GMT)

Caylee Got to sit in for doctors rounds today... Doctor, nurses, pharmacist, respiratory doctor.... They are happy with Grace. Says she looks so much better. Swelling is starting to go down now, going to start feeding her neocate 5ml per hour on top of her tpn nutrition, and sending a req for physio. Slowly beginning to wean her off of the sedatives/pain meds over the next few weeks. (Thu, 12 Nov 2009 18:26:09 GMT)

Caylee is panicking and worrying.... don't like worrying. stress stress stress.. and not about Gracie. Going to go and check on my baby girl. and try to sleep. (Thu, 12 Nov 2009 06:01:41 GMT)

Caylee Mmmm pizza... Real pizza... Better than jello, jello, and coffee..... (Thu, 12 Nov 2009 04:58:33 GMT)

Caylee Is just a bit spooked out now.. (Thu, 12 Nov 2009 02:04:30 GMT)

Caylee Is having a break from hospital life. Lunch with Heather and little Alex at market square! Grace is stable and doing good so far today. (Wed, 11 Nov 2009 20:47:51 GMT)

Caylee Grace is stable now, but with a temperature of 38.4. Surgery went well, but stressed her out post-op; her heart rate dropped very low, and her blood pressure too. They had to put her on blood pressure meds again. They are having a burn nurse look at her feet due to the blistering. Her abdomen was partially closed during surgery. (Wed, 11 Nov 2009 17:13:50 GMT)

Caylee Is going to bed. What a night. UpdTe in the morning. (Wed, 11 Nov 2009 06:36:09 GMT)

Caylee Gracie is going to surgery right now.... If they can't stitch her up, they will be cleaning out the abdomen area and putting another vacuum dressing until she is less swollen. (Wed, 11 Nov 2009 02:05:51 GMT)

Caylee Wonders...... What makes someone an H1N1 suvivor? (Tue, 10 Nov 2009 21:43:02 GMT)

Caylee Day 14 in the PICU. Grace has a fever, but otherwise having a stable morning. Surgeon thinks he will close up her abdomen tomorrow. She had a sponge bath today and a bit of a massage. Can't wait to give her a kiss, but I'm too short and can't reach her :-( (Tue, 10 Nov 2009 17:12:14 GMT)

Caylee Gracie had her first whole good day today! Her stats were great for the last 15 hours. She is getting a bit of a fever now but still low. (Tue, 10 Nov 2009 05:11:27 GMT)

Caylee Hop Pop.... Pop Hop..... We like to hop, we like to hop, we like to hop on pop.... STOP... you must not hop on pop!!! Reading Dr. Seusss to Grace was fun. She tried to blink her eyes at me. Hop on Pop was Alex's favorite book when he was 3~!! (Tue, 10 Nov 2009 03:17:14 GMT)

Caylee I'm in Victoria, a big city.... Why the he'll can't I find a Dora cd to play for grace..... 3 stores, and nothing..... Oh well, back to the icu to b with my girl. (Mon, 09 Nov 2009 22:09:28 GMT)

Caylee Gracie better get well soon, and come back to me - cause I realize now, she is all I have. Just the two of us. (Mon, 09 Nov 2009 21:33:23 GMT)

Caylee Frustrated, and tired of hospital life; want Gracie to feel better so we can go to nanaimo. Need a break. anyone wanna do lunch or anything on Wednesday? (Mon, 09 Nov 2009 21:01:57 GMT)

Caylee is frustrated, and pissed off.... (Mon, 09 Nov 2009 08:08:18 GMT)

Caylee Gracie is battling a fever... 40.3 but down to 39.8 now. She has had Tylenol, advil, and is now covered with a cooling blanket. Her heart rate is between 185 and 205. (Mon, 09 Nov 2009 03:10:48 GMT)

Caylee Gracie's surgery went well. They found a 4-5 inch piece of her bowel had died. That was causing the inflammation, swelling, and cellulitis of her tummy area. It has been removed now. Her temperature is very low now so they've had to cover her with warm blankets. I am amazed at the strength my little girl has in fighting this battle. (Sun, 08 Nov 2009 23:24:25 GMT)

Caylee Gracie made it through her operation. More update later.. This update is only for my fb friends, please don't post it anywhere else... As some family has not been contacted yet. (Sun, 08 Nov 2009 21:08:44 GMT)

Caylee is lucky to have an amazing boyfriend, amazing kids, amazing family, amazing friends, and an amazing little girl who is stronger than anyone I know. Really appreciate all the support and thought well-wishes we have been receiving from everyone. (Sat, 07 Nov 2009 18:25:35 GMT)

Caylee Frustrated frustrated frustrated frustrated. I think I would like some beer. Wait, sad too. Maybe lots of beer? (Sat, 07 Nov 2009 00:33:38 GMT)

Caylee Gracie is going to have a CT Scan in a few minutes to check her tummy. Her temperature is up again. (Fri, 06 Nov 2009 21:49:38 GMT)

Caylee Wishes she could possibly understand the dynamics of how people think...... I'm astonished of how someone could possibly think it would acceptable to even put me through more stress. My daughter's father is the most ignorant prick I have ever come across, what the hell was I thinking. (Fri, 06 Nov 2009 19:51:48 GMT)

Caylee Wonders why grey's anatomy has to be about pediatrics tonight... Oh well, I'm going to try and watch it with my new friend and fill up on Halloween candy, and then check on my princess. (Fri, 06 Nov 2009 05:06:12 GMT)

Caylee Wishes she could watch Grey's Anatomy tonight, but if I can watch tv and have a break, it can't be about a hospital. I miss home. (Fri, 06 Nov 2009 02:45:43 GMT)

Caylee Gracie is the strongest, most bravest little girl I know, and I am so proud of her. I can't wait to hold her again, and to get woken up during the night two or three times; I'd give anything to make her healthy again. (Thu, 05 Nov 2009 06:11:11 GMT)

Caylee Gracie has had a plasma transfusion and a blood transfusion today, and her fever finally came down from 39.3 to 37.4. It has been one week in the ICU. Saw her favorite commercial today, and it reminded me of my smiley giggly girl. (Thu, 05 Nov 2009 00:47:12 GMT)

Caylee Gracie has been in the ICU for one week now. Today she is having a plasma transfusion. She had a fever of 39.3 this morning. (Wed, 04 Nov 2009 19:45:05 GMT)

Caylee is tired, worn out, sore from flu shots, frustrated to be stuck in a hospital, missing her man, and wishing her little girl could be healthy and at home. (Wed, 04 Nov 2009 02:02:46 GMT)

Caylee has just been poked with both both flu vaccines. Gracie is having a surgeon look at her tummy this morning to rule out infection. Ultrasound showed no fluid in her tummy... Questions as to why it is so swollen. (Tue, 03 Nov 2009 18:58:44 GMT)

Caylee is tired, and worn out. (Tue, 03 Nov 2009 00:20:05 GMT)

Caylee we had an update from her intensive care doctor... She is not out of the woods yet, but condition seems to be improving. It could turn better, it could still turn worse. He says she is a very strong little girl, a true fighter....and does have a chance at pulling through. A lot of her organs still need work. Lungs... Foot.... Edema? Are some of the issues at the moment. (Mon, 02 Nov 2009 21:58:49 GMT)

Caylee Gracie's ventilator and tubing were fixed this morning. She is still overflowing with tummy juices but they are trying to remove it. Going to try and suck the air out of her tummy.... Overall, a good morning. Some doctor is going to look at her foot, as it may need a skin graft. Hoping it can heal on it's own. (Mon, 02 Nov 2009 20:36:53 GMT)

Caylee has left the hospital to dispute a parking ticket.... Grrrrr (Mon, 02 Nov 2009 17:56:38 GMT)

Caylee on a plus side, when grace was first put on the ventilator, it was giving her 95-100% of her oxygen... Today it is giving her only 35%. Can't wait to hold my little girl. (Mon, 02 Nov 2009 17:37:35 GMT)

Caylee seems like everything goes well for grace, something has to go bad. Waiting to here from her nurse who is taking care of her right now... Her heart rate is way up again, and she is bleeding out her mouth. (Mon, 02 Nov 2009 16:20:40 GMT)

Caylee was looking forward to her chicken dinner from swiss chalet; then arrived back at the hospital and realized no napkins, or cutlery! damn it. I'm so proud of my princess! I can't wait to go back in and see her when the nurses are done their reports/shift change and their check-in with Gracie. (Mon, 02 Nov 2009 04:17:07 GMT)

Caylee Gracie recognized my voice when I came in to icu! Her nurse noticed it first. And she tried moving when I sang her 3 favorite songs to her..... She feels it when her nurses move stuff on her, she tries to pull away (Mon, 02 Nov 2009 02:36:04 GMT)

Caylee big sigh of relief... 5 minutes till I'm with my princess... Back at vic general. (Mon, 02 Nov 2009 01:33:05 GMT)

Caylee is on her way to vic to be with a very special little girl. Thanks everyone for the ride offers; he showed up! (Sun, 01 Nov 2009 23:46:16 GMT)

Caylee is anyone going to Victoria today? My ex is in Victoria and so is my car, and he was supposed to drive to nanaimo to come and get me to take me back up there.... But he still isn't leaving Vic...... (Sun, 01 Nov 2009 21:43:16 GMT)

Caylee gracie's been taken off of her insulin, blood pressure medications, and other meds have been lowered... Her heart is stronger and her oxygen Sats are doing very well..... Back to the regular ventilator today..... Thanks everyone so much for keeping grace in your thoughts... She is a true fighter! More updates later :-) (Sun, 01 Nov 2009 19:45:55 GMT)

Caylee Gracie had a good night. Still in Peds ICU, and hanging on. Will update more later on. (Sun, 01 Nov 2009 17:14:09 GMT)

Caylee wonders why life must always be so complicated. I just want my girl to be healthy at home, and my ex to be run over by an airplane. (Sun, 01 Nov 2009 01:44:45 GMT)

Caylee platelets cause platelet count low. Last night red blood cells because hemaglobin was low. Blood transfusion because blood was low..... That was overnight....... Gracie is a VERY sick little girl. (Sat, 31 Oct 2009 18:19:52 GMT)

Caylee Gracie had a good night, but threw up this morning (med side effect)..... Chest xray right now... Her meds include: epiphenidrine, dopamine, insulin, morphine, midazolan, lasix, rocuconium (paralytic), and two others... (Sat, 31 Oct 2009 16:14:57 GMT)

Caylee No big updates for Gracie at the moment. Still in ICU, and still fighting. The nurses rolled her over so now she is on her tummy to make her more comfortable. She is still in the "medically induced" coma so that all of her energy will be spent fighting the illness, and not the doctors/nurses. (Fri, 30 Oct 2009 23:19:50 GMT)

Caylee In Nanaimo. laundry. In Vic by 9am. Gracie had a rough nite. Some blood had to be given to her. Ventilator malfunc'd cause of fluid. Gracie's heart rate/blood pressure dropped seriously low because she had to be taken off the machine temporarily. More update to follow once I am back with her and can talk more with the nurse. (Fri, 30 Oct 2009 13:05:16 GMT)

Caylee is really worried. Grace is having some blood pressure and oxygen problems. (Thu, 29 Oct 2009 19:21:43 GMT)

Caylee Gracie is on a new ventilator now, as the other one was giving her too much oxygen and was caused liquid to get in to her lungs (its not good, but is being corrected). The new ventilator will be gentler on her. Her stats stayed stable through the night, and she looks more like Grace now, not so much like the pale little girl of yesterday. (Thu, 29 Oct 2009 15:51:06 GMT)

Caylee is thankful for all the support from everyone.... We're keeping positive that Gracie will pull through this and we can move her out of the ICU soon. Grace is doing very well at the moment. Her stats have been stable, and we just saw that circulation has returned to her leg. She still needs everyone to keep thinking positive thoughts. Today has been a very rough day, but it is looking brighter for my princess. (Thu, 29 Oct 2009 00:58:39 GMT)

Caylee Gracie is stable at the moment!! Please keep thinking about her :-) (Wed, 28 Oct 2009 23:07:26 GMT)

Caylee Gracie NEEDS all the thoughts and prayers possible... BabyGirl, you are a fighter, and you need to come home with mommy :-( (Wed, 28 Oct 2009 17:54:10 GMT)

Caylee Grace is on a ventilator machine. She isn't holding up her oxygen on her own and needed help. Doctor's words last night, "this isn't good" She is heavily medicated now and will sleep most of the time while we try to make her better. Waiting for the nurses to finish their shift change so I can go in and see her. (Wed, 28 Oct 2009 14:50:21 GMT)

Caylee Gracie is in the pedatric ICU at Victoria General; we have confirmation that she has H1N1. The flu has reached her lungs. Please keep her in your thoughts. (Wed, 28 Oct 2009 01:39:26 GMT)

Caylee is with Gracie, being airlifted to Victoria General... Wish her first helicoptor ride was under better circumstances. (Tue, 27 Oct 2009 22:24:52 GMT)

Caylee is waiting to hear where Gracie will be transferred. BC Childrens or Victoria General. Her flu has reached her lungs. (Tue, 27 Oct 2009 21:30:06 GMT)

Caylee pediatrician paged. Grace is pale, and on oxygen now. She is going to be getting a chest x-Ray to make sure her lungs are still clear..... Fever still hovering around 39 degrees. I hate seeing my little girl like this. (Tue, 27 Oct 2009 19:18:29 GMT)

Caylee Grace has had 3 doses of Tamiflu so far.. Still a very high fever, and not doing too well. (Tue, 27 Oct 2009 17:49:10 GMT)

Caylee is in the hospital with Gracie. She was tested today for H1N1 but won't get the results back soon enough as the sample has to be sent to Vancouver. She is starting Tamiflu today on the precautionary side because of her complicated health issues. (Mon, 26 Oct 2009 19:33:41 GMT)

Caylee is one sick girl... and has one sick baby girl. (Sat, 24 Oct 2009 16:32:21 GMT)

Caylee has a very sick little girl. I guess it is off to the doctors we go; hopefully we don't have to stay at the hospital.... (Fri, 23 Oct 2009 17:43:51 GMT)

Gracie's Illness - PICU @ Victoria General Hospital - Day 1

October 27th, 2009

On the helicoptor looking down towards Nanaimo's Departure Bay Beach.  A place that Gracie and I went to often.

By early afternoon, Gracie and I were on a helicoptor being flown to the Pediatric Intensive Care Unit (PICU) at Victoria General Hospital.  Gracie was so restless, I wanted to just pick her up and hold her on the way to Victoria but she needed to be strapped on to the stretcher.  I tried to think about other things, as I was only now beginning to realize how serious things were.  Gracie moaned and groaned, and she managed to fall asleep for a few minutes; the helicoptor ride only took about 20 minutes.  It was loud and we had to wear a earmuffs that had a little mic attached to it.

Starting to land in Victoria, BC, at VGH

I remember being walked off of the landing pad and following some people, along with Gracie's stretcher, to a private elevator inside the doors of the hospital.  We were taken up to the 4th floor (pediatrics) and brought to a small corner where the PICU was located.  I was unhappy that I was not allowed to follow Gracie in while she got settled, and had to sit in a parent waiting room across the hall.  It seemed to take forever for the doctor to come and talk to me.  His name was Dr. Beck, and he would be one of Gracie's intensive care doctors.  He said that Gracie was severely dehydrated and that because of this, her potassium and sodium levels were extremely dangerous.  Potassium is essential for regulating how the heart beats, and when potassium levels are too high or too low, it can cause an abnormal heartbeat.  If the potassium is low, it can cause muscle weakness.  Sodium helps to regulate how much water is in the body; it also aids in helping transmit signals in the brain and in the muscles.  If a child becomes dehydrated, they can become confused, weak, lethargic, ect.  This explains why Gracie was so trembley and disorientated while she tried to stand, why she was so irritable and restless, and why she had attacked my green jello.  Dr. Beck told me that it would take him about 48 hours to turn the damage from the dehydration around. 

It was finally time to go in and see Gracie.  The nurses came and showed me what the routine was to be able to go in to the PICU.  First you had to wash your hands with the hand sanitizer outside the main door.  Gracie was in an isolation room on the very far righthand side; there were two isolation rooms that were glassed in, and 4 beds in the middle (the PICU was shaped like a crescent).  Next I had to go in to a small room that was attached to Gracie's room, although still protected, and put on a gown and mask, and then wash my hands again with soap/water and hand sanitizer.  Then it was time to see my little girl.  Gracie looked so small in her crib; the nurses had her kind of propped up a bit.  They were trying so hard to settle Gracie but she was just so irritated and restless.  The nurses even brought in a little DVD player with a Dora movie to try to entertain her, but it did not work.  Eventually they had to give her some chloral hydrate to make her drowsy and sleepy; it kind of worked.

It was shift change at 6:30pm, so I had to leave Gracie for an hour while the nurses did their meeting and changeover.  I was shown to where I was going to stay on the pediatric floor; Gracie's dad was now there as well and had to stay in the same room with me.  We were lucky that the hospital was going to allow us both to stay, because normally it is one parent per patient.

I was back in Gracie's room by 7:45pm and staying by her side.  She still was extremely restless and was not breathing well.  At 8:30pm, Dr. Beck was called back in to take a look at her; she was not breathing very well.  At 9:00pm, Dr. Beck placed Gracie on the ventilator.  It took an hour for him to have her ready; I had to leave the room again while he prepared her and finished up; he had to cut her purple jammies off of her :-( .  They also added more port IVs so that they did not have to share IV lines, making it easier to keep track of different medications that she was going to be on.

Gracie's Illness - Nanaimo Regional General Hospital

This photo was taken on October 26th; the last photo I have of Gracie awake.

October 25th-27th, 2009

When we were brought up to the pediatric floor to be settled in to Gracie's room, I wanted her to be treated like a big girl.  At home Gracie slept in her big girl twin size bed, so this time at the hospital I wanted the same.  All of her last stays in the hospital were in the crib because she slept in a crib at home.  So we set up the bed for her, but very shortly after, I decided that we should bring the crib back in the room because I forgot that the crib was good for keeping Gracie in a safe place to play and if she was energetic enough, she could cruise around it, especially if she had an IV or NG tube placed. 
Gracie seemed very aggitated in her room.  I could not get her to settle at all.  She did not want to be in the crib, she did not want to be cuddling, she did not want to play - she moaned and groaned - could not get her to sleep at all. 
Dr. Hales, the on-call pediatrician for the weekend, came in to check on Grace later in the afternoon.  I had never particularly liked this doctor as I found that he often does not know what he is talking about.  I was sitting in the chair with Gracie on my lap when he came to talk and check her out.  His conclusion was that she was not a sick child, but an "angry child".  I was completely mortified.  Anyone who knew Gracie (and most of the nurses and doctors have come across her at some point) knew that Gracie was a mild-mannered, gentle child - not an angry and unhappy child!  Anyway, he left saying that he would not be doing anything for Gracie and that her regular pediatrician would be on-call for the next couple of days beginning Monday.
That evening, Gracie continued to moan and groan and was generally just unhappy in her room.  I could not take her out because she was on droplets precaution, meaning that her room was isolated and we needed to stay in it.  I tried to get her to sleep in the crib, on the chair with me, and then I set up some blankets on the floor and just tried to entertain her.  I left her for a few minutes while I ran to the cafeteria to grab something to eat - green jello.  When I came back, I brought her out of the crib and sat with her on the floor while treehouse tv played in the background.  I ate my jello, and she kinda crawled on to my lap and attacked it.  This was not something typical of Gracie, it was the first time I had ever seen her do something like this.  She grabbed at it with her hands, smooshed it between her fingers, and there was green jello stains on her sleeper.  Eventually I did get her to sleep for a little while, but everytime the nurses came in - she woke up and could not re-settle.

On Monday the 26th, Gracie's pediatrician Dr. Bartleman came in to see her.  She knew right away that there was something not right about Gracie and how she was acting.  It was her intuition that told her to test Gracie for Influenza A and the H1N1 virus, and begin her on Tamiflu (the antiviral for the flu) as a precaution.  I was in disbelief because I didn't see Gracie as having any "flu symptoms".  Gracie's nurse that morning, Mary Ellen, felt that Gracie did seem to have some symptoms, which explained Gracie being very "trembly" when she tried standing/cruising along her crib, the moaning and groaning, and the fever.  Dr. Bartleman told us that an NG needed to be placed if Gracie did not take enough fluids by the early afternoon.  She did drink a little bit but not enough.  The test results came back a few hours later with Influenza A being positive; we were told by the nurse that likely the H1N1 test would be positive as well (about a 99% chance).  The NG was placed later on in the day, and they took her down to X-Ray to check on its placement because it seemed a bit off.  The photo of Gracie above was taken in the evening after she had the NG.  Because of all the commotion  with the nurses coming in and out, placing the NG, the x-ray, and coming in to do all of her stats and check on her - Gracie did not sleep, and when she did sleep for it seemed 20 minutes - she was woken up for testing.  Between 6am and 10am Tuesday (27th) morning, Gracie slept for only 2 hours total.  At 3am, I could not take any more of being awake.  I had a headcold and needed to sleep so that I could be awake and alert for Gracie.  I told the nurses that I was going to leave Gracie in her room in the crib and go home for a couple of hours so that I could get some sleep.  When I arrived back at 9:30am the following morning (the 27th), Gracie had been given some gravol at around 7:30-8am, and was finally asleep.  But by 10am, my little girl was already waking up.
She was extremely pale and seemed to be gasping for air.  I called for her nurse to come in, I believe it was Kathleen, and she agreed that Gracie did not look good at all.  She called for the on-call pediatrician, Dr. Menard.  He came in and did all of her stats, and also agreed that she was not doing well.  He said that he was going to do a chest x-ray to see if anything was going on.  He told me that if the flu had moved to her lungs that she would be sent to another hospital because they didn't have the equipment necessary.  "All child flu patients were being sent to BC Children's or Victoria General Hospital if the flu had entered the lungs".

The X-Ray was completed and it did show the flu had moved to her lungs, he told us that we would be airlifted shortly once he found which hospital had space for us. 
The scariest day of my life; my little girl being airlifted away from home, away from the nurses and doctors she knew.