Not just another Sunday…

Raena is still trying to wake up from this deep sedation. Her BP was high and they increased her meds to help with that. Now her heart rate is back over 120 which is a bit too high too.

Dr Kim told me the amount of sedation she’s on would knock me out and no one would be able to make me budge, so she’s either building a quick tolerance or really wants to wake up. If she continues to have the bouts they will give her some pentobarbital to help with the sedation but not enough to put her in the deep deep coma that he originally was going to.

Her brain really needs to rest but Raena seems to want to just wake up. Good signs for the day they want her to awaken, now is just not the time.

Stable again

They have warmed her body, albeit slowly on purpose, back to 96.26°F and her heart rate is back to 76bpm and her blood pressure is 116/65 which is the range they want them to be.

They have been able to turn all her medications back on now that she is stable again. They will soon feed her so she can get some nutrients into her body and not just electrolytes.

Dylan, one of my favorite nurses, says everything is looking good again. He had been off the last 4 days but it’s a comfort to see him and Dr. Kim. I was able to get more sleep this morning once I knew they were both working on Raena.

Thank you to everyone reading this blog and keeping Raena in your thoughts and/or prayers it means a lot seeing all the comments and texts coming my way. I am reading them even though I’m not always responding to them.

I’m hoping she stays like this for a bit so she can get the needed rest that her brain and body needs.

What a start to a Sunday…

They are still trying to warm her up with a heating pad and extra blankets. Her body temperature is 89.6 atm.

They determined her CO2 saturation in her blood is too low so they’ve decreased breathing to 10 breaths per min.

She has excessive urine outflow so they are trying to see what is the cause of that as well.

She keeps pushing her tongue out and no matter how many times they push her tongue in she puts it back out,  so what they’ve done is put gauze in between her teeth so she can’t bite down on her tongue as the risk is she can bite it off being so sedated.

Good news is her brain fluids are just a slight pink tinge now instead of a blood red color. Her ICP levels have been between 10 and 15 all night so that is a good reading.

It’s been a stressful morning since 530am or so with her temperature and heart rate being so low. More updated to follow…

Heart rate…615am

Concern for a low heart rate…she keep dropping below 50 bpm and her core body temperature is 89.98°F. They are trying to warm her but it seems they are a bit confused which is concerning to me. Her heart dropped as low as 44 bpm.

They have now done 2 blood samples in a matter of 5 mins to try and see what is going on.

The RT (respiratory therapist) has made a couple adjustments to the ventilator to see if there are any issues with her breathing. All other vitals seem good besides the heart rate tho.

Saturday night late update…

They have decreased the breathing machine to 14 breaths per min instead of 16 because of Co2 levels. Raena has soaked her pads and it seems urine has been leaking from the catheter so they needed to change her pads and insert a new catheter so it doesn’t happen again. While doing this her O2 levels dropped to almost 90% but they came back a few mins later. The nurses said this was due to exertion from her body and her blood needed to be resaturated with O2.

They also added another tube up her other nostril (ng tube) that goes past her stomach and into the beginning of her intestine to be able to start feeding her nutrients. They will basically be feeding her something similar to baby formula by injecting food through a syringe directly into her stomach.

Saturday 6pm update…

Today has been a nice calm day for Raena. Her core temp is currently 93.74°F which is the coolest she has been. I believe they are going to increase it a bit now.

They finally have her vitals in a good place and her ICP (intracranial pressure) level is 15 which is good. The neurosurgeon was just in and said that day 5 is usually the maximum swelling day for brain injuries and it should start going down from this point forward. (Fingers crossed)

As long as vitals stay in this range they will look at trying to do another CT scan on Monday or Tuesday. This will let us know if swelling has gone down enough for them to start waking her up.

It’s quite amazing watching the nurses constantly change medications and IV drop bags on a continuous rotation. There are 3 IV machines in her room all full of medications as well as normal monitoring and the EEG machine. This large room has quickly shrunk into what feels like a tiny room you need to step through a maze of wires and machines to get from the chair to the door.

She is still propped up at a 30° angle for the least amount of pressure on her brain and has special circulation bands on her legs to simulate walking so her muscles don’t atrophy. They will probably start feeding her nutrients through the IV as she’s only been fed electrolytes up until now. For those that know Raena you are probably thinking the same thing…she can’t get any smaller lol.

The road to recovery is not even being thought about yet as we just need to get past this first hurdle of her waking up and knowing who we are. Until then nothing can be planned out or even thought about.

I’m taking her sisters out for dessert tonight to just get out of the hospital and spend some much needed time with my other daughters. I’ll be back and spending the night again with her and will post an update in the morning. Altho I expect tomorrow’s update to be short and trouble free.

Sat morning update …

Through all the meds raena is on, she still managed to open her eyes a couple times through the night and her vitals did go up but not as high. Talk about will power… They increased her fentanyl drip to help with pain and make her more sleepy. If these measures don’t work they may have no other choice than to use the pentobarbital and put her into a deep coma. They described it has the brain would basically show zero signs of activity with an occasional blip. Hoping they don’t have to do that drastic measure.

Her body temperature is now set at about 95.7°F and I’m not sure if they are going to raise or lower it from there. They did fight with a high blood pressure all night and it sounds like they are at max dosages of medications to deal with it. It is currently in a good range.

Updates to follow…

Latest information Fri 500pm

Dr Kim and Dr Khalessi have spoken together regarding treatment and have come to a conclusion. Raena is highly medicated in a medically induced coma without using pentobarbital for now which would put her into a deep deep coma. If her vitals stay good they won’t need to do that. If her brain pressure doesn’t increase to acceptable levels they will need to go ahead with the pentobarbital and use an EEG computer to monitor brain waves. This is a last resort but still may be needed.

They are slowly reducing her core body temperature by about 3°F to reduce brain activity.

Raena will be in a deep sleep for an unknown amount of time, possibly 5 to 10 days but it really depends on how her brain responds to this procedure.

She will have drugs to counteract her body feeling cold so it won’t shiver and create more muscle movement than needed. An antidiuretic will be used to draw fluids from the brain to help reduce swelling.

I don’t know if visitors will be allowed to see her or not, but I will let everyone know soon. I will be spending the weekend here while Nikki takes care of the girls altho we may rotate shifts throughout the weekend.

I can always see people in the cafeteria or waiting room and probably wouldn’t mind a few visitors, just text me if you decide to come to make sure I’m either awake or here.

My cell is 714-884-8087

Steven (scared but hopeful Dad)

Preliminary results…

There is no new sign of a stroke or a bleed but her brain has swollen more and added more pressure her ICP levels are just over 20 and they want it below that. They will be putting Raena into a deep sleep for 5 to 10 days so she has no activity and allows her brain to rest. Not sure how I feel or read in to this just yet.

Just ordered her post op cd and angiogram for delivery to dr khalessi.


 

Finish line…

The procedure is done and she did well. They are transferring her to a new bed. Results show no AVM or current bleeding. Whatever ruptured has repaired itself and another angiogram will be needed in the future altho the timeline was not defined.

Dr Kim said she will need to be intubated until Raena’s body can control it’s own heart rate and blood pressure. For now they say no surgery needed but I will be sending results to Dr. Khalessi in San Diego for a 2nd opinion.

My mind is a little numb and I don’t know what to think…I will let the shock dissipate and Nikki and I will discuss when we both have a clear mind.

For now it’s rest and no stimulation for Raena until she gets her vitals in order. Then remove the intubation and get her on the road to a full recovery.

It is still unknown how long this might take but with each day getting slightly better we hope to have our daughter back in our arms with her beautiful smile.

Raena is still in a medically induced coma for the time being. Since she cannot regulate her vitals on her own they will keep her in this state until she is able to do so.

Angiogram is underway

11:15 about 15 mins left. Nurse just told me vitals looked good and she was transferred to the table well. It took about 20 mins to move her from bed to table. The pediatric intensivist and a team of doctors and nurses are with her. Once done they will need to transfer her back into a bed. They are trying to get a new airflow bed for her for when the procedure is done. Update to follow shortly…

Mind is blank…if there was ever a time I needed to get my mind off something now is it…it will be about an hr before we find anything out. Talk of crash carts within the whispers of the nurses doesn’t sit well…but I know raena will make it through this. She is strong, she is magical in so many ways.

Angiogram going to begin

My heart is beating a million miles a minute. Nikki just went for a walk to try and clear her mind…please send as much love for raena as you can…this is a very critical procedure as her BP has gone up with all the activity. A team of 8 or 9 doctors just rolled her down the halls and into the cardiovascular interventional laboratory. Pins and needles and my heart racing…I don’t pray often but here goes nothing

Delayed…

Angiogram pushed back to 945am. Hope this fire alarm stops. Her heart rate looks good but blood pressure just spiked so they are going to get that down and transfer her in just a bit.

Just waiting…

A fire alarm in the hospital seems to be delaying things. Raena is all ready and Nikki and I are getting anxious playing this waiting game. #waitingSucks

A long night…

It might sound bad, but it’s really all good. Raena is starting to come out of her deep sleep more and more because she is getting better day by day. However, this means she is feeling the pain more and her gag reflexes are kicking in because of the intubation tube down her throat. This keeps her from resting well and Nikki or I have to constantly try and soothe her back to a calm relaxed state.

When her eyes open her blood pressure shoots up from 110/60 to 160/100 or so and her heart rate goes from a 95 bpm to a whopping 170+. It is both tiring and painful to watch my baby girl go through this. I have been up since 2:00am by her side so every time she wakes up I’m right there. Nikki and I have been alternating shifts so she has had her fair share of sleepless nights as well.

I am happy to report Nikki has gotten a solid 4 hrs of sleep since writing this update for those of you that worry about her. Hopefully she stays a sleep for a couple more. Raena gets her resilience from her momma 🙂

Her angiogram is scheduled for 830 am this Friday morning, so keep your fingers crossed for her to get a good reading.

The only thing I can grasp on to about her going through this pain is the nurses say the versed (ver•said) will make her not remember any of the pain nor being intubated, fingers crossed :/

They are just starting a new fentanyl iv drip to prepare her for the angiogram. They want her heavily sedated and without any sense of pain for the whole procedure so she can stay as still as possible. It is currently 615 am.

More to come in a bit…

Finally some relief

Raena has been uncomfortable from the way her vitals were looking. Her heart rate and BP were too high and when awake she would tear up and get stiff and clench. They gave her a bolus of precedex and increased her other pain meds in the iv. Raena is now looking comfortable and her vitals have returned to an acceptable range.

Hour by hour…day by day

Raena keeps opening her eyes and seems to be agitated so they are giving her fentanyl to help ease the pain and versed to help not remember what she is currently going through.

Her angiogram is set for 8:30 am on Thursday and we will anxiously be awaiting results.

She just finished getting a transfusion of platelets and is starting red blood cells now.

Update 3/10 by Dad

Raena is showing signs of improvement. She has opened her eyes about 10 times, usually it lasts for about 30-45 seconds then she goes back into her sleep. When she does open her eyes her vital signs shoot up quite high and Nikki or I just try and reassure her everything will be ok and try to calm her down.

Her angiogram is scheduled for tomorrow morning and today they are doing a blood transfusion to increase her platelets and red blood cells for tomorrow’s big day. We are hoping this will show what caused Raena to have the aneurysm in the first place.

It did seem as if Raena did squeeze our hands when asked but that is still hard to tell. They just gave her more pain meds to help her cope with the 2 incisions in her head as well as all the iv’s and wires running around.

Thank you for the continued support whether visiting, texting or sending positive vibes (prayers some call it) as all forms are welcome.

With love from Raena, Nikki and Steven!

Raena Update 3/9/16

E Chow

8 hours agoDetails
Today, was more of a recovery day for Raena from the MRI yesterday, so no tests.

She hasn’t initiated as many breaths as yesterday. When they brushed her teeth last night, she moved down the bed, away from the toothbrush and her knees moved up. She moved her arms and legs when they wiped her down also. Yay for movement!

The most exciting news for the day was at 4:45pm, she opened her eyes for 30 seconds and turned them towards Nikki. Then 5 minutes later, she opened them for 20 seconds, which Nikki characterized as a blank stare. Wahoo! These efforts also jumped up her numbers they are trying to keep low.

Steven’s bosses gf is friends with a top neurosurgeon (Alexander Khalessi) at UCSD and Steven has overnighted her MRI to him.

The plan for tomorrow is to get an angiogram to hopefully find the source. They need her to be stable enough to do this test. Ideally, she is at a 30° angle to maintain her intracranial pressure and drainage. The test requires her to lay flat for 30 minutes, plus the transport.

Lastly, one of their friends started a gofundme page for them. Please share this link as you feel comfortable. I’ll be posting it on my Facebook page.

https://de.gofund.me/sftar8jw&rcid=7fb61e9ae63911e584d0bc764e05901c

After I wrote this, we were sitting with Raena again and the nurse was cleaning her eyes and mouth. She became agitated, moved around, and then we (Steven, Dad, and Josh) were able to see her open her eyes two times!!!

Raena’s update 3/8 per josh

Thank you for all of the prayers, well wishes, and offers of help.  They are greatly appreciated and the prayers are helping! I was just with her and she was twitching her foot 🙂

Josh was off work and able to spend the day at the hospital. Here is his email…

Raena had an MRI today.   It took a long time to transfer her from bed to gurney (and again to mri table).  But during that time she moved or lifted each of her limbs.   She did great while in the mri machine.

Results of mri show that there is no tumor.   There are a couple of areas that have decreased in swelling although the surgical site still has swelling (which is to be expected).  MRI did not show any large atrial ventricular malformation (AVM).

The next step is to do an angiogram which will hopefully show the specific area of the bleeding and the extent of whatever defect caused this to bleeding to happen.   The doctor said that it will need to be fixed at some point.

Raena is lightly to moderately sedated at this point.  She has shown some good signs today such as the moving of her limbs, her eyes have been reactive quickly to light, and although she is still on a ventilator, she has at times been breathing on her own, and is continually initiating her breaths.  They want to start seeing more activity from her- all of these things she is hooked up to are not comfortable and they would like for her to start behaving like a 10 year old and not be thrilled to be hooked up to so much stuff.

Update 3/08 from elaine

To update everyone, I’m at the hospital right now. Raena had a severe headache, dizziness, and vomiting this morning. The ambulance came right away. She had surgery, the back of her skull is still removed to release pressure. They could not find the source.

They are keeping her sedated and monitoring her temperature and vitals. Tomorrow, they will do an mri and ct. Right now, the neurologist does not think it’s a tumor, but a deep, slow bleed.

It sounds like the plan right now is to keep her sedated for 2-3 days. The pedo critical care Dr said that how she wakes up, if she wakes up, will tell the most about her condition and recovery.

Lots of prayers, please

How it began

Monday morning before school Raena started to complain of a headache. Thinking nothing of it I went to get her some ibuprofen chewables for her to take and by the time I got back with theme she said it hurt really bad and she couldn’t even take them. (I thought she was trying to get out of school because it was raining.) She pointed to a spot right behind her left ear and within seconds said it’s moving daddy and pointed to the back of her head.

I tried getting her to take her medicine but she then said she was getting dizzy or spinny and seconds later said she had to throw up. I rushed her to the bathroom where she had to hold herself up from being so dizzy and definitely puked. She said she had to keep her eyes closed to not spin and at this point and I thought it might be a migraine starting to happen with those symptoms.

I laid Raena in bed to continue getting the other girls ready for school. After about 5 mins I went to check on her and found her nonresponsive. I picked her up and she was limp in my arms. Kaylee called 911 and offered cpr but she was still breathing.

The ambulance showed up in about 3 mins and rushed her to Fountain Valley Regional. We were very lucky  to find the pediatric neurosurgeon just happened to be on site when Raena arrived.

She underwent a 3.5hr surgery to release the pressure on the brain and had a skullectomy performed. The results were inconclusive of finding the issue. Nikki and I were crushed to find this out since we got no answers after cutting open our baby’shower head.

So we wait…

Raena’s Update Blog

Hello to all our family and friends. This blog has been created to help disseminate information on Raena’s medical journey to a healthy life!

Please feel free to send this site to anyone. Please comment and add any positive feedback or vibes to our baby girl. We appreciate you taking the time to show your support.

A parent of one Raena’s good friends setup a donation site to try and help with the costs associated with her surgeries and future recovery costs. If you feel inclined to donate or pass on the link please find it below:

https://de.gofund.me/sftar8jw&rcid=7fb61e9ae63911e584d0bc764e05901c

Steven and Nikki

Update On Raena

3/10/16 @ 11am