Category: Latest Updates

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.

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.

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…

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.

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.

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.

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…

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)

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.

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Raena’s vitals are spiking and she is not responding to medicines and her cranial fluid is draining more than it should. Headed in for a CT scan wish her luck.

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.

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…

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…