Updates

Raena is on her way home today! She started talking a week and a half ago and was also cleared to eat all foods and liquids last week as well. She has been doing great and will continue therapy once she is home!! This is a GREAT DAY!!!

Yes, Raena said her first words over the weekend! She is whispering a few words here and there and continues to improve. She is now doing 3 hr rehab 6 days a week. They are working on new things all the time and have a discharge date they are shooting for at the end of May.

Raena just got transferred to acute rehab and is trying to walk stairs today 🙂 she has her new braces on and is ready to go.

She just stood on her own to a 14 count 🙂 raena is doing amazingly well…she has a big heart and a will to get better fast!

Woohoo she just did 15 and broker her record… ooh just did 16 and even took a step to catch herself fromy falling… she is practicing standing and sitting on a bench and is mastering that as well.

We we are headed out to meet Mommy and sisters for a breakfast at IHOP. Raena is very excited to get out for the first time!

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This new rehabilitation hospital is pretty cool. The nurses and specialists here seem to have a good idea of what they want Raena to accomplish on a daily basis. Friday was very exciting for me as I got to join in on her PT/OT sessions and even saw her eat her first solid food since her injury occurred. The Speech Therapist brought out mandarin oranges and cinnamon toast crunch for Raena to try and she was very excited. I also learned how to turn all of Raena’s fluids into a nectar thick substance which is pretty simple. Regular watery fluids are too thin for Raena to consume at this point in time due to her muscles still learning how to swallow properly. I learned today that there are like 54 different muscles that are required in order to swallow, pretty impressive lol.

It was a joy to see Raena try and eat oranges for the first time, in fact it is one of her favorites, so it was a great first treat to try! When they gave her the cinnamon toast crunch cereal, they had first made it soggy in milk but then allowed her to try and eat it dry, which was a great thing to see her chew and crunch on the cereal. She seemed to enjoy it as she wanted that over the soggy one 🙂 Her mouth muscles tired quickly though and she was only able to eat a few pieces of cereal and a few pieces of the orange. However, she did gulp down 2 danimal yogurts as well.

A good friend Mike showed up for her Friday PT session and it was cool to see his reaction as he is a PT himself and seemed to understand everything the staff was doing with Raena and giving me some good tips. He also was impressed with the way Raena has recovered so far and it is good to have someone else’s opinion as to how good she is doing since I have nothing to evaluate it against.

For me it is tough to even think about at times watching her struggle to turn over or to take a step and even stand up or chew her food. Although, I am also very happy when I see the difference in where she was just a couple weeks ago and where she is at today. If you recall, she was not really moving much and her left side of her body was pretty dead to the world, and now she is moving all parts of her body very well and even trying to exercise them all day long. It is a struggle for Raena to walk but day by day she is getting better and getting the coordination back. You can see her determination and will power to get over this injury and I am confident she will recover well. There has not been a prognosis for where they expect her to be other than from the scans and the way she is reacting to treatment they say it should be a pretty good recovery.

I am hoping she will be able to either attend her Aunt’s wedding at the end of May or possibly her school graduation in June, but we are taking it one step at a time. There is no reason to rush her road to recovery. Raena wants the downstairs room in my house and I was thinking this would be best for her to have when she returns from the hospital but I could have been wrong. The rehab specialists say that it would be good for her to have to go up and down stairs again to regain all of the same coordination and mobility she had before the injury. Even if she gets the downstairs room, she will have to go up three steps and back down three steps as I live in a tri-level house. I think we will try and give Raena the room she wants and Kaylee wants to help decorate it and get it all ready for her.

The best thing from this past week is that she is definitely recovering and making progress daily. You can here the happiness in the PT/OT voices everytime they work with her and say how far she is coming along in such a short time span. Thank you again for all your support you all are giving, Raena definitely feels it!

Visitors are always welcome, just give me a call or a text to make sure it is a good time, I am usually there from 3pm throughout the night and will be there this whole weekend. Again, in case you need the number, it is 714-884-8087 … Talk to you all again soon!

This place is not nearly as nice as a big hospital in terms of new equipment and monitoring devices especially the Kaiser sunset facility. However it is supposed to be a good rehabilitation hospital so hopefully that’s where they shine.

She is scheduled for her first OT evaluation tomorrow at 9am to determine what her next steps are at this facility. She is currently in the skilled nursing area but will probably start sub acute therapy soon. They don’t have to move rooms until she graduates to acute rehab which is just down the hall.

This place is spacious and has a library of Disney dvds for kids which is cool and 2 different rehabilitation areas for kids. Tonight they gave her Ativan and methadone along with an antibiotic for a probable UTI that caused some issues in her tummy the other day. They didn’t have liquid Ativan here so crushed a pill and mixed it with water which seemed to do the same trick.

She is settled and seems to like it here which is good. Tonight we finished book 1 of Harry Potter and I am looking forward to the next one. It was a very good read and I think I may have liked it as much if not more than raena did herself lol.

This past weekend was a joy to see how much Raena has progressed. Her left side of the body while still weak is definitely improving dramatically. Each day you can see a difference in how she can move her body and she is gaining strength daily.

She takes a lot of attention right now as she is always awake since she is no longer on pain meds and narcotics and is always awake. She constantly wants to work out and do her daily exercises more than she is required to which is a joy to see. I am still awaiting for her to start talking, but she is good at using her signs to let me know what is going on.

I also got to have her sit on me out of bed for a few times this past weekend as well as sitting her on the big girl potty to try and go to the bathroom. She is definitely progressing at a very fast pace. I expect this to continue for quite some time while at the rehabilitation clinic.

Today Raena is being transferred to Health Bridge in the city of Orange which is supposed to be a phenomenal rehabilitation clinic. Visitors are welcome, and as usual, please let me know when you plan on coming so we don’t have too many people visiting at the same time or she isn’t sleeping when you want to visit. This clinic is setup more like a home than a hospital, however it still qualifies as a hospital without an ER or OR but they are close to CHOC so if anything should happen she can be rushed there.

She will also be having another angiogram in the next few weeks along with a few other genetic tests to try and determine what caused the bleed. Until the cause is found I still worry it can happen again. I am off to visit the new clinic and will send an update shortly.

Raena is doing amazing 🙂 she is able to respond to simple commands such as asking her to open her eyes or stick out her tongue. She will move hands and legs when asked and is gaining strength on her left side.

She is doing so well that Kaiser wants to move her to a rehabilitation center in Orange County called Health Bridge. This seems like a great facility, they have skilled nursing, acute rehabilitation and sub-acute rehabilitation available for her in a home type atmosphere.

The goal is to get her on acute therapy but she may not be ready for that just yet, they say she has to be able to endure 3hrs of therapy so they might put her in sub-acute first. Kaiser is making a determination today and she may move as early as today through Sunday.

Raena does a great job at answering questions with a nod of her fist in a yes or no fashion simulating a head. Today I got to help her with her OT and sat her up in bed while they worked on her neck muscles. This weekend I have to help exercise her muscles with making her move her tongue from left to right and sticking it straight out. She also has to blow out her cheeks and blow like she’s blowing out a candle. The OT also wants her to work on touching each finger to her thumb and opening her eyes more.

I’ll update as soon as we know when she will be moving. If you are planning on visiting at Kaiser Sunset text or call me first to make sure we aren’t going to be transferred.

714-884-8087 is my cell for those that don’t have it.

The last couple days for raena have been a bag of mixed feelings. Not seeing her all weekend was difficult and I didn’t know what to expect when I saw her since she is no longer intubated and off of her meds. Yes, that’s right, off her meds. At least via a constant drip. The only narcotics she is really on are methadone and Ativan 3x a day. The Ativan is even half the dose that it used to be and they are giving it to her via the feeding tube and not intravenously. She is still on steroids which they are weaning her off of as well.

The goal is to reduce meds to see what she can really do. It’s hard to get a good evaluation when she’s always drugged up. The main issue at hand seems to be chasing her blood pressure. The doctors aren’t sure what is causing it and instead of just giving her BP medicine, they are trying different things to see what could be causing it instead of making it with drugs.

Raena has more movement of her body being off of the meds but her left side is still very weak. She can move her left leg more than her left arm but at least there is some movement.

As of yesterday, Raena was moved out of picu and into the normal peds wing of the hospital. The goal now is to determine what might have caused the bleed, how to best feed her, and PT/OT to rehabilitate her. There is still no prognosis of what to expect or what is going on with her yet. The team of doctors are supposed to meet today and try and come up with a plan now that she’s out of picu.

A speech therapist is supposed to do a swallow evaluation today or tomorrow to determine if she can start to take liquids or food down herself or if she will need a ng tube for future feedings. The ng tube would go directly into her stomach and would replace the nj tube that is going up her nose into her intestine.

It is very hard at times to watch raena flail her arm or leg into different positions and even whimper at times and not be able to figure out what is wrong. She goes through moments when she just doesn’t feel like communicating at all and others where she will cooperate. I can’t tell if this is 10 year old attitude or just recovery from her brain injury. The nurses think it might be her tummy hurts as she has not had a bowel movement in a few days. They are going to talk to the doctors about that as well.

The good news is she can have visitors of any age now that she isn’t in the picu. I really want ashlyn to visit but that will depend on how ashlyn feels. I will be with Raena all weekend from Thursday night on so if anyone is planning on visiting,  please text or call me first. They allow multiple visitors but at the same time they still want it to be somewhat quiet and controlled since she is in a new environment and everything is new to her. They don’t want a lot of cross conversations going on at the same time either.

All in all I think raena is doing better but it is hard to tell and definitely has a long road of recovery ahead of her. There is talk of her eventually being transferred to an acute rehab facility or a nursing facility to help with her PT and OT. Once I get a chance to talk to the doctors today we will know more.

What a ride…although didn’t get to experience it (lucky Nikki lol) Raena was airlifted to Kaiser Sunset on April Fool’s day. As nervous as Nikki might have been, I am sure she enjoyed the ride, comforted Raena and hopefully took some cool pics to share!

Before the helicopter ride, which only took 17 mins, they had Raena sit up in bed and she definitely enjoyed that! Can you imagein lying down for over 3 weeks straight?!? I am so happy she finally got to move into a different position.

Raena seems to be settling into her new place just fine. I am sure it will be a big adjustment for her with new doctors, nurses and staff, but they seem to be very nice and following the same game plan that Fountain Valley PICU had. That is comforting.

When Raena arrived at Kaiser, they had her do another MRI the next day and it came back looking fine. The doctor has the scans that were done at Fountain Valley and is combing over them trying to find out what their game plan will be moving forward. Nikki seems content with the Doctors, which is probably a good sign since she likes things done a certain way for those of you that know her. Things are still looking good for Raena, although we won’t know the extent of her injury until further testing and PT is completed.

This was my weekend with the girls, so I did not get to see Raena at all since she was transferred up to LA. However, just before she was transferred Elaine visited and had this to say…

Dad, Josh, and I were able to go see Raena tonight before she was transferred. Originally, Raena was going to be transferred to Kaiser LA today. Nikki said they didn’t have a bed for her in PICU, so she was going to be transferred to Fontana instead. Then the Kaiser neurosurgeon wanted a ct before having her transferred. Then while we were there, they scheduled her for a ct at 9 tonight. We left just before 10 and there were no signs of her getting a ct yet. So, it looks like she will not be transferred tonight. The Kaiser neurosurgeon is going to evaluate her ct and then decide when to transfer her. We don’t know if LA is still a possibility or Fontana.

As the past couple nights, when we arrived, Raena was agitated. Pulling different things, swinging her right arm, kicking her right leg. At 8, they gave her more methadone. She was still moving around, but less agitated. She played a game of thumb war with Nikki, which was really cool to see. Nikki stepped out for a little, and Raena kept counting 1-5 with her hand. She would put up the number of fingers we asked. She was quickly running 1-5. I had her try to count backwards. She hesitated a little at first, and then did it.  Forward and backwards. Backward and forward. Forward was fast, backward was a little challenge she conquered. She did that for 30 min at least.

Nikki had been doing identification earlier, and she grabbed Josh’s thumb when asked. Then she was grabbing the number of fingers we asked her to grab of my hand. Then she started counting with my fingers. She’d grab all 5, push one out, then push the next one out, and so on until 1. Then she would go back up and grab each of my fingers in her hand until she had all 5. I was really happy and excited that she was having such great cognitive function, and seems like she was getting creative with her counting games. She played a couple games of thumb war with me, and no surprise, her right thumb is super strong!

We saw minor movement of her left arm and leg. Nikki said Raena gave a light squeeze with her left hand today.  She also had PT and sat on the edge of the bed. Nikki said she seemed to like it.

I was in really good spirits when I left tonight and so proud of Raena and all of her hard work!

Raena was extubated today and she seems to be doing great! They are keeping a close eye on her and Nikki was even able to climb into bed with her today 🙂 Good things to keep coming I hope. They will start to ween her off her medications to see how much she can move and do on her own now that the tube won’t be down her throat. Thank you for all the positive thoughts and prayers that have been sent.

So yesterday was a good and bad day, but I will definitely take the bad as it wasn’t really a step back. They have reduced her drugs in her body, again, the only IV drip for pain is Precedex and Fentanyl and even those have been stepped down. She gets a constant feeding through a tube as well as scheduled antibiotics, steroids, antacids and methadone.

Because Raena has less drugs in her system, it is a joy to see her awake more and moving, however, the bad part is simply the fact that she is more agitated and aware of what is going on. I did see all 4 limbs move on her body yesterday which is a good sign, altho movement on her left arm is very minimal, she moved it. She was also putting herself in very awkward positions, but this must have been comfortable to her because every time the nurse or I would put her into what looked to be a more comfy position, she would move back to her old one. She was moving her head a lot, which was also a good sign. She would pick it up or move it left to right. Although most of the day she keeps her eyes closed, you can find her peeking and when you see her, she tends to close them again, I am not sure of the game she is playing there, but she definitely knows that you are looking at her.

Nikki clipped her nails the other day, but I think I am going to cut them way back because she would rather dig into human flesh than her stuffed animals, and she has broken skin a few times now lol. I am happy she is so strong in her right arm, but boy does it hurt after a while. For now, I will take this as a big win 🙂

You can tell she gets very agitated because she starts to flail her arm around and kick her right leg a bit and her heart rate zooms about 150, in fact at times it was hitting the 170s until the nurses could give her some ativan and extra fentanyl. One time we tried Benadryl but that seemed to have very little effect and she was only able to get about 15 minutes of rest.

They are currently scheduled to remove the tube from her Wednesday at 7:30am, so fingers are crossed and positive vibes are being sent. In order to prepare her for this, they have been slowly exercising her lungs by doing something the nurses call “sprinting.” This simply means they reduce how much the machine is working for her to make her start breathing on her own. They decrease it to 4 breaths per minute for 4 hours at a time. Yesterday she did magnificent on this!

The hardest news came yesterday that Kaiser thinks that she is stable enough to be transferred, which is good, but they want to transfer her to the Sunset Kaiser in Los Angeles, basically next to Hollywood. This can pose a difficult time for Nikki and I to always be with Raena and take care of the girls.

Well, the posts have been less frequent as there has been more to do and more visitors at the hospital this weekend. That doesn’t mean that there was no news, so here it goes.

On Saturday morning Raena had her ventricular drain removed. This was the tube that drained fluids from her brain when her ICP level was too high. They had monitored her drainage for a few days and after no new fluid drained out they felt it was safe to remove the stint. This was very good progress in her battle to recovery. With the ICP levels staying below 20 with her ventricular tube clamped down the last few days, that meant her body was able to move the spinal fluids on its own even through her bouts of high heart rates or blood pressure. She is starting to look more “normal” without all these tubes and bandages around her. I will post a picture a little later today.

She also had a CT scan done on Friday to show the swelling has definitely gone down. There is still a slight bit of blood left from her episode, but that is also going down nicely. Through her brain decompression, she has very limited movement in her left arm, her dominant hand, but hopefully when she is off all of these drugs and monitors they can start to rehabilitate her and get her left side back to normal.

The head doctor was in who created the whole pediatrics ICU this weekend which was very comforting as he would look at her charts and have the nurses make certain adjustments to get her levels to where he thought they needed to be in order to get her off the ventilator. As you have read, they tried to extubate her last week but her upper respiratory tract was too swollen and her muscles too weak to allow that to happen. They have been giving her decadron, a steroid, to help with her inflammation in order to give her the best chance of removing this breathing tube. They have also weaned her off of the Versaid and she is only on a Fentanyl drip for pain and an as needed bolus to help manage pain when it gets too high. Raena also responds very well to Ativan for anxiety and rest when she needs it.

She is still able to communicate with her right hand by doing thumbs up or a few other gestures that she has learned. It really helps to know when she needs to be changed or when she is in a lot of pain instead of trying to guess all the time. My hardest issue is I sometimes ask two questions at once, which is really impossible to do when you are only getting a thumbs up or down signal, so I am getting better at single subject questions 🙂

Saturday night was a sleepless one for me, I awoke at 2:45am when she needed me and after that I think the warning alarms on her monitors kept going off inadvertently so it kept me awake the rest of the night. Then when I thought I would sleep, it was shift change time and xray time etc. Saturday was also a stream of constant visitors which is nice, Raena appreciates it as when I let her know who is here, she gives a thumbs up! Kaylee also got to visit this weekend and that put a smile on Raena’s face which was so nice to see. Kaylee’s friend Ally also came and between the two of them, they managed to remove the nail polish off her right and and repaint it, altho I don’t believe they got to the left one lol.

Josh and Elaine came by on Saturday so I could try and pick up my dry cleaning so I could have clothes for the week and run out to get Raena a new Easter animal, she loves BeenieBoos so that is what I got her. I was also able to get a couple small things and stick them in Easter eggs for some of the nurses that have been helping Raena through this journey. It was nothing big, but I am hoping the gesture was well received! The funny thing that happened on their watch is that Raena ended up waking up and using a new sign that they didn’t know what it meant. They called me and Nikki and neither of us knew either, however, they were able to calm her down by massaging her leg and reading her more of Harry Potter, which seems to really help her anxiety levels when they shoot up. I have enjoyed the book as well, although it does get a bit tongue tying at times with the way the characters speak.

I thought Sunday would be a quiet dull Easter in the hospital with her, but my buddy Aaron came by in the morning which was an awesome surprise! He brought me breakfast and best of all a recorded message from his 2 girls for Raena. The hospital gave Raena a very nice Easter basket filled with animals, coloring books and a cool sun bonnet as the basket. It was very touching for the hospital to do such a thing for the kids that are staying there on Easter. Throughout the day, visitors came in and out and her Aunt and Uncle from Indiana even came in for a bit to say hi. A friend of mine even kept me company via text messages as we watched a show together from her home state in Alabama. All in all, Easter in the hospital wasn’t so bad!

Raena got a lot of rest on Sunday which was good. Kaylee was able to visit again, and while there it seemed that her and Ally did not ever want to leave. Raena also got a new line put into her left hand to help draw blood because something was not quite right with the other line, but with careful work from the nurses and the doctor, they were able to get the right side to work as well. They seem to have a good plan for Raena to get off the ventilator, altho it doesn’t sound like today will be the day. The operating room is too crowded and they want the ENT and an anesthesiologist to be there with her when they remove the tube. The reason for the OR is simply to make sure everything goes right and she is ready instead of just taking it out to test her. They have more equipment in the OR to help facilitate this process.

The ophthalmologist has not been in to see her the last few days, but her eye does seem to be getting better. The ulcer is definitely reduced and looks to be almost gone. Hopefully this will all return back to normal as well.

It was a busy weekend as I help keep Raena calm through all her changings and sit by her side and read her Harry Potter when she is up for it. I also keep track of all her medications and hold her hand through her episodes of pain. Nikki and I keep in communication about how she is no matter who is staying with her so we know what to expect when it is one of our shifts. I am sure I forgot something in this update with it being a busy weekend, and if I recall anything that isn’t in here, I will definitely shoot out another update!

Thank you again to all the people who are personally visiting, calling, texting and emailing. All of the donations of food and money have been amazing which any of you can also track on the gofundme page created by one of Raena’s friends. The visitors are appreciated by Raena and definitly by me as it does get a bit lonely at the hospital at times. As those who know me know I don’t like being by myself a lot! Altho with today’s digital age, I am able to communicate with many via text and messaging apps. So again, thanks for helping me keep my sanity through all of this! Another update should come tonight…

 

Raena is doing well. She is still communicating via hand signs to let us know if she is in pain or if she wants something. They are exercising her lungs through the weekend which means they are reducing what the ventilator is doing for her to make her muscles and lungs work a bit harder to breathe.  They are still giving her steroids for her swelling and the goal is to have her go to the Operating Room on Monday or Tuesday to have the tube removed. They want an ENT to do this in the OR because they have special tools to assist to make sure it is a good time to remove the tube without first doing it and then finding out it was too early.

Raena absolutely hates the breathing tube and they have her sedated and on pain meds just enough so it doesn’t bother her. Unfortunately this makes her very sleepy so there is not a lot of time to visit with her while she is awake. Every time I want to start reading her Harry Potter she is too tired to listen, altho Dylan did play a Disney movie for her last night and she seemed to like it, but only watched a few minutes before falling back asleep.

She had another CT scan yesterday and everything looked good from what the neurosurgeon said. The swelling is down, her ICP level is under 10 for the most part and her drainage is still at 0, which is exactly where they want to see it. The next few days will just be rest for Raena so when they do extubate her, she will be ready and not have to be intubated again.

I am planning on spending the whole weekend with Raena in the hospital and hopefully she will be awake a bit for Easter and I can give her a new stuffed animal and an Easter Egg. I am trying to get Easter Eggs for the nurses too if I have time today before I head back to the hospital. They have been so awesome to Raena and myself that I just want to do something fun and nice for them. I will be headed back there early this afternoon for the weekend. I will try and get an update out while there, altho the internet and wifi there are not the greatest!

I am sorry for the delay in posting this info, it has been a busy couple of days. On Tuesday, the doctors tried to extubate (remove the ventilator) Raena and get her to breathe on her own. She struggled to breathe and they tried helping her by giving her some steroids and an inhaling mist similar to what an asthma patient might receive to open her airway up. Unfortunately, this did not work and the doctors determined she would have to be intubated again. Even with a struggle to breathe on her own and basically no voice yet, Raena was trying to say “No, No, No” which was very disheartening.

They had to sedate her again in order to intubate her and while doing so, they were able to notice that her upper respiratory tract was swollen and they could only see one of her vocal chords while doing the procedure. This allowed them to figure out the swelling was probably due to the ventilator tube being in for over two weeks and in order to get the swelling down, they are giving Raena a dose of steroids 3 times a day.

In addition to this, they have sedated her quite a bit so that the tube doesn’t bother her as she really doesn’t like it, although understands that it is needed in order for her to breathe properly right now. She groggily wakes up from time to time because of coughing up mucus or irritation caused by the tube down her throat. She is still able to communicate with us through hand signals and light squeezes of her hand to let us know if she needs to go potty or needs more pain meds.

They expect her to be in this sedated state for about 48 hours where they can look to see if the swelling has gone down in her respiratory tract so that they can be able to remove the intubation tube. Until then, Raena will need to have help from the ventilator in order to keep breathing.

As far as her eye goes, the ophthalmologist has come in daily to check on her eyes to make sure no permanent damage was done during the coma. She has dry spots around her eyes and an ulcer in her left eye from dryness and irritation. Over the last couple days, they have given her special eye drops and antibiotics to help with this. The doctor says that she is progressing nicely and the ulcer should disappear once the medication takes effect and the dryness goes away. The other thing is that her eyes need to be taped shut unless she is awake and wants to see to make sure that her eyes stay moist.

All in all, she is still improving, the doctors say this is not really a major setback and that it is typical in patients who have been in a coma and a ventilator for a long period of time. Hopefully these steroids and antibiotics will be able to reduce swelling in both her eyes and upper respiratory tract so she can be extubated for good and be able to have her eyes back to normal as well. I will send another update tonight!

Today was a tougher day. The doctors are trying to ween her off of the meds so they can extubate her, however in doing so she became a bit anxious and was fighting the ventilator. What she does is bites the tube so she can’t get air from it. The nurses had to use a bag of oxygen on her as she started to actually turn colors, but had it all under control.

The doctor thinks they reduced the sedation meds a bit too much and she became too aware of her surroundings and probably panicked a bit. When I got there I saw the tail end of another episode where she was fighting the machine, however this time the doctors gave her some Ativan to quickly calm her down and that seemed to work. They then increased the ventilator and gave her a bit of propofol so she could have a good nights rest, which she did!

This morning an ophthalmologist will be seeing her to make sure her eyes are ok since the left one is a bit dried out, however it does seem to be getting better. They will be able to determine if there is any type of damage to the overall eye from this long stay in PICU.

The plan is to try and ween her off of the ventilator again today, what they do is turn it to a CPAP setting that basically makes Raena breathe on her own without help from the machine so they can determine whether or not they can remove the tube. This would also mean she can’t have any more hard drugs to help her, but they would continue Fentanyl and Versed for pain relief and rest. They could probably give her Ativan too, but the object is the not fill her up with lots of drugs. In fact, to help with the withdrawals from 2 weeks of these drugs going through her body, they are giving her a small dose of Methadone 3 times a day to help her body ease off the drugs with minimal withdrawal effects.

Hopefully today is more promising for her in that they can finally extubate her. This seems to be the majority of her discomfort, not to mention lying in the hospital bed for days on end without being able to move. Raena does seem to like getting leg massages and moving her arms and legs in different positions for temporary relief.

I am thinking positive thoughts that when I arrive back at the hospital, she will be extubated and feeling better, keeping fingers crossed! Talk to you all soon…

Today was another good day for Raena! She is doing so well they didn’t even do another EEG on her. She is breathing over the ventilator, in fact they basically disabled it for 2 hours today so it would only breathe if she wasn’t doing it on her own and only supported her breaths and she did fine. The vent is currently set at 5 breaths per min and she is breathing around 11-12 per minute.

Her ICP level is looking good with everything still clamped down and the one time per day they are draining it, it is almost perfectly clear which is a great sign as well!

Nikki said she was up about 6 hrs straight today, unfortunately some of that time was spent trying to figure out what Raena needed to be comfortable but in the end, Nikki and Raena figured it out.

I just got done visiting with her for a couple hours and while I was there she ended up waking up. I was so excited as she was alert and able to communicate. I had told her right before she went back to bed that Nikki would stay the night tonight and Daddy would stay tomorrow night and she gave a thumbs up. Then I asked her if while I was there tomorrow she wanted me to read her Harry Potter, and she did another thumbs up! I love the fact that she has figured out the best way to communicate with us right now. She will also squeeze my hand to answer or blink, so there are a multitude of ways she can communicate until they extubate her.

They have reduced her medications again and she is on a good track to have them continually dropping them except for maybe the pain meds. They are not even using blood pressure medication anymore and she has that all under control now.

For the first time since all this started, I am excited to go back and visit and stay with her as she is awake and interactive. Ashlyn and Kaylee will be recording a video message for her that I will show her tomorrow when I arrive. Raena will be so excited to be able to see that 🙂

Looking forward for more good days to come…

Today was another good day for Raena! Today they clamped her stint from her drainage catheter that is in her brain. This is the catheter that measures her ICP level, and as long as it stays below 20 they don’t need to unclamp it. Only once did it hit 20, and they opened the clamp, but ever since her ICP level has been where it needs to be.

Today Micaela brought a team jersey signed by all of her teammates as they are off to the State Championships, and the whole team is using Raena as their inspiration! I thought that was very sweet of them.

Raena is doing so well, that today they put a soft restraint on her arms so she cannot pull the breathing tube out of her mouth. This is definitely a good sign, and she is still communicating by hands and eyes. Prior to the accident, Nikki and Raena play a game where Nikki squeezes Raena’s hand 3 times to indicate “I Love You” and today Raena was able to squeeze her hand back 3 times! This is very exciting news as she can not only squeeze her hand still, but she is able to understand what is going on.

The doctors might decide to remove her breathing tube in the next few days if she continues to progress as she is. She already is able to initiate breaths on her own so the time may come sooner than later.

She has finally been able to go to the bathroom on her own, number 1 and 2 which is all great progress!! The nurses are doing a bladder scan if she does not urinate after a long period of time as when they first took the catheter out, she was having some difficulties, but it doesn’t seem like that any more.

All in all, a very positive day for Raena. If she keeps it up at this pace she will probably be taken out of the PICU soon. What happens from there I have no idea. I am not sure if she can come home, or transferred to the normal Pediatrics unit or if she will have to be transferred back to Kaiser. There will probably be a lot of decisions that need to be made here shortly, but I am still living hour by hour day by day.

Thank you again for all the thoughts, prayers, texts, phone calls and constant visits! Through the support of everyone in the world and especially our local community and wonderful family, Raena seems to be pulling out of this nightmare that we have been living. I cannot thank you all enough, and when she is better, I am hoping all of her friends can start to visit her in the hospital as she would like that very much!

Today started out as a challenging day but ended with some great progress. Throughout the night Raena had a high heart rate but seemed comfortable at the same time. Then at 3am they decided to bathe her and change her linens. She did not like this at all and was coughing up a storm and her vitals were spiking. Once completed they finally had her vitals under control and she could sleep through the rest if the night.

The night nurse did not recalibrate her ICP levels properly on the drainage flask even though I told her I thought it was wrong, so immediately during shift change I made sure the new nurse knew the issue at hand and got it rectified immediately.

Raena’s brain fluid has been very clear and her ICP levels hover around 14. All good signs. The intensivist said he wanted to see the drugs wear off and her to start moving. All of which she did 🙂

This morning Raena got her CT scan completed and her swelling has gone down even more. The most dangerous part of all this is the location of her aneurysm, which is basically next to the brain stem and that controls vitals such as heart rate and blood pressure.

After her CT scan she got electrodes put back on her head for the EEG which will monitor her brain activity to help determine if she is going thru any seizures or sympathetic storming.

They will now wait until Sunday to do another EEG test as the neurologist said she was still under the influence of the other drugs. They’ve started to reduce medications at a certain rate so she can start to wake up.

After her sedation medications were reduced she started to wake up a bit. She was wiggling her toes and batting her eyes. The neurosurgeon was in doing his rounds and said things were progressing nicely.

Tonight Raena was much more alert actually blinking in response to the nurse. They asked her to blink once if in pain and again if she needed pain medicine. The most exciting part is she blinked twice to get more meds and say she was in pain.

I will be visiting first thing in the morning for a bit to say hi to raena as she may be fully awake by then. Fingers and toes crossed.

They are reducing medications and Raena’s heart rate and BP have been consistently high today. Her ICP levels has stayed around 15 which is good.

She is still spiking,  which now they refer to it as storming,  they called it sympathetic storming. This is due to brain trauma. Friday will be a big day. They want to do another CT scan to check her swelling as well as turn off most of her meds and do a few tests on her,  including another EEG monitoring. They want to see what is going on with these episodes and to see how her brain waves look without all the medications.

I have mixed feelings about trying to bring her out of the coma,  but she has also been in this coma for 10 days now. She has lost a lot of weight also, so I hope they can give her nutrients to help her body gain weight.

So far everything looks good. Her HR and BP have been on the high side, and they are watching it. She has a slight fever, too, which they just gave her Tylenol for. They think the fever could be causing the high HR/BP.

They also increased her food. The great news is that through all of this, her ICP has remained in an acceptable range. I think I saw it measured at 16 at the highest, and mostly around the 13 range. Dr. said “that is key! The HR/BP we can adjust, but the ICP is key.”

Today has been a bit stressful only in that they are decreasing some meds but her BP and heart rate are a bit high. They took a bit to figure out what meds to give her and at the moment her vitals are stable again.

She has some blood coming from her mouth that they are not sure where it’s coming from at this point. It is not significant and they are keeping an eye on it.

Many people are wondering about her other sister’s and how they are doing. Ashlyn says she misses her best friend and is sad when she thinks about it, and we just tell her the doctors are taking good care of Raena and she is just sleeping to rest her brain. Kaylee is older and definitely knows what’s been going on. In fact she has this blog and is keeping up to date like the rest of you 🙂

Tonight Nikki will spend the night with her so I’ll make sure to get an update from her so I can post it here. I’m hoping for a calm night for Raena again.

Talk about an update… in preparation to wake Raena up in a few days, here is what has transpired today. They have reduced the pentobarbital to half and were going to replace it with propofol (Michael Jackson drug) but she did so well that they didn’t give it to her yet. It is on standby. They cut off the vecuronium (paralysis drug) because they have raised her body temperature back to normal.

They removed the EEG machine and the wires and diodes from her head and she looks so much better.

The propofol has a shorter half life than the pentobarbital which is why they want to use that instead. The propofol will help when they try and wake her because it only lasts minutes in her system instead of hours or days like the pentobarbital does.

Her scratch on her back is just that and is nothing to worry about and they put a little dressing on it to protect it. Her drainage from her brain is very light pink which is a good sign. Her blood gas results are good, said she is basically back to breathing room atmosphere air as the mixture.

The Dr. said the once a day spikes are not too much of a concern as long as her ICP levels stay good throughout the day.

They bathed her as well and her vitals were good through all of that.

The cooling blanket pad was removed as well as the air conditioning unit. They are going to start feeding her a little bit of food called nutrin which is to give her some calories and help stimulate her bowels.

All in all things sound promising, I’ll update everyone in the morning.

Raena did her usual spike of the day and it took the doctors a good 1.5 hrs to calm her down. BP and heart rate all went up and surprisingly her ICP shot to 30 :/

Her lungs today were a bit cloudy in the xray so they have increased antibiotics to make sure she doesn’t develop pneumonia. She also has a small lesion on her back that they are supposed to try and treat today, it could be a bed sore or a scratch from the routine morning x-rays.

She is on a high salt content drip for electrolytes and they are reducing that so they can feed her some other nutrients. There is also talk of possibly removing the EEG monitoring and taking all the wires off her head so they don’t cause any burns on her face or head from the electrodes she’s hooked up to.

Her temperature also dropped to 91 or 92 today and they spent a while warming her back up to 95.6 again. Not sure why the nurse on staff let it get so low, but Nikki and I are always watching her vitals and quick to get a nurse if something is not optimum.

Thank you to all who are constantly reading this blog, I had to purchase a new server plan due to such a high volume of traffic to this one site, so hopefully for those that experienced difficulty getting on the site today, you won’t have any more issues.

I will be updating things as the night goes on, visitors are still welcome, just no one under 14 and no large groups. They want the room to stay relatively quiet so if you want to see her feel free to come by. Again, just text me so I can plan accordingly to keep large groups from forming.

Steven

714-884-8087

Raena’s vitals have been stable since about 3pm on Monday. She has had a couple visitors and a peaceful night 🙂 we need a few more nice days just like this so her brain can rest. Let’s hope she continues to be like this so we can wake her up soon.

The anesthesiologist was able to replace her tube without complication and gave her some propofol as an anesthetic to help with the process. They also increased her meds that she is currently on to aid in the process as well.

As per previous days, they have chased her BP and heart rate but it’s becoming less of a challenge. Dr. Kim wants to see her go a few days without any spikes in her vitals before they try and start waking Raena up and doing another CT scan.

Getting out to work today was a great stress reliever believe it or not. I will continue to go in to work in the am and use the afternoon to work by her bedside and continue to sleep in this so called chair bed until she is able to come home.

Again, thank you for all the kind comments and texts from people near and far, I’m sorry I don’t respond to them, but I do read each and every single one of them. It is touching to know how many people are pulling for her to be well whether they know her or not. I’m sure in reading this blog, some of you feel closer to her whether you’ve met her or not, and that can only help the positive vibes and prayers that are happening.

They bathed (wiped down with wet towels) Raena about 5am and she did well through it all without vitals spiking too much, the only tense moment for me was watching her O2 level drop down below 90 for a few seconds but the Respiratory Therapist was there to make sure everything was ok.

Her blood pressure is still a bit high, on the borderline of where they want it but they seem to not be too worried atm.

The biggest issue is she may have a mucus plug in her throat that is constricting the airwaves. The nurses can’t put the suction tube down because of this blockage to get mucus out. They are calling an anesthesiologist to put her under and use special tools so her head doesn’t have to be moved and she doesn’t react to the procedure so they can replace the vent tube.

This procedure should happen sometime soon, it scares me a bit to think she is so sedated and can’t breathe on her own yet they will be extubating her even if for a brief moment to reinsert another tube and remove the mucus plug.

Raena has been looking good tonight. She did get pentobarbital in a mild dose and it seems to have helped.   A couple blips here and there especially when nurse luci brushed her teeth. It’s amazing how she still reacts to things as doped up as she is.

Thanks to her cousin Micaela for coming to visit on a school night, that was very sweet of you. For now, visitors are welcome, but they need to be quiet and not touch her so as to not over stimulate her. Again, she is very sensitive to noise. I’m going to try to work a few hours tomorrow and Tuesday before they do another CT scan or try and wake her up. I’m hoping tomorrow mornings update will be trouble free.

Goodnight Raena 🙂

Those that know Raena know how skinny she is and what a high metabolism she must have (takes after her Dad lol) and they are thinking that may be the reason the drugs start to work but then quickly wear off.

They are going to be giving her pentobarbital in a sedation dose that will hopefully keep her more sedated than she is. Just when you think she is resting and calm, Raena seems to have the will to wake up and respond. The room door is now closed trying to keep the noise levels down.

Her ICP levels is good, under 15 and her drainage color is back to a light pink which is definitely a good sign.