Wednesday, January 30, 2013

Flowers for Julia

So many people have asked how they can help the Kings during this time of mourning. The outpouring of love and support, and all the creative ways of showing that love have been incredible, and Carrie and Glen thank you from the bottom of their hearts.

For anyone who feels moved to participate in this way, Carrie and Glen would like to invite you to help decorate the hall on Saturday by bringing a vase of flowers to place on the stage. After the service they encourage you to bring your flowers home with you, and in this way carry with you some of the beauty and love we share in Julia's memory.

Saturday, January 26, 2013

Memorial Service for Julia

On Saturday, February 2nd at 2:00PM, we will come together to celebrate the shining, mirthful little girl we love and to honor her memory. Julia's memorial service will take place at the Person Auditorium at the Finley Center in Santa Rosa, followed by a reception and light refreshments.  Children are welcome to come, and some special activities will be included for them.We hope you are able to join us.

Carrie is also working on creating a memory book about Julia, and she welcomes your help. Please write down your favorite Julia stories or memories and send them to Carrie via a comment on this blog or by email (carsoren AT yahoo DOT com). If you have photos of her that Carrie might not have, please send those as well. This book will be treasured by all of Julia's family, but will be most especially important for Amanda as she grows up. Thank you for your help.

Thursday, January 24, 2013

Sweet Julia is Free Now

Our beautiful girl left her body this morning. She was so happy at the end, cradled in her mom's arms with daddy by her side and so much love surrounding her. We sang and talked with her, and at the very end we took her outside to a beautiful garden where birds were singing and a sweet cat came to sit on our laps. So many tears, but also joy that she is free from the struggles she has endured with such grace and strength. She left so peacefully, and as Grammie Jen says, "My angel is now truly an angel her spirit is in us all! Her spirit will live on in us all in purple butterflies and flying high in hot air balloons! We are the sad ones but know she is at peace and enfolded in all love."
Love to everyone,

Wednesday, January 23, 2013

Julia update

Grammie Jen Reports:

My dear one, today was another day of roller coasters. We were very happy to hear that her stats were better and her heart was getting stronger. She was using a less toxic amount of oxygen and of course she got approved for therapy and help from the Regional Center, accepted for social security, and Carrie was accepted back into the family house. All good things. The first EEG [measuring brain activity] was good but the 2nd one was very bad. They will do another one but odds are 70% not hopeful. I personally am going for the 30% group of it being OK. [She is getting a medication that can cause the type of results that she got, so they will take her off the medication and repeat the test.] We shall see. It is so hard to see her little body going through this so I choose for the small 30%. Thanks and I love you all and all that you continue to do to for us all!

Grammie Jen

And a more recent update: 

They have been able to reduce the epinephrin, which is one of the more toxic drugs she is getting, the level of oxygen she is getting is now down to 50%, and her PH is in the normal range. These are all very good signs that her body is starting to recover somewhat from the trauma of the resuscitation.

Tuesday, January 22, 2013

Miss Julia is making use of just about every support the hospital has to offer. An oscillating  ventilator is breathing for her, she has a PICC line, IVs, arterial lines, lies on a cooling blanket and is being monitored by an incredible team of nurses, doctors and respiratory therapists. She is still completely sedated. She has been relatively stable with all of this support, but must be weaned from each of them before their risks become too great. We know that her heart and lungs have been greatly taxed. Her liver, kidneys and other organs so far seem to be functioning, an impressive feat considering what she has been through. All we can do now is watch and wait and give her tons of love.

And love she is getting. Her family and friends have taken turns by her side today, kissing her feet in their little ruffled socks and stroking any patch of exposed skin that is not hooked up to tubes or wires. Amanda went to school this morning and came this afternoon to visit with Julia. She brought her good friend Oliver with her, and Julia's buddy Finn came in too. Later Julia's cousins Connor and Molly came to see her also. All of the kids did so well, even though it is hard to see their Julia in such a scary setting.

We don't know what the next few days will bring, but we do know that Julia is embraced in the incredible warmth, love and light of her family and her community.

So sad to tell everyone that Julia had a terrible night. She needed to be resuscitated. The team did CPR for more than 8 minutes before she came back. She is now in a medically induced coma. Her heart and lungs have been badly compromised. Carrie and Glen are with her, and Amanda and Oliver are going to come see her after school. All we can do now is send her and her family all our love.

Monday, January 21, 2013

The Fight Continues

Julia continues to be in extremely serious condition. Her pneumonia is severe enough that even with a high level of support from the ventilator, she is struggling to breathe. She is getting medication to help take fluid off her lungs, and she is sedated. She was understandably agitated, which makes it more difficult to breathe, so the sedation is very important.

One bright note is that her two last cultures came back negative. Hopefully that is an indication that the infection is responding to the antibiotics.

Grammie Jen brought Amanda home to Santa Rosa tonight, so hopefully she can go to school in the morning. Nona and Grandpa Don are with Carrie and Glen in Oakland tonight.

I know I don't have to ask you to keep Julia in your minds and hearts; she is already there.

We are with you Julia and family--we are adding our strength to yours.

Sunday, January 20, 2013

Strong Julia fights a new battle

Miss Julia is battling a very serious infection. She was transferred to the ICU at CHO in the middle of the night with a fever of 104 and a heart rate over 200. The incredible team there worked hard to get her stable. By morning she was doing a bit better, but continues to be a very sick little girl. She was unresponsive throughout the first part of the morning, but as the day went on we were thrilled to see her start to move her arms and legs again, stick out her tongue when her mom asked her to, and begin to peek out through her half-open eyelids. She was transferred to Kaiser in the late afternoon, where the team who knows her the best was standing at the ready to give her the care she needs. Her 1 mile ambulance ride from CHO to Kaiser went smoothly. She had her mom, a doctor, a respiratory therapist, an RN and two EMTs on the ambulance with her. She tolerated the trip and got settled in to her new bed back in the PICU. The team there went right to work getting more labs drawn for cultures, placing a new IV and getting ready to give her the contrast so she could have both abdominal and head CT scans. Her fever was back up, as was her heart rate, but she was also more wakeful. They are hoping to better understand the source of the infection so they can give it a more targeted treatment, but in the meantime she is getting some pretty intense antibiotics that will hopefully knock out whatever bugs she is dealing with. 

I continue to be amazed at the strength and determination which radiates out from this incredible little girl. She has been through so much in her two and half years, and she continues to work so hard to heal. I know I've used this photo before, but it hangs in her crib at the hospital and I spent a lot of time looking at it today. It is one of my favorites, because it so perfectly captures her radiant, joyful, mischievous self. We love you, Julia. 

Julia needs our love today

Miss Julia had a very rough night and has an infection. She is stable for now and sleeping in the ICU here at CHO, but her condition is pretty serious. Please send all your good thoughts her way.

Saturday, January 19, 2013

My little angel had a good day in spite of little sleep and a very high fever and numerous tries to get an IV in and numerous tries to take blood. Her fever was 103.7 [due to a staph infection diagnosed last night] and her heart rate was 200. They need to give her a transfusion but they can't get the blood to do the type and cross match. A bummer! We know it will work out soon! 

 She had a fun time with Grandpa Terry and did tons of smiling and sticking out her tongue and just being darn cute! She seemed to love hearing him read her stories and he just loved all the smiles. He said that OT and PT came at the same time and when they sat her up and gave her a massage on her sides and back she was practically purring. She is exhausted as they finally got the IV in at 4 am. We just hope that it will last and be able to be used for the transfusion and antibiotics. They were going to do both a spinal tap and an abdominal CAT scan, but they canceled both and Carrie was glad of that so she didn't have to go through more things. 

After Carole and Don got there this afternoon Terry left and the doctors and staff told Carrie that she had to leave and get some sleep! She was a bit of a mess! She is now home and I hope taking it easy! It has been a rough week! The wonderful news is that Julia is doing so many things that she hadn't been before. Terry is so sure that he heard a sound when she was in full smile and seemed to be giggling! and he says the tongue is great and he had her working to bring it to midline and to both sides! She is trying very hard and getting more successful. That girl is just amazing!

Hopefully we can get the transfusion done and that will bring her heart rate down and then maybe we can get a handle on the staph infection. We want her to keep the forward motion going. Thanks so much for all your prayers and thoughts. They do help. Love you all and hope you are enjoying this lovely weather! Here it got up to the high 50s and felt a lot like spring! A bit early but very nice. I swear it is colder in my house than outside!
Love you all,
Grammie Jen

Friday, January 18, 2013

Hanging out with Grandpa Terry

As you can see from this sweet photo, Julia got to spend some time with her Grandpa Terry today. She is clearly delighted! Carrie reports that Miss Julia had a fever of 103 today. She is getting IV antibiotics and the team is continuing to work on reducing her ventilator settings. Unfortunately she will need a blood draw in the middle of the night, so the no-sleep saga continues. Glen has been in Santa Rosa with Amanda since Wednesday night; Carrie will stay in Oakland with Julia until Grandpa Don and Nona come tomorrow, when she will head home for some Amanda time. Hurray for the amazing team of grandparents!
Wishing everyone a good weekend,

Thursday, January 17, 2013

Tired girls

My dear sweet angels, I don't have a ton of information as my oldest girl is having a rough time with so many docs and people demanding her answers to multiple questions and her little one being exhausted  mainly from  lack of continuous sleep. So far she is "spitting in the wind" about that. They don't seem to understand that a 45 min stretch of sleep is just not doing it for a regular 2 year and certainly not for a recuperating 2 year old! The man that came at 6 this morning was so proud that he hadn't come at 5 like he was supposed to and when Carrie said that they were doing things to her until after 11 and then awaking her about once an hour for suction that it just wasn't cutting it! I get exhausted realizing how hard my little one is trying and not getting rest! They are going to assign a case manager to her next week and hopefully that will help give her some help with getting the various specialists in sync and the therapy also. She thinks that the docs are all really good, but it is just so very tiring! She did get a bit of time with long time dear friend Leigh this morning, but she didn't get out of the room until almost 6 this evening to try and sneak a shower in and they said she was too late. She just broke down and they reconsidered and let her in. YEAH for people with a heart! Unfortunately she only got to hold Julia for about 45 minutes as she was pretty scheduled and so many doc were coming through!
Hopefully tomorrow will be better. Terry will go in the late morning and stay until Carole and Don get there Saturday afternoon. We are hoping that that will give her a little break and give Terry the chance to give lots of kisses and stories to our little one.
I am so bummed that I still can't get my own kisses in and am afraid that she won't know her Grammie! Ah yes she will!!!!!
Anyway, my friends, my girl is progressing but it is very hard and we sure need to pray that she can get some rest by being able to sleep in the night. I know it will happen, now that they are becoming more and more aware of it.
Thanks for listening to a frustrated Grammie and mom as she is so worried about her girls. Not to mention the third one in Santa Rosa, at least she is hanging in and her dad and uncle are with her now and she has the schedule of school. A good thing!
Love you all,
Grammie Jen

Wednesday, January 16, 2013

Grammie Update

The family meeting was today and had lots of info and mixed feelings. The therapy was a great report as expected but the medical side had the same issues that we have been dealing with and how they would rectify the issues. The doctors are at odds as to their methods. Kaiser wants her there for any medical issues which mean that she has to go back to ICU and lose the aggressive therapy that they are doing at Children's. They don't have the same philosophies. The ICU docs are great but just want to keep her on the high vent settings that are safe and not push her at all. The rehab docs want to get her off the vent and move forward. It is a real dichotomy! They are trying to figure out why her red blood cells don't seem to be getting better - she has had over 6 transfusions at Kaiser and is close to needing another one tomorrow. They know she is bleeding in the gut but not a ton and they are constantly drawing blood, which shouldn't be that much but who knows? She has another fever and Carrie says she knew that she wasn't great for the past two days, but feels that it is probably viral again and they do all the tests and then she is fine for another week. It is definitely crazy. Both my girls are having a very hard time. They can't let her sleep a solid amount of time as the vent needs suctioning and such so they have to keep waking her up - I swear that that gives me a fever!!!
I sure hope that we can stay and move in a forward motion. She is trying so hard and just seems to be hitting these bumps. Carrie is having a terrible time with all of this! Glen went home and Carrie will be sleeping under the sink for the next couple of nights. Terry is talking about going over to relieve her on Friday night so she can go home. We will have to see. Unfortunately my Carrie is having a very rough time in deciding what to do and how to handle it. She needs giant hugs and prayers right now.
I love each of you and appreciate that you read and try to understand my crazy ramblings as I try to make sense of the senseless! We need and appreciate all that you do.
Grammie Jen

Tuesday, January 15, 2013

My sweet pea is hanging in there trying oh so hard to get stronger and better. We were excited that they were going to take her outside, but outside meant outside her room. That is pretty darn good too and we will take it!!!! They are also trying to get it so that she can sit in the doorway of her room and feel a part of the goings on on the floor. I guess the nurses sit across the way and many kids walk down the halls. I guess that would let them keep an eye on her and let her feel like she is part of the world at large!!! You go my little Julia!!!
Tomorrow morning is the big meeting and we hope that some questions and such will be answered by the team. I talked to Carrie for quite a while today and she has a great deal of faith in the team and knows that it will work out. They are bringing out a hematologist to take a look at her blood count having trouble going up. I am glad but hope that it is just that they are just taking too much blood from her. They seem to be still waiting to get permission from Kaiser to do the bronchosopy. Hopefully they will get some answers. They are doing her breathing shaking [this is a vibrating vest they put on her to help keep her lungs clear] at 2 am and they wake her up several times a night when they suction her. I hope that the concerns about disrupting her sleep will be addressed and not just put as a hospital policy which seems to be the answer they get right now.
Carrie and Glen have one last night tonight at the Family House and Carrie was happy to learn that from 10 - 6 she can use their showers and kitchen and such. That is a big relief. They are also hopeful that they can get back in in about a week. I sure hope so!
I hope to be able to tell you about her big "outing" from the room tomorrow! I am sure that she will be thrilled no matter how big or small it may be!
You all are keeping us sane and okay! Thank you so much for all you do for us.
Another little side note, my" baby" brother is having some heart problems and could use a few prayers! Thanks, angels! I love you!
Love and hugs I look forward to giving a great report tomorrow!
Grammie Jen

Monday, January 14, 2013

The Desat Mystery Continues...

My little angel is tricking us again! She started desating on Sunday night after everyone left and she was so very sad! Now she is doing it for no apparent reason.
Every time Glen left the room she would desat. Carrie was with her and she was playing the piano with one foot and messing with the abacus with the other and having a fine time when she desated twice. What the heck!!!
Carrie and Glen will try to enjoy their last night in the family house. They have to leave to give the room to someone else. They hope that they might get in again at a later date. So it is sleeping under the sink again. Bummer!!! I didn't even get to see it! Boo Hoo!

We are trying to come up with questions to put before the doctors on Wednesday morning. If you have any ideas that we may not have thought of let me know. The list is already forming.

I love you all and know you are working hard and we appreciate it. We need to figure out what this desat stuff is about and get back to the great last few days we had. The neat stuff is that the PT is trying to arrange a trip outside for Julia by the end of the week taking a nurse and such so that she can go. I sure hope it can be worked out. She did desat during PT this morning so they have to have all the equipment and staff present to keep her safe. It would be so wonderful for my girl. Lets hope and pray that they can figure out how to make that a possibility.
Grammie Jen

Sunday, January 13, 2013

Another Good Day

My little angel had another good day!!! Yeah!! Carrie said that yesterday was so outstanding that today was good but didn't pass up yesterday! Terry went and was very impressed with our girl. He hadn't seen her in just a little over a week, but said he felt she was definitely improved! Her movement and general alertness and her smile were all bigger and better! He was excited because he got to see three of his girls! He was skunked by Miss Amanda at Shoots and Ladders and got to read a ton of stories to both girls. He says that the family house is quite nice and is so glad that they are getting to use it. Julia had two small desats today, but they were small and quickly under control which is great!!!! She is still considered contagious over the bacteria that is growing in her trach, but I guess it is resistant to antibiotics and they, I guess, can't treat it. Not real sure about this! The thorazine seems to be helping with the desats and that is very very good! So glad that they were able to take out her IV line when they dced [discontinued] the vancomyicin. That was very good!
Carrie has taken Amanda home and will stay until Uncle Vince gets settled in Monday evening. She may go Monday night so that she is there for morning therapy, but still playing it out. Amanda may want her there until Tuesday morning since she will be in Oakland thru the weekend.
I am luckily feeling much better and don't hack my lungs out continuously - just a couple of times an hour. My fever broke and I am hoping I can see my girl at the end of the week. We shall see! I want to be sure I am completely better before I go! Can't afford to give my sweet pea any other nasties!
You are all doing a great job. Keep it up and hopefully I will get Glen to give me lots of great news tomorrow!
Love you all,
Grammie Jen


Saturday, January 12, 2013

My little angel had a very big and happy day! My sources, Carrie and Nona were very up to date! Julia only had one desat this morning and sat with her head up for a couple of minutes! They ended the antibiotic Vancomyicin today as the staph appeared to be a contamination. I am glad that she isn't on the antibiotic if she didn't need it but am still puzzled at her higher WBC and fevers! Strange happenings! They are trying her on a very small dose of an anti-convulsant drug to try and see if that lessens her desats. The theory is that she is having seizures in the brain stem area which are hard to monitor and can't be picked up on the eeg. With only one desat, I am hopeful. It is scary at best, but if it works, wow!
Carole,aka Nona, is holding her and has been with her the whole day. Amanda is having a sleep over and play time with her good friend Audrey. That is nice so that Glen and Carrie can have some time to be together and reconnect and talk without "a little pitcher with big ears". They were able to walk earlier and are out to dinner together and perhaps a movie so they can talk about something other than the hospital goings on! So nice to have Don and Carole there!
Nona says she thinks that the new drug makes her tired but from all the things that Julia was doing today it sounds like she should be tired any way! Carole says that she has learned how to move her feet enough to rock her chair and that she is moving her left hand to her mouth and sticking out her tongue and laughing a lot! Lots of being held sung and read to. An overall great day. Love it!!!!!
You guys are awesome. I know much of this is your work and am so thankful! Keep it up please! I want these steps forward!!!
Can't wait to get my hands and lips on my sweet pea! Am feeling better and the fever didn't show itself today so hopeful the antibiotics are working and that the flu portion are gone! May venture a small outing tomorrow! Pete and I did a very quick run to grocery yesterday and did it in about 10 minutes, I felt very accomplished!
Love you all and so appreciate all you are doing.
Grammie Jen

Friday, January 11, 2013

Sleepy Girl

My dear ones, my little angel had a very sleepy day! They gave her Benadryl to help dry up her secretions a bit and it made her very sleepy. Glen said that she did wake up and he had a really fun time with her and she was very responsive. That was good. She only had 6 desats [when her oxygen levels drop] as of a few minutes ago. Still very scary and they are still trying to unearth the cause. I guess two docs who hadn't seen the entire thing saw it twice tonight and it blew their minds! They had thought that everyone was exaggerating. Now they know how fast and scary it really is. Now a few new ideas are flying. They did an echo, which ruled out a hole in her heart. They are still floating the bronchoscopy and we shall see. She did have therapy and other than desatting during it she had a good workout. 

Last night Don went over to see what was happening and he saw her spike another temp and got them to do a CBC and found that she had a 22,000 WBC. The blood culture was drawn immediately and it is growing staph so they have started her on antibiotics. They are afraid of it getting to the graft in her brain so they wanted the antibiotics right away. Good call. We hope it will go okay. So glad Don was there.
He went home this afternoon but he and Nona will be back tomorrow morning to help with Amanda. She, Don and Glen will go to cousin Conner's basketball game while Nona and Carrie are with Julia. Amanda is not allowed to visit Julia [she is on  "precautions" in case she has anything contagious, which restricts her visitors] so they are trying to find things to keep her busy. She was bummed to not be able to see her sister, but I am sure that Daddy and Grandpa will do fine with the help of the cousins! Nona has promised to give multiple kisses for me! 

I am on the mend I do believe! I will probably get a flu shot even though we think I had a form of it, but it can protect me against some others. Get your shots!!!! Stay healthy! We need you!!!
We need to work on this desat thing strongly and clear up this infection and wipe it out for good!! I know you can do it! 

Love to all and will update after I talk to Nona and Carrie tomorrow!
Grammie Jen

Grammie Update

My dear ones, Julia is trying so hard to do her best! She works hard at her therapies, but has a bit of a hampering as she is having so much trouble with her desating. She is being quite a mystery to the docs. She goes from 100% Oxygen to turning blue and passing out in less than 30secs. It is happening much too often and is extremely scary and oh so exhausting for my little one. I think we need to work on them finding out and fixing what is going on with my girl!
The doc told them that he thinks that maybe she is seeing some things and sometimes she doesn't. It may be that she can decipher that which is the most familiar. So Carrie and Amanda are packing up her most favorite things to bring to show her and see what happens. They are planning to go on Friday night. We are hoping Julia will be off restriction and Amanda can see her.
Amanda is having a much harder time now than before. I think that she is really fried at all that has been happening. Hopefully it will bet better soon. I know my angel will get there!
Overall my girl is definitely progressing, just these pesky roadblocks that need to be circumvented! I am anxious to hear how the speech therapy is going as that will be very interesting. They are going to be having a family meeting on Wednesday and that will give them hopefully some answers and such. I wish I could go, but the doc said that I need to stay away until my bronchitis is totally gone! My flu is on the wane and I just need to get the chest to be better. Makes me feel like a welsher when my little one is going through so much harder stuff!!!
So our job is to figure out what is going on with her desating and how to remedy it. I am sure that we can do it. You are the best! Thanks for taking on this new assignment. I can't wait to report our conquest of it!
Love you all
Grammie Jen

Wednesday, January 9, 2013

Making Friends

Miss Julia started therapy today and she is one tired girl! She is working hard both in therapy and on making steps towards weaning from the ventilator. Currently they are working on reducing the level of oxygen she is receiving. She, Carrie and Glen love the therapists and the doctors they are working with--and of course the staff love Julia as well. Keep up the great work, Julia, we're all pulling for you!

Tuesday, January 8, 2013

Back in Rehab

After a couple of nights in the very busy PICU at CHO, Julia is now back on the rehab floor.They have been working to make sure she is keeping her oxygen levels nice and high. They had lowered the settings on her ventilator, but she was having frequent drops in her oxygen levels, and staying well oxygenated is important for healing from brain trauma. Her settings have been increased again, and she is doing better. Carrie had a great meeting with one of the head Rehab doctors, who gave a good explanation of the plan for managing the ventilator. She will need to be weaned from some of the vent settings before she can leave the room, but in the meantime, the Physical, Speech and Occupational Therapists will come to her, and Julia is very pleased to show them her new ability to stick her tongue out on command--no small accomplishment!

Julia has been understandably a bit agitated the last couple of days, but since it is so much more peaceful in her new room, hopefully she and Carrie can get some better rest. Carrie is sleeping with Julia tonight, and tomorrow she and Glen will both be there for a few hours before Carrie heads up to Santa Rosa to spend the rest of the week with Amanda. Grandpa Don and Nona will be coming to visit this weekend. Grammie is missing her girls, but is laid up with a nasty virus-please send your healing thoughts her way, too!



Monday, January 7, 2013

Grammie Update

My dear ones, it was a good day with some exciting twists! Carrie has been given a room at the house like Ronald MacDonald [called the Family House at CHO]. She was told that she didn't qualify but today was told that she was in! Wow! She has a bedroom in the house right next to the hospital that has 2 queen size beds which is like a hotel room just with no bathroom in it. She is ecstatic! She is so glad since she won't be allowed to sleep in with Julia as the icu has filled up with very sick little kiddos - very sad - she said that several were air lifted in and are quite serious. 4 are also intubated and on respirators, no trach but intubated. So very sad. She also gets a parking space that is free which is huge as it is 7.50 a day in the parking garage. That is a big deal. They have breakfast and do have a nice kitchen etc. Wow, that is Carrie's good fortune and Julia had a good day and they found out that if she hadn't transferred yesterday there would have been no transfer today. WHEW! The rehab doctor was very pleased with the progress that Julia had made over the last month in Kaiser. They were excited and are looking forward to much forward progress! Keep up the good work my angels. You are awesome and we know that you all had a great deal to do with these good things. I am so happy that we may make faster progress and only hope it is true. 

I hope Carrie gets a decent night sleep. They have security walk you over to the house if it is dark. Nice! I don't know how late she will stay, as her phone is dying and her charger went home with Glen. Not the best idea! They will work it out. Carrie was saying that if Amanda continues to have such a hard time they might take her out of school for a day and let her stay with them in the house. The nice thing is that I can stay there also if I am there. That would be nice. Now I just have to get over this virus that I am fighting so that I can go over. I was hoping to go on Thursday, but that is looking a bit doubtful. I so miss my girls and want to kiss my little one's toes and just hug my big one.
Keep up the good work - we will have her swallowing yet and breathing regularly.
I love each of you.
Grammie Jen

Sunday, January 6, 2013

Back at CHO

My angel is now at Children's of Oakland. It was an easy transfer, but the sad thing is that she got so excited when everyone was saying goodbye. She thought that she was going home! Carrie said she was excited until they put her in the ICU at Children's and she just started crying. Carrie said it was so very sad! But we know that it will be good as time passes. She is in a regular bed and hopefully she will move to the rehab room by Tuesday. Carrie said the ICU is smaller than Kaiser which is hard to believe but she will be allowed to stay in the room with Julia. Carrie said that she or Glen will be with her from now on. Glen is taking Amanda home now and Carrie will switch with him on Wednesday. They will be tag teaming for a bit.

I am missing my sweet pea and wish I could hold her and kiss her toes, but am not sure that that would make it much better. I am home for the first half of the week at the least and am not sure when I will go as I feel that I am catching the dreaded cold as I have been a bit full and feel so very tired. Hopefully it will pass quickly and I can go at the end of the week as I planned. I know she will be doing good things there soon.
I hope that they will be able to lessen her time on the ventilator and she will be a little bit free. I hope that that happens quickly! Thanks for the swallowing prayers and the transfer prayers worked so far! Good work!
Love you all and look forward to a good nights report tomorrow and excellent start to therapy.
Grammie Jen

Saturday, January 5, 2013

Transferring tomorrow

It looks like Julia is scheduled for her transfer to Children's tomorrow! Grammie spent yesterday with her, and she had a great day for the most part. Grammie says:  "she worked so hard during therapy! It was fun to see her working hard at the tasks and being successful . She and I read books and practiced kicking and I do believe she can see, and I could swear she tried to cough and swallow! She is trying! You are great in your help! We will get there! I was so late because when Carrie, Glen and Amanda came and then left for Art's for dinner she spiked a fever of 102 and her heart rate was up in the high 170-190s not good!!! They ordered and did lots of cultures and bugged her a ton! When they were done I asked her to kick her feet if she wanted me to hold her! She about knocked the bed over! I held her until Glen came back and took over, it was tough leaving!"

Today Julia was fever free and all the cultures they did yesterday were negative. She got to ride in a special wheelchair for just a few feet around her bed, which she loved. Nona and Grandpa Don are visiting this weekend, so she had lots of grandparent snuggles today and Carrie and Glen will have extra help for transfer day tomorrow.  

Wishing everyone a wonderful night, 


Thursday, January 3, 2013

Mixed day

Julia had a good morning but a rough afternoon, including some major oxygen desats. She found some smiles again by the end of the day, though--what a strong girl she is.

Wednesday, January 2, 2013

Big Smiles

Julia had some big smiles today--look at this gorgeous, radiant girl! She had a great day spending time with both her Grammie and her Nona.  Grammie reports:
What a wonderful day!!! I arrived in Oakland and Nona was just getting ready to hold Julia. Since she was leaving this afternoon i didn't try to wrestle her! Julia was a tired girl from her morning work! She got a good hour sleep and Nona and I protected her from all stuff. We only got an hour before the barrage began again! She did great and I got to sing kiss and read! She smiled and we had teeth showing many times! It was awesome. Carrie, Glen and Amanda came around 5. I guess they were going down as I came up at noon! They were sad to miss Nona when she had left but she was hoping to be ahead of traffic!
Julia had good pt and practiced sitting up. Unfortunately her ng was in the stomach and they want it lower so they took it out and it was still wrong so they did it again - good grief! They are x-raying it again and now they aren't transferring til Sunday - major bummer!
But the good news is the hives were gone and came back during each procedure but then were gone again! Crazy but no fever and dropping WBC, the hemoglobin was also wrong so no transfusion was needed!
The great thing was how much smiling and joy she showed with me! That's my sweet pea!
We are trying to get her to sleep and we will go to Art's for the night. It will be her 2nd night with just the staff which is working because there really isn't room for Carrie!
She is trying to swallow I just know! Keep those prayers coming! We need and love them! You are the best support team ever!!!'
Sleep well and stay warm!
Grammie Jen
With lots of company for Julia, Carrie, Glen and Amanda were able to be together away from the hospital, and had a much-needed and appreciated excursion to a playground where Amanda found some other kids to play with and had a great time on her new scooter. 

As Grammie mentioned, Julia's transfer to CHO (Children's Hospital Oakland) has now been pushed back to Sunday, purely for logistical reasons. It's frustrating to have further delays, but she will continue to get PT and OT while at Kaiser, and will be able to move right into services at CHO on Monday if all goes according to plan. In the meantime, Carrie, Glen and the rest of the family are keeping Julia busy with therapy games, stories, massages and of course lots of love and cuddles.

Wishing everyone warmth on this cold evening, 


P.S. For anyone who is interested in doing  a meal for the Kings, there is now a Meal Train site to coordinate dinners:

P.P.S. And one more thing! The Kings will need to buy a minivan or some type of larger car for when Julia is able to come home. She will need a special car seat, which will not fit in their sedan. If anyone hears of a great deal or has a connection that might help them find the car they need at a reasonable price, please let them or me know.

Tuesday, January 1, 2013

New Year's Day

Well my little one finally managed a smile for Nona today. She has been having a rough go! She is still getting the hives off and on and seems to be very agitated. I told Carrie she is probably sad and just wants to start to do things. She will be moved on Thursday to Children's, we think. It has been hard as so many docs are gone and everyone seems to be in the holiday mode! I hope she gets to move and things start to move soon. I am going over tomorrow and will see her and give as many kisses to my girls as possible! I think that they all need kisses. Each and every one! Amanda is ready to be home and have a schedule. I think that Julia would like one too. It is hard for all of us with no schedule!
Julia has no fever, and her WBC is a bit lower but she needs another blood transfusion. They don't know why she keeps needing them at this point and think that the ng tube is irritating her throat and such and she may be bleeding there. Bummer city! I don't know why I feel that things will be better when the Grammies are there, but for some strange reason I do - I guess just better because we will be seeing them!
Love you all and hope you had a great first day of 2013. It was a very brisk but beautiful day here and we are supposed to be dry until Sat. just a bit chilly. Love it!!!
I will try to post after I see my sweet pea tomorrow afternoon.
Love to you all.
Grammie Jen
 And a quick update from my visit with Miss Julia.  Things were quiet in the PICU (words I've been told by the nurses to never speak aloud) and we were all able to hang out in Julia's room with her. Oliver and Finn loved getting to visit with her. Oliver told everyone we saw, from the security guard to the nurses that he is "almost Julia's brother."  She has grown so much, even just in the last couple of weeks since I saw her last! She is getting stronger, too, and more control over where her eyes track. Carrie helped her to sit up with her legs dangling over the edge of her bed, and she was working so hard to hold herself upright. More than anything, she loves to be held by her mom and dad. She is working so incredibly hard all the time, and in their arms she sleeps deeply and peacefully. 
Wishing everyone a wonderful 2013. Thank you for your incredible support of Julia and her family. 


Happy new years my dear ones! I hope you are having a lovely evening and will have a nice day to start off 2013! My sweet pea still has hives and no fever but an elevated wbc. They took her off antibiotics to see if the infection will tell them where it is! Crazy stuff! They are hoping to transfer her Thursday and I hope it goes well. Nona is going tomorrow and will stay til Wednesday when I arrive and then she and Don will return for the weekend. I will go see my mom and then back to Folsom for a few days! I have missed my girls and look forward to seeing them. Francesca and crew are there today and tomorrow so that is wonderful!
Grammie Jen

Oliver and Amanda having a New Years Eve Sleepover: