I have had a lot of suggestions and questions in the comments, and wanted to answer some that are pretty general in a post entry.
As for Gabriella's stubborness... try to give her activities she won't be able
to resist. You can probably talk to the therapist about it... things such as
time with the therapy dog, swimming, think of some "silly" exercise she likes to
engage in normally. Her therapist should have plenty of ideas as her behavior is
not uncommon. Gabriella having this stubborn behavior is just a way for her to
have some control since she has lost so much control in other areas.
We spend a lot of time with the therapy dogs... she responds so well to them! We have so many resources available like daily crafts and the playroom and outside garden and now that we are no longer in PICU, we plan on utilizing every one of them.
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I don't know what you have tried, but I wanted to offer a suggestion just in case. Have you tried flash cards with words and pictures to help her communicate to you? I once saw something that looked like a Quija board that had letters and some daily words for communicating. Someone in the Hospital must know about that.Getting out game boards and playing games ( chinese checkers, candyland are lots of fun if her arm is mobile) and reading happy stories to her sound like they might boost her morale, so she won't sleep so much.
We had a board they gave us with a ton of pictures for her to point to and communicate with us. Anyone that knows Gabriella knows she is a strong-willed intelligent little girl. That being said- she was MORE frustrated with the pictures than she was with just having us 'figure it out'. We we go the route of questions, pointing and basic signs. Unfortunately, she doesn't know how to spell yet, so we have that barrier... but we are doing well filling her needs. We have had games in our room, but she prefers us reading stories or doing puzzles so we try and do those. Sleeping today has been minimal, and I firmly believe it is the change in atmosphere and therapy thats helping! SO grateful for that!
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...maybe letting her choose as much as she can would help bring her out of her shell. You could ask her to point where she wants to go next in the wheelchair, or have her decide between doing arm exercises or leg exercises. Ask her if she wants to paint or play dolls--anything to make her feel like she has control over herself again. Pretty much every activity can be framed as a choice.
Life in PICU was much different than here in Rehab. All the things mentioned we are now able to do, but over there we couldn't go anywhere or do very much. We did paint quite a bit and played with Barbies, so we had those bases covered. But back to the original idea, yes... we let her choose EVERYTHING. Aside from medical treatment, she has had a say in everything. I have made it a priority to let her be as comfortable as possible, and for Gabriella thats bossing people around. But we have been and will continue to make everything a choice. Hehehehe
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I was on Lovenox for my last 2 pg have lots of great tips if you need them.
Fortunately, she has a small port in her tummy for the injections. Rather than 14 shots in one week, we have one port placed per week. AND because we know when the port needs to be placed, we can numb the area prior to insertion. It reduces bruising, and stress.... which she has had more than enough of!
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Hi Kristi, I don't even know if you read these comments
Every single one of them, and for every encouraging and loving word or prayer, I am indebted to! Thank you to everyone on behalf of Gabriella, Paul, PJ, myself and my entire family!
Thursday, October 1, 2009
Wednesday, September 30, 2009
Oh my.
Well, this is going to be hard. Gabriella is completely shutting down. She is angry, and getting hostile with people. She is sad, and has that trapped look in her eyes. She is frustrated and her body shows it. She chooses to pretend she's sleeping to get out of seeing doctors or therapists. She is allowing herself to sleep constantly when I know she wants to be awake and do things. She holds her smiles back when she wants to smile. She refuses to do some of her most favorite things.
Our battle right now is not to get her words back, or the function in her arm. It's to reinstate that strong will she has to achieve things. I firmly believe if she can find that desire to get better, therapy will be a million times more effective.
We explained to her it is ok to be angry and sad and scared. But it is also ok to be happy and play, too. Goodness, if I couldn't talk to anyone and communicate, I'd do exactly what she's doing. But I also hope someone would be with me to keep me going in the right direction, which is why I will never give up on her or leave her side.
We talked about tomorrow and she agreed to work hard for her teachers and get out of bed. We told her we weren't here forever and they just want to help her. Pleeeease pray. Though we stay strong for her, it is harder than anything else on us to see her shutting everyone out.
We are moved to Rehab. It is very difficult for us. I can tell it is going to be the hardest few weeks here. Rooms are tiny and shared with two people and the bathroom is shared with 4 patients. We pray we get a roommate that's quiet and loving as our last one went home. It smells like hospital, gross and stale. The kids here are difficult to see because they are all suffering. We feel crammed and trapped. Its going to be hard. I've already broken down a couple of times. But its necessary and something we will do for Gabriella to get her back on track. She's scared in this room so we will do everything possible to get her out and about.
Therapy starts tomorrow. I'm excited for the routine, and that we are required to leave the room. Gabriella needs to be forced to leave her bed.
Please, God, let the healing be fast and thorough. We want to take our baby home.
A beautiful day!
Gabriella tolerated being weaned off the Dopamine and she has been off the drip for over 12 hours now!! Last night they removed her Arterial Line in her arm, and so the only tubes she has is the O2 Sat/ ET finger and, her IV line in her hand and her central line in her groin!
She slept good last night. NO throwing up, so I was grateful the 2oz of Apple juice and few bites of apple sauce kept down! Shes having '#2' issues, but her little system was so empty I'm hoping the new foods will help with that.
Because she is off the Dopamine, we have more freedom with PT and OT, and we can take her around the hospitals in her 'princess chariot' (wheelchair). Given they can get her a room, we will be moving to the inpatient rehab wing today!!!!!!! I am SO excited! Like the nurse said this morning, we are leaving the sick wing to go to the get better wing. I feel we have maxed out in the PICU, and they have done absolutely AMAZING. She is ready for the next step, and I think starting a new goal will only be best for Gabriella. She is so driven and strong-willed that I think it will perk her up to maybe see some other kids and be in a different environment.
We have had the most amazing nurses ever created in the world of pediatric intensive care, and I will argue if anyone tells me otherwise. ;) I will never in my whole life forget our day nurses Becky and Jodi, and our energetic night nurse Bree. Their passion, sensitivity and genuine love for my Gabriella has been more comforting than any other medical treatment can offer. You could tell Gabriella trusted them, and we cannot WAIT to bring her back in here showing off her smiles and moves and hopefully words!!! Not only were our assigned nurses fantastic, but all of the nurses who answered call lights or beeping machines
The day is to beautiful to explain the heart transplant journey, as I had planned on doing. So I will post that another time. Just know it is something we have faith God will provide the means and stability for, and it is not out of the future plans as of yet.
Keep the prayers coming. Don't give up on them. God has his hand on Gabriella, and she is proving to everyone in her life what a true fighter and survivor is. She is giving us a strength incomparable to anything I could imagine. She's teaching us to be better people.
She slept good last night. NO throwing up, so I was grateful the 2oz of Apple juice and few bites of apple sauce kept down! Shes having '#2' issues, but her little system was so empty I'm hoping the new foods will help with that.
Because she is off the Dopamine, we have more freedom with PT and OT, and we can take her around the hospitals in her 'princess chariot' (wheelchair). Given they can get her a room, we will be moving to the inpatient rehab wing today!!!!!!! I am SO excited! Like the nurse said this morning, we are leaving the sick wing to go to the get better wing. I feel we have maxed out in the PICU, and they have done absolutely AMAZING. She is ready for the next step, and I think starting a new goal will only be best for Gabriella. She is so driven and strong-willed that I think it will perk her up to maybe see some other kids and be in a different environment.
We have had the most amazing nurses ever created in the world of pediatric intensive care, and I will argue if anyone tells me otherwise. ;) I will never in my whole life forget our day nurses Becky and Jodi, and our energetic night nurse Bree. Their passion, sensitivity and genuine love for my Gabriella has been more comforting than any other medical treatment can offer. You could tell Gabriella trusted them, and we cannot WAIT to bring her back in here showing off her smiles and moves and hopefully words!!! Not only were our assigned nurses fantastic, but all of the nurses who answered call lights or beeping machines
The day is to beautiful to explain the heart transplant journey, as I had planned on doing. So I will post that another time. Just know it is something we have faith God will provide the means and stability for, and it is not out of the future plans as of yet.
Keep the prayers coming. Don't give up on them. God has his hand on Gabriella, and she is proving to everyone in her life what a true fighter and survivor is. She is giving us a strength incomparable to anything I could imagine. She's teaching us to be better people.
Tuesday, September 29, 2009
A little more for Tuesday
A friend pointed out a few things I might not have mentioned but are important! Its so hard to hit every factor because there's sooo much going on! So if I've mentioned them I'm sorry, and if I haven't then here you go! I'm going to mobile update so can't look back to see what I put. Call me lazy, or sleep deprived.
Gabriella threw up monday night and her NG tube came with it, so they removed it. They also removed her oxygen today so she is tube free! Thank goodness!!
They started lovinox (sp?) in lieu of the Asprin last night. It is a bit stronger than the Aspirin and will be a twice a day injection for the next 6 months. They have a port in her belly to give the injection and the port lasts 7 days, so that's 14 less injections than she needs. She seems to be doing well, and this will not only help with the existing clot, but prevent further ones from forming.
And tonight after I updated, they completely turned off her Dopamine! Given she can maintain her bp tonight we might be at rehab by tomorrow!!! Praise God!
Gabriella threw up monday night and her NG tube came with it, so they removed it. They also removed her oxygen today so she is tube free! Thank goodness!!
They started lovinox (sp?) in lieu of the Asprin last night. It is a bit stronger than the Aspirin and will be a twice a day injection for the next 6 months. They have a port in her belly to give the injection and the port lasts 7 days, so that's 14 less injections than she needs. She seems to be doing well, and this will not only help with the existing clot, but prevent further ones from forming.
And tonight after I updated, they completely turned off her Dopamine! Given she can maintain her bp tonight we might be at rehab by tomorrow!!! Praise God!
Tuesday update
Today has been low key, but monumental yet again! She has slept most of the day, only to wake for a few things. Her body is resting and hopefully healing. It was scary for the first few hours because she was almost unarousable, and she has been the same all day, but when she is awake she acts appropriately so there is no concern of a complication. Just rest and healing.
I left for an hour or so today to do some laundry and shower at our new room at the RMH. Amazingly enough, we got the Mickey Mouse room that looks like a room at the Disneyland Hotel! It is AMAZING. Though it was hard going in and knowing Gabriella couldn't see it, I plan on taking tons of pictures for her. PLEASE call your local RMH and see how you can help. Stocking cabinets, donating unused but good condition household items, etc. They are a blessing to families like ours and I don't know what we'd do without them!!!
They lowered her Dopamine to 3 from 5... that much closer to being off of it! Once she is off of it, we move to rehab and start the building process!!!!
She woke for Elmo who came to visit her in honor of Sesame Street's birthday! She was semi-amused with the silly looking Elmo. She also (kinda) woke for a bath and to wash her hair. She slept through most of it, but it had to feel go to be clean. I got to sit in a chair and hold my baby.
The therapy dog came to visit as well, and Gabriella perked up.
We had Physical Therapy, also. And it was fantastic! She has no concerns with her walking. She will be great once we work some of those muscles. Her arm has some base muscle reactions, which we are going to immediately start strengthening. She has some purposeful movement and muscle flexing, so I am beyond thankful for that!!! she did a puzzle and practiced some movements. She got tired awfully quickly, but it was a profitable 10 minutes of rehab!!!
And the best part is we got her a chair!!! Once she is off her Dopamine, we can take her for rides. It also gives her somewhere safe to sit while not in her bed- and to me thats huge. I hate that shes laying in a bed all day.
And a funny part of the day.... she was asleep and looked up at me suddenly. She kept pointing to her table. I quizzed her as to what she wanted and discovered she wanted to paint. I guess when the artistic bug hits you, you must act! She painted for a few minutes and went back to sleep.
I left for an hour or so today to do some laundry and shower at our new room at the RMH. Amazingly enough, we got the Mickey Mouse room that looks like a room at the Disneyland Hotel! It is AMAZING. Though it was hard going in and knowing Gabriella couldn't see it, I plan on taking tons of pictures for her. PLEASE call your local RMH and see how you can help. Stocking cabinets, donating unused but good condition household items, etc. They are a blessing to families like ours and I don't know what we'd do without them!!!
They lowered her Dopamine to 3 from 5... that much closer to being off of it! Once she is off of it, we move to rehab and start the building process!!!!
She woke for Elmo who came to visit her in honor of Sesame Street's birthday! She was semi-amused with the silly looking Elmo. She also (kinda) woke for a bath and to wash her hair. She slept through most of it, but it had to feel go to be clean. I got to sit in a chair and hold my baby.
The therapy dog came to visit as well, and Gabriella perked up.
We had Physical Therapy, also. And it was fantastic! She has no concerns with her walking. She will be great once we work some of those muscles. Her arm has some base muscle reactions, which we are going to immediately start strengthening. She has some purposeful movement and muscle flexing, so I am beyond thankful for that!!! she did a puzzle and practiced some movements. She got tired awfully quickly, but it was a profitable 10 minutes of rehab!!!
And the best part is we got her a chair!!! Once she is off her Dopamine, we can take her for rides. It also gives her somewhere safe to sit while not in her bed- and to me thats huge. I hate that shes laying in a bed all day.
And a funny part of the day.... she was asleep and looked up at me suddenly. She kept pointing to her table. I quizzed her as to what she wanted and discovered she wanted to paint. I guess when the artistic bug hits you, you must act! She painted for a few minutes and went back to sleep.
Monday, September 28, 2009
Monday evening update
I am sitting in a dark and quiet room at 920pm, and Gabriella has been in a super deep sleep for about 3 hours. She has always been a heavy breather and is doing it right now as she gets some much needed deep rest.
Physical therapy was interesting, for sure. She was awfully angry at the therapists, because she was still so tired from the morning and didn't want to exert her energy. They eventually got her to sit on the edge of her bed for a moment. She was frustrated and mad. They got her onto the bedside potty and she tried to go. When they got her up, they had her stand. Gabriella, being her strong-willed and sassy self, walked herself with minimal assistance to the bedside. She wanted back into bed so much she got herself there! Praise God for leg strength!
The therapist said first things first, she wanted the arm board off her right arm. I was totally in agreement.... if her movement is going to come back at all, it won't happen strapped to a board. The nurse got it off this evening, and it is great to see her little "lazy arm" free.
The in-patient rehab doctor came by to qualify Gabriella for therapy once we are out of PICU. Gabriella must have had a crush on him, because she was smiling and showing off her little talents. HE made her happy, and she responded well to him. I hope he comes in daily!
The swallow test was easy peasy. When we went into the room she smiled and nodded her head. I knew immediately that it mean "I've been in a (x-ray) room like this before! I know this isn't bad". She sat in this chair, as I fed her multiple consistencies of fluids. The real-time X-ray took a picture of where the fluids were going once swallowed. Thinner liquid was going to her windpipe area before making it to her esophagus, but thickened fluid went the right way. They are going to start her on a pureed diet soon, and slowly work on soft foods. Once the muscles regain some strength, we will work on thinner fluids. And hopefully stronger mouth muscles mean some return of some speech or expression. I so desperately want to hear her voice. And I want to hear EVERYTHING she has to say about what has happened the past few days.
We are mastering the art of communication. It is much like a newborn baby, in that I need to read her signs and habits to know what she needs. We are using simple signs for nausea, potty and more. I am also able to understand what she needs or wants based on how she was pre-stroke. It is simple to figure out what she is thinking, and we try to enforce that we acknowledge when she is mad or upset or frustrated, so she doesn't feel she is alone in her feelings since she can't express them. Tonight we caught her staring at a picture of all her little cousins. We asked her if she missed them, and she nodded yes. It was a hard realization for her this evening, but she will be back with them in no time. And I know for a fact they will love on her and be patient with her new way of play.
So as I said, she is sleeping deep. We just took her potty and she is back in bed, not missing a beat of sleep. We got checked into the on-campus RMH so we will be utilizing that. Paul will sleep there, and on occasional nights someone will come and bring PJ to sleep there also. I will shower there and maybe nap on a slow day..... but most likely not. Who am I kidding? I hate leaving her side to use the bathroom or grab some water.
Although I have nothing to complain about compared to the complaints Gabriella must have, this PICU room is freezing. During the day it is around 69 but I swear at night it is 60. We are going to watch the temp gauge tonight to see what it drops to. We have mastered the art of wrapping ourselves in blankets like burritos just to keep warm! Just had to whine a bit... but its cold. So someone smack me for always complaining about how hot Arizona is. Hahaha
Praying for a not-so-busy but just-as-productive day tomorrow!!!!!
Physical therapy was interesting, for sure. She was awfully angry at the therapists, because she was still so tired from the morning and didn't want to exert her energy. They eventually got her to sit on the edge of her bed for a moment. She was frustrated and mad. They got her onto the bedside potty and she tried to go. When they got her up, they had her stand. Gabriella, being her strong-willed and sassy self, walked herself with minimal assistance to the bedside. She wanted back into bed so much she got herself there! Praise God for leg strength!
The therapist said first things first, she wanted the arm board off her right arm. I was totally in agreement.... if her movement is going to come back at all, it won't happen strapped to a board. The nurse got it off this evening, and it is great to see her little "lazy arm" free.
The in-patient rehab doctor came by to qualify Gabriella for therapy once we are out of PICU. Gabriella must have had a crush on him, because she was smiling and showing off her little talents. HE made her happy, and she responded well to him. I hope he comes in daily!
The swallow test was easy peasy. When we went into the room she smiled and nodded her head. I knew immediately that it mean "I've been in a (x-ray) room like this before! I know this isn't bad". She sat in this chair, as I fed her multiple consistencies of fluids. The real-time X-ray took a picture of where the fluids were going once swallowed. Thinner liquid was going to her windpipe area before making it to her esophagus, but thickened fluid went the right way. They are going to start her on a pureed diet soon, and slowly work on soft foods. Once the muscles regain some strength, we will work on thinner fluids. And hopefully stronger mouth muscles mean some return of some speech or expression. I so desperately want to hear her voice. And I want to hear EVERYTHING she has to say about what has happened the past few days.
We are mastering the art of communication. It is much like a newborn baby, in that I need to read her signs and habits to know what she needs. We are using simple signs for nausea, potty and more. I am also able to understand what she needs or wants based on how she was pre-stroke. It is simple to figure out what she is thinking, and we try to enforce that we acknowledge when she is mad or upset or frustrated, so she doesn't feel she is alone in her feelings since she can't express them. Tonight we caught her staring at a picture of all her little cousins. We asked her if she missed them, and she nodded yes. It was a hard realization for her this evening, but she will be back with them in no time. And I know for a fact they will love on her and be patient with her new way of play.
So as I said, she is sleeping deep. We just took her potty and she is back in bed, not missing a beat of sleep. We got checked into the on-campus RMH so we will be utilizing that. Paul will sleep there, and on occasional nights someone will come and bring PJ to sleep there also. I will shower there and maybe nap on a slow day..... but most likely not. Who am I kidding? I hate leaving her side to use the bathroom or grab some water.
Although I have nothing to complain about compared to the complaints Gabriella must have, this PICU room is freezing. During the day it is around 69 but I swear at night it is 60. We are going to watch the temp gauge tonight to see what it drops to. We have mastered the art of wrapping ourselves in blankets like burritos just to keep warm! Just had to whine a bit... but its cold. So someone smack me for always complaining about how hot Arizona is. Hahaha
Praying for a not-so-busy but just-as-productive day tomorrow!!!!!
Monday midday
I cannot let this day go any further without updating, because I left a lot of people in the dark all day! Paul ran to the RMH to wash off the hospital stink and try to get us into the House on campus of the hospital rather than the one a couple miles away.
Gabriella lost 250cc's of feeds early this morning so they stopped her food for a while. She woke up to doctors and rounds at about 630a, but was not ready for the day yet. Regardless, we had to start.
Being Monday, a lot of things were scheduled and we got rolling quickly. Speech therapy came in to do swallow and food evaluations. She got to eat some applesauce, drink some apple juice and eat a cracker. She didn't do as well with the cracker, because moving it around with her tongue was difficult. The applesauce was perfect consistency for her. The juice went well, and she even drank through a straw, but had a few difficult times swallowing. They are going to do a Barium Swallow test today at 3pm to make sure she is able to swallow in full. I'm hoping we can get this Ng tube out soon and her her on some foods by mouth. I firmly feel that will help strengthen her mouth when she is forced to use it. A great sign was afterwards, she had cracker stuck in her teeth and when I went to brush it out, she opened SUPER wide! It was controlled too, because she did it twice for me. Praise God for little mountains and changes.
We went down right after for a CT scan. The Hematologist just came in to tell me that there was no signs of bleeding at the stroke site and only the slightest of swelling. I asked her the risks of it developing at this point, and she said it normally develops in the first 72 hours, which we are at now! PRAISE God for no additional complications.
When we got back, she was exhausted. She threw up again, and we got her changed and snuggled into bed. Shes been asleep since then, and is recharging her little body. Physical Therapy is coming by at 130p, so with a combination of that and the swallow test, she should be a pretty tired girl this evening.
Please note if you come to visit that the RSV rules are in effect and children under 12 are not allowed, along with anyone with any cooties. If she is sleeping, we do let her rest, but this beautiful hospital has some excellent waiting areas.
Gabriella lost 250cc's of feeds early this morning so they stopped her food for a while. She woke up to doctors and rounds at about 630a, but was not ready for the day yet. Regardless, we had to start.
Being Monday, a lot of things were scheduled and we got rolling quickly. Speech therapy came in to do swallow and food evaluations. She got to eat some applesauce, drink some apple juice and eat a cracker. She didn't do as well with the cracker, because moving it around with her tongue was difficult. The applesauce was perfect consistency for her. The juice went well, and she even drank through a straw, but had a few difficult times swallowing. They are going to do a Barium Swallow test today at 3pm to make sure she is able to swallow in full. I'm hoping we can get this Ng tube out soon and her her on some foods by mouth. I firmly feel that will help strengthen her mouth when she is forced to use it. A great sign was afterwards, she had cracker stuck in her teeth and when I went to brush it out, she opened SUPER wide! It was controlled too, because she did it twice for me. Praise God for little mountains and changes.
We went down right after for a CT scan. The Hematologist just came in to tell me that there was no signs of bleeding at the stroke site and only the slightest of swelling. I asked her the risks of it developing at this point, and she said it normally develops in the first 72 hours, which we are at now! PRAISE God for no additional complications.
When we got back, she was exhausted. She threw up again, and we got her changed and snuggled into bed. Shes been asleep since then, and is recharging her little body. Physical Therapy is coming by at 130p, so with a combination of that and the swallow test, she should be a pretty tired girl this evening.
Please note if you come to visit that the RSV rules are in effect and children under 12 are not allowed, along with anyone with any cooties. If she is sleeping, we do let her rest, but this beautiful hospital has some excellent waiting areas.
Sunday, September 27, 2009
A couple pictures from today...
PJ wanted some chicken nuggets
A smile for the hand puppet cow
The biggest smile yet, and caught on camera by Teresa.... thank you Teresa! Notice, it is smiles on the right side????? :)
A smile for the hand puppet cow
The biggest smile yet, and caught on camera by Teresa.... thank you Teresa! Notice, it is smiles on the right side????? :)
Want to see her impact in a few numbers?
These are people going right to my blog... not including all of those who already follow her in a blog reader.....
Blog hits Friday 9/25:
2088 visits, 1691 first time visitors and 3241 pages viewed
Blog hits Saturday 9/26:
2174 visits, 1479 first time visitors and 3333 pages viewed
Blog hits Sunday 9/27:
1534 visits, 950 first time visitors and 2172 pages viewed
Her Facebook group has 131 new members.
The lives she has touched or been a part of their prayers: countless.
Blog hits Friday 9/25:
2088 visits, 1691 first time visitors and 3241 pages viewed
Blog hits Saturday 9/26:
2174 visits, 1479 first time visitors and 3333 pages viewed
Blog hits Sunday 9/27:
1534 visits, 950 first time visitors and 2172 pages viewed
Her Facebook group has 131 new members.
The lives she has touched or been a part of their prayers: countless.
Sunday update
Started at 210pm: Saturday night was peaceful for the most part. They increased her NG feedings twice. When they got to 15cc's, she threw up about an hour in so we reduced it. We (my requests and the intensivists agreeing) decided today to keep Zofran going around the clock as we push her feedings.
Her throat is very irritated due to the NG tube and intibation. They gave her some Tylenol to help with that. She is spitting her saliva instead of swallowing it because it hurts so bad, so I'm hoping she can get over that pain, poor princess.
Gabriella is getting depressed, so please pray for her spirits. She is a fighter, no doubt.... but she is already tired of the lack of communication and being in bed. She asks to get up to the bedside potty every time she wakes, and we take her. It is nice to get her muscles moving- or at least it makes me feel better.
There really isn't a hardcore or long term plan for this week. It is more a series of short term possibilities and baby steps. Tomorrow she will have a CT Scan done to look for bleeding. If all is clear, she will start a new and stronger anticoagulant Tuesday. This new one is injection, which Gabriella will HATE, and will last 3-6 months. They mentioned 'installing' a port into her leg that we can inject it through but I have yet to find out more about it tomorrow. Hopefully speech therapy will start tomorrow and we can get this swallow function evaluated. I would love to get her mouth moving and functioning with them.
Whether this clot breaks down or not, her function and speech will take work to regain. That area was damaged and it cannot just reverse. But with the reassignment of speech and movement I spoke about yesterday we can help her regain the lost abilities through therapy.
I left for a couple hours today to shower at the Ronald McDonald house, do some laundry and see PJ. My sister met me up there with him. He was so precious, rubbing my leg and arm and laying his head on me. He was full of energy, but as much as it was fantastic and fuel for my heart to be with my boy, it was equally as hard to think of what was and what now is. To see him running and playing and talking, knowing Gabriella can do none of that, was extremely difficult. But I was able to love on him and make him lunch and spend some short but quality time with him.
1030pm: We had lots of visitors so I am picking up this update where I left off. After I got back from the RMH and sent Paul to play with PJ, Gabriella started to get a slow flow of visitors. She was adorned with gifts and girly treasures. Each thing she got - she studied. She ran her fingers along the front of a book or down a Barbies hair. A friend played hand puppets with her, which made Gabriella smile. We blew bubbles and watched her kick her legs up to get them and bat at them with her hand. She opened her own goodie bag of items and she even raised her eyebrows in excitement when she discovered her Barbie can go in the bathtub with her. When Daddy got back from time with PJ, Gabriella easily showed him the goodies she got, pointing out the details she discovered when she got them. It was hard to be depressed with so many people visiting you and so many heartfelt gifts to surround her in bed.
Some little things she did today that were big in my book... she made a couple noises in place of her blank words which was very encouraging to me. She even made a sound much like 'uhn-uh' to say no to the nurse changing her feed. She had what looked to me like unconscious movements of her elbow when she was mad at the nurse or moving up in bed. She's engaging... and not giving up hope. I ask her to try and practice her words, and though her mouth never moves, I encourage her for the effort and tell her we can try again later.
We played hard today, and engaged for quite a while. It exhausted her, to the point of a headache, but I cannot regret it. It was awesome to see some of her excitement and feisty-ness. They will give her Tylenol every 4 hours all night to help curb that headache, and I am praying a combination of her much more peaceful rest and hard work will give her a calm night's sleep. Tomorrow will be a bigger day, having her CT scan and speech therapy. Of course, more love will come visit her throughout the day, and she sure loves it.
Gabriella is up to 20cc per hour of NG feeding, and tolerating them well. The Zofran seems to be working, but I had no doubts. I know firsthand how amazing that med is! They are slowly lowering her Dopamine and plan to restart her Atenelol soon. It is all a prioritized balance of brain and heart with her, and it seems the plan they have worked out for her meds is reasonable and cautious.
I am sorry it took so long to write today. I was gone with PJ most of her napping times, and the evening was filled with the amazing surprise of playtime. Though it is one of my top priorities to keep everyone updated in detail through my blog for both your concern and prayers, I much prefer blowing bubbles to typing. :) But I am sure you understand!
I can't thank all of you enough, for the messages, texts, emails, prayers, love and support. I tend to cope so much better when people are here. It almost is as if her condition doesn't negatively bother me as much when people are around, because the energy of love filters out the nightmare and I can only see positive. Nights and mornings seems to be hard emotionally on me, but as long as I am right by her I am ok. And seeing her look for me every time she looses track of me makes me feel loved and wanted and tells me I am doing something right in her eyes.
Her throat is very irritated due to the NG tube and intibation. They gave her some Tylenol to help with that. She is spitting her saliva instead of swallowing it because it hurts so bad, so I'm hoping she can get over that pain, poor princess.
Gabriella is getting depressed, so please pray for her spirits. She is a fighter, no doubt.... but she is already tired of the lack of communication and being in bed. She asks to get up to the bedside potty every time she wakes, and we take her. It is nice to get her muscles moving- or at least it makes me feel better.
There really isn't a hardcore or long term plan for this week. It is more a series of short term possibilities and baby steps. Tomorrow she will have a CT Scan done to look for bleeding. If all is clear, she will start a new and stronger anticoagulant Tuesday. This new one is injection, which Gabriella will HATE, and will last 3-6 months. They mentioned 'installing' a port into her leg that we can inject it through but I have yet to find out more about it tomorrow. Hopefully speech therapy will start tomorrow and we can get this swallow function evaluated. I would love to get her mouth moving and functioning with them.
Whether this clot breaks down or not, her function and speech will take work to regain. That area was damaged and it cannot just reverse. But with the reassignment of speech and movement I spoke about yesterday we can help her regain the lost abilities through therapy.
I left for a couple hours today to shower at the Ronald McDonald house, do some laundry and see PJ. My sister met me up there with him. He was so precious, rubbing my leg and arm and laying his head on me. He was full of energy, but as much as it was fantastic and fuel for my heart to be with my boy, it was equally as hard to think of what was and what now is. To see him running and playing and talking, knowing Gabriella can do none of that, was extremely difficult. But I was able to love on him and make him lunch and spend some short but quality time with him.
1030pm: We had lots of visitors so I am picking up this update where I left off. After I got back from the RMH and sent Paul to play with PJ, Gabriella started to get a slow flow of visitors. She was adorned with gifts and girly treasures. Each thing she got - she studied. She ran her fingers along the front of a book or down a Barbies hair. A friend played hand puppets with her, which made Gabriella smile. We blew bubbles and watched her kick her legs up to get them and bat at them with her hand. She opened her own goodie bag of items and she even raised her eyebrows in excitement when she discovered her Barbie can go in the bathtub with her. When Daddy got back from time with PJ, Gabriella easily showed him the goodies she got, pointing out the details she discovered when she got them. It was hard to be depressed with so many people visiting you and so many heartfelt gifts to surround her in bed.
Some little things she did today that were big in my book... she made a couple noises in place of her blank words which was very encouraging to me. She even made a sound much like 'uhn-uh' to say no to the nurse changing her feed. She had what looked to me like unconscious movements of her elbow when she was mad at the nurse or moving up in bed. She's engaging... and not giving up hope. I ask her to try and practice her words, and though her mouth never moves, I encourage her for the effort and tell her we can try again later.
We played hard today, and engaged for quite a while. It exhausted her, to the point of a headache, but I cannot regret it. It was awesome to see some of her excitement and feisty-ness. They will give her Tylenol every 4 hours all night to help curb that headache, and I am praying a combination of her much more peaceful rest and hard work will give her a calm night's sleep. Tomorrow will be a bigger day, having her CT scan and speech therapy. Of course, more love will come visit her throughout the day, and she sure loves it.
Gabriella is up to 20cc per hour of NG feeding, and tolerating them well. The Zofran seems to be working, but I had no doubts. I know firsthand how amazing that med is! They are slowly lowering her Dopamine and plan to restart her Atenelol soon. It is all a prioritized balance of brain and heart with her, and it seems the plan they have worked out for her meds is reasonable and cautious.
I am sorry it took so long to write today. I was gone with PJ most of her napping times, and the evening was filled with the amazing surprise of playtime. Though it is one of my top priorities to keep everyone updated in detail through my blog for both your concern and prayers, I much prefer blowing bubbles to typing. :) But I am sure you understand!
I can't thank all of you enough, for the messages, texts, emails, prayers, love and support. I tend to cope so much better when people are here. It almost is as if her condition doesn't negatively bother me as much when people are around, because the energy of love filters out the nightmare and I can only see positive. Nights and mornings seems to be hard emotionally on me, but as long as I am right by her I am ok. And seeing her look for me every time she looses track of me makes me feel loved and wanted and tells me I am doing something right in her eyes.
Update coming
I know so many people are checking for an update. It has been a hectic day. Gabriella is okay, and I will settle down to update shortly.
Thank you everyone for loving my baby!
Saturday, September 26, 2009
A picture of my sweet girl
Though she is immobile on the right, her left side is also weak and slow, but when she had some strength she showed it. She reached for her Rosetta barbie doll and held her. We pointed at her dress, hair, wings and tights.
We painted her toe nails tonight too, which she enjoyed though she couldn't express it.
She started 5cc every hour of NG tube feedings (nasal tube) and we will slowly increase that. Otherwise, she is sleeping soundly and tonight has been calm.
I want to thank everyone from the bottom of our hearts for the prayers and love. We have had amazing people surround us long distance and up close. We are beyond blessed and she will be given fuel to fight by seeing those that she loves around her.
Saturday 5pm update
I wish I had better news for today, but not much has happened. Gabriella got morphine for pain at 830am and we have lost the entire day to morphine side effects, which I regret. She is angry and uncomfortable, understandably. She still has no speech and no right arm movement.
We assisted her to the bedside commode once today. I was able to give her a sponge bath and the nurse change her bed sheets. Her right leg strength is a bit better, so I'm praying that's a beginning.
There are so many conflicts as to when to do what tests or start what therapies. Tonight, with her aspirin in her NG tube, she will start feedings in small amounts. I'm hoping it gives her energy and stamina. They are contemplating when to do another MRI and see any changes in the clot. Ill post when they decide.
One miraculous thing I want to mention is speech. The location of her clot is directly on her speech area of the brain. Until puberty, children have the ability to relocate and reassign where the brains speech ability is located. Fortunately, she has the possibility of her speech returning because of how the brain performs this amazing change.
I cannot even begin to express how badly I want to hear her voice again.
We assisted her to the bedside commode once today. I was able to give her a sponge bath and the nurse change her bed sheets. Her right leg strength is a bit better, so I'm praying that's a beginning.
There are so many conflicts as to when to do what tests or start what therapies. Tonight, with her aspirin in her NG tube, she will start feedings in small amounts. I'm hoping it gives her energy and stamina. They are contemplating when to do another MRI and see any changes in the clot. Ill post when they decide.
One miraculous thing I want to mention is speech. The location of her clot is directly on her speech area of the brain. Until puberty, children have the ability to relocate and reassign where the brains speech ability is located. Fortunately, she has the possibility of her speech returning because of how the brain performs this amazing change.
I cannot even begin to express how badly I want to hear her voice again.
Saturday 5am update
Gabriella has slept most of the night.
I laid down by her and we fell asleep a little past 11p. She woke up for a bit at 1a and started choking on her saliva and threw up. She fell back asleep but went through the same again at about 330a. The second time I was by her again and had the suction handy. She started to get extremely lethargic and was not nodding her head when we asked her things.
Since her swallow is weak, and we are still unsure if she is swallowing all of her saliva, they decided to put in an NG tube to drain her belly as it accumulates bile, and give her zofran to relieve the nausea. This will prevent her from puking it up and possibly aspirating it. She perked up a bit after the zofran kicked in. She doesn't want me to sleep by her now so I am curled up at the foot of her bed.
I am anxious to see what Saturday holds for my princess. Our prayers have been constant all night, as have so many of yours. We are extremely grateful.
Friday, September 25, 2009
Recap of today
I am sitting at the end of my princess's hospital bed and wanted to cry out for prayer. Tonight feels like such a critical time. We are watching her vitals closely, hoping things stay stable. I can't help but feel God will take that clot in her brain and gently diffuse it, and give new life to the damaged areas that have been without blood flow.
This morning at 930a I gave Gabriella breakfast. Shortly after, she was on the ground, not able to speak and unable to get up. I immediately called 911 and the cops and paramedics arrived quickly. PJ was scared for his sissy, and the paramedics started working on her. I informed them of her heart history and requested they bring her to Phoenix Childrens. They got her out of the house quickly and to the Air Evac, while I waited for my mother in law to come get PJ. When she arrived, I sent PJ with my father in law and we drove to the hospital. I managed to alert Loma Linda while rushing to Phoenix.
They did some vitals and an emergency MRI, which took longer than the 40 minutes they estimated. When we got to her PICU room, a huge team of doctors and nurses were at her room, trying to figure out the best possible treatment. The doctor told us to sit so we could talk, which is sign #1 its bad news. We were told she had a stroke and the damaged area was pretty large. This was more than likely originating from the stagnant and poor bloodflow in her heart, and the blood thickened and shot to her brain. At first, they planned to send her out to Barrows Neuro Institute but got word they couldn't perform the TPA infusion they had hoped because of the severity of the thrombosis (clot). They put in an arterial line into her hand for blood draws and to better monitor her blood pressure. They also put in a groin catheter. They will treat her with aspirin daily to thin the blood.
As the day went on, she had tiny improvements. It started off with very minimal response- tiny nods and weakness all over. No movement on her right side, no talking, and weakened left side movement. By tonight, she had given us the most gorgeous half smile grins, nodded yes and no for our million questions and is showing some left side strength. She still isn't speaking at all and her right arm movement doesn't exist. But as the aspirin works, and the clot dissolves, we have a better chance of regaining these lost abilities. We will start speech therapy monday, given the weekend goes well.
If the aspirin therapy doesn't work, we will face other treatments. They are watching for swelling around the damaged area and keeping a close look at her heart. The last treatment we want to consider right now is surgery, so we will cling to the prayer of healing.
God, heal my baby. Shatter the clot with your insurmountable power. Give the deprived areas of her brain the miracle of life and function that only you can provide. Let her sweet voice be heard by everyone she encounters, and her hand hold mine on its own. Let her change the way people think about life, or their children. We have full faith in You and Your love for her. Amen.
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