Today has been an ok day (so far). She slept pretty much through the night and only roused at about 6 AM. I administered her needed meds. At first, she was not able to open her mouth to talk or eat but after the medications got into her, she actually took a sip of chocolate milk and then proceeded to drink a full 8 oz (a rompy cup) full. She talked to Roger a little bit too. The day has consisted of:
Visits from friends, schoolmates, and Noah's Children staff to read, sing, and talk to her (and us).
Administration of medications (all timing related so lots of tracking involved)
Awaiting the snow and now watching it fall. It is coming down pretty well right now and anyone in the Richmond area (or those keeping an eye on the Weather Channel) know that we are headed for some good snow. I guess it's a good thing that everyone bought out the grocery chains and filled up their gas tanks.
She has been sleeping, dozing, sometimes slightly awake, and even occasionally responsive to questions with head nods and appropriate waves, etc. Sometimes she is even snoring. She hasn't eaten anything since this morning but she genuinely seems comfortable and content. That makes me happy.
The visits have all been wonderful and I was really amused when one of her preschool friends said, "Her hair grew back!" and another one said, "And her face got a lot bigger!" I love the innocence of children. I think they had a good visit. At the same time, I think Roger had almost as much fun entertaining the kids who visited. It's good therapy all around.
They will be delivering a pump for the morphine tonight and we will get it started tomorrow. This will hopefully even out her morphine dose while allowing us to "push" some extra if she seems in distress. It's hard to say where things will go from here (there are multiple possibilities) but I doubt she will be alert on a regular basis from this point forward.
I have VERY good news on the Denver front: I have had THREE people contact me about helping with our family in need that lives in Golden. I have sent out an email to everyone, putting all in touch with one another, so hopefully the ball is ROLLING. Be on the lookout. We may use this blog or our website as a vehicle to help with PR or networking as we help this family. Thank you to those of you who have agreed to help. Lara Lombardo, a friend of Roger's from high school (Denver North!), helped to organize a bake sale in Denver recently for CJ and they raised a little over $400. We have asked them to pass these funds directly on to the family in Denver in CJ's honor. Thanks to any of you who participated in that. The CJSTUF network is working already! THIS is what it's all about!! (No, Roger, it's NOT the Hokey Pokey!!)
OK, I understand dinner is on its way so I plan to go watch the snow, enjoy my daughter, enjoy a meal, and stay safe and cozy indoors. Y'all do the same!
Rachel
Showing posts with label morphine. Show all posts
Showing posts with label morphine. Show all posts
Friday, December 18, 2009
Sunday, February 8, 2009
CT in the ER
Last night was not bad. Charlotte still had head pain but we got her out of bed and she scarffed her dinner while we watched "Enchanted" (very cute movie, by the way). We both went to sleep around 9:30 and I didn't her a peep until 3:25 which is when she started crying very loudly.
New developments: The doc was getting concerned about Charlotte's head pain last night so she ordered a CT scan as soon as possible. At first the nurse, whose name is, I kid you not, Princess, was telling me the only CT machine available was the one in the ER so she was warning me about the sights and sounds one might experience there on a weekend night. I even fashioned a blindfold for CJ under the guise that the lights might hurt her eyes, which has actually been the case lately. At the last minute they sent us to the third foor where she had gotten them before. That was a much calmer ride. CJ slept through most of it.
Now we're waiting. What the pediatric surgeon told me was that they think her ventricals might not be working as well as hoped and they might actually have to go in again to install a shunt after all.
I'll keep you all informed as I can,
Rog
After a much better night of sleep, I feel like a human again.
Dr. Tye came by and told me Charlotte's CT scan looked the same as before so no shunt. That's good news.
Bad news is he thinks it could be aseptic menengitis (kind of a lining irritation after effect of the surgery). They're going to do a spinal tap today to relieve pressure.
They momentarily got CJ back on morphine while they checked to see if the Tylenol 3 was masking the fever symptoms. It wasn't.
Nurse Dana is on the edge of getting a nickname but I can't quite put my finger on what it should be.
If you're planning to visit, please be ready to either wait or not get much action out of her. She'll be sedated for the spinal tap and none knows exactly when that will be.
Spinal Tap
Spinal tap has been done, fluid was drained, pressure was released. They moved her back into the PICU for the procedure and now she's back in her room sleeping soundly. She slept through the move and most of the prep until one of the docs (I call her Dr. Raging Bull) manhandled her onto her side.
I appreciate Dr. Tye's bedside manner more and more whenever I come across someone who seems to have forgotten that the piece of meat in front of them is a person. I constantly have to weigh whether I think a docs/nurses procedure is so important that we need to disturb CJ. The night nurses are so amazing at NOT disturbing her, they have really spoiled me for the other medical professionals who are very capable and proficient at what they do but are a bit tunnel visioned on the procedure sometimes.
I'm sure they have a knickname for me.
So anyway, she woke up as they moved her onto her side and nearly panicked. Probably because she was in a new room and she was pretty sure that being on her side meant that something bad was about to happen to her. Fortunately I was there and when she saw me, she reached out with her right hand and put a death grip on my finger. She made me sing Frosty the Snowman to her and I had a flashback to the moments before her first surgery. I had some real trouble keeping it together. But it was enough for her and she settled down pretty quickly. Then the sedative was administered and she was out. Still took me a moment or two to get my finger unlatched.
After the procedure, Dr. Raging Bull tried to wake up CJ but she wasn't going for it. The doc asked her if she wanted to sleep some more and, with eyes closed, she nodded, "Yes."
For the record, the doctor who actually performed the "LP" (lumbar puncture), Dr. Czynsky, was great, overexplained everything to me, and afterward, showed me the vials of fluid that came out because he knew I like to see that kind of stuff. :-)
In a few minutes it will be 2 hours after the procedure and we're going to wake her up to see if she still has a headache. If she does, it iisn't the fault of the spinal pressure. It would be great to hear her say, "I'm hungry" and not, "My head hurts."
There was another "older" Doctor there who was teaching a couple of med students abut LPs so they'll be ready whenever someone wants to listen to some classic rock albums...uh wait...
It's pretty cool to be part of the education of the next generation of doctors.
Countdown to homecoming
Mommy's turn...
I don't have much to update on the hospital front, but on the home front we are moving right along. The house is just about ready for CJ's homecoming. We have moved the daybed from our guest room downstairs to the dining room, pushed the dining room table to one side of the room, and emptied one of the buffet cabinets. This will give us plenty of room for all her "stuff". We are planning to hang her many get-well cards and posters on the walls. I think we have secured a bed rail too.
Much thanks to Juli and Geoff Tubbs. They have a pre-made and ready to go wheelchair ramp at their disposal. Roger will be contacting them about getting it to us and I was gently reminded by our neighbor and town councilman to double-check with the city about building permit stuff (Thanks, George!). Just in case...
I expect that tomorrow will be another endless day of meeting with doctors and therapists and we are hoping that she will be ready for a transfer home on Tuesday. May take a lot of coordination but it will happen!
It was so nice to be at church today. We had boy and girl cousins baptized today. Welcome to the church family, Brown and Aliyah! The baptisms were beautiful and it was that wonderful combination of comforting and overwhelming to be "home". So nice to see everyone and get well-wishes, wise words, and hugs.
Now I'm at Romp n' Roll. Phyllis is doing some touch-up painting and I'm doing the books. Ugh...a necessary evil of business ownership, I guess. Hopefully we will get to the hospital to relieve Roger soon.
Happy V-D week.
Shrek!
Much laughing tonight as she watched Finding Nemo and Shrek. She also ate a TON more. They weighed her tonight and she came in at 15 Kilos. She weighed 13.7 when she came in the hospital! Guess that hospital food (and the choco chip cookies...) are pretty good.
They did give her a bit more morphine tonight. Supposed to help with her head pain. She was also supposed to fall asleep soon after her bath but still awake. Eyes glued to Shrek...
Hopefully we will have a peaceful night in preparation for a busy day tomorrow.
Rachel
Sleep doesn't come easily
Ok, so my child is seriously strange.
The nurses gave her medicine (including morphine) at about 8:30 (I think?) and then she had her bath. We thought, Ok, she will be asleep before we know it. Well, it's 11 PM and while she is mello-yello, she is most definitely not asleep. She did get the munchies and ate 5 more pretzel sticks and is now munching on a bowl of dry cheerios. She also keeps asking to hold new stuffed animals (she is literally holding Dora, Pooh, and her two beanie babies ALL AT ONCE!). And every once in a while she loops into random statements like, "Mommy and Daddy work at Romp n' Roll and Daddy teaches classes for me..." or "I really love my animals mommy....more cheerios?". She's hilarious! The nurses are astounded that she's still awake. My daughter, the stoner!
Meanwhile, I watched a whole episode of Desperate Housewives online and checked up on Facebook. I don't know about my doped-up child, but mama is tired.
Just remembered to turn on the Starry Night lullaby CD so maybe that will help...
Sunday, February 1, 2009
Date Night, Shout Outs
Date Night
I second Roger in apologizing for very little update yesterday. It was a very busy day all around and as mentioned, there were internet issues.
Roger and I enjoyed a wonderful "date" down in Shockoe Bottom. It was so nice to be in a non-hospital setting and talk about everything. We had a great time and a great meal. To continue the "dealing with a newborn" analogy, we defintely felt like that first time when you leave the baby with the sitter and go away for a few hours. You have that strange feeling of joy, worry, and relief all at once and you tell about a million people "call us if you need anything". Much thanks to Grandpa and Juanita for entertaining CJ and Phyllis for chauffering us around.
When we returned, Charlotte was still awake (watching videos!) and a bit whiny. she did get a new dose of morphine but it took a little while to settle down. She keeps complaining of itching at her incision site (understandable). Once she fell asleep, though, we both slept very well. I only remember waking a few times last night and almost immediately went back to sleep. She slept almost straight through till 7 am.
Awoke hungry and has already eaten almost 3 packages of graham crackers. Waiting for breakfast!! Now she's dozing again.
We look forward to our Sunday visitors. Get here before the game starts! I personally don't have a "favorite" this time so I will root for the commercials.
I am sure Monday will be a busy day. All our therapies will come to visit plus we await a visit from Dr. Khan and his crew with news about an oncology plan.
All for now...
Rachel
SHOUT OUTS!
Thanks go out to CiCi's Pizza in Glen Allen for providing us with food the other day. We have a great working relationship with them. We send them lots of customers and they make us look good when pizzas come to Birthday Bashes. Jeff and Nicole and everyone there are "da bomb."We also got another couple of meals from the Yahoo dads club (Todd I WILL call you today, I promise!) and I got to meet another dad to whom I've only talked online (The internet still amazes me).The Virginia Music Therapy Association provided some seriously good (and big) dinners all last week. You also fed some other families with loved ones on the floor. A wonderful bonus.The families of Hanover Montessori School, besides buying us a new freezer, also filled it up this week. My special ice cream cake, or what's left of it, is in there too. Thanks Horn family!The gifts keep coming in from all over and we're doing our best to keep track. It's becoming part of our therapy to go through cards, bags, boxes, etc... and keep track of who gave us what. Your generosity will be major plot point in the Lifetime move that will have to be made some day.I very much enjoyed the birthday date last night. I had the rarest of all delicacies, at least for me, lobster! Actually, the meal combined multiple favorite foods - lobster, trout, and pasta all on the same plate.We then walked around the Slip for a while and experienced a great cross section of "interesting people" who frequent entertainment/dining sections of urban downtown areas. I believe alcohol played a factor in a great deal of it. Lots of fun! I really love Richmond.One of the bigger shout outs goes to Aunt B (Becky) for coming out from New Mexico. She left for home yesterday and, I assume, got back safely. (no need to call) It was great having her here and CJ loved having her around.Hey! It's Super Bowl Sunday! Believe it or not, It keeps slipping my mind and then creeps back up and pounces on me. I'm all for the Cardinals. I want Kurt Warner to win a Super Bowl with two separate teams. I don't think a starting QB has ever done that. CJ is still going to root for the Broncos.
St. Judes?
About that St, Jude's Childrens' Hospital thing...I probably misspoke when I posted that. When we were having a meeting with the docs about possible future plans, St. Jude's came up as an option and I thought they were recommending we go there. It seemed strange but I went with it.The truth is, as wonderful as St. Jude's is, we've been getting the best treatment in the world right here and we can't see uprooting everyone and traveling far away to a place where we don't know very many people.Odds are we'll stay right here for now. I WAS looking forward to camping out at Graceland but I guess that can wait for another day.Now just watch us move to Alaska or India or something.
Going Wireless at the hospital
This update is brought to you courtesy of the brand new Eee PC which was very generously donated by yet another family. And our AT&T wireless card has come in very handy as well since the internet at the hospital is sketchy. Still getting used to the keyboard so forgive me if my spelling is worse than usual.
We had a little adventure today. Charlotte has become a victim of her own success. They have had a rash of critical admissions so they moved Charlotte down the hall to another less critical (and slightly lessroomie and comfy) room. We are lucky that it's a "private" room where all the other beds are separated by curtains. No private shower anymore. We'll all survive but the move was kind of sudden and we had to scramble to get all of CJ's gifts packed and moved. Thanks to Dad and Heather for schleping everything. We've now had two trips to take stuff home. We're getting close to our space limit for CJ gifts so although we hugely appreciate all the things filling up CJ's room, it's becoming a possibility that any gifts you bring to the hospital may be re-donated to some of the other children here. Some could really use them.
There are others here who could use your positive energy tonight: Sarah, the adrable red-haired girl has been having a rough time and on top of that, her mother had a mild stroke this morning. She's already been released so it's not life threatening but it's one more thing they didn't need. There was also a baby that "coded" as we were moving CJ to her new room. The amazing staff here at MCV brought her back pretty quickly but she's not out of the woods.
Speaking of doing things in the woods, CJ hasn't released her bowels since the last monumental event so I believe they're going to force another one. Fun fun fun! She's also still itching and they're trying to minimize the morphine.
I'm actually in the lounge waiting for the Super Bowl kick off so I'll post this for now. As Rachel said, GO COMMERCIALS!!!
Rachel needs to rest...
Tired....
I'm very, very tired so I will keep this short. What a crazy few weeks it has been. I have spent the evening playing some "catch up" at home and will be off to RnR tomorrow to keep things rolling (and romping).
I think my house is cleaner now than it has been since before the holidays (thanks, family!) I haven't cooked a meal in two weeks (thanks to SO many) and I am so grateful for all that we have been given because I know that I would not have had the strength or ability to do anything domestic with all the emotional energy I have had to procure and use. I am learning how to delegate better. Please do not be offended if you ask me what you can do to help and I say, "I don't know." I'm learning too.
The words of wisdom, strength, hope, and peace that have come to me through phone calls, emails, caring bridge messages, visits, and in so many other ways have helped us through. I think Roger and I are now addicted to this "blog"...a good thing because I think we have sucked in a few fans! This journal has become my therapy so despite my fatigue, I must complete at least one entry a day...
Yes, as Roger mentioned, we are now on the "step-down" unit of the children's floor. We are still located on the 7th floor and you will still follow similar procedures to see us/meet up with us BUT the direct phone number to the room has changed so please call our cell phones if you need to reach us. We can receive text messages fairly easily too (if that works for you). She is now in room 707. While we did not want to move, we were lucky enough to end up in a "semi-private" area of the unit and the nurses seem wonderful already. Hopefully, the next week or so will mean quick progress for Charlotte and we will get ready for the next step of the journey. I am sure that there will be more meetings with Dr. Khan (our oncologist) now that Dr. Tye is happy with how she is progressing post-op.
Her left side continues to be weak so we know PT and OT will be a part of her future. Rumor has it that there will be a speech/language evaluation too. Mommy thinks it should go fairly well (wink, wink!).
I will really sign off now. Maybe I'll actually catch the last 30 seconds of the super bowl. Sounds like it was a good game...
Rachel
I second Roger in apologizing for very little update yesterday. It was a very busy day all around and as mentioned, there were internet issues.
Roger and I enjoyed a wonderful "date" down in Shockoe Bottom. It was so nice to be in a non-hospital setting and talk about everything. We had a great time and a great meal. To continue the "dealing with a newborn" analogy, we defintely felt like that first time when you leave the baby with the sitter and go away for a few hours. You have that strange feeling of joy, worry, and relief all at once and you tell about a million people "call us if you need anything". Much thanks to Grandpa and Juanita for entertaining CJ and Phyllis for chauffering us around.
When we returned, Charlotte was still awake (watching videos!) and a bit whiny. she did get a new dose of morphine but it took a little while to settle down. She keeps complaining of itching at her incision site (understandable). Once she fell asleep, though, we both slept very well. I only remember waking a few times last night and almost immediately went back to sleep. She slept almost straight through till 7 am.
Awoke hungry and has already eaten almost 3 packages of graham crackers. Waiting for breakfast!! Now she's dozing again.
We look forward to our Sunday visitors. Get here before the game starts! I personally don't have a "favorite" this time so I will root for the commercials.
I am sure Monday will be a busy day. All our therapies will come to visit plus we await a visit from Dr. Khan and his crew with news about an oncology plan.
All for now...
Rachel
SHOUT OUTS!
Thanks go out to CiCi's Pizza in Glen Allen for providing us with food the other day. We have a great working relationship with them. We send them lots of customers and they make us look good when pizzas come to Birthday Bashes. Jeff and Nicole and everyone there are "da bomb."We also got another couple of meals from the Yahoo dads club (Todd I WILL call you today, I promise!) and I got to meet another dad to whom I've only talked online (The internet still amazes me).The Virginia Music Therapy Association provided some seriously good (and big) dinners all last week. You also fed some other families with loved ones on the floor. A wonderful bonus.The families of Hanover Montessori School, besides buying us a new freezer, also filled it up this week. My special ice cream cake, or what's left of it, is in there too. Thanks Horn family!The gifts keep coming in from all over and we're doing our best to keep track. It's becoming part of our therapy to go through cards, bags, boxes, etc... and keep track of who gave us what. Your generosity will be major plot point in the Lifetime move that will have to be made some day.I very much enjoyed the birthday date last night. I had the rarest of all delicacies, at least for me, lobster! Actually, the meal combined multiple favorite foods - lobster, trout, and pasta all on the same plate.We then walked around the Slip for a while and experienced a great cross section of "interesting people" who frequent entertainment/dining sections of urban downtown areas. I believe alcohol played a factor in a great deal of it. Lots of fun! I really love Richmond.One of the bigger shout outs goes to Aunt B (Becky) for coming out from New Mexico. She left for home yesterday and, I assume, got back safely. (no need to call) It was great having her here and CJ loved having her around.Hey! It's Super Bowl Sunday! Believe it or not, It keeps slipping my mind and then creeps back up and pounces on me. I'm all for the Cardinals. I want Kurt Warner to win a Super Bowl with two separate teams. I don't think a starting QB has ever done that. CJ is still going to root for the Broncos.
St. Judes?
About that St, Jude's Childrens' Hospital thing...I probably misspoke when I posted that. When we were having a meeting with the docs about possible future plans, St. Jude's came up as an option and I thought they were recommending we go there. It seemed strange but I went with it.The truth is, as wonderful as St. Jude's is, we've been getting the best treatment in the world right here and we can't see uprooting everyone and traveling far away to a place where we don't know very many people.Odds are we'll stay right here for now. I WAS looking forward to camping out at Graceland but I guess that can wait for another day.Now just watch us move to Alaska or India or something.
Going Wireless at the hospital
This update is brought to you courtesy of the brand new Eee PC which was very generously donated by yet another family. And our AT&T wireless card has come in very handy as well since the internet at the hospital is sketchy. Still getting used to the keyboard so forgive me if my spelling is worse than usual.
We had a little adventure today. Charlotte has become a victim of her own success. They have had a rash of critical admissions so they moved Charlotte down the hall to another less critical (and slightly lessroomie and comfy) room. We are lucky that it's a "private" room where all the other beds are separated by curtains. No private shower anymore. We'll all survive but the move was kind of sudden and we had to scramble to get all of CJ's gifts packed and moved. Thanks to Dad and Heather for schleping everything. We've now had two trips to take stuff home. We're getting close to our space limit for CJ gifts so although we hugely appreciate all the things filling up CJ's room, it's becoming a possibility that any gifts you bring to the hospital may be re-donated to some of the other children here. Some could really use them.
There are others here who could use your positive energy tonight: Sarah, the adrable red-haired girl has been having a rough time and on top of that, her mother had a mild stroke this morning. She's already been released so it's not life threatening but it's one more thing they didn't need. There was also a baby that "coded" as we were moving CJ to her new room. The amazing staff here at MCV brought her back pretty quickly but she's not out of the woods.
Speaking of doing things in the woods, CJ hasn't released her bowels since the last monumental event so I believe they're going to force another one. Fun fun fun! She's also still itching and they're trying to minimize the morphine.
I'm actually in the lounge waiting for the Super Bowl kick off so I'll post this for now. As Rachel said, GO COMMERCIALS!!!
Rachel needs to rest...
Tired....
I'm very, very tired so I will keep this short. What a crazy few weeks it has been. I have spent the evening playing some "catch up" at home and will be off to RnR tomorrow to keep things rolling (and romping).
I think my house is cleaner now than it has been since before the holidays (thanks, family!) I haven't cooked a meal in two weeks (thanks to SO many) and I am so grateful for all that we have been given because I know that I would not have had the strength or ability to do anything domestic with all the emotional energy I have had to procure and use. I am learning how to delegate better. Please do not be offended if you ask me what you can do to help and I say, "I don't know." I'm learning too.
The words of wisdom, strength, hope, and peace that have come to me through phone calls, emails, caring bridge messages, visits, and in so many other ways have helped us through. I think Roger and I are now addicted to this "blog"...a good thing because I think we have sucked in a few fans! This journal has become my therapy so despite my fatigue, I must complete at least one entry a day...
Yes, as Roger mentioned, we are now on the "step-down" unit of the children's floor. We are still located on the 7th floor and you will still follow similar procedures to see us/meet up with us BUT the direct phone number to the room has changed so please call our cell phones if you need to reach us. We can receive text messages fairly easily too (if that works for you). She is now in room 707. While we did not want to move, we were lucky enough to end up in a "semi-private" area of the unit and the nurses seem wonderful already. Hopefully, the next week or so will mean quick progress for Charlotte and we will get ready for the next step of the journey. I am sure that there will be more meetings with Dr. Khan (our oncologist) now that Dr. Tye is happy with how she is progressing post-op.
Her left side continues to be weak so we know PT and OT will be a part of her future. Rumor has it that there will be a speech/language evaluation too. Mommy thinks it should go fairly well (wink, wink!).
I will really sign off now. Maybe I'll actually catch the last 30 seconds of the super bowl. Sounds like it was a good game...
Rachel
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