Saturday 5/3
Cami has made positive steps over the last few days. In particular, she has been weaned off of her blood pressure medicines, and the pneumatosis in her intestine continues to trend positive (less air bubbles). With blood pressures stabilizing, the docs may adjust the dialysis so we can see just what her kidneys can do. We are still rooting for pee and poop as she is still not doing much of either. But she did have another spa day thanks to nurses Stefanie and Angie. She had her hair done along with a mani and pedi. She looked beautiful for her Aunt Diane who watched her on Friday as Mandi, Jules, Carol, & I were given tickets to the circus. Admittedly we get kinda creeped out by clowns, but it was a very good show and we even got a ride on Chaney the elephant.
So let’s keep praying Cam continues to take baby steps in the right direction and continue to amaze and inspire us all (and now the docs in STL).
Monday 4/28
The girls came out with Karen and we had a wonderful visit. With a surprise visit (only because we did not see her email from Friday) Aunt Kelly came out on Sunday so we were able to extend their visit until Tuesday. So they will leave tomorrow at With Kelly at 3PM. It’ll be a tough goodbye for all.
But…they got to see Cam, and even while intubated, she woke up enough to say hi and wave. As the breathing tube is rather uncomfortable we addressed the sedation quickly and she went back to sleep peacefully. During their stay we went to the top of the Arch, and visited the City Museum (not your typical museum – more of a jungle gym on steroids). Both places were a blast! Of course shopping and dining out were on the agenda as well. We can’t wait until they get to come back.
As far as Cami…she is still having some tough days. She is still on dialysis but now, a suspected infection in her intestine has made her belly very distended. Added pressures in her abdomen now are affecting her blood pressure, lungs, and everything else north and south of her belly. So our new goal is to address this belly obstruction in hopes that will make some of the resulting complications go away. The Sr Fellow Doc this morning said, “Cami must not have read the rule book, and if she did, she’s not following them”. We thought that was cute. Once again we hope to have identified the enemy and will go after it. So we’ll keep fighting and the doc’s and nurses will keep working!
Special love and thanks to Karen Ewing and Aunt Kelly who made our great visit with Mandi and Julia possible. Sorry, got to go play with my kids…until the next blog
God Bless
Thursday 4/24
My apologies...I had blogged yesterday but will confess to operator error as it never got to Michelle Zurcher who kindly acts as our webmaster.
It has been a rough week. Sorry to say Cam has had a few setbacks. Her kidney enzymes had been creeping up which means they weren't functioning properly, so she was not able to remove the appropriate amount of fluids...thus her lungs became wet...thus she had to be re-intubated on Tuesday evening. Over the first few hours of intubation we noticed her heart was showing some arrhythmia (her sinus node was not in sync - don't really exactly what that means but it was happening). But we still had to watch to see if the kidneys were going to start functioning...which they didn't...thus we started dialysis. All the while her liver enzymes were elevated as well as her white blood count. To sum it up there was a lot of bad stuff going on.
It's Thursday morning and we will continue to work thru these challenges. But I can say the dialysis has helped to get a number of the enzymes trending back in the right direction, and has helped her electrolytes which has corrected the heart arrhythmia. It will be over the next few days that we will learn if her kidneys can bounce back and get back to normal. The liver is something that will hopefully trend better but we are told that is a slower process. We certainly need the positives of Thursday to continue.
Her sisters are coming out tonight thru Sunday with our dear friend Karen Ewing. So we anticipate having a nice visit and Cam to continue to fight. She is still listed but obviously has some hurdles to conquer in order to be eligible to receive organs. Please pray her kidneys and liver bounce back as their dysfunction can impede our path to transplant.
Sorry I do not have better news but we still very much have HOPE and CAM POWER. Thanks and love to you all!!
Sunday, April 20
The weekend brought little changes. Cam continues to stay the course. She had a couple nice periods off the mask over the weekend. We are not going to push her so the progress will be slow but hopefully steady. This week will bring monitoring her blood gases and cultures.
We'd like to send out a couple special thanks....to Michelle Craig (a co-worker) who came out to St Louis for work, but was kind enough to sit with Cam so Carol and I could grab a quick bite together at Applebee's (for the 1st time since getting to STL)....and to our family and friends in CA who held a dinner, dance, and auction to benefit us. The event was a huge success and they exceeded their own expectations. Once again the support means more than you know.
We humbly send back our love to all of you for checking in and we will be in touch in the next couple of days.
HAPPY BIRTHDAY CAM!!!
We have received so many calls, notes, packages and emails wishing Cam a Happy Day! Thanks for all of the gifts, prayers, and well wishes. But a special thanks go out to the Transplant Team who held their weekly Thursday meeting and decided that Cam is officially listed as a candidate as of TODAY. She will continue to have to work through the infection issues mentioned below, but the team sees no reason to delay the decision to have her begin ‘banking some time’ on the UNOS list (United Network for Organ Sharing).
In addition, the additional oxygen support she needed as she fought these recent infections has been slowly coming down. She’s getting back on track!
In fairness, she wasn’t a very happy birthday girl…being in the hospital and away from home. Her best birthdays are yet to come! We look forward to celebrating those with all of you.
This was a big day for Cami and everyone rooting for her. Thank you for all of your prayers and support!
Tuesday 4/15
Well, we met with the transplant team…
And we still need to work thru a few things to be officially listed. That may happen over the next few days. However, based on the infections we are dealing with, she would be listed as an inactive candidate. Once the docs feel confident the infections are addressed, she then would move onto the active list and the wait begins. Unfortunately the infections are ones that could take a while to clear up (speculation is no less than 2-6 weeks).
We’re taking from that meeting the half full approach…there will be hurdles (like we didn’t know that) but there are no walls in front of us. We will need to use the patience God has given us and the support and prayers of everyone rooting her on.
Thanks for checking, sorry we don’t have more definitive news, but we’ll keep you posted.
Sunday 4/13
Well...the good news is she has continued her successful trials off of the mask and the cultures for the fungal infection are negative to date. But...the bad news is she has developed a temperature over the weekend...which means we have another 'infection' to deal with. Today we have started a course of 3 broad spectrum antibiotics...which hopefully will quickly address the bug in question. Admittedly and understandably with the temperature, Cami has become less energetic and pretty bummed out. But once the temp breaks she'll get back to her old fightin' self...giving the docs a run for their money and doing the arts and crafts she enjoys.
We still expect to meet with the transplant team in the next couple of days...we'll keep you posted on those conversations.
Other than that it's back to work for me tomorrow (remotely from STL), which means Carol will be managing Cam's bedside during the days and I will be with her over night. Rest assured one or both of us will always be within a hugs reach. Take care and thanks!
Thursday 4/10
Cami has significantly increased her trials times all week. As mentioned Monday, we completed 2 trials at 30 minutes each...each day we have successfully taken longer breaks off the bi-pap mask...today we have already completed our first trial of 3 HOURS...and we're going to try to get a second 3 hour trial done a bit later.
The fungal infection is still a concern...but she received the last dose of that antibiotic on Tuesday. Now we wait and look for negative blood cultures through the weekend (FYI- negative so far).
The evaluation process is in full swing. As we understand it, Dr Sweet and members of his team will meet with us the 1st part of next week to let us know if she can be officially listed as a transplant candidate. We were hoping to know this week but I think they want to see a few more blood cultures come back.
Carol and I have secured a room at the Ronald McDonald House. It's about 8 blocks away and they have a shuttle, but we are still trying to work out the timing and logistics. I was bummed to find out they really didn't serve Big Mac's and Filet-O-Fish. But having somewhere to rest my head outweighs my desire for fast food!
The best part of the week has been spending hours at a time looking at Cami's face wearing only a nasal cannula. It's the quality time we've been waiting more than two months for. She had her hair washed on Tuesday and wants another 'spa' day today. We will have some pictures posted soon.
Thanks for checking in and take care.
Monday 3/7 - First of all, a special special thanks to nurses Mary and Marina for their care throughout, but especially the last few days of our stay at JH - without them, I’m not sure we’d be blogging from STL!!
Our goal for Sat was met…2 sprints at 30 minutes each (sprints are time off the pressurized air mask…in STL they are referred to trials), and lots of poop (Cam, I’m sorry if this embarrasses you when you end up reading it). Her energy and alertness has improved allowing for more fun activities like coloring and painting.!
On Sunday she successfully was able to complete 2 trials of 1 hour each…while on nasal canula’s only! Great progress and good work by Cam. We did more arts and crafts as well. Worked with the Occupational and Physical Therapists (OT/PT). She been busy!
So far today, we have already completed a 1 ½ trial, brushed her hair out, then did some painting, and played Guess Who with the OT. She has a 2:00 play date with Becky our childlife specialist. And we’ll do another trial of 90 minutes.!
This will be a big week as all the teams will confer to determine if she is indeed officially, a transplant candidate. Other clinical notes…some recent liver dysfunction is trending back in the right direction, and her fungal antibiotic course ends on Tuesday…so we pray cultures remain negative.!
Thanks for checking in. We’ll keep you posted. Love and thanks go out to all!!
Sat 4/5 – its been a whirl wind 48 hours. Carol got here yesterday safe and sound. Once again, a special thanks to Kim Brannan, my friend and colleague, who shuttled each of us from the airport to the hospital!
The conversations, consults, and exams have begun. While we have been spoiled by our caregivers at Hopkins, the medical teams and staff hear have been very impressive, efficient, and caring. So ever the next week we will learn more about the evaluation process. The medical complex here is massive (Children's Hospital, Barnes-Jewish, Washington U School of Medicine, St Louis College of Pharmacy and more) – 25,000 person campus. It will take a while to get the lay of the land.
The little lady had a big day yesterday in getting a pic line, having her femoral line removed, getting respiratory therapy…they’re working her hard. But as usual, she stepped up to the plate and had enough energy left to do some coloring with Mom before she fell asleep. Today’s goals…a sprint off bi-pap and POOP. Her tummy has been crampy so she needs to ‘evacuate’, as the say.
Friday, 4/4
WOW!!! BJ and Cami are safely in St Louis, WHEW! I can exhale (only for a moment) I am flying today after hugging Amanda and Julia tightly and telling them everything will be alright, that there are many, many people are here for them and crying is okay.
A special thanks throughout these very difficult 2 months and 3 days in Johns Hopkins Pediatric Intensive Care Unit and Home: My Mom, who gave me my strength and nourishment, took my crabbiness, and did my laundry without complaining, I thank you!! Aunt Debbi and Karen Ewing who came up to the hospital to relieve BJ or I so we could spend some time at home with Amanda and Julia and maybe get some sleep. Without you three we wouldn't be standing.
To the PICU team, if I tried to name you all I would miss someone, but I am going to try: Any family that stays as long as the Diamonds did, knows everyone, Dr Jamie Schwartz, looks too young to be a doctor, thanks! Dr Kristin Nelson, beautiful overachiever, always had a smile on her face, Dr Chris Watson, took Cami on having no Idea what he was in for, I think Cami taught Chris to never give up hope because kids do amazing things!!! Dr Harris, love you, Dr Nichols - I told you it was the old blood clot in the right atrium :) And the Nurses: the best team I have ever come across, and we have been in need a alot of nurses: Renee, Aubry, Erika, Eva, Megan S., (I think the music is playing and they are asking me to wrap it up - no way) Maureen, Dawn, Missy, and as you that you are our scarecrow, Megan Quick, never we know better, and I promise to not let up on my questions - you know me, I kept you all on your toes, I will do the same in St Louis!!! For all of you that I missed, I did appreciate you and thank you so much.
please keep in touch, there is a contact button on the home page that you can email us, even Cami gets her own email.
Campower!!!
Thurs 4/3 (by Guest Blogger Megan Quick - Cami's Nurse). See the pictures of the trip.
Hey guys, Since you weren't there, I wanted to update you on Cam's Transport which went absolutely perfect.
As you know we headed out at 8:30 with a quick goodbye to mom and dad. Cam was brave, but she knew I had her back. Lifestar (the company that I usually transport with) picked us up. Our paramedic, Dan, was very taken by Cami and all that she has been through and is anxious to follow her progress. Charlie (EMT) also adored her, but who can blame them.
We headed out to BWI where we were got a text from BJ saying that he was on the flight (which made Cami VERY happy). After a quick call to mom to say she loved her, she was off.
Cami has become very observant of the time, so I decided very quickly that she had to wear the watch. Which we watched times. We knew that daddy was going to land at 11:30, so we counted down the time till then. Then we talked to the pilot and found out how long it would take us (the whole trip took 2 hours and 15 minutes.) So we counted down to that. Julia and Mandi's animals were close by the whole time, although Cami gave them to me and Chris to hold for a bit (always sharing the love.) Cami didn't want to sleep through the flight (she was anxious to keep an eye on the watch). She held my hands a couple times, but she was a brave little girl. I even got a few smiles. All that preparation paid off. Her oxygen saturations stayed about 95%. Once again, Cam stepping up to the plate. Once we landed there was another ambulance to pick us up. We called Daddy and Cami was happy to hear his voice. But then the watch-watching was much more to the minute. Cami wanted to know the exact time it would take us and watched closely.
We ended up in St. Louis (very nice hospital and as you know Cam has her own room with space.) This was the first time we started to see the tears. Cami was looking for daddy. The nurses hadn't told me that daddy was waiting in the lobby, but once we found out he was there, I said to bring him on in. It was a happy reunion.
I could not have asked for a more perfect transport or team. All our preparation paid off and kept Cami calm. And of course, she never ceases to amaze me.
Cami did say that we could get together after she gets her lungs. And I told her that Daddy and I would be having some good old football fun when the Eagles play the Ravens (which I might add we are going to beat you Bert.)
Give Cami hugs for me (yes, thats plural) over the next... well however long it takes you to come back home.
Love, Quick!
Weds 4/2
As surreal as it is to be typing this...we are being transported to STL tomorrow morning. Thank you for all of your prayers, positive thoughts, encouragement, donations, and or anything else thrown our way. This is a HUGE step towards getting Cami the cure she needs to lead a 'normal' life. I say 'normal' to illustrate how incredibly tough this kid is and how hard she has fought to survive. The last few days a blog was not written purposely because she had to 'pass' a few endurance tests...on regular air pressures and on the travel bi-pap machine. While challenged, she passed...so we're off to STL.
Other big news...there was a chance she had a fungal infection in heart (REAL BAD), but today we learned it was a calcified blood clot from years ago (how's that for med lingo). This is good news as we would not have to deal with a fungal process as previously described.
From here the road gets windier... I will do my best to communicate the process and progress. But rest assured, with her strength and determination, your love, prayers, and support, and the Lords blessings, we'll be back home together and stronger than ever.
Take Care... talk to you from STL!!
Sunday – 3/30
Cam’s weekend went pretty well. She managed a couple of successful sprints. Enjoyed visits from her sisters, Aunt Debbie, and SuZu. She has become more interactive and awake. Which is a catch 22…it’s great to see her alert and communicative…but unfortunately she realizes that she is stuck in a hospital bed. While we know this is a marathon…she’s already anxious for this ordeal to be over. But as hard as it is for us to get little rest and see her become sad and frustrated…we wouldn’t have it any other way!
The next few days will be interesting as JH speaks to St Louis. They will discuss her lung status as well as the fungal infection. So let’s hope for the best. These folks are very smart and we trust the decisions made will be the right ones for Cam. We believe, HOPE, and pray the question at the end of the day is WHEN, not if we are going to St Louis.
No matter what, her fight and strength continue to amaze and inspire us all! She has made great progress and the team in JH PICU are and should be proud of what they and Cami have been able to accomplish.
Thanks to all of you who have used our message feature to send your best wishes. We now can read your messages right to Cami now that she is awake.
And a special thanks to Tom and Andrea Scheidt who attended a Ravens Super Bowl reunion function and got some great pictures. They are on the Cam Power page of the website! Andrea said the guys were great and gladly ready to join the Cam Power Team. I’m proud to be a Ravens fan!
Thursday 3/27
Cam continues to do well with the bi-pap. In fact she sprinted (just air – no pressures) for 30 minutes today. We will make the docs take it slow because when we did sprints on the ill-fated extubation a few weeks ago, we think we might have worn her out too fast. The best part is, she did this while sitting in Carol’s lap for the 1st time in 2 months (picture posting is forthcoming)!
As far as the fungal infection…we are still dealing with this. We want to get to the point where her daily blood cultures have grown negative (no evidence of fungal) for 3-5 days in a row. She has not had a fever since the weekend, but we did see positive cultures grown from Monday 3/24. While she is on medication to address this, we understand these can be slow growing and the process can take a while. The only thing definite I can tell you is that it’s a wait to see how this plays out. The shame of it is…is that without the infection, we’d be making plans to get to St Louis.
Tues 3/25
Please forgive the delay in getting this update blogged. The big news is that Cami was extubated on Sunday at 9PM. It’s been about 48 hours and she has held her own. Due to the setback after 36 hours last time, we weren’t going to proclaim success too early or too confidently. The only thing worse then not getting the prize (in this case a successful extubation), is to get it and have it taken away. Well at this point we are very proud of her and she is tolerating a nasal bi-pap mask pretty well.
That said, I believe sharing the events of the weekend will give you some perspective of trials and tribulations we endured to get where we are today…
Thursday PM – Cami is doing well enough Dr. Hunt articulates the plan to continue the weaning and look to extubate on Saturday.
Friday – Cami is becoming agitated as meds are weaned off and she gets a fever, which puts the process of ‘precautions’ into action where we now test her blood for RSV and Flu and we have to where the gowns, masks, and gloves when within 3 ft of her for the next 7 days.
Side note – During the course of the week Cami had been and continued to lose her ‘line’s (a port set up in a vein or artery that blood or medicine can be delivered) Her poor blood vessels have taken a beating of these 7+ weeks.
Saturday – Fevers continue. Lost two more lines. BUT we had planned to move forward the extubation in the afternoon after giving her a blood transfusion as she was on the low end of normal and we wouldn’t want to transfuse after pulling the tube. So we used really the only line we had left which was in her left shoulder. Within the 1st 20 minutes, ‘luckily’ we noticed a bruise like mark at the top of her chest…the line had blown! This was a huge setback. So a femoral line (a port coming from an artery in the groin area) was implanted. BUT, yeast cultures grew from Friday’s blood tests…NO EXTUBATION.
Sunday – Happy Easter and Grammy’s birthday. Her fevers continue but as the docs conferred throughout the day and justified that her lungs are as ready as they’ll be - so let’s get the tube out. At 9PM we had the tube out and she was successfully on a bi-pap mask (face mask that uses pressures to force air in and out of the lungs). The bi-pap is very uncomfortable so Cami was up for most of the night. But at 5AM Monday morning, she began experiencing severe abdominal pain so no one really knew where this was going. But quickly we changed her mask from full face to nasal, and in doing so we were able to relieve some of the air pressures being sent into her stomach. It was a very anxious time.
Monday – She is doing pretty well on the bi-pap mask! No more fevers! But…the bruised area from botched blood transfusion had become infected with cellulitis (it looked like her entire upper chest had a terrible sun burn. While an antibiotic was started, we used a topical ointment to relieve some of the discomfort. And due to the yeast results from the weekend, through a series of tests they looked for yeast in her eyes, kidneys, and heart. At the end of the day, everyone was concerned where this infection might live and based on that what it could do to her situation and possible lung transplant.
Tuesday – Through the help of Chris McNelly, an neighboring patient’s Respiratory Therapist, he recommended and sought out a newer, and smaller nasal bi-pap mask which throughout the day helped Cami’s lungs a great deal and her numbers showed it…Thank you Chris!! At this point we will continue to support the process of getting Cami to the best possible respiratory condition. Unfortunately it’s a wait and see thing with the fungal infection. The results of which will dictate how we treat it and move onto the next step in fixing Cami.
Sorry for the long windedness..(my friends call me windy), but these words don’t even do justice to the stress, anxiety, exhaustion, fear, and exhilaration that we felt these past few days. I truly hope you were able to enjoy your Easter weekend with friends, family, or one another. PLEASE don’t take it for granted.
Oh, and sorry to Megan Quick who I willed to work on Easter. She was on call, but I told her I wished she’d get called in...well she did get called in – took great care of Cami and played a big roll in getting her ready for extubation that night (so I’m not really sorry!)
Take Care and say a prayer this infection is already on its way out and/or one that is readily treatable!!
Friday 3/21
Well it’s Friday of steroid week and the docs have been encouraged by small advances. But as our story goes, she got a temperature this morning…so Carol’s and my blood pressure are up a bit. But the progress made on her lungs is still apparent and we are looking to keep moving in that direction.
So many people have and continue to support us…and we can’t tell you how much each and every prayer, thought, and donation (food, money, gas cards, etc) have meant. Please forgive us for not naming everyone who has helped us…I’d be remiss if left anyone out. Everyone and everything are so very much appreciated.
But I do have give a shout out… Our love and thanks go out to Sherry McSweegan and the entire staff of Crofton Woods Elementary who over the last 6 weeks have brought us a complete dinner several times a week. The food has been delicious, abundant, and a blessing. It has taken so much pressure off making sure our family has the nutrition it needs to maintain our strength and stamina. I only wish Cami could have enjoyed it as much as we did…but don’t think for a second Cam doesn’t appreciate what was done! We plan on having her thank each and every one of you at CWS when she returns to school.
We receive daily thoughts from Joel Osteen’s Ministry out of Houston TX. We enjoy his teachings, where he combines messages of faith and positive thought. As many of you know, our mantra has been ‘HOPE’. It has helped us get through this and many of the hurdles the last few years. But yesterday, Joel’s message REALLY hit home. His message was centered around Psalm 62:5 which speaks of hope. So I formatted and printed Joel’s daily message and it’s sitting on Cam’s bed. But one part jumped out to us and I wanted to share it with all of you… The Bible says that faith gives substance to things hoped for. In other words, your hope gives your faith something to work toward.
That pretty much summed it up for us. Check out some of Joel’s stuff, he’s a pretty neat guy! Happy Good Friday…God Bless Everyone
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Tuesday- 3/18
Cam got her 1st dose of mega-steroids last night at 8 PM…(eat your heart out Barry!). While there will be no immediate results, but we hope to see what effect they’ll have by weeks end. But at this point there were no negative reactions. She’ll get her next dose tonight at the same time. We’ll keep you posted!!.
Sun - 3/16
So far nothing has grown from the bronchoscopy…which is good. We are hoping that stays the case and that we can move onto the high dose steroids soon. Her blood gases and sats have remained pretty strong. We are still trying to wean meds so making her comfortable is another goal. We just want to coast until we can see if the steroids help us get to the next stepping stone.
We had the pleasure of a visit from one of my best friends Brian Martucci and his beautiful and sweet girlfriend Crystal. It was such a shock to see him I could’ve fainted (wink wink). It was a great visit and I appreciated them coming up.
Today we expect Grammy and Aunt Betty to come in for a visit as well as her cousins Danielle and Will.
This week brought its share of drama…steps forward, back, and sideways. But through it all Cami has fought back enough to stabilize and give us hope for plans to move forward. I pray the upcoming week brings success and continued progress.
Thanks for checking in!
3/14 – Today it’s 6 weeks and counting….
Thursday was an interesting and anxious day (aren’t they all!!). Weds’s CAT scan came back and showed that her lung’s have worsened over the last year. Let me interject…that was no surprise to us, in fact we expected that…hence we’re moving toward a lung transplant. BUT, the radiologists suggested some of the affected areas could be interpreted as a possible fungal infection. So, through a number of conversations we decided to have a bonchoscopy done where they flush her lungs with saline and test that backwash for infection. With her condition, there was a worry as to how she might do with that procedure – not wanting to send her back to higher settings. The other concern is the possible fungal infection which might require a particular antibiotic that affects the kidneys. The broch was done in late afternoon and she handled it well! This will hopefully tell us what infection, if any, may be in there…treat it & clear it.
The plan then would to be to move onto a course of high dose steroids. Her lungs have consistently responded to steroid treatment (it has successfully reduced inflammation in the past). The steroids may get us closer to getting her extubated.
She has not had a fever since the ONE Weds afternoon. So it’s now a wait and see what comes back from the bronch cultures which will take a few days.
I hope I am doing justice to her story of stamina, strength, and perseverance. She continues to amaze and inspire all who know her (doc’s included). CAM POWER!!
Weds 3/12 – The road will be bumpy…
We were cooking with gas there for about 4 or 5 days…making enough progress to give the docs hope to extubate and get us to St Louis as early as next week.
Well, the best intentions blah blah blah… Cam had a subtle set-back in that she needed a bit more vent support on Tuesday. So the doc’s plan on getting a CAT scan today, and in the coming days get a better feel for her baseline lung function. When we know that, we’ll know better when, where, and how the lung transplant will play out.
I’m not going to lie…this was a punch in the gut. The planning and conversations with St. Louis were real and fairly immediate. Now things are on hold a bit and time will tell. One thing is for sure, she’ll have good days and bad…but we know she’ll keep fighting and make amazing comebacks.
Keep praying and wear that CAM POWER proudly to help us get back on track.
Sat 3/8 – The last few days have brought continued progress. To the extent we are hoping for extubation early next week. The vent weans have been met with good gases so we keep going in the right direction slowly but surely. A GREAT couple items to note…
On Friday Dr Mogayzel confirmed St Louis has reviewed her file and has invited us out for a transplant consult. Next steps…St Louis needs to confirm insurance coverage and Cami needs to get closer to baseline (nasal cannula). So we are hoping to make that visit in the coming weeks!
Also on Friday, the Crofton Men's Poker League held its monthly event – but did so to benefit Cameron’s Assistance Fund. It was designed where half of the buy in and all rebuys went to her charity. Unbelievable generosity (and real bad poker playing J) allowed the guys to raise over $1000 in just over 2 hours. As I told the guys last night, this was yet another example of the love and support of the community, which we so truly appreciate. Every dime will be dedicated to getting Cami thru this and back to her friends and loved ones as soon as possible! Photos of the poker event will be posted shortly. Until next time…THANK YOU!
Wed 3/5
The last few days have been quietly GOOD. We have seen a series of good X-rays and successful weans. The docs are talking about a move from the occilator to the conventional vent which is another step in the right direction. This of course brings the next challenge…sedation is weaned so making her comfortable can be tricky. But hey, its the right problem to have! We’ll let you know how the next day or two go, and be in touch soon. Thanks again for the love and support.
Sun 3/2
Tiny steps forward... Xrays continue to look good. Small weans on the vent have been successful.
This weekend Mix 106.5 conducted their radiothon. The folks at JH thought Cam's story would be great for the radio folks. So this morning, JoJo, Regan, and Sara interviewed Carol, Julia, Amanda, and me. I can't speak for myself, but everyone sounded great - I am very proud of our family, our story, and our strength! JoJo is going to email me a copy of what aired which I hope link to the blog.
Until the next blog...baby steps forward!!!
Picture of Cam's day of beauty!
Friday 2/29/08
Wouldn’t it be appropriate for Cam to make some large strides on ‘Leap Day’. Well the doc’s rounded this morning and had some good things to say. The best news being that Dr Nichols thought her morning Xray looked pretty darn good. Over the last 36 hours they had been thinking she had gunk in her lungs and were hoping that suctioning would get a good bit of it out…but not much was coming. So Dr N said we’ll stop trying so hard, keep her comfortable, and let her get better. One week ago we had a very trying few days. We’re grateful this week has brought more progress than setbacks. Ya know, Cam’s a Terp at heart – so if she gets better nice and slowly – it’s only natural. Aunt Debbi’s planning spending Friday evening with her and I know they both are very much looking forward to it….you know – girl talk! PLEASE KEEP CHECKING THE WEB AS PLANS ARE COMING TOGETHER FOR A VERY EXCITING EVENT. THE DETAILS ARE BEING PUT TOGETHER BUT REST ASSURED IT WILL INCLUDE FOOD, FUN, AND A LOT OF CAM POWER!!!!
Wedn. 2/27
Monday and Tuesday have brought slow and steady progress…but progress nonetheless. Her kidney function has continued to get better…an indicator of that is her Creatinine level which was trending up last week (BAD) is now trending down (GOOD), and she continues to pee like a champ. On Sunday we were told she had developed a pneumothorax – an air pocket in her chest cavity likely caused by the pressures of the ventilator. While this can be corrected by a procedure, the docs wanted it to diminish or go away by reducing some of the vent pressures…which looks to have happened. Her lungs remain status quo (we think that’s a good thing - ??), but Dr Nichols our new attending cautions us that getting her lungs cleaned up from last weeks trauma (the aspiration in particular) will be an enduring process…he expects no less than several weeks. Dr. Nichols explained last night that the body has to absorb what was aspirated and that simply takes a while. So in the meantime we’ll keep her comfortable, let the really smart JH folks get her the care and nutrition she needs, and continue our quest to St Louis! We’d like to wish Megan Quick a safe and fun trip to New Zealand…hurry back Cami misses you already. Megan promises to bring ‘Cam Power’ to NZ so look forward to posting some great pics when she gets back. Until our next chat…peace and love.
Sunday 2/24
Its been roller coaster ride over the last few days. She did go back on the ventilator on Thursday morning at 3AM. It took a couple of tense hours to get her settings right, but by mid morning she was again moving in the right direction. She did so well for the next 24 hours, on Friday they tried her on a ventilation called APRV which she did OK on but had to go back to the ocillator over night. On Sat morning though, the doctors became concerned about her kidneys as her renal function was becoming very weak. This was a big concern as we do not want to have to go to dialysis. Well, as nurse Megan Quick put it, "we saw another Cami Comeback'. Thru the day on Sat we saw her urine output get better and better. We exactly don't know what happened or is up with the kidneys, but we hope it was a temporary setback called ATN (Acute Tubular Necrosis) where a jolt to the body (a medication or procedure given) shocks the kidneys and they stop doing what they do. Lets pray they are fine, and just needed a little R&R for a few hours. We've never been so happy to see pee.
The other big news...the process is officially underway to pursue a Lung Transplant. Two things are in motion, 1) get Cami better - out of PICU and on her baseline oxygen need, and 2) her Pulmonary Team is putting her 'story' together for the transplant team at St Louis Children's Hospital to review. Once Cam is back to her baseline, its likely we will be off to St Louis for a consultation. When she IS deemed a candidate and IS listed, we will be in a waiting mode for a pair of lungs. There are so many unknowns at this time that we couldn't begin to provide any more details - just know it gives us a road to pursue to make her better.
I used to like roller coasters but this one has been the scariest and I just assume get off! These days have had some lows but Cami as usual, amazed even the very smart folks at JH. Although there are so many Dr's, Nurses, RT's, Techs, etc to thanks as they have played such a big part in helping Cami thru this, I have to give shout outs to Dr's Harris, Nelson, Spader, Jacobson and Yang....RT's Chris, Chris, and Rick, and particularly nurses Megan and Renee. Cami has a way of winning the hearts of so many...but Megan and Renee have come to mean so much to us because we mean so much to them.
We'll be in touch soon with updates to Cami's progress. She's fighting so keep praying and thanks again for your love and support.
2/21
Cami had a step backwards last night and is back on the Ossilator. Just too tired. Keep the CAM POWER going strong!
2/20
All the Doctor's are smiling when they "rounded" this morning, why? because Cami is so cute, oh, and... she is off the ventilator!!! Dr Watson (who put the tube in - so has vested interest in it coming out) tried at 8pm but Cami threw up (she told him!) they tried two hours later and she is a Champ!! She is on CPAP (don't worry BJ and I don't really get it either) pressure support while they do "trials" to see when she can go back to nasal canula probably next 24-48 hours, so some days are to be remembered as "red letter" today is one!
Everyone here seems to be so surprised when she does so well, little do they know all the CAM POWER that is being send up here, thanks to all of you!
2/18
Cami makes improvements everyday, the doc's here are even talking about "extibating" her, (taking her breathing tube out) very soon,they want to be cautious because of her lung "condition" but still we love to hear word like "pleased", "delighted", even "thrilled" and yes they have said those words. Please keep praying and wearing your CAM POWER, kids do amazing works everyday, we are living proof!
2/16
Its Sat night at 1:15. She had good day. Her vent was weaned a couple of time and tolerated less sedation so that she could show the doc’s that he is doing more and more on her own. Her blood gases continued to look. But progress doesn’t come without leaping a few hurdles…right now her temp has risen, and her heart rate is up…each of which could be for a couple of reasons that these really smart people at JH are figuring out.
Lets just hope Cami will make as much progress in the coming days as she has in the last few!!
Thanks for checking in…our love and appreciation to you all
2/15
Well, Happy Valentine's Day, Cami was successfully transferred from the Ossilator to a conventional ventilator yesterday. I wanted to wait 24 hours to make sure she was handling it well before I blogged it. So all is well, she is "weening" nicely and is more awake but that can't be easy with a tube down her throat... UGH, anyway, one big step, horray!!
CAMPOWER is working, keep sending the vibes
2/13
Cami wanted to give her grandmother, Zuzu, a big present today for her birthday by going to a conventional ventilator but the Attending Doc tried and seems to think it might hurt her lungs so he will try again tomorrow, and every day until she gets better. She is off of nitric oxide (good) and is "weening" a little bit each day so still moving in the right direction, still gets a low grade fever, and with all the antibiotics she is on, the infectious disease doc's don't want to change anything unless she gets worse... basically we are keeping her happy and sleepy until her body can recover.
Please keep praying, God is holding her in the palm of his hand while these really smart doctors figure out how to fix her.
Sunday 2/10
On Saturday morning around 9AM, Cami's sat's dropped, blood pressure increased and O2 requirements went up. It was frustrating because progress was being made. We think it may have been a reaction to a med. So we restarted a couple antibiotics that had been stopped and upped her vent support. As a result her sats and other related measures came back in line.
She had a good night and while we have been weaning her vent slightly, the docs want to take it real slow. When I asked Dr. Mogazel for words of wisdom this morning, he said confidently, "time". So that's what we'll give her! Father Paul came by to bless her and we all said a prayer.
All for now...keep up the Cam Power vibes. And thanks for the love and support!
2/8/2008
The doc's just came thru and are happy with her status and progress. She is moving in the right direction. Albeit yesterday we tried to move to a different ventilator but were unsuccessful. Not a major setback but it would have been a positive step forward. SO today the doc's are happy but plan to take it slow so when we try the next vent - it WILL work. So today we will see a slow steady progress of weans to get us to the right place for the next steps.
Thanks again for the love and prayers! Cam Power!
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Cam's Door
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IV/Meds Tower
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2/7/08
thanks for all your love, support and prayers they seem to be working. Cami is still on a oscillator, we tried to convert to the conventional ventilator but her CO 2's went up too high so they switched back, oh well, not so much a step back but a try and she is still amazing.
The pics attached at of one of her nurses, Megan, who was constantly positive, hopeful and definitely earned her CAMPOWER.
Please keep wearing your CAMPOWER to show support, hope and her strength throughout this difficult time. The more it is worn by people who love her and know that she will get better, the more she does, and every day she does get a little better.
2/6/2008
Okay so yesterday was scary. Cami got worse And by 4am was intubated, during which her blood pressure dropped. UGH ! NOW, she is sedated, seemly happy, on a ventilator, and hopefully going in right direction, everyone here, nurses and doc's, are great and have fallen in love with her....And are wearing....Campower!!! Please keep us in your prayers, I know the big man listens , miracles happen every day
2/5/2008
Cam was intubated this morning. Still the same otherwise. Carol is very tired.
2/3/2008
Cami was put on a "bipap" machine around 10pm last night, it helps her get better "faster" says Chris the RT. as you can see from the photo, it it uncomfortable to wear but definitely bearable, and she is so cute! We are praying for a "turn" I like to say. I want her to just turn the corner, she doesn't have to make a full recovery, just a little something to let us know that she on the road to recovery. Maybe that is happening right now as BJ watches the Superbowl in her PICU room (yup we have a tv - nicer than our own at home, flat screen) if only the nurses would sell beer, we would have something, hee hee, I got 2 hours of sleep this weekend so I am very tired but please keep praying and I will update when I can. When she was awake today, Michelle Zurcher came up to visit and helped Cami paint and work on her Valentines for her class at school, very cute!
2/2/2008
Still in PICU. The pic is Cami happily in her dad's arms. she is up to 5 liters of o2 and asks every hour when can she go home? All the docs are hoping it's a virus and that it will run it's course quickly
Keep us in your prayers. Here is a cute pic of cam's slipper with her ET like big toe glowing from a 'pulse ox' monitor.
2/1/2008
Well, Cami went to school without any troubles the entire month of January, hooray!
Bad news: she woke this morning with flu like symptoms and by noon we were in the ER of JHH, she is now in PICU and Dad is staying with her while I get the other two together. Basically, Cami is fighting something that right now is undetermined until the tests come back or her breathing gets better we will be there: she is on 4 liters of O's, her base line is 2 and she is breathing very rapidly, 80 instead of 60. Please keep us in your prayers, and check the blog for updates. here is a pic of MOM and Cami in ER before going to PICU.
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