Estelle is home doing well....

Estelle looked wonderful last night when we stopped by for a short time. Her discomfort seems to be manageable, and her spirits are good. Bobby and Estelle are so grateful for all of the thoughts and prayers! It looks like we have dinner covered now for the next 1 1/2, so they think they should be able to handle things after that. They are VERY grateful for all of the offers to help! They are touched by the love and generosity of all of you. Thank so much for loving them, as much as we do.

Estelle is home!!

We just got the GREAT news that Estelle is being discharged from the hospital today. She is looking forward to sitting out on her porch later to get some much needed fresh air. She has had nothing but hospital air for 2 weeks now. Her spirits are high, and she is feeling so very blessed.

Many of you have asked how you can help, and one helpful thing is meals (low sodium). This is one thing less for Bobby to have to do. They are currently covered through through Monday. Also, offers here and there to go to the store would be great, or to sit with Estelle, so Bobby can get out, would be wonderful too. Please, if you have any other ideas, feel free to share. Also, please keep in mind....Bobby is not one to ask for help.

We are so happy, "Grandmommy" is coming home!! Little Sydney is running around in full excitement that Estelle's "booboo is better". We feel blessed by this miracle God has given us....more time...more good memories to make, with Estelle.

We love you Estelle!!
Christy

defibrillator/pacemaker placed

Estelle just finished up in surgery.  She should be back in her room soon.  Dr Gilligan was able to successfully place a defibrillator/pacemaker.  It was tested, and appears to be working as it should. Dr Gilligan was able to get Estelle out of "atrial flutter". This is great! The plan is to monitor her and continue to use the new medications, and see how she does.  The doctor seems to be optimistic.

More about the defibrillator/pacemaker: The device is set up to "shock her" if she needs it, and to regulate the amount of times the heart beats in a minute, when it needs it.

****Update: She just got out of recovery and is back in CCU, same room.

Thanks for the continued prayers!  God is granting us our miracle! Thanks be to GOD!

Christy for the Davis family

Cath results

Estelle just finished up her cath today.  Dr Evans (cards) said Estelle did great.  She is in recovery right now, so hopefully we will be able to see her soon.  The cath showed no blockages, and no real leakage from her mitral valve.  This is wonderful!!  Prayers have been answered!

The plan:  Dr Gilliam had talked to Estelle and Bobby before the cath.  He said if they did not find anything structurally wrong in the cath, then he would plan to place a defibrillator tomorrow.  This means, if everything continues to go well....there could be a possible discharge by Friday?  I will keep your posted.

Many of you have offered to help when they get home....so I will keep you posted.

Many thanks, and please keep the prayers coming!

Christy

A-fib

Estelle continues to have an irregular heart beat today. She also continues to be off the herparin, because of the blood "seeping" into the pelvis. She is having some discomfort in her legs. Her legs have a numbness sensation in the upper thigh area. This is uncomfortable for her.

The cards doctor came in today and was not happy about the a-fib continuing. He decided to try her on a med to try to correct this issue. If this does not help....then may have to sedate her and take her down to have a little procedure done. This would entail "shocking her heart" into sinus rhythm. The plan is to try this medicine soon. The doctors/nurses have to watch Estelle closely when giving this to her.

Update: While working on the update, it looks like Estelle may be back into sinus rhythm. YEAH! They will not need to "shock" her or give her more meds.

Keep the prayers coming! Love from all of us.

Christy for the Davis family

MRI led to a CT

Last night, Estelle had an MRI of the abdomen and spine.  They were concerned about what they saw, so the sent her right away for a CT.  The CT gave a better view of the problem.  It appears that some blood has "seeped" out due to the heparin (blood thinner), and the blood settled into her pelvic area.  The way she has been laying in bed, might be the reason for the area in which the blood settled.  The nurses and doctor knew her hemoglobin was down, and that she was loosing blood somewhere...
They are not concerned about what they found, and this should resolve on its own with time.  They stopped or held the Herperin since yesterday, but will decide whether they will put her back on in again later.

Estelle spent a good amount of time in sinus rythum this morning, but has been jumping in and out of a-fib this afternoon.  Her blood pressure has been a little low, but all of this is a balancing act getting her on the right meds and the right doses for her.

Estelle's pain seems to be managable today.  No morphine has been needed today.  She still has some upper leg numbness, but she is able to move them more today.  She slept VERY well last night, and she is "bright eyed and bushy tailed" today.  She has a great sense of humor and is going with the flow.  Bobby has been reading up on the EP study (electrical study), and about the difibulator.  The cards doc has not rounded yet today, so we will know more later.

Thanks as always for checking in. Thanks for the continued prayers,

Sending lots of love,
Christy for the Davis family

The plan that is always changing

Sorry for the delay in update.  Internet issues in the hospital, and a dead computer battery......

Today has been a day for changes. Last night Estelle's pain leg/pelvic plan increased and spread.  She has been very uncomfortable...she feels as if she has over exercised.  Dr Evans (cards) was concerned about the location of the pain.  A cath would be placed in the area of the pain which, he feels, is not a good idea.  They need to know why this is happening.  Dr Evans paged Dr White (neuro) to come a assess Estelle.  Dr White pricked Estelle all over her body to see if there was any difference in touch.  Estelle felt some difference in her legs.  She is having issues with moving them up.  She feels like she just cannot..or it is just too sore to move.  Dr White ordered an MRI, and it is scheduled for 6:15pm this evening. They will be looking at her core (tummy area) and her L-spine and t-spine.  We hope we will know more soon. Waiting is so hard, and frustrating.

Now that we are going into a holiday weekend, and even if the cath was still possible, the Dr who places the defibrillator will be "off", or in his office until Tuesday.  He will not be able to do anything until Wednesday. Estelle, as for the rest of us, were a little frustrated with good reason, and he was sharp with Estelle and walked out of the room.  UGH.

On a positive note, Estelle looks as pretty as ever!  She is talkative, has a great sense of humor, and is quite the good patient. She is enjoying all of the messages left (we are reading them to her) and knowing all the people who care about her and that are praying.

We will let you know more as we find out.  Please pray for quick answered and easy solutions.  Thanks for checking in!

Christy for the Davis Family

A plan

Today, Estelle is doing well.  Her heart rate continues to go up and down---but this is being controlled with medication.  Her lungs are sounding better and starting to clear out some.  She has been working hard doing the recommended breathing exercises.  What a good little patient she is!!  The lasix is also doing its job too, helping the extra fluids get off.  Estelle is sitting up a lazy boy, feeling like chatting, and less groggy today.

Tomorrow, Dr Evan's, her cards doc, plans to have a heart cath done.  They have it scheduled for after lunch time.  Hopefully, we will be given some information into why this happened, so we can make sure it does not happened again.  There is talk to a possible defibrillator, but the cath will tell what the next step will be.

Thanks for all of the love and support, and please keep the prayers coming!

Love from all of us,

Christy for the Davis family

Estelle--Recovery is a process

I had a few people ask if I would continue to keep this carepages going for Estelle, and yes, that is my plan.  Once she has recovered, I will return to using this for Sydney.

Estelle is doing well, but as you know recovery is a process.  Last night, she went into atrial fibrillation. "This is the most common cardiac arrhythmia (abnormal heart rhythm)and involves the two upper chambers (atria) of the heart. Its name comes from the fibrillating (i.e., quivering) of the heart muscles of the atria, instead of a coordinated contraction."  The Dr Evan gave her meds to lower her blood pressure and heart rate (which was averaging between 125-155 beats per minute). A-fib bothered Estelle, because she could feel her heart working hard.  The meds that were given helped, and decreased her heart rate and blood pressure.  This rhythm issue was not a surprise to the doctors.  This is not uncommon after someone had a cardiac arrest and needed to be "stocked"  Her hearts is irritated from all that has happened to it and needs time to heal.  Estelle, has some Atelectasis (small partial collapse--or known as "junk in the lungs").  This is also normal.  With deep breathing and coughing this will improve with time.  I know when Sydney was in the hospital, this always happened and also cleared up.  Lastly, Estelle is holding some fluid, creating some wetness in the lungs.  Lasix, a diuretic, has been given to help her get the extra fluid off. Again, all of this is part of the process.  Estelle is recovering very well. She is VERY happy to be alive and with her friends and family.  She is completely alert and aware of what is going.  Dr White, Neuro) is very happy with her progress.

Please continue to pray for continued recovery.  He is listening.

Love from all,
Christy for the Davis Family

Love those baby blues......

Estelle has had a big day so far...and the day is not over yet!

The meds are slowly leaving her body, and Estelle is more and more aware of her surroundings.  The doctors took her breathing tube out this morning, and now she is on O2 (5 liters).  Her color looks good.  Dr White (neurology) came in to speak to her.  He is quite the character.  He is a big (tall) man with a booming, yet friendly voice.  Estelle responded quickly and positive to him.  She was not sure where she was, but she recognized Bobby, Steve and myself.  Estelle knew she has 2 granddaughters and told us their names.  She had the sweetest smile on her face, and it was nice to see those baby blues again.  Dr White continues to be cautiously optimistic with her progress.  He does not like to make promises, but things are going well.

Estelle has been uncomfortable at times.  At first is seemed general, but as she woke up more, she was able to say her pelvic area was the source of pain.  They are checking her for a UTI.  Estelle is taking medication by mouth, drinking a little fluid and sucking on ice.  She keeps asking us, "what happened".  She keeps hoping this was all a "bad dream".  With some time, and more of the meds out of her system, hopefully her short term memory will improve.....she said it was hard to focus.

We got the results of the heart ECHO.  Estelle's "ejection fracture" (strength of function of heart)  is normal!!  This is wonderful!  She does however have some stenosis (narrowing) near the Mitral valve area and some Mitral valve leakage.  The information was not surprising.  This has been being monitored by her cardiologist.


Thanks so much for all of the prayers, meals, visits, emails, babysitting, and so much more!  We could not being doing this without you all!  Thanks for giving us strength during this difficult time.

Love you you all!!

Christy for the Davis family

Positive signs

At 12:30m pm today, the doctors started to "warm" Estelle.  This is a long progress, but as of now she is near a normal temp.  She has been moving around a little. Estelle began to look like she was fighting the breathing tube a little, so the staff and doctors made the decision to medicate her this evening.  Bobby was a little disappointed, he would not be able to talk to her until tomorrow. The staff will keep her comfortable tonight and plan to pull the breathing tube in the morning.

The neurologist did an EEG and a small assessment... just a few moments ago. Dr White said he is "cautiously optimist". Estelle is having a lot of brain activity, she is not having any seizures, and is able to open, then shut (and keep shut) her eyes, on command.  He said when Estelle can speak, and she is not so medicated, he can do a better assessment on her.

Things are where they should be at this point.  Keep on praying, He is listening.

Still waiting to hear the results of the ECHO.

Thanks so much! Love to all!!

Christy for the Davis Family

Life throws you punches, and we got hit.

Today, is not a day I will talk about Sydney.  She is doing great.

Today is a day about "Grandmommy" (Steve's mom).  Today, we need prayers, and lots of them. Today Estelle went to church and went into full cardiac arrest during service. There were no warning signs.  There was no slowing down on her part.  No signs of being out of breath. Nothing. This was just out-of-the-blue!!

God was on her side...a few Nurses and EMT's were attending service that day.  They gave her CPR right away.  The local Emergency gave Estelle a few "shocks" and took her to the hospital. Estelle was "cooled" right away...the newest technology out there. By colling her down (done with icepacks) will improve her chances of recovery and quality of recovery (ex preventing brain damage).  This will give her a fighting change.
http://blog.vcu.edu/healthsciences/2009/11/resuscitation_and_survival_rat.html

Please keep her in your thoughts and prayers.  Only time will tell what the outcome will be, but we remain positive. The church, friends, EMT's and hospital responded quickly...so she has so many things on her side...and she is tough...nothing gets her down. Keep on praying. Time will answer our questions, but God is listening to our prayers.

6 month post op-visit

I have been terrible about keeping up with my posts lately. We got home from the hospital, and hit the ground running....literally. It's strange to see that life just keeps on going, with or without you....despite whether you have a sick kid in the hospital or not. It has taken forever to get caught up (even with the help of others---God bless you all!!), and I am really still not there. Oh well. I have learned some of these things are just not that important. Spending time with my family...is the most important thing ever. Cherishing ever moment of every day...is the most important. And of course for me...helping others, continues to be important.

Today, was a big day. It has been 6 months since we got home from UVA. 6 months of recovery, growth and development. 6 months of emotional healing for all of us. Sydney looks so good! She is pink. O2 levels 95-96%. I hoped the appointment would show me what I believed to be true.

Sydney's pacemaker was checked by Metronic, and no changes needed to be made. She is doing great on the settings that were made at the last appointment. Because of the settings, Sydney is not using the pacemaker as much. Metronic said Sydney should be able to get 6 years out of the battery at this rate. Great news!!

Dr Falterman was excited about how much Sydney had grown. 33 1/2 pounds, almost 40inches tall, blood pressure good and Sydney pinkness! Her liver was still down, but soft at 2 inches....which is normal for her. She did notice Sydney's murmur was different then before. Dr F did a very detailed ECHO to see if she could find the source of the noise. There is a collateral vessel that has opened up attached to the Glenn (2nd surgery she had). It could have possibly opened up when Sydney was having Pulmonary Hypertension. This collateral is not hurting Syd at this time, or affecting her O2....so we will watch it. The good news is, should it need to be fixed, it can be done through catherization...not another open heart surgery.

Dr F plans to slowly change Sydney's medication. The Viagra will be taken down to 2x a day. We will try this for a month, and see if Syd's O2 sats are effected. If they are not, then Lasix will be removed next. One small baby step at a time. Sydney's body will need to take its own time getting used to the changes.
Well, this is all good news. The vessel development rattled me a bit (I could feel my heart sink), but all in all, she is great. Sydney has grown so much, that she never fell off the growth chart. She made up for the time being sick...in a matter of months. Sydney.....you amaze me!!

Thanks for checking in:) Also, thank you all for the ongoing love and support. So many of you have helped us in so many ways, and I cannot being to express my gratitude towards you all. I have always said, "it takes a village to raise a child,"....so thank you all for being in our village.

Love to you all, Christy

New pics--Learning to edit pics

Just because recovery is done and fun has begun........

We are still here......

We have been home for about 2 weeks now.................and things have been non-stop.....from making and going to doc's appointment,endless medication, tracking Syd's weights, tracking in's and out's, incision care (it was trying to get infected), Sydney's trauma, and many nights with one child in the bed with us (Aubrey was having nightmares and Sydney was afraid to be alone). Our solution, many, nights was to have the girls sleep together--to ease their fears and anxieties. Steve and I still do not know what has hit us. We are dealing with all of this in our own ways. Just trying to wrap our minds around what just happened..... Our lives have been upside down for so long on....more so...since October. We are so happy that Syd looks so good and is acting so great. She is running around.....she is not out of breath.....she is not blue....and she knows it. "Momma, my lips are pink...not blue." The most emotionally filled quote from Syd was a few days ago. She was running with her best friend Claire, pushing their babydoll strollers. While running, Sydney looked at me and said, "Momma, I not outta breff anymore."

We are home!

Thank God and all of the Angels above...yes we are home...as a family. My two girls have been joined at the hip since the moment they saw each other. Right now, they are both asleep in Aubrey's room, together. So sweet! Sydney looks so much better...so pink, and she her energy level is so much better. It is hard to believe her O2 sats are ranging between 90-95%.

I am keeping this short tonight, as I am VERY tired. Thank you all soooo much for your love, support and prayers.

Goodnight to you all,
Christy

Sydney and all of her glory

I was included in rounds today, so I could get any remaining questions answered. We tested albuteral and now have an "asthma action plan". Her x-ray was taken (looks good, but waiting for the official word). Sydney's pacer was been adjusted (in Atrial pacing 86% of the time, and Ventricular pacing 23% of the time). The only way to totally override the junctional pacing is to give Sydney meds, and she is doing fine the way she is, so we are leaving well enough alone. Cards is happy with Syd's progress. They just wanted one more night to just make sure all is well with her. Cards is about as gun shy as I am right now, after seeing how sick Sydney was.

She's back!! Sydney is running, jumping, prancing and singing. She is still very traumatized by all that has happened (hides her face when people talk to her and saids, "Mommy"), but boy does she have energy!! I love it! My girl can run!! It has taken 4 surgeries, 4 caths, and a team of people (friends, family, nurses and doctors) to get us here! Wow! What a ride, but boy is she ever worth it! I hope when we are discharged tomorrow...yes, that's right...discharged after 22 days in the hospital, we can try to return to a somewhat "normal life".

Thanks for all of your continued support and prayers. What a blessing you all have been.
Love to all,
Christy

Watching and waiting

Things seem to remain about the same. An x-ray will be taken tomorrow to make sure Sydney is not developing any infusions (fluid around the heart) which would require her to need a chest tube placed. Dr Matherne, head of cards, wants to be cautious about discharging soon early. I agree! We will not push to be d/c'd.

We were transferred to the floor today, and put into a room with another child (a 17 year old girl). This situation is not ideal....but it is what it is. We were a little spoiled having our own room. The family is nice...just a little lack of privacy for all involved.

Sydney continues to have a good and happy spirit. She has even been a little sassy! That's my girl, feeling better! Sydney has been playing and walking a lot today. She loved visiting with Kirby and Susan today...lots of drawing and [laydow fun to be had. She would not take a nap today (normal for well Sydney) and crashed before 8pm tonight! I am still seeing her having ventricular pacing, and I informed the staff. The resident took a look at it, and said she was ok...but would let cards know in the am. Pulmonary also plans to do an albuterol test tomorrow on Sydney...so we can make an asthma action plan before we go home. Sydney is eating a drinking better. I do want to know what are the acceptable heart rates for Sydney when active though.

We will let you all know what the plan is tomorrow--when we find out. I am going to cuddle with my little girl. So good night to you all.
Love,
Christy

Sydney is pink

Poor Little Sydney did not feel real good last night after her cath. The meds given to her to put her to sleep, made her vomit, and it just took time to get her stomach to calm down. Last night, she slept hard. Sydney woke up this morning ready to take on the world. We were able to get her up, still hooked to telemetry (so her her sats, heart rate and heart rhythm could be watched) and walked the whole unit. She was so excited to be on her feet! She started slow....but transitioned to prancing...then to running. She really tested out her pacemaker, and really got her blood pumping. She would rest for a bit, then did it 2 more times. Sydney was so tired from all of the hard, yet happy, work she had done...she managed to fall asleep before dinner. Cute! Her color is so different now. Sydney's underlying color is different, and her nail beds are no longer blue. This is all good. God is good! Our prayers have been answered! Thank you God!

Sydney has orders to be discharged to the acute floor, but there were no telemetry beds available. Maybe tomorrow? It would be nice for her to have a little more freedom. Anyway, cards is thinking about possible discharge on Monday? They said she has been sick, very sick, for a long time now, and they want her well a little time longer. We want to make sure she does not crumble again. Steve and I will keep her here until they are sure. We hope when she is home....we are home for good.

Thanks for all of the love and support! We have really needed it!

Love to all,
Christy

SUCCESS

Sydney just came out of her cath and it was successful.  Dr. Lim closed the fenestration and her saturations came up into the 90s!!  SO AMAZING.  Can't wait to see her pink!!!

The plan that is always changing

This whole process with Sydney has been very tiring, so tiring, I could not update last night.  I went to bed instead....snuggling with my 6 year old.

Yesterday's update: Sydney had better sats today (upper 70's lower 80's)....but only when laying down or still.  Her O2 levels drop big time with any exertion (in the 50s) just going potty...just standing up would make her sats drop.  What is going on!  What is this happening!!  The PICU  recommended Sydney go on bed rest....not even get up to potty (use a bed pan). Cards did not think that was absolutely necessary...just do what she can tolerate.  We had some hard questions for cards, and needed them to be straight forward with us.  Cards is really not sure what is going on.  Syd is a "bit of a mystery".  Some of the docs thought Sydney's fenestration just needs to be closed....that is if she is ready now with all of the med changes.  Others, though a cath needs to be done to see if there have been any other changes...and they are not sure if the sats drops during exertion will help. Blood work and an Echo of the heart have been done....all coming back good. The plan was to set a meeting with Dr Lim, and see what he thinks can been done through cath. They will continue to monitor Sydney is a save environment, by keeping her in the PICU. 

Today---- Sydney's sassy spirit is making a come back...she is a little fighter. Her "resting O2 sats" continue to be upper 70's to 80's.  They staff have weened Syd to 1 litter of O2---but again it does not help that much--but it is nice to feel like we have a little something there to help at least a little.  There was a meeting of the minds today, discussing Sydney.  They have all come to talk to us about the plan, and what they think is going to happen.  Everyone has a little different take on the matter, so I will try to make a little sense of it.
1)Pulmonary has decided  Sydney's lungs are great (clear-- best they have heard them) and the cards at this time is the primary issues.  Once Sydney is better, Pulm wants to make a asthma plan, so we will know what meds we can use when Syd has problems at home.
2) A heart cath will be done Friday afternoon.  We do not know what time yet.  
3) The cath will be done under sediation, so she will not need a vent
4) Pressure will be remeasured and look at what progress we have made since Sydney hashad a pacemaker placed, put on Viagra, and is not in  fluid overload anymore.
5) If the fenestration can be closed, it will.  This will help the sats.  If she ends up looking good for closure, but later does not adjust well---she will get fluid on her liver again and her face will swell and get red.  Then they would need to go back in through cath, and put the fenestration back in. UGH...to all of this!
6) See if there are any other "bypasses" that have filled because the hemo-dynamics have changed so much.  I hope this it it and they can coil (close) this bypass, and things will be "fixed".
7) Adjusting the pacemaker to a higher rhythm to see if this give her the needed pressure she needs to create better flow throughout her body.

I hope this is making since, because frankly, I am just trying to figure all of this out myself.  Please continue to pray for my baby girl.  Please, pray the doctors can find her problem...and please God let the problem be easy to fix.  I want to see my little girl run and play again.

Thanks as always for checking in.


Love Christy

An new plan

Sydney was transferred to the pediatric ICU this evening, which frankly, I found relief in. She was continuing to have unstable O2 sats on 4 liters of O2 and blow by O2. Sydney was desatting while being carried, on O2,to the bathroom to 50%.  This is scary stuff.

The PICU, has a new plan for Sydney.  They saw inflammation in the lungs that resembles the way asthma looks likes on chest x-ray.  They thought they would to try and treat this like asthma by add add'l breathing treatments.  The PICU thinks all of this me be a result of family history and the H1N1-- and not just the pulmonary edema (which they thought was better).

I am REALLY tired from the lack of sleep last night.  Syd is currently stable and resting with Daddy this evening. Please keep the prayers coming, and thanks again for all of the love and support!

Love,
Christy

The Plan

Christy and Stephen really wanted a plan, and now they have one. 

This morning was really difficult.  Sydney started off the day on two liters of oxygen.  She was having lots of desats, so Christy tried to get her out of bed and walking because that's the best way to open up her lungs and get them on the right path.  Yesterday she managed two long walks.  Today she made it less than fifteen feet and then melted down, sitting down and refusing to move.  She was so panicked that she earned herself a pulmonary exam right in the middle of the hallway.  Her sats at that moment were in the 30s.

When they got Sydney settled back in her bed, she required four liters of oxygen AND blow by in order to recover back in to the 60s.  After a long nap, she seemed to stabilize in the 70s.  She's still on four liters of oxygen, but her personality has rallied and she's currently working on an art project with Daddy. 

Syd's pacemaker was "interrogated" this morning, and turned down a little bit because she was having some runs in to the 130s when she was up and moving around (walking to the bathroom).  She was on a medicine (atenalol) to lower her natural heart rate so it wouldn't compete with the pacemaker, but the doctors have decided to discontinue it because it seems to be impacting Syd's personality ~ making her really tired and less active.  It could also be that the atenalol is restricting her airways or making some existing problem worse.  

Her doctors now believe that she has pulmonary edema based on wet lung sounds, so the have again increased her lasix and adding back in another diuretic (aldacton).  They will take labs in the morning and continue to assess her status to ensure that she doesn't end up dry.  We are hoping that the answer is getting all the fluid out of her system.  They are also increasing her sildenofil (Viagra) with the hopes that alleviating any pressure in her lungs will reduce shunting across her fenestration and increase her sats.   

Sydney is also going to start back up on her nebs, this time with atrovent.  She was on atrovent a few weeks ago when she started having her blue episodes.  Hopefully it will help clear up some of her pulmonary issues. 

We are also waiting for Dr. Lim to come back in town.  He is the interventional cardiologist who did her cath.  We are waiting for his opinion on whether or not he is comfortable going back in and attempting to close her fenestration.  We'd at least like a target date for closing the fenestration, especially since they are discussing the possibility of Sydney going home on oxygen. 

Well, that's it for now.  It's been a rough couple of days and Christy and Stephen are exhausted (and so is Sydney).  Please keep the prayers coming, they are so critical ~ not just for Sydney, but also for Christy and Stephen's spirits. 

Thanks,
Josie

Praying for answers

Sydney had another bad day.  I really had hoped, we would be going forward, not backward.  I'm finding myself worrying to the point of tears and nausea.  I am fighting off the "what if's" that are going through my head. Please, God make my baby better.  Please, God, help us to find the answers, so she can grow up, play and have a good, happy life. That is what I want for her.

Syd's O2 sats have been very low (even saw 58 at rest) today. She scared me to death! She is responding some to O2--it took 2 litters to get her back into the low 70's. The Pacemaker doc is coming in the am to "tune up" or "interrogate" the pacer. Pulmonary visited Syd also today, and they heard a wheeze today.  The problems is....Cards wants to wait until the pacemaker has been adjusted, before adding any breathing treatments. The treatments will mess with her heart rates at this point, and she needs this "tune up". It has been awful to feel so powerless...as we wait...watch...and hope tomorrow, we will see results.  We need a plan, and I want it ASAP.  I want all the docs working with her, to have a sit down discussion and come up with a plan, with me. All we are getting right now is,"she can not go home like this".  I need to know what is next.

On a positive note, Sydney did brighten up for Grand-mommy, Grand-daddy and Aubrey today.  You could tell she was not up to snuff, but she was glad they were there.  Lots of snuggling, a few walks trying to open up her lungs, and a lot of coloring.

It was, also, really great to see Aubrey, my little shining star.  I have missed her like crazy, and do not like not have my two special girls apart.

Thanks as always for checking in, and please continue to pray for my baby girl.

****update**** as I was writing this.  A chest x-ray was taken.  Sydney started to moan...asked for Tylenol...took her pee pee and she screamed out in pain.  First she said her back her and then her side.  This is the second time she has done this today.  The plan to take a urine and the x-ray has been done.  The doc does not think it was the removal of the chest tube, because the doc does not hear any other "air sounds".... but the x-ray would tell.  Thinking back, things could have started to go backwards then?  I will think about that for a bit.

Love always,
Christy

Staying a little longer

This is my 2nd attempt to get this posted ( i had to completely re-write it)...so it will be brief this time.  I am really tired.

Sydney has not had a great day today.  She has been really tired, and not wanting to do much.  Sydney has lots of things going on:

1) Sydney is having issues with going to sleep in the hospital. It just takes forever to go to sleep and when she does, she has nightmares.  It is so sad to watch. She will wake up and reach out to touch one of us, so she knows that she is safe.

2)Sydney O2 level have been poor today.  She has needed to go back on her O2, but it really does not seem to do much to help her.

3) Sydney has been holding a lot of fluid again.  She actually pee pee'd over a liter of fluid off of her little body.

4) Another issue that might be occurring, Sydney may be "drying out" from all of the fluid leaving her body.  The team has backed off of the amount of lasix and spiralactone to see if her O2 levels will rally again.

5) Pulmonary came and assessed Sydney today. They would like to try a few things, and see if they can help Sydney's sats too  Being that Syd is now on a beta blocker, this needs to be okay'd with cardio first.  I will find out what the plan is tomorrow.

6) The mysterious rash continues.  We just cannot seem to get to the bottom of this.  It is driving me a little nuts, but the docs feel strongly, she is okay at this point.

Sydney's spirits did lift up when the Kurz girls came to visit.  Syd's face just brightened up. Boy this really made her day (mine too to see her so happy)! She just got to be a kid for a little while instead of this little patient.

Thanks as always for checking in.  This process has been so wearing, and I am feel quite run down, and sometimes, emotionally fragile.  I can be strong, but the stress builds, and gets to me, over time.  I had one of those moments today...and it took my breath away.  I think, maybe at this point, a little rest, and hopefully I will be ready to take on the next day.

I wanted to give thanks for the help so many of you have offered and given.  I know I have not been able to thank you all personally (like I would like to do), but please know how grateful and thankful I am.  God bless you all.

Love always,
Christy

Progress takes time

Sorry for the lack of updates.  Things continue to be busy, and of course we are all worn out...to tired to write.

Yesterday....Sydney sat up, walked, did physical therapy, started to smile and talk more. She started to drink, but still no eating.  Sydney was on and off of her O2.  She still had a few episode of break through pain, which was very distressful to see. Even though there was break through pain, it was better controlled.  Josie and I kept her up, busyand moving all day. She dumped a lot of fluid from her chest tube making it remain for at least another day.  The doctors said this was normal for a child that has had 4 open chest surgeries.  Sydney has been having some itching issues.  Her chest incision was very irritated, and her face would get red, itchy and splotchy.   One mystery was solved, when Dr G's Nurse practitioner did a dressing change.  The area around Sydney's incision was red and irritated....not infected, thank goodness.  We believe the tape was the cause, and this was removed so it can heal.

Today.....Sydney pain issues continue to get better.  Dr M (EP doc--pacemaker) came in and worked on Sydney's pacemaker.  Sydney's heart rate is too high for the pacemaker to help Syd get the "atrial kick" it needs.  So she was put on a beta blocker this evening, that will hopefully help.  Once this take effect, they can adjust the pacemaker some more.  Sydney continues to have a strange rash come and go on her face.  At one point, it caused a great deal of itching, redness, it was hot to the touch.  We even thought Syd might have a "squeak" to her breathing.  The doctors have seen the rash and they think it is an allergy. What she may be allergic too is unclear, but they do not think Syd is in distress.  Frustrating...I know, but we will keep trying to find the answers.  Sydney will be finishing her last dose of antibiotics tonight, and will be off of her IV Motrin for pain.  Pain management will be different tomorrow, so I hope she will be comfortable. S

This evening...she continues to progress well.  They are treating Syd for thrush...poor thing, but it seems to be helping.  She said "peacock" tonight for the first time after surgery.  This is her favorite word and if she likes you....you get a shout out from her...."peacock!!"...and you know you are in...she likes you!.  Very cute and silly.  That's my girl! Syd did get her chest tube out tonight, and the words discharge has been brought up again....maybe Sunday?  We all want to go home so bad.  We miss Aubrey like crazy.  Aubrey has been feeling sad, and she evening saw the school counselor the other day,  She talked about her feelings, and drew Sydney a picture.  I need and want my girls back together.  With that said, I want to make sure that Sydney is well enough to go home. I can not watch her crumble at home any more. I need to make sure.  She is still holding a huge amount of fluid, so her lasix has been increased and another diuretic has been added too.  Sydney's body has been stressed, and needs time to recover.  I know this process will continue at home, but I feel we still have a little more work to do...to make sure we do not have anymore admissions or ER visits.

Thanks as always for checking in!  Thanks again for all of the love and support.

Christy

Back on the Floor

Well, Sydney is back in her room on the Acute Care Ward ~ in fact, her PICU stay was almost exactly twenty four hours.  It's nice to be back in the big room and it feels like a step closer to home...but it's still a rough road.  Sydney is really struggling with the pain, more so than she ever seems to have had before.  She also has a juicy cough and it's hard for her to get move the junk out of her lungs when it hurts to cough.  And to top it off, her fever is back ~ 101.5 at 7:30.  Her heart rate is pretty high, around 145, but we think it's related to the fever and the pain.  We're waiting and hoping that the Tylenol helps with both.

In good news, she got her foley catheter out and has done all her business (big step after surgery).  She got an extra dose of Lasix today to help her pee off some the fluid she's been holding.  It seems to have helped, but she's still really puffy around her eyes, her feet, and definitely around her belly.  Her belly button has become our "turkey timer,"  when it's flat, her belly is fine, but when it pops out, we know she's holding fluid!

The pain with this surgery has been intense and sort of unexpected.  Last night was really long for Sydney and Christy ~ lots of thrashing around like nothing she's done before, moaning, crying out, and general discomfort.  On top of that, she had the fever. While no one is really worried, to be on the safe side, they ran a culture on her blood.  We should get the preliminary results tonight.  Most likely the fever is just a reaction to surgery, or maybe a little infection she caught before the surgery.  Interestingly, when she's in pain and asked to point to what hurts, she points directly at the pacemaker, not her incision.  Apparently that's pretty normal because to get the canister in, the surgeon has to cut through muscle and wiggle around under her ribs.

Thanks for the prayers, they are so important.

Josie     

Recovery----ugh

Little Sydney's color was so bad when we first saw her.  It put me into tears.  I had to straighten up before she noticed.  Her O2 sats were disturbing at first...60-70's, but they did recover throughout the day (high 70's-low 80's).  I know they will not get into the 90's until she has the fenestration closed...but that will be 6 months from now.  Sydney has "junk in her lungs"---or slight partial collapse.  She has had this before.  Sydney has to breath deeply, cough and blow (she likes bubbles).

Sydney has been begging for fluid, but she had to take it easily at first.  She has been able to keep down drinks, and even a little yogurt smoothie (which really made her day)!!

This evening, Sydney spiked a fever (101) that increased after Tylenol was given and the room was cooled (to 102). Please pray the IV Motrin helps with the fever and the pain. The doctors reviewed her blood work and there is an increase in white blood counts.  They believe this may have begun before surgery.  A broad spectrum antibiotic has been started (Ancef) through IV for the next 24 hours.  If this does not work, then they will begin doing cultures (blood, urine,) to see what is going on.

The roller coaster continues for poor Syd.  She is comfortable and sleeping at this time.

Thanks for checking in and please continue to keep her in your prayers.

Love always,
Christy

Pacemaker has been placed

Sydney is out of surgery and doing fine.  Thank you God!  We were really worried, and starting to pace big time!! We really thought this would be done by 11, since they started later...but these things can just take time.  Dr G had to open Sydney's chest completely, because of all of the scare tissue from all of the other surgeries. Dr G was able to put a bigger canister in---with has a much better battery life (8 years). Dr G repositioned the Aorta off of Sydney's sternum.  All 4 leads were place with good capture.

Anyway, she is getting settled into the PICU right now....pacing. They have pulled the breathing tube, and she has a chest tube.  We are anxious to see her.

Thanks for all of the prayers.  We will continue to keep you updated.

Love to all,

Christy

Sydney is in surgery

Sydney's surgery began at 8:43am.  They said that she is doing well.  Now we waiting..................

Please pray for a smooth surgery, good results and a great recovery.

Love,
Christy

Surgery is planned

Sydney is on the OR schedule for tomorrow 7:30am start time.  Please pray that all goes well, and Syd gets GREAT results from the pacemaker.  Syd will go to the PICU afterward for recovery. She will be in the PICU for at least a day, then she will be d/c'd back to the floor.  The rest of the time will be spent handling pain and adjusting the rhythm of the pacemaker.

We just told Sydney that she was having surgery again.  It was hard...and she cried.  It did not take long again for her to start smiling again and acting like her silly little self.  What an angel!

We will continue to keep you all posted.

Love to all,
Christy

No surgery today...maybe not even tomorrow

Surgery was canceled this morning.  A child came in last night that could not wait to have surgery.  This means Syd and the other child waiting to have surgery, needed to be bumped. The another child is ahead of Syd.  If he is stable, Sydney will have to wait another day. So, we do not know when Sydney will have surgery.  Could be tomorrow, or Wednesday.   So we wait.  It's not like I can pray for Sydney to have surgery tomorrow...if it meant someone else child getting worse...so we will put it in His hands.

Sydney is not her normal happy self today. Frankly, she is a little crabby.  I don't blame her, maybe it is just being here.  I hope that it is nothing else going on. 

We were able to get Sydney to attend the VERY cute preschool program here today.  At first, she was scared, not wanting us to leave. So we stayed and played too...until she felt more comfortable.  Sydney finally and happily let us go, and we got some good non hospital coffee.  She had a lot of fun working on her rainbow craft, talking about the days of the week, and listening to stories.  She enjoyed getting out of her room even though attached to her telemetry and o2....but it was freedom.

I feel like we have been her forever.  Longer then the Glenn and almost as long as the Fontan.  I would like her to get well soon, so we can bring our baby home---well. We were just not prepared to be here....and definitively not this long.

I will keep you all posted.  Love to all.

Christy

Surgery again....

Post cath---4th day in hospital---very blue--but this was an improvement--meds are being increased

Surgery is planned for tomorrow afternoon or Tuesday morning.  We should find out mid-afternoon. I cannot say how I feel about Syd needing to have surgery again.....at this moment.  I have experienced so many emotions thus far.  I know that Sydney cannot continue to feel the way she has been.  This road...without this correction...I feel would be a short road.  She really scared me, so much that I thought we might loose her.

On the brighter side, things are looking better.  She is stable, has better color, tummy is getting smaller, O2 and Viagra seems to be helping.  Thank you God! It is wonderful to see her not struggling for every breath.

I wanted to thank so many of you for helping our family during this difficult time.  I have no words that I can express how grateful Steve and I are for your help.  Thank you all, and God bless you.

I will post an update tomorrow, when I know more.

Love,
Christy

Day 5 and starting to look a little better

She is satting 89 right now.....is this real?!

I had not updated earlier, because there was not much to tell.  We have been continuing to watch Sydney working hard to breath...not able to peepee...tummy still big. The doctors are all keeping a close eye on her, with the new meds they are trying.  One is Viagra---used to dilate her blood vessels so flow will be better. Two is Lasix--which they have increased, because she is having trouble getting rid of fluid.

Sydney has been more active today.  She has been smiling, giggling, and in general....a goof ball!!  I LOVE her little personality.  She is a sassy little girl, and can be so much fun.  I have been soaking up every minute of this...coloring, painting,  playdoh, bubbles, and more.  Syd is not able to run, but she sure can still play.

We did find out today that surgery will most likely be Tuesday.  There is a slight possibility that it could be moved up to Monday--but this is unlikely.  We have been getting a lot more information about the pacemaker, and what to expect. They are trying to "change the timing of the (heart) beat"because the upper part of the heart (sa node)--atrium--is suppose to beat first, then, communicate with the "middle" if the heart (av node), and squeeze down.  This will make her heart act like it is in sinus rhythm, even though it really is not.  This is all new to me. Syd's heart will be a little more challenging to pace, because her normal heart rhythm is pretty high.  So, this means the doctors will have to give her meds to lower her heart rate, so the pacemaker can override the heart beat/rate.

Sydney's evening has been better.  She has started to peepee.  She is drinking and eating good.  Her sats have been higher.  So high in fact, the staff had to lower the O2 she is getting to 1 littler.  This is great news...we think.  This might means the new meds are working.  Syd seems to be comforable right now, and hopefully going to bed soon.

I would like to thank all of the visitor for coming and lifting our spirits. I also want to thank Josie for keeping me sane and offering support!!

Thanks for checking in.

Love Christy

Pacer Update

This is version two, the first one got deleted. I'm hoping I can recreate it!*


So the EP doctor just came by and had a long conversation with Christy and Stephen. He feels confident that a pacemaker will help Sydney. During the cath they discovered that Sydney's AV node is still working, so the pacer will only need to control the atria (top of her heart). The pacer will not put Syd in to normal sinus rhythm but will create "atrial kick" - gives the top of her heart some power and help generate flow. It's going to be a little tricky because Syd's junctional rhythm gives her a fairly fast heart rate (100-110). In order for the pacer to override that rhythm without forcing her heart to go ridiculously quickly, she may require medication to slow her natural rate. Dr. McDaniel thinks that it will be a bit of a process to get her where we want her to be, but that when we do, she'll feel better.

Because of Sydney's size, the pacer will go in her abdomen. The surgery will require her chest to be opened (through her original incision) so that the leads can be embedded in her heart and run down to the actual pacer in her belly. Because of the anatomy of her heart, her leads will be fairly shallow under her skin. Usually they're placed more deeply, but when they are, they tend to attract clots. With the anatomy of Syd's heart, if she threw a clot, it could go right to her brain. So, all that means that Syd won't be able to play contact sports. Enough force could break her leads and require another surgery to replace them...but she can still do ballet and that's her true love anyway : )

So that plan is to give her lungs a few days to relax, recover, and respond to the Viagra. The pacer surgery will be early next week and it will probably take a few days to recover and to get the pacer running optimally.

As far as the general plan, once Syd's body had recovered and adjusted to the pacemaker, they'll try to close the fenestration. Her sats probably won't be great until that gets done (probably 4-6 months from now). The pacer may or may not help with the fluid back up (distended belly, prominent veins in her neck, enlarged liver). She may just need to be on Lasix for a year or two until her body size grows into a better proportion with the size of her Fontan conduit. Lowering the pressure in her lungs with the Viagra should help too.

Ok, I think that's everything. Let's see if we can get this posted before it gets lost....

Josie

Cath Results

Sydney is out of cath and snuggling up with Christy on the bed. The cath went pretty well, with four main findings. (1) The pressures in Syd's lungs/Fontan were not anywhere near as high as we had feared. They were at 18, with 20 usually being the standard for "high." She did respond positively to 100% oxygen and then to nitric oxide, so she will soon be starting a Viagra regimen to help dilate the vessels in her lungs and reduce pressures. (2) There were some collateral vessels from her pulmonary artery that needed to be coiled off. They were probably contributing to her elevated pulmonary pressures. (3) She responded very positively to a temporary pacemaker, indicating that she will need to have a pacer placed permanently. And (4), her fenestration was not able to be closed. While it would have been good for her saturation levels, Syd's blood pressure dropped dangerously low when they temporarily closed the opening. Hopefully in five months or so they will be able to get it closed.

So what we know now is that she is NOT in Fontan failure and she does NOT have primary pulmonary hypertension, two nightmare scenarios that we are relieved to avoid! We don't yet know when they are going to do the pacemaker surgery. Dr. Lim, who did the cath, indicated that he'd like it to be done during this hospitalization, but we haven't yet spoken to Dr. McDaniel, who is the EP specialist. We'll update when we know more. They did indicate that Syd will be here through the weekend as her body gets used to the new medication. It will be interesting to see how it helps her sats. They told us that during the cath, with no oxygen, her saturations were in the low 50s. Yikes! Right now she's resisting putting the oxygen back on and she's in the upper 70s on blow by.

Thank you for the thoughts and prayers, they have been so important to the Davis family during this very stressful time!
Josie

I could not wait one more minute

3/2/2010 Yesterday was just down right crazy.  I really felt that Sydney should have never gone home after our pre-op appointment...but the Doc felt she was stable.  The doc changed Sydney's breathing treatments to xopanix (sp?), so Sydney's heart rate would be lower then when using albuteral. We went home nervous.  During the night Sydney's O2 levels dropped significantly...but her heart rate was lower.  I was up all night long....watching....waiting for the nebs to work....making sure she was still breathing....and giving her treatments.  Syd continued to crumble as the next day went on.  Sydney respiration rate was 40 plus just sitting in my lap doing NOTHING!  She said it was hard to breath.  She wanted to play, and would try, but she had to work so hard to do it.  Her color was really bad, you could see her skin pulling in under her ribs when she was breathing.  She also continued to be full of fluid---my 3 year old looks pregnant. 

 I could not wait one more minute.  We decided this was no longer acceptable, and she was going to the hospital...even if she had to go through the ER. I made a lot of calls with a great deal of frustration.....but the end result was, she was going back to UVA for a direct admit.   Syd was assessed, and then put on 1 liter of O2.  This really did not seem to help at first....maybe a few points.  The irony is, Sydney started to sat at 80 again.  I had not seen this in almost 24 hours, and now she is going to show everyone I am crazy.  That's fine....I am loony...no shocker there.  We did notice Syd was nice and stable through the night.

3/3/10--Sydney's sats have been trending down.  Her numbers have been getting lower and lower.  There seems to be no immediate plan for her.  It seems their hands are tied, until the doc's can get the results from the cath.  It is soooooo frustrating.  Josie and I have been watching Sydney smile and giggle at everyone, because that is how she is....sick or not sick....and we have been watching her get worse.

The plan for now--cath in the morning to see they can fine out what the issue is.  Once we know, then treatment can begin. I am really tired, and I just cannot explain anymore...so I will update again after the cath.

Love to you all and thank you all soo much for all of the thoughts and prayers.  Keep them coming!  .

Love,

Christy

Yes...things can get worse

We had our appointment today and it did not go like we had hoped.  We got news that frankly hit us in the face.  We thought we were going to hear about what needed to be done to "fix" my baby.  But we did not get that today.  I have all the different emotions in me right now.  I go from scared to angry to crying to denial...even drifting off into mind little world--where everything is happy and great.

Sydney, as I mentioned before has been having issues. These have been continuing and now increasingly getting worse.  Her sats are low (79) but will dip down to into the low 60's.  Two times last week she had core cyanosis episodes (purple/blue lips, gums and tongue).  We ended up in the pediatricians office.  Sydney has been on and off nebs since Dec.  We have been working with Cardiology and Pulmonology to try to figure out where the issue is---currently to no avail.

A few weeks ago, we noticed her tummy getting bigger, but thought that she was finally gaining weight.  On Feb 18, Sydney had her first cyanotic episode.  She looked bad--hands ,wrists, tongue, gums, lips, feet--all purple.  The pediatrician found a wheeze in her chest this time and treated her by increasing her nebs and sent her home.  The same thing happened again on 23rd---this time no wheeze, high respiratory rate, trying to puke when any physical activity occurred (ex going to the potty) and her belly was very distended. 

After leaving the pediatrician offices, we went to Dr Falterman's office.   Sydney's liver is down (3 fingers in length) and she said Syd is in fluid overload (lasix was started). She did an echo and found the heart function to be good. Dr F said the fenestration has increased in size from 4 mm to 9 mm, and that there was a great deal of right to left shunting.  Dr F said this meant it was time for the fenestration to be closed. Dr F felt that Sydney had a pulmonary hypertensive crisis.  She had talked to Syd's Pediatrician and Pulm and came up with a neb treatment plan.  It appears that Sydney heart rate (when it increases) helps Sydney sats---so alberol (q 4 hours), pulmocort (bid) and atravent (q 8 hours).  Sydney also continues to be in junctional rhythm. Syd's cath is planned for March 4th, because pulm, ped and cardio feel that the fenestration needs to be closed now.

This is where things get tricky.

Today, March1, we took Sydney for her cath pre-op with Dr Lim.  After an evaluation, Dr Lim came to completely different conclusions.  He feels that Sydney is too sick to have her fenestration closed.  He said by the size for her tummy and her liver....also by the appearance of Sydney veins in her neck---that Sydney's pressure are too high in her lungs.  If the fenestration was closed at this point, the results could be catastrophic. He said that he did not know why this was happening, but the cath on Thursday should hopefully give some answers in to why the Fontan maybe failing.  He was very concerned about Sydney's heart rate being so high. He wanted us to change Sydney neb tx's to Xoponex, decrease Atravemt  because he felt that she was tachycardic . Dr Lim  does not want her heart rate to go above 120-- but his ideal--would be for Sydney's heart rate to be under 100.  He said they were going to check for clots, and see what meds she may need to help her.  That is all he could tell us right now.

I am really struggling,  because these diagnosis are very different--really at two different spectrum.  Right now I have been trying the lower heart rate plan, and after two nebs with Xoponex and then an Atravent....I got her O2 levels up to 77.  I am going to have her sleep with me tonight.  I cannot handle this.  I will let you know more as it happens.

Please continue to pray.  We do not know what is going to happen.

Thanks bunches,
Crazy Christy

The day could always be worse...right?

2/23/10
Tuesday--Thanks for checking back in on our craziness. As I said in my last post, Sydney has been having a lot of O2 (sat) level issues. We have been treating them aggressively, but she is still not doing well. I have been watching her O2 sats like crazy...trying to understand what helps her heart rate, and what helps her O2 levels. I feel like we have several things going on, and I feel we have been in a tailspin---as I call it--on who needs to "fix" this problem. Today, Sydney had another major drop in her sats 64----then we got her back up to 81, and within 2 hours she was back to 75. None of this is ok. I know she has a heart defect...and I know she has 1/2 heart...but her O2 levels should be higher than this (should be upper 80's)....and she should be way more stable too. Mommy's gut saids there is something REALLY wrong. Well, as if this was not enough, both Aubrey and I got the stomach bug---that is 12 hours of puking. UGH! Just kill me please. I was able push through with the help of some meds, a really GREAT husband, and some REALLY great friends (Thanks Josie, Heather, Meredith, Michael and Jo!!).

Back to Sydney's O2 levels...we called the Cardiologist and left a message. Steve and Heather took Sydney to the Pediatrician. Josie and I managed phone calls, Aubrey and...well me... helping me to be able to function to physically better so I could handle what was going on with Sydney. We needed assessments and answers...now. Steve said Sydney's little hands were just blue. My baby is not suppose to be this color. The doctor gave Syd another breathing treatment, checked her O2 levels, check blood, urine, weight..etc. Her weight was up a little...which they thought was good (later to find out it was not). We thought she needed to be admitted at this point. Enough is enough...we are getting desperate to get her better. We have been watching Sydney just get worse and worse. The Cardiologist and pediatrician talked over the phone, and they felt Syd was stable enough to "try it (the new breathing treatment plan) at home", which was NOT okay with us at this point. I talked with Sydney's Pulmonary doc, and they felt...like we did..... that Cardiology needed to physically look at Sydney. I wanted a cardiologist evaluation and an echo done before the"try this new plan at home" plan was put into action. Cardiology saw Sydney, and agreed there had been a status change.

We got into to see the cardiologist. The first thing Dr F noticed was the size of Syd's tummy...large and distended. Sydney needs to drink a lot of fluid to profuse...but she right now she is in "fluid overload"(which her labs showed too). Her liver is "down", which means it is enlarged. When pushing down on Sydney's liver, you can usually feel the tip, but now it is the length of 3 fingers. Lasix was started, so she can start peepeeing this fluid off. Sydney is still in Junctional Rhythm, which is not a surprise, weight was 28.3 ounces (not really making any gains), holding fluid (which means any weight gains are not true),and echo was done. The echo showed Syd's heart function was good. No real leakages from her 2 valves, a lot of shunting (blood mixing due to the fenestration) and flow down (most likely causing the fluid build up). Dr F said because Syd had had a virus, UVA still needed to wait to do the cath until next week. Dr F said the cath should help Syd's flow, O2 levels and the fluid build up. Once this happens, we can better assess any lung/pulmonary issues...should they remain.....lets pray that they do not.

Dr F said Syd had a "Pulmonary hypertensive Crisis" or Pulmonary anemia...not a diagnosis of pulmonary hypertension at this point...which by the way, we DO NOT WANT. What is this?? According to Boston Children's Hospital" Pulmonary Hypertension (secondary) starts when the walls of the blood vessels that supply blood to the lungs constrict, or tighten up. This makes it more difficult for blood to get through to the lungs, and the heart must pump harder to overcome the resistance......when pulmonary hypertension occurs as a result of....... the effects of other diseases, it is referred to as associated pulmonary hypertension. Causes include.....heart diseases that cause shunting of extra blood through the lungs , such as patent ductus, ventricular septal defect and atrial septal defect" (which she does with her fenestration). My understanding of what all of this means is she needs to get lung/pulmonary stable (O2 sats stable, decrease in neb tx's and off of the oral steroids) and have her man made hole in her heart closed. The pressure in this "hole" has made this fenestration get bigger. It has gone from 4 cm to almost 9cm. Our hopes are that this closure should help lot. Once this is done, we can take a better look at what else may be going on with her breathing...possible airway reactive disease (like asthma).

Once the cardiology appointment was done..all parties agreed on the "new plan" changes Sydney needed to start 1)new neb meds (all 3 different kinds),2)continuing steroids just a wean down, 3)continue antibiotics,4) start lasix, 5)and continue her other meds. Heart cath pre-op is planned for March1. We will talk about the pressures, fenestration, lung issues and an ep study (to determine why she is not in normal sinus rhythm). The cath is still planned for March 4 at 10am. Sydney's recovery will take a few weeks from the stress it has been under. Once her fluid is back into balance, her body get used to the new pressure, then we should start see improvements. That is what we are praying for.

2/25/10
As of today, Sydney's O2 levels are better. She is staying in the low 80's. Her color is still poor. She is pale with a purplish tint to her lips. She cannot run or play, which is REALLY sad. The cardiologist needs to her rest, and she just cannot do it with out huffing and puffing. It is sad, and breaks my heart. Also, she is real temperature sensitive---when she gets cold, her sats drop---so we must keep her bundled up. Sydney is taking all of this pretty good, but she has been a little more cranky then norm. I admire her ability to be able to go with the flow as much as she does.

Thanks for checking in, and I will continue to keep you all updated. Please pray for my little girl to get better, so she can run and play.

Love,
Christy

Life according to facebook

I am sorry that I just stopped Blogging. I have had a difficult time dealing with our situation with Sydney...and at times have been a little down. I have good days and bad. I worry all of the time about Sydney and what...her near future holds. I have been putting sound bites on facebook about life in the Davis house.....so here they are. I hope this gets you caught up....and I will try to keep things more up to date from this point on.

Oct 4--Sydney's heart surgery is schedule for 6am Monday morning. Keep up the wonderful prayers!

Oct 5--The anesthesiology team just took Sydney back. It will take an hour and half or so to get her "prepped," so surgery will probably begin around 9 or so. We'll update again when we hear that surgery has begun. Dr Peeler cam by, and said that Sydney should be done around 11:30am.

Sydney if off the by-pass machine and her heart is beating on its own! Surgery should be over soon

Sydney is done with surgery! Her sats are in the high 80s to low 90s and she is breathing all on her own. We should be able to see her within the hour. Thank you for the prayers!

In with Sydney now. Sydney is going great, awake and talking, asking for television, her milk, and "lipstick."

Oct 10---cuddled up with her 6 year old. I have really been missing her while Sydney had been in the hospital. Sydney doing great though!! She needs to get her O2 up some more, so getting her moving will help. Did I mention...she is no longer in the PICU!!!

Oct 12—Aubrey went apple picking with the Kurz.

Sydney is doing great. We are still working on her o2 levels (in mid to low 80's). Doc's hope for upper 80's before d/c. Maybe home in the next few days. I am ready, when she is ready to go home.

Oct 13 1230pm--In the car on our way home with Sydney.

Oct 14---is grateful for Sydney's life and the people who helped her get this far. I huge thanks to Dr Peeler for saving my baby's life.

Oct 21--is worried about Sydney's sats (low 80's)..trending down. Just hoping her meds need to be changed. Will find out tomorrow am with cardio.

She was in the low 80's before surgery. Syd was d/c'd at 85% and higher

I am trying to breath. She needs fluid to keep her o2 level up...so we are hoping the fluid meds are what is doing this to her sats down. I was just hoping the reduction at this point would have changed since this afternoon. Maybe not enough time?

Oct 22--Sydney got a good report from the cardio doc. She believes Sydney is too "dried out" from her lasix. The meds have been reduced and we should seen an improvement in a few days, Her heart function is good, but still in junctional rhythm.

Oct 27--in lysol land. Aubrey has Type A and Type B Flu. She seems to be doing well despite the 101 temp....see is playing. Trying so hard to keep my girls apart so Syd and the rest of us do not get it.

Oct 29--Aubrey has tried so hard to not spread the flu since she has been at home. Despite our efforts, Sydney now has a 101 fever. I pray this will be mild, being that Syd is only 3 weeks post-op heart surgery.

Thanks for all of the prayers!! Sydney has been started on Tamiflu, and seems to be ok this morning. The evenings seem to be when my girls go down hill and get their fevers. They are both happy to be able to be at least able to play together again.

Oct 31--We are hanging in there. Both girls have the flu, and Aubrey stared to have some asthma issues last night. Our doc was on call, so it was treated quickly and she is doing better today. Syd seems to be fine....knock on wood. I hope we are at the end of this for both of them.

Hoping the girls continue to get better. They are both very sad about missing Halloween and their friends.

Nov 1--is working on homework with Aubrey. Trying to get her caught up, so she can go back to school next week.

Nov 2--Sydney's sats at 70= no sleep for mama. Mama's tired. Sydney is happy and playing.

Syd's primary card doc was not in today, but I talked with one of her partners. He said that it is normal to have these fluctuation when recovering for the fontan. He said it can take a couple months to recover. Well, come to find out the sat decrease was more due to the ending of the flu. She started coughing, so I gave her a neb. Sats went up to 76 and later up to 83. Her sats currently have been 80 and above since coming home. I have been told this will improve with time. She got really dried out from her diuretics, then ended up with the flu....so I don't really know what is her normal yet

Nov 3--Aubrey 's neb done--Check----Sydney's neb done--Check----Steve's neb done--Check----Time to relax----ahhhhh----then I mess up the color on the TV-GRRRRR!

Steve and Sydney have Bronchitis, and Aubrey has had major asthma issues. The flu itself wasn't that bad...it
is the problems that follow it. I has been challenging.

Nov 8--Just got back from Deltaville after visiting the grandparents. Wonderful visit....and everyone came back looking so much better!!! Sydney is pink again, sats better and playing!

Nov 11--Sydney is happy, sassy and pink. She is satting at 88% tonight!! This is amazing! Keep it up Syd! Now we just need normal sinus rhythm.

Nov 13--tired. Sydney thought it would be a good idea to keep me up all night because she did not want to sleep alone

Nov 15--had fun with the kids outside today. Beautiful, sunny day! Aubrey bike riding and Sydney rolling her little car around. Wonderful drop by visits and dinner with friends. Great day!

Nov 17—I am feeling yucky today....wishing Steve would come home soon.

Nov 18--still feeling yucky....I think it's not viral...but crohn's instead...and of course Steve will be working late.

Nov 27--Happy Thanksgiving!

Tired from Black Friday shopping!! It was crazy and fun...so worth it!! Having great company made it all worth it.

Dec 3--happy!! Sydney pooped on the potty for the 2nd day in a row!!! Go Sydney!!

Dec 4— 3 years ago today, Sydney came into the world. I have stressed, laughed, cried, sang, worried, prayed, and embraced you throughout this entire journey. I feel blessed to have you and love you. I would not change a thing if it meant not having you. Happy birthday to my big girl, Sydney.

Dec 10--happy our Christmas tree is up and decorated. Thank you to the Kurz family for helping us "trim it".---On a funny note, Aubrey thought we were really "trimming" the tree, and was quite upset with this. All is good now.

Dec 18--Thinking about Sydney's Cardiology appointment today, and wondering what is next for Sydney. She is wearing a holter monitor for the next 24 hours....this info will tell us what is next. If you could say a little prayer for sinus rhythm that would be great

Dec 20--I feel blessed to be included in a wonder and perfect day!! Gingerbread houses, cookie making and decorating, sledding, the sounds of children laughing, and special friends.

Dec 22--I am asking for prayers today....for good results from Syd's holter test.

No info could be retrieved by the holter monitor test, so we will have to repeat it. So maybe next week we will have more info on Syd's rhythm.

They are not sure what happened. The doc and RN tested the monitor (the nurse wore it in the office---funny huh!) and they could not find anything wrong with the machine. Maybe Sydney bumped it? I don't know...but they are going to have me check it often the next go around. Yes, I was VERY disappointed, but Syd was getting a cold during this....so maybe the delay will be better.

Dec 24--Waiting for Santa........Merry Christmas to all and all a good night. Happy Birthday Jesus!

Dec 27--saw "Alvin and the Chipmunks... The Squeakquel" this evening. It was great!

Dec 28--No holter monitor today....Syd's sats are down b/c of a cold. Off to the peds office instead Bummer:( We all have the yucks!

Did you know my 3 year old daughter, Sydney, has a CONGENITAL HEART DEFECT. IN her short life ,she has had 3 open heart surgeries. People do not know that Heart defects are the # 1 birth defect, and they affect 40,000(1 in 100) babies born a year. Please help spread awareness and pass this along.

Jan 1, 2010--Happy New Year to all. May this year bring happiness, love, and health.

Jan 5--Syd's sats are down....78%....not profusing well....dehydrated....just got home after a visit to the ped's office again....chest x-ray done....blood work down....now we wait.

Jan 11--Sydney's hanging in there. Sats have been up and down. We are trying a few new things to see if this will help her shake this infection. Her spirits are good....but that is Sydney....a strong little girl. Momma needs a little of that right now.

Jan 13--Sydney is eating! Yeah! She needs to gain weight badly. She was 30 before surgery and now she is 27 1/2. Sats are up (85-90), which is the best I have seen---ever!! I hope things are on the up and up. Sydney is still getting nebs every 4 hours though. Baby steps.

Jan 14--Sydney had another good day. Let's pray this continues. Being optimistic has been hard lately.......because I always fear when the next ball to drop.

Jan 28--I wish my head did not hurt so bad.

Jan 30--Bring on the snow!!

Jan 31--I took Sydney, my 3 year old, sledding today. She looked at me so sweetly while I was pulling her on the sleigh and said, out of the blue,"Mommy, why did I have to have surgery?" I was dumfounded...she was asking me this months after surgery...so I answered, "because you have a booboo in your heart that the doctor needed to fix." So much for such a little girl to have to process.

Feb 7--♥ ♥ ♥ ♥ Congenital Heart Defect (CHD) Awareness Week - Feb. 7-14 ♥ ♥ ♥ ♥

My 6 year old daughter, Aubrey plans to participate in "Jump Rope of Heart" in honor of her 3 year old sister Sydney, who has had 3 heart surgeries in her short life so far. Please, help support her cause. Aubrey feels proud that SHE can do something.

Feb 8--In the words of Helen Keller,"The most beautiful things in the world cannot be seen or even touched, they must be felt with the heart." ♥ ♥CHD Awareness Week ♥ ♥

Feb 9--Sydney may have reactive airway disease...as if having a heart condition was not enough. Time will tell.

Feb 11--is waiting to hear from UVA....Sydney needs to have a heart cath done...O2 sats 79.

Feb 14--Today is Congential Heart Defect Awareness Day. Today is a day with so much emotion and power behind it. Today we celebrate "Heart Day". We love you Sydney.

Feb 16--Sydney's o2 levels up and down. She went down to 67 last night and I freaked out a bit. I woke her up, made her drink (fluid helps her) and gave her her inhaler. Waiting for a date to close
Sydney's fenestration (which is a hole that was placed in the heart during her last surgery to help with easing the pressure in her lungs).It is time.

Feb 17--When it rains...it pours. Sydney was up vomiting all night long.

Feb 18--Sydney's heart cath is scheduled for March 4. Pre-op work up on March 1. The plan is to also look are her heart rhythm status too. Heart rate dropping into low 60's upper 50's at night and O2 sats upper 60's while sleeping. We cannot seem to get her O2 sats higher then 79 most of the time.

Raced to Ped's office. Syd looked bad after her nap. Lips and tongue blue. O2 sats 69-73. Sydney chest is tight and wheezing. Spoke with UVA and if lungs cont to be an issue, they may have to cancel the cath. Nebs and oral steriods given to help Sydney open up.

Feb 19--Sydney's sats are back up with nebs...now in the 80's. Cardio, pulm and ped doc's all working to get Sydney better. I really like Sydney to be pink.