Recovery is a process

Sorry for the lack of updates. We have had our hands full with the girls for the last few days. 

Sydney ended up spiking a fever at 1am in the morning a few days ago.  At that time, we started her on Tamiflu and Tylenol.  Her temp of 101 broke within an hour.  She was very tired and did not eat well the next day. Steve took Sydney to the ped office, and they believed it to be the flu (H1N1) also.  We spoke to the cardiologist (Dr Falterman), and she gave us a few guidelines for Syd. 1)Syd drink 40 ounces a day,2) watch her sats,3) use anti-inflammatories, 4)and continue her aspirin.  Syd has done well. The strange thing is, she has not had a fever since. Her O2 sats have been poor.  Yesterday, Sydney looked good, ate good, and drank 50 ounces of fluid.  I could not understand why her sats were still poor. I changed her finger prob and as of yesterday evening her sats were 84 and heart rate 100---and while sleeping really deep---her sats were 77 and heart rate low 70's. (great!) I am beginning to wonder with the increase in her heart rate, that maybe, Sydney is trying to jump back into normal sinus rhythm.  Wouldn't this be great!  Sydney continues to be very pale though, but her labs (electrolytes) were off according to Dr Z (ped)and the most likely reason for the paleness.

Aubrey has had a little more trouble with the flu, but she is 2 days ahead of Sydney.  Aubrey's asthma has been the the main issue(along with some stomach upset do to drainage).  Last night, Aubrey's asthma began to quickly go down hill.  I was watching her peak flows decrease.  I called the on-call doc, which happened to be Dr Z---Thank goodness! He called in oral steriods, and had her change from inhalers to nebs treatments.  She looks so much better today.  I think we caught it in time.

All in all, the girls are looking better.  If there is no fever tonight, we may no longer be contagious. Steve has bronchitis, and I have been having on and off headaches, stomachs issues and general fatigue. Steve is on antibiotics, and I seem to be recovering also. If I had this, I hope it is done. This virus has been really strange.  A fever does not seem to be the biggest part of this flu virus we had.  Crazy.  Some people have a week of fevers and some barely have one at all.

I really want to thank so many of you for helping out.  I don't think we could have made it through this without you all. Thanks for bringing Aubrey's home work home, dinners, coffee, trips to the stores, supplies, constant checking in, and many other things.  You all are the BEST!!I hope we are on the other side of this.  I will pray Aubrey is done, and this is all Syd will get.

Lastly, I would like to ask for some extra prayers for a little girl named "Til".  "Til" is the granddaughter to a very close family friend. She is the same age as Syd ,with the same heart defect, that just had the same surgery (the fontan) yesterday.  Please, if you would, keep her in your thoughts and prayers.  She is going through the roller coaster ride of recovery, and my heart goes out to her and her family.

As always, thanks for checking in. Heart hugs,
Christy

The roller coaster

Sydney still to seems be so pale.  I just don't understand this loss of color in her face.  She came home this way, but I really expected it to be better by now.  I guess, I really expected things would be easier or better--at this point.  In the last week, I have called the ped's office, had Sydney weighed, spoke with Syd's cardio Dr (Dr Falterman) on the phone, called the on-call cardio doc at 1am, seen Dr F (echo, ekg), watched Syd's sats and fluid out put, and even had to call the weekend on call cardio doc.  I swear, I am not crazy!!!!  I am normally very level headed.  I just did not think her appearance and sats would be worse?!  Apparently, this all seems to be par for the course....I guess?  Dr F feels her sats should be higher, but this will get better when her volume gets better (b/c she was so dried out).  But, the hospital wanted her sats to be 85% or higher, most of the time. Her sats were close, but defiantly varied---lowering during exercise and deep sleep). I was told by Dr A (another doc in our cardio practice) her sats would be the same, if not lower, when she came home.  The other time I have called the office, I have been told the same thing.  I guess I am scared.... and a little confused.  I have been told different things at different times.  It is hard not to freak out when I don't know when I should freak out----so the result is---I am freaked out most the time. Sydney sats were all over the place this weekend, so I have been keeping an eye on them.  The doc's office has given me a range that they would like to see Sydney in.  Should, Sydney fall out of that range for a period of time, I have been instructed to call them.

Tomorrow, I will take Sydney into the ped office.  They will do a full work up on her --- including blood work.  I hope that her numbers are good. This information will be sent to the cardio office for review, and  I will try to update you all tomorrow.

Yesterday, it was helpful to talk to other heart moms.  It does seem to take several months for our childrens little bodies to get used to their new anatomy.   It does seem to be normal for the sats to be lower at first.  It is also normal to feel--like I feel.  Thanks Karen!  After the first surgery...you just prayed to see your child make it to the 2nd surgery. It was hard.  BUT, after the Glenn (2nd surgery),  there was such an improvement.  It was not an easy recovery, we dealt with a lot of fussiness, junctional rhythm, and fluid retention....but she looked much better.  This time we have some of the same issue, but added ones.

I know we will make it though this, but I feel like we are on one heck of a roller coaster ride.

Christy

What is going on!

I have been have a nagging gut feeling for the last few days about Sydney.  It was confirmed by a pound weight lost at the ped office.  They had me come in and check her weight there, since that was the same scale for all of the other weights.  I was worried about this, but they were not.  The doc office did not feel Sydney needed to be seen, and instructed the nurse to suggest a few more fatty foods to give Syd.... to help her gain weight.  I voiced my concerns about Sydney "looking small", checking her potassium because it had been down in the hospital, or what if her lasix was pushing  too much fluid off.  The response I got was-- get her to eat more fatty food, her potassium levels were most likely taken at the hospital and should be fine, and we don't adjust lasix. She said to call Syd's cardio doc...and that is what I did.  I never EVER have felt like I had a road block at the ped office before.  They have always been GREAT!

Anyway, Dr Falterman was not in that afternoon.  I l/m a message for her to call and I heard nothing.  Strange, I thought, but she called me this am.....right as I was going to call her.  She was concerned about the weight loss too.  Dr F thought Syd's laxis dose was high, and need to be reduced.  So, we held Sydney's afternoon dose and lowered her evening.  Dr F asked me to check her sats at bedtime and see what they were.  I think she was hoping they would be better....at least I did.  I check them this evening and they were still trending down (barely 80%).

I am so worried....afraid to sleep. So here I am blogging, and facebooking (is that a word).  So many of you were all still awake, sending thoughts and prayers.  So thank you.  I really needed that.  I talked to Michael, thanks a bunch, which made me feel a lot better about Syd.  He explained to me what was most likely going on and that getting her fluid levels up will take a little time...not just a few hours.  It is good to know...that this can be fixed...and that I should try to sleep.

I will update tomorrow.  Sydney's appointment is at 8:30am.
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Ok....I just freaked out.  I checked Syd's sats, one more time before going to bed and they were between 70-75%.  They were never this low post Norwood (bt shunt---first surgery).  Sydney's heart rate was in the 60's.  So, I called the on-call cardio doc.  Dr Mcquilkin, wonderful, said it is not unusual for sats to drop that low at night, and it will not hurt her.  She sounds dry to him,and the change in meds should help with this.  He said we do not need to worry about her sats until they get in the mid to low 60's.  This makes me feel a little better...I think.  Her heart rate is in the 60's, but she is in junctional rhythm, so he said this is ok right now to.  I needed to make sure we could wait to see DR F in the am, and he said we could.

You know, this is the 3rd doctor to say "wow" to me about the amount of lasix Sydney was on.  I am going to ponder this for a little while......

Thanks for the support,

Christy

Home is not that easy

I really thought, I would have more time and energy when we finally got home. Boy was I wrong. Don't get me wrong, I am soooo happy to be home. I'm just more tired now, then I was when Sydney was in the hospital.  Doesn't make sense...does it.?  I think there are many factors involved right now.  We had a team of people (docs, nurses and round the clock family/friends) taking care of Sydney.  Now, it is just us taking care of Sydney.  I guess I am more nervous, worrying about everything, checking on her all night long, worried about forgetting to give her meds, making sure Aubrey is adjusting to all of this, the emotions I have inside about what we just went through and all of the "what if's" that still lie ahead.  Maybe I am over thinking it?  I know we are not alone...that's not it.  It's not that we don't have people willing to help.  I just feel inside like I am a disaster right now.  I have cried on and off all day long...just trying to release all of these emotions; emotions I have inside that I can't put words to.  I do have wonderful feeling too.  I have my family back together.  This is amazing!  To be able to cuddle up with my two girls, read books, hold hands, and get kisses, is more than I could ask for.  Maybe, it is just safe for me now, to finally fall apart.

On a more brighter note, I want to thank so many of you for your help.  It really takes a "village to raise a child"....especially a heart child.  We could not do any of this without your help.  I cannot begin to express how lucky we feel to have you all.

Sydney seems to be doing better and better everyday.  Her coloring is getting better.  She looked so pale (not her lips, hands and feet....they are pink!) when she came home.  Her sats at night have been ranging 83-86 while resting/sleeping.  I hope this will improve. Sydney is still very traumatized from everything she has had to go through.  Syd is afraid of everything. It breaks my heart.  Everyday she gets a little better, and I get to see her little personality shine back through.  She hides behind me when we go to the bus, or hides her face if someone speaks to her, no hugs for others loved except for mommy, daddy and Aubrey.  Even a loved shower is scary to her now.

The Davis household is still on lock down...but I did let Claire (Sydney's best friend and heart friend) come over and play today. I could not believe how happy and perky Sydney looked playing with "Carebear".  They ended up "running" around playing chase.  Sydney did get fussy a few times today, so I gave her some Tylenol, for some of the "deep pain" the doc's said she would have from surgery. It was uplifting to see her...just be Sydney.

Sorry about the rambling and the emotional out pour, but I found it to be a little helpful to give my feelings a voice.  I am ok....we all will be.

Coming Home!

Syd has been officially discharged!!! We are packed and on our way home as soon as we find a Chic-fil-a for Syd!

Jo (for Christy and Stephen)

Going Home....Are you sure?

 

  

Sydney scared of the changes.

 

 Starting to realize we ARE going home.

 

 Watching us leave the hospital.

 

 Get us outta here, Daddy!

 

 Thank you  Dr Peeler and UVA, but hope to not need to see you anytime soon!

 See you at home Grandmommy and Granddaddy

A nice homecoming (minus Meredith who had to go before the pic)

 Thanks Josie!

Home maybe tomorrow?

We might be going home tomorrow...but we will see. We started out the morning back on O2. Oh, what a let down. Sydney's sats went down to 82-84%. Cardio really wants it to be above 85%. Estelle explained to the night shift that Syd's O2 levels were the same as they were all day. They still felt more comfortable putting her back on O2 for the rest of the night. That's okay...better safe then sorry. Thanks Grandma for taking care of Sydney last night...I know it was a long one.

Cardio came though this morning after seeing Sydney back from her walk. and said Syd looked great. They want to keep her on telemetry and monitor her sat only when in her room. This means a little more freedom for her while she is getting her exercise to open her lungs and get those sats up. Her chest continues to be clear, just a little right sided adolestis (sp)which is a slight lung collapse at the bottom. She is in junctional rhythm, but this is what she does after heart surgery. Syd is pooping like crazy, eating and drinking. All good things. As long as she has a good night tonight, then tomorrow might ..... well you know. I am afraid to say it, in fear I might jinx it. I told the doc's, I am ready to take Sydney home, when they think she is ready. I am not pushing them to have her leave....just when it is her time. We will see, but I am hopeful. Her sats have been in the mid to upper 80's today.

Thanks for checking in, and thanks for all of the support.

Love, Christy

There is light......

......at the end of the tunnel. It has been another eventful day, and of course, I am tired. Syd has really been enjoying her sister while here. They just love each other so much. It melts my heart. Aubrey can really motivate Syd to want to get up, walk around, play, and just act like a normal almost 3 yrs old. I love seeing Sydney's little personality come back, and if you know Sydney, the sass is back too! She is such a fighter, and I am so proud of her, to be able to find her smile and humor in all of this. To have her kind of strength.....wow.....she amazes me. Aubrey has been coping with all of this in her own way too. She wants to stay close, needs lots of hugs, especially from sister. She was able to break away from us for a little while and go apple picking with the Kurz. She had a wonderful time! Thanks guys!!

Well, back to the medical stuff. Syd continues to poop. Yeah!! So, this means, she continues to eat and drink (but she needs a little Dora to do so....give the girl what she wants...I say!!). She still hates her meds and puked up her Tylenol, but kept the others down. She is on aspirin, lasix, another diuretic that keeps potassium from depleting (this is what they told me was blood pressure meds yesterday), Tylenol only for pain, and miralax.

We were given orders from cardio to d/c her iv site (nothing was running through it) and walk her without o2. This was great. Syd really liked not having the o2 in her nose. We came back for a break and put the nose piece back on. Sydney sats (o2 levels) were not coming back up as fast as we would like. The nurse agreed to give her a little time to recover, before pushing her O2 back up. Well, they came back up, and the nurse came in to wean her down some more. Do you know what we found.....the o2 had been turned off while we were out of the room, so Sydney had not been receiving any o2. She recovered on her own!!! The nurse called the doctor, and her O2 was d/c'd. She was weaned.

Her sats are still a little all over the place (one time being the probe and the machine), but she has been staying between 80-90% sat levels. Her O2 levels get better after a nice long walk. Really getting her lungs expanding and getting air into them. No x-ray was taken today according to cardio. They said she DID NOT NEED one. Her lungs looked good!! WOW again! I think they may kick us out tomorrow, at the latest Tuesday. This is so scary. I really thought we would need to be here longer....but I am NOT complaining....I just want them to be absolutely sure she is ready to go.

Thanks for check in. I will let you know what tomorrow bring. Hugs!

By the way....Happy Anniversary Steve. I love you as much as I did 12 years ago, when I said, "I do".

Christy

A few answers for you all

Many of you have been asking me.....what is wrong (laymen's terms) with Sydney:

Sydney has what is called Tricsupid Atresia also know as hypoplastic RIGHT heart syndrome (HRHS)---you hear more about HLHS. What this means is she really has 1/2 heart. She was born with 1 ventricle, a VSD and ASD (holes in the heart---between the atria and ventricles. The last part of these major surgeries she is having is call the Fontan. UVA surgeon, Dr Peeler, will be "finishing what he started". Right now the blood mixes (red and blue blood) in heart heart causing her to be "blue"(sats 80-84%). This next surgery(the Fontan)will "hopefully" finish the bypass they have been making. It is called an extra-cardiac conduit. This will separate the "red" and "blue" blood. There will be a "pop off" placed in the conduit ...another hole in the heart to help with pressures not getting too high. We hope that she will get used to her new blood flow quickly. The longer Syd drains fluid from her lung the longer she will be in the hospital. We hope that she will have o2 level in the 90's after this(which will be closer to normal)

Thanks for thinking about us and keeping Sydney in your prayers. There is a lot of power in prayer...so thank you.

I also wanted to wish Aubrey, my brave older daughter a Happy Birthday (yesterday). I feel so lucky to have these wonderful little girls.

Also, I feel lucky to have such wonderful family, friends ,neighbors, and the mlh support through this difficult time. I feel blessed to have you all. I especially want to thank Josie for being my rock, and keeping me together, helping me prepare and the overwhelming support she has offered. I love you!

Christy

The plan

It has been a big and very busy day. Sydney visited the cardio doc (Dr Albrecht).. Her regular doc (Falterman) was on vacation. Dr A checked Sydney over. She is in normal sinus rhythm, her sats were 88%---which was weird. I have not seem her sats that high in over a year. Her heart looked good, and she is a good candidate for the Fontan. He was not sure whether Dr Peeler would do a Lateral tunnel or a Extracardiac conduit (sp?), but I guess I will find out more once the heart cath is done.

I am really tired from today from all of this so I am going to make this a post short. Here is the plan as of today:
--Sept 23--Heart Cath/some post-op
--Oct 1---Finish post-op if not able to complete at the end of cath
--Oct 5--Heart surgery at UVA with Dr Peeler

No school for Syd
-----Also with all of this, I have to keep Sydney out of pre-school. Her first day was today, but we were at the cardio doc's office instead. Syd was so upset about this. She has been following her big sis to the bus stop with her "Door Door pack bag" (Dora back pack) every day...ready to go to "her cool".

No family day home for a few weeks
-----I also had to call and make arrangement with all of the families with kids the I watch out of my house. Thanks to my friends willing to help, and thanks to the families willing to be flexible during this time. The Davishouse is officially on lock down. Germs, germs, go away, come again....many weeks from today!

We are feeling a little shocked by the rapidness of all of this, but this is what needs to be done. Thanks to Dr Peeler, who I can go on and on about how great and wonderful he is, is making sure things are being taken care of. She is old enough now to have this done, so here we go. Poor Syd. She does not know what is about to happen. Right now we have just been talking about her "boo boo", and she looks at her scar.

Please keep my baby in your prayers. I believe in the power of prayer, and this will give her strength to pull through this.

Many hugs and thanks for the wonderful support.

Christy