How easy is this (really!!)?

People are surprised when I:

1. Say Jordan is on IV meds

2. Tell them how easy it is!

So I figured I'd just show it-

This is all we need for one of Jordan's IV treatments!

There is 2 syringes of saline, a syringe of Heparin, a 'grenade' of meds and a backpack. That is all!

This is all that is needed to give Jordan her IV meds! It is pressurized so no pumps, no need for batteries or electricity, no big scary machines that beep at all times of the day and night! Jordan carries this around so she's not required to lay or sit down to give her meds. This takes about an hour and a half so getting her to do that 3 times a day would be crazy (her 4th treatment at 2AM so she's sleeping when she gets it). The backpack make it easy to travel with-just stick everything in the little backpack and she's off! It was a GREAT thing when we were at the hospital Wednesday night trying to get her PICC line re-dressed! Just hooked her up and we were in business!

The only thing that makes me a bit nervous now is how cool the med is and the Heparin. The med has to be refrigerated and we have to take it out well beforehand to get it to room temp. Otherwise Jordan gets a chill when it is being infused. The Heparin can be dangerous if given too much BUT we found out that for her size, she can have A LOT more than what she gets through her IV. The Heparin is to make sure nothing clots off in the line.

If you look closely, her baby has "owies" too. See the stickers? They are to decorate her bandages. Is this a sign Jordan has had a bit too much done to her lately??

Jordan is doing great and had another good day. She even asked for Culver's for lunch! Since she hasn't eaten much in the last 2 days, Jeremy and I got her a cheeseburger, fries and a custard. (See-we are working on those calories too)! She ate 1/2 her cheeseburger, some fries and some of her custard so VERY happy we decided to splurge and get it.

Until next time!

Home Again, Home Again Jigitty Jig...

Ahhh...Home Sweet Home...AGAIN!



We were finally given the ok yesterday to head home. We just had to meet with the Cardiologist (Dr. Edens), Home Health Care (Lori), go to Jordan's Endocrinology appointment with Dr Tansey, along with countless residents, nurses...it's exhausting just thinking about it all.



The day started of "normal" with the resident coming in asking how Jordan's night went. Jorgie Porgie actually slept most of the night except for waking her up to give her Motrin at 2AM. They didn't have labs drawn since now she's a bit anemic. They aren't concerned about Jordan being anemic since they've been drawing so much blood lately. Still something to keep an eye on so they have told us to start vitamins with her. Just another thing to take :-) BUT we were given the new that IF everything went well that day, we could go home that afternoon.



Things were really clicking along for the most part. We did notice Jordan's incision had opened up more. When Tina checked it out, she told us it was superficial (on the surface) so not to worry too much about it. We can't pack it since it isn't that deep and we can't put more glue on it. Since it isn't a sterile wound anymore, they would be just trapping germs and bacteria in the wound by using the glue.



We had an endo appointment that took almost 6 months to get originally so Dr. Edens told us we could take her down to the clinic for it instead of making us reschedule it. Thank goodness!! It was a bit awkward taking an IV pole attached to a little girl in brown boots and Tinkerbell Pjs but hey! It worked. The IV pump only went off a couple of times :-) As for the appointment itself, we are back to a wait and see holding pattern. Dr Tansey thinks Jordan's size issue is more of a weight issue. He showed us 3 growth charts-one for the height, one for the weight, and one for the combination of the 2. She's in the 8th percentile on her height (she's grown a lot in the last couple of months!) but off the curve for her weight and with taking inconsideration of both her height and weight, she is well off the curve. Right now he thinks it more nutritionally based so now need to pump more calories into the girl! Butter, peanut butter, breakfast shakes...anyway we can get more into her the better. He talked about Turner's syndrome but said it usually happens the opposite way (the kids grow until age 3 and then taper off). He wants to do a thyroid test again before really making any decisions. We will have it done the next time labs are drawn. He didn't want to put her through another finger poking and since she's already anemic, he just held off. We go back in July.



The Home Health Care nurse came to meet us at the hospital too! She gave us a crash course in what we will have to do for Jordan's IV treatments. They are REALLY simple!! Here I thought it was going to be a big IV pump that we've been dragging around with us for several days and it's just a little "grenade" or balls of fluid that is pressurized! No batteries, no pumps, no electricity...just saline and heparin syringes and the IV balls. Jordan even got a little backpack to be able to carry it around in so we can leave if needed. My fears relieved! Lori gave us some supplies to get started and set up a time next week to come and check things out.



SO by 5:00 we were finally on the road to home. Nothing felt so great! The sunset was amazing and I just felt peace. Until 45 minutes later...



We had to have Jordan's dressing changed before we left the hospital. While doing this, her site started bleeding. I could tell the nurses were surprised a bit but really didn't do much about it (at least it seemed to us). They just put some Tagaderm on it and sent us on our way. Well, 45 minutes after being home, we were checking her gauze padding that covers her incision, we found her arm to be pretty bloody under the Tagaderm! It was pooling so bad that it was traveling up the outside of the tubing from the PICC line and started to get on her PJ top. Needless to say FRUSTRATED by this because we knew this is cause for ANOTHER trip to the hospital. We called in to let them know we were coming but then called a friend who is a doc at the U too. She made some phone calls for us and got the PICC nurse, Barb, who put it in originally to stay and re-dress the line again. Barb I'm sure had a long day and was currently in the OR putting in another PICC line. We had to wait about an hour to have Barb change the dressing again. We are so grateful she was able and willing to do it!!

We've come across some really great people during this experience. While I feel some people think of this as just getting tonsils out and what's the big deal, others have really stepped up and helped us out! I know I've said thank you a lot of times but we really can't say it enough!

Ready to walk the halls. I OWN this place! Just ask the nurses!

Hanging with my bros and Daddy! What is this tube for??

This time around Jordan had part of a coffee cup covering her IV to protect it. We put stickers on it to spice it up a little bit! She also had a board and a burn sleeve on it to help protect it even more.

Drunk Jordan Returns...She's coming out of sedation from her PICC line being placed.

We are OUT OF HERE! Let's GO!!

So excited to go home, I can't even stay awake...zzzzz.....

Thanks for checking in on us!!

Until next time~

Tracey

The PICC line is in!!

WAHOO!! After 5-6 attempts to put in a PICC line (2 yesterday, and I think 3 today if not 4), the line is in! I have to admit it was kind of interesting to watch them do it. Our friend, Holly, was there to admin the anesthesia along with Dr. Thomas. The nurse putting in the PICC line had some issues along the way-finding a vein to do the trick & the line hitting a point and kinking again were the 2 major ones. Finally she went above the anticube (found in the inside fold of your elbow), and found a vein that worked. I felt grateful she didn't give up on Jordan's right arm since she is left handed. We've noticed with the IV in her left hand, Jordan doesn't really use it! It might as well be broken :-) And getting her to eat and drink with her right hand is quite funny. Try it with your opposite hand!


After Jordan woke up from her procedure, she was a happy child. Guess what she asked for 1st! FOOD! This girl hasn't really been eating well the last few days and now BOOM! She wants to eat EVERYTHING :-) She also got Jeremy to walk all over and ride the elevators when I went home to get the boys. Do you think she even had a nap today? NOPE! She was going strong until 7 when Jeremy took the boys home. Then she crashed and has been out ever since.


Jordan's blood culture is still negative which is a huge relief. When we first thought she had an infection, Trudy prepared us with at least a 3 day stay to see if the culture would grow out. It did within 24 hours. Less than 24 hours after the 2nd culture, the docs claimed it was negative and was ready to put in the line. Wait a minute...doesn't it take 48 hours for it to grow out? The big thing with putting in the line while her blood is still infected is that the bacteria could attack or sit on this foreign body! With that SO CLOSE to her heart, I was really worried about the timing. Maybe God heard me and is why we didn't get it in until today :-)


Also-Her white blood counts are now 7,000 instead of the 37,000 which is where it was originally. The can also test the inflammation which was 17 (I guess this is high?) and was worried that the infection had also spread to her breastbone. It is now 3. They will send kids home when it is 2 or below so MAYBE we could be sleeping in our own beds tomorrow night!


Now to learn about this IV treatments! We picked a home health care company that will teach us how to do it before we leave the hospital. Today, a nurse explained how to flush and hep lock an IV. Oh am I glad that Jeremy will be there to teach me at first! By the end of this, I'm sure I'll be a pro :-) 4-6 weeks every 6 hours!? That's A LOT of treatments! Dr. Edens, Dr. Scholz, and Dr. Gomez are all looking at the longer time (6 weeks) due to the possibility of the bone infection. Sad thing is Jordan may not be able to go back to preschool during this time because of trying to keep her calm and not get too rough with the PICC line in-she's 3. That in and of itself could be a challenge!!


We have our endo appointment tomorrow too. Who knew we would be here already anyway! Dr. Edens said that we could probably just head down to the clinic or reschedule it. It took us 6 MONTHS to get this appointment!! We are NOT going to reschedule unless ABSOLUTELY necessary! They have already started some of the testing with testing her growth hormone (and whether or not she is deficient) and took x-rays of her hands to check her growth plates, etc. We'll hopefully find out more tomorrow.


Thanks again for all the prayers and good thoughts!! There are times I get overwhelmed with gratitude when I think about everyone who has helped us in some way or another. The prayers, meals, visits and emails checking in on us has been a blessing!

Later!
Tracey

**Jeremy took his laptop home today so I wasn't able to load pics :-) Those I hope will come tomorrow!

It's been a good day with a minor setback!

Sorry I didn't update yesterday! I took some much needed time to chill. As a friend put it a week ago, we've been playing the post-op shuffle (2 steps forward, 1 step back). It's exhausting! We've been mostly moving forward though so that is great!

Yesterday was back to being a downer day for Jordan. Dr Atkins came in and had compared it to what she saw Friday night. Jordan slept a good chunk of the day with not waking up until about 11:30AM and then asleep again at 1:30PM until 6-6:30PM. 1 step back. We met with the infectious diseases doctor who knocked down her antibiotic from the big guns (Vanco) to Nafcillin. 1 step forward! It seems to be doing the trick as Jordan's blood counts continue to go down and her 2nd blood culture has come back negative. Another step forward!

Nana came to see Jordan again on Sunday too. Since she was sleeping anyway, Nana told me to get out of the room for a bit. I ran up to the Patient Library to get some new movies for Jordan and some magazines for me. The Patient Library isn't overly huge but seems to have a good selection overall.

Travis and Ashley came to visit that evening too. Travis tried but didn't get much of a smile out of here either! That is actually a rare thing! Travis gets everyone to smile. The guy is crazy!

Today Jordan has been more herself for most of the day. She sat and watched Cinderella in her Daddy's lap this morning. It was priceless to see but did I pick up the camera to catch it...nope. Wish I had! We had another ECHO this morning too which came back with nothing new. It was done to see not only if she has any pericardium effusion (blood pooling around her heart) but also to see if she had any infections in her heart from the staph bug. Another big step forward!!

Kristy and Ben made the trip down to visit Jorgie Porgie. Unfortunately they weren't able to see much of Jordan! Between doctors checking in, her ECHO, and the weather itself, they were gone again by noon. It was great to see them, just wish they would have been able to stay a bit longer :-)

We found out her docs were ready to put in her PICC line today too. Jordan was scheduled for 3PM which meant that she couldn't eat at all until after the procedure. I was a bit nervous about this since blood cultures can take up to 48 hours to grow out. She had just had a culture done the day before so we hadn't hit that 48 hour mark. After talking to several different docs, I felt a little better about it but still a bit nervous.

We talked to the social worker about which company to use for the meds and the rental of the IV pumps. Also found out from the Infectious Diseases doc (Dr. Gomez) that we are looking at doing meds by Jordan's PICC line for the next 4-6 weeks every 6 hours! Jeremy will be there to help this week and probably next but after that, it will be me at least during the day. This could be interesting!

3:00 rolled around and we took Jorgie Porgie to the exam room to have the PICC line put in. Long story short, even after 2 doses of Versed, the poor girl was just not having it! The PICU nurse who was putting in the line could not get it in after 2 pokes. She kept trying to thread it through but the line kept kinking up and not getting past a certain point. After trying it twice, she called it quits and told us it would have to be tomorrow when Jordan can be knocked out. The nurse didn't know if it was because Jordan was so upset and her veins clamped down or if they were hitting a valve. Regardless, the poor girl was so upset and exhausted from it all, Jordan fell asleep shortly after getting back to her room and continued to sleep for 2 hours!

SO tomorrow should be the day. I talked to Holly (who actually used to be our neighbor!) from Peds anesthesia about the drugs being used, answering some of Jordan's health questions, etc. We are hoping that if Jordan is knocked out, she won't be as upset and then her veins will open better to get the line in. They are squeezing us in so hopefully this will work. Once we get the line in, we could be talking about the h-word within 24 hours!

There are a few things yet to hurdle before the h-word happens. One is the inflamation levels in Jordan's blood draws. They are going down, but Dr Gomez wants it at a certian level before we leave. Also, she needs to be fever free and eating/drinking. Hopefully she'll cooperate!

I will hopefully get some pics loaded tomorrow. Right now, I'm having issues getting them on right now! AGH!

Until later!

Some answers ... more questions...

Just a quick post...

Today we found out that Jordan is on the antibiotics for the long haul! The MRSA test came back negative (YEAH!!) however it is a staph infection and the blood cultures started to grow so now it is in her blood. We don't know the sensitivities yet though so she's going to stay on Vanco. Simply, finding the sensitivities requires testing the bacteria against different antibiotics and seeing which ones fight it and ones that are resistant to it. We will be meeting with the infectious diseases doc tomorrow to find out what the next step is to fight this infection.

Good news is Jordan got up today and walked around with her Daddy and brothers. And when I say walked around, I think we've covered every inch of the halls of this unit :-) We found a 2nd fish tank and that this unit just goes and goes. Luckily a lot of the beds are empty!!! I find that to be a GREAT thing!!

Thanks all for the prayers and good thoughts. We are feeling them!!

Tracey

Opps...so it WAS an infection!!

We have had an interesting couple of days to say the least at the Snyder house! The first couple of days this week were spent watching movies. We've seen Monsters, Inc., Tinkerbell, Shrek, Aliens in the Attic...the list is endless. Trying to keep a 3 year old down to even rest has been a task in and of itself! Overall she has been a non-stop kiddo who if you didn't tell someone she just had open heart surgery, they wouldn't have been able to tell!

Wednesday night we noticed some yuckiness coming out from the bottom of Jordan's incision. It didn't look to alarming but put some triple antibiotic on it with a bandaid and she went to bed. Jordan hadn't acted any different that the day before so really didn't think much of it.

Thursday morning things started to change. Jordan woke up cranky. Now there are some days that she just doesn't wake up happy and takes a bit of time to really wake up. I had just brushed it off to that. She started to act "normal" for a couple of hours but then really started to crash. I noticed her breathing rate had increased, she was agitated and couldn't get comfortable. Poor girl couldn't even stand up straight! She kept saying her tummy hurt but was pointing to where her chest tubes were located. I finally paged Jeremy to tell him that I was either taking her into the hospital to have her checked out at the clinic or to her GP. Jeremy had already talked to Trudy, one of Jordan's awesome nurses, to tell her about the incision so after hearing about this she had us come in to have some tests done.

We started off at the clinic with chest x-rays, blood work, and another ECHO. Jordan did really well for her chest x-rays-listened to the tech and even held her hands above her head for one of the side shots. She even laid really still for her ECHO! We may be able to do un-sedated ECHOs in the future! That could be huge for her considering it can take us anywhere from an hour and a half to 2 hours to get her to finally give in and go to sleep when she's being sedated!

Anyway, after everything was said and done, it was decided Jordan had a viral infection. Dr. Davis and Tina had looked at the incision and thought it looked good. (By then it was dried out and nothing was coming out of it when poked and pushed). Her blood work had come back with the white blood count being high, but Dr Edens couldn't pin-point it to anything other than it being viral.

We went home and tried to get her comfortable again. When she was awake, she either was crying, whimpering, or grunting. It didn't happen easily but finally she crashed and was asleep for most of the night.

This morning the story changed. When Jordan woke up, she was again crying. I went in to check on her. She didn't want me to really move her but when I noticed she had wet the bed, I had a feeling something was up. Jordan hasn't wet the bed in a pretty long time! When I went to move her and try to get her cleaned up, she had a look of agony on her face. And that is when the draining started. The bandaid from the bottom of Jordan's incision was soaked! It was constantly trickling down her stomach. She seemed to be in a lot of pain too. I immediately called Jeremy and Trudy.

We came into the hospital around 9AM this morning. Dr. Edens swabbed the site for infections including MRSA**. We won't know anything until the cultures have been grown out which will take 2 days. Jordan started on Vancomycin this afternoon around 1 and will have a dose that takes 90 minutes every 8 hours. Because of this drug, the IV sites don't last long-around 36 hours-so we might have to have another IV stuck. It took 3 times and a PICU nurse practitioner to get the 1st one in so it may cause Jordan to get a PICC line. These lines are meant for more of a long term IV use and could cause some discomfort. We are hoping the one in her hand lasts as long as it needs too so Jordan doesn't have to get one!

**MRSA or MERSA is a staph infection that is ONLY treated by Vancomycin. Vanco is also a high powered drug and really a last resort drug according to Wikipedia. This could be hurtful to her kidneys so she will be closely monitored. Once her test results come back and it's not MRSA, she will be taken off of it and will be put on something else.

She is comfortable right now. Jordan is still on her Motrin around the clock every 6 hours, Lasix twice a day, Tylenol every 4 hours (to help get to the next dose of Motrin and to control the fever), and Pepcid to help with controlling the stomach acids from her Motirn. Her appetite isn't the greatest and her activity level isn't the highest right now. We are also trying to get her to drink more fluids but also on an IV for them.

Most of our day was like this...

When Nana came, it was like this for a bit!

We got some smiles and activity out to Jordan when Nana came. It was good to see a smile on her face where it had been missing the last couple of days!

We believe this all started because some Tagaderm had taken off some glue off the bottom of her incision far too soon. (The glue is there to protect the incision along with being used instead of stitches on the surface to help with the scar). We were concerned originally when we saw it being put on the glue but just let it go. I really don't thing THAT is going to happen again!

Thanks again to everyone for your continued prayers and concerns. It has definitely been felt here!

About Day 6 and bustin' out!

What a crazy day! Very up and down emotionally which ended on a good but exhausting note!

Around 3AM, Jordan's night nurse came in to tell us that if Jordan didn't go potty, she would have to be cath'ed. She had 2 doses of Lasix and hadn't gone potty for over 12 hours. SO knowing being cath'ed would involve a lot of screaming and crying, I convinced Jordan to at least try. She ended up going and avoided the cath! YEAH! However, because she had not gone for so long, they decided she was dry so hooked her back up to an IV for fluids. And here we go...on Lasix for having too much fluid in her little body, and then adding fluid because they thought she was dry...Then there is the puffiness of her face and belly yet. Luckily, her weight (11.7 kilos) wasn't too far off her pre-opt weight (11.4 kilos) so it could be she just needs more time and more activity. We will just have to keep an eye on it.

When the docs came through for rounds, I really wasn't surprised when Dr Moriss had said they would have a chest x-ray to check for fluid around the heart done on Monday morning and then we could go home. Since Dr Law had mentioned Saturday or Sunday as our going home dates, Jeremy had asked why it got moved to Monday. After some discussion, Dr Moriss said that we could go home Sunday after the chest x-ray was done.

While we were waiting for the chest x-ray to be done, my Uncle Curt and Aunt Pam came down to visit. It was great to see them and perfect timing for us :-)

The chest x-ray was done after lunch and came back normal. We were literally getting ready to go-bags packed, balloons gathered-when I felt Jordan's head. She felt a bit warm so wanted the nurse to take her temp. Yep-she had a fever! AGH! She had Motrin and Tylenol in her system but it was still 101.2. Now the resident told us that was a deal breaker and we are going to be staying the night. A lab was done to see if Jordan is fighting an infection. While we were waiting for the tests to come back, we found out the blood they took clotted and had to do it again! REALLY!?!? Jordan had to have her finger poked AGAIN. She definitely wasn't liking it!

Wasting time in the playroom until the tests come back - We love Hungry Hippo!

After we got the final tests back, the resident told us we had to stay "for sure" especially since her fever kept going up! By that time, it was 101.8-again after having Motrin and Tylenol in her system. It was 6:00. All of this had taken 8 hours and we were here for another night! I wasn't too upset because if she was still puffy and now had an unexplained fever, I'd rather be at the hospital than put her through the stress of coming back because of some infection or complication. We said our bye's to the boys and Jeremy for the night and was getting cleaned up since we didn't really have a chance to earlier in the day. Shortly after they left, a different resident and Dana (Jordan's day nurse) came in and said we could go. Cardiology was ok with letting her go home since we lived close and all they were going to do is watch her with Tylenol and Motirn. While I was happy to go home, I was nervous. Why all the back and forth!? First we are staying, then we're not, then we are, then we're not....very frustrating and nerve racking as a parent! This isn't like trying to decide to go home from a hotel. It's a hospital and there's a reason why we are here. So for them to decide it's important enough for her to be here and then not all day long, made me EXHAUSTED!

We're going home? YEAH!!

SO in the long run, we got to go home. If you would have even asked me Thursday if going home Sunday was possible, I would have said been hesitant but would have said maybe. Then the flip switched in her Saturday and Jordan started acting like Jordan. She still has her moments but it's only been a week since her surgery!! There are other times when we have to tell her to take it easy. She's back to the 3-year-old attitude -"I do it myself!"

Jorgie Porgie is on Lasix (2x a day) for now along with Motrin (every 6 hrs) and Tylenol (every 4 hours). If her fever gets higher, then we are suppose to take her back in through the ER and then she'll "probably" be re-admitted. Hopefully we won't have to put her through that!!

I'm home!! There's no place like it!!

Please keep these kiddos in your thoughts and prayers!
Logan Jacks (cp: loganbear) He has had a bit of a rougher time than Jordan recovering from his surgery on Thursday. The docs think (after Stef and Ryan keeping tabs on his symptoms!) he has Pericardial effusion. This is when the sac around the heart is either inflamed or blood is pooling in it. When a chest x-ray was done, they noticed fluid surrounding his ticker. It will possibly add 3-4 days to his stay. He was doing better when we left yesterday but still pretty weak.

It was great to have them as neighbors! I will miss seeing Stef and our chats every day!! Thinking of you guys!!

Derrick Carter (http://carolinacarters.blogspot.com/) He is in surgery right and just got the update that he is off bypass! Yeah!!

Thank you for all of your support and kindness!!! We can't ever repay you for everything you all have done for us.

Right before bedtime...like it should be :-)

Until next time ~and it may not be tomorrow ;-)

Tracey

Day 6- WE ARE HOME!

I will post about today's CRAZY DAY but for now just know that we are home. Now to snuggle in and enjoy being home :-)

Thanks to all of you for your good thoughts and prayers! They worked!

Tracey

Day 5

Today has been the most exciting day yet!!

Our adventure or our game...However you look at it, we are even closer to going home!!

When the cardiologist (Dr Moriss) and fellow (Dr Agoudemos) came in today, we discussed what we need to have Jordan do before we can go home. It was nice to see Dr Agoudemos since she has seen Jorgie Porgie a few times for appointments and had followed her with her 1st surgery. There are 3 things she needs to do before going home-getting up and walking around, eating and drinking, and peeing some of her excess fluids. They decided to change up her pain meds too. Now we are just on Tylenol and Motrin. While I was a bit hesitant in taking Jordan off the Lortab, I was willing to see what this would do. She still shows pain but in Jordan style, she doesn't let it get her down. The kicker is even though she shows it on her face, rarely does she show it in her stats. Her heart rate rarely goes up nor does her breathing rate. She SOOOO does not want to take medicine that she just tells us that she doesn't have ow-ies. Frustrating!

Grandma and Grandpa visited us. Jordan spent the time in bed but was at least happy! It's been awhile since we have steadily seen her smile and giggle! Ahhh...what a sound it is too! I love it!

After Grandpa and Grandma left, I was able to get little miss out and about. Angie, her day nurse today, gave us a traveling pack (this way she can still monitor Jordan's stats). Once we got things connected and it was reading on her computer, we hit the playroom. I have to admit, I was a bit hesitant in having Jordan play in there. After all we are in a hospital surrounded by sick kiddos. However, it was great to see her playing with the kitchen and "fixing" dinner. Soon she found the bikes and starting to ride one all over the unit! She couldn't wait until Daddy came with her brothers to show them her bike and the playroom. It was great to see considering yesterday, she was screaming, standing at the edge of her bed, and begging to be put back into bed!! Up and around - Check!

Jordan has eaten better today than she has in the days past. The nutritionist was here yesterday helping us with her weight issue. On of the things she suggested was a high protein, high fat, high calorie shake. These can be chocolate or vanilla and are cheeper than the Pedilite or Pedisure. The nutritionist has asked these are delivered to her as snacks but they have become more of her meals. Well...if eating about 10 small bites constitutes a meal...She has also eaten a quarter of a graham cracker, 3/4ths of a cheese stick, 3 chocolate donuts, and part of a choc chip cookie. I claim that Jordan's diet has a baseline of chocolate and while Dr Moriss doesn't really care for that, I'm just happy she's eating. The nutritionist is on the same page with me too :-) Eating-1/2 a check...

Drinking has also been a challenge. While she's getting better, she still has only had a carton and a half of milk today and a couple sips of water.

One way of battling her fluid issue was to increase her Lasix to have a dose put directly into her IV. The also took off her potassium this morning hoping that by taking Jordan off her fluids, it would make her drink more and therefore make her output increase. Well, even though I am no doc, I think it backfired. They put her Lasix in her IV around 2pm. She hasn't peed since then. It will be interesting to see what she weighs tomorrow. This could be our stickler! Peeing excess fluids-no check....

Poor girl was so energetic today that it took a bit to calm down and take a nap. Completely opposite as the last couple of days, today no naps were taken! Since Jordan was seeming like she was itchy again (she's rubbing her nose and eyes like CRAZY), she got some Benedryl tonight and finally fell asleep around 6:30. Other than her meds around 8:30, she has been asleep ever since. I really hope she sleeps through the night.

We found out a great surprise this afternoon too! One of Jordan's heart friends, Logan, was going to be our next door neighbor! He was moving down from PICU after having surgery on Thursday. I think it was a surprise to his parents since even though he has had 2 surgeries, Logan keeps them on their toes and has long stays in the PICU. Stef came over to visit after her little man was settled in. Oh was it nice to see another heart mom. When she came over, we both vented and gave each other hugs. Later, when I was out roaming around going to grab some grub downstairs, I ran into Ryan (Stef's hubby) who offered to grab me a sub. THANKS RYAN!!! It was yummo!!

LOOK! Only leads!! No more IVs!!

Jordan is starting to get her groove and smile back!!

I need to say a quick thanks to Help-a-Heart too. They supplied Pitas from Pita Pit yesterday (Friday) for lunch! YUMMO!! They have also sent a Tinkerbell balloon to her which she loves.

Until tomorrow~

Tracey

Day 4 The game

It's already Friday!? This week has gone by pretty quickly!

Today was pretty uneventful other than the temper tantrams and puffiness. Yep-Jordan's getting stubborn-imagine that!! And a game was played-Jordan Vs. Mommy and Daddy

Round 1-The Right to retain fluids-

I had noticed yesterday before we left the PICU that Jorgie Porgie had started to get puffy and swollen. Her right eye was swollen and by the end of the night, the right side of her face was a bit puffy. Dr Law started her on Lasix and got her to go potty a BIT more. Hoping this would "fix" the problem, I was reminded that Jordan is the leader here and puffed her stomach out. The resident came in after I noticed this, but proceeded to tell me that all was fine - that her stomach was soft and had good bowel sounds. Sorry but the girl's deep belly button is all but missing! Dr Law came in this morning to do rounds and immediately said that he dind't like the way she looked. I thanked him for making me feel NOT so crazy anymore by saying that! She's on more Lasix now and trying to lose the water weight. Not so much today but hopefully she will lose more.

Jordan - 1, Mommy & Daddy - 0

Round 2- Getting up to walk-YEAH RIGHT!

Yeah right! This girl wanted NOTHING to with getting up to walk! We tried just about everything. We had taken her to the potty and had her walk back along with her going out to nurses station and have her walk back to her bed. She threw a COMPLETE temper tantram which kind of served the purpose! She ended up stomping her feet and well shortly everything but throwing herself on the ground. What ever gets the juices flowing baby! It is hard and just sad to see her stand beside her bed and just "want my bed, Mommy". The temper tantrams and wanting to go to bed just aren't things she usually does or wants.

Jordan 2, Mommy and Daddy, 0.

Round 3- Echo.... Echo

At around 2:15 or so, an Echo was ordered. One is usually done prior to leaving so again 1 step closer to bustin' out of here! We weren't given much notice so didn't get a chance to prep Jordan with what was about to happen. On top of it all, she was asleep and never wakes up well when she's not ready to be woken up. We had to carry her down to Peds Cardio to havce it done. Once we got there, Jordan really let us have it. She calmed down after a short period of time and fell asleep during the Echo. This allowed the tech to get a great look and she wasn't even sedated this time :-)

Jordan - 2, Mommy and Daddy - 1

By the end of the day, our little girl is just plain pooped. She was out for most of the afternoon and evening. Even when Nana and Becca came, she really didn't do much but say no and sleep. Jordan ended up getting the itchy nose thing going on so has had a dose of Benadryl. Hopefully this will help knock her out for the night and get some good, solid sleep.

Tried to bribe her to get out of bed...yeah didn't work but then also couldn't get the boots off without a lot of crabbiness...

Until tomorrow!

Tracey

Day 3

We are on Day 3 of our adventure. I say adventure because this has definately been one. We have had surprises, excitement, and only a few setbacks.


Jordan is chest tube and pacermaker wire free! These were removed around 10am. We are hoping that now they are removed, she will be more willing to get up and move a bit more. Trying to walk just even to go to the bathroom has been challenging. Right now she takes 2 steps and then looks at one of us to pick her up. Any of you whose kiddos have had surgery know picking them up is a challenge in itself since you can't pick them up by under their arms for fear of hurting their sternum and the incision! Instead you have to scoop them up. Anyway, after she gets back to bed from her little trip, she's plain exhausted and is out for at least an hour.


This morning we also found out we were moving to the floor!! I was a bit hesitant but know that we are just 1 step closer to going home. We were down on the floor by 2pm. The downfall is now we have to "share" our nurse. In the PICU, Jordan was one-on-one with her own nurse. It was nice since I would start talking to her and didn't feel like I was intruding or taking her away from someone else. We could almost always find her just outside Jordan's door if we needed anything. Not so true on the floor. Jordan doesn't need as much now though either. Monitoring, pain meds, and help going to the bathroom is about all we need right now. She's been sleeping though most of the day anyway, but if she wakes up more and gets to walking around, we might be able to hit the playroom. Well maybe play in her room with her new toys and colorbooks......


Because of the move, we had someone pick up Riley and Drew from school and hang with them for the afternoon. Around 5, Jeremy went to pick them up and took them to BWW to eat some wings. I feel bad that I can't be there with them but I feel I need to be here. They understand that I need to be here and if it was either one of them, I would be here for them too. This just stinks all the way around. I did get an email from Drew's teacher saying that he seems to be doing well with the whole situation. I've talked to Riley about it and even though there are times for him to think about what is going on with Jordan, he knows that I have to be here for her. I don't think being able to go to a new friend's house along with going to BWW has hurt at all either!!


When Jeremy came back with the boys, I was able to stop by the Heart Friends meeting. It was nice to just walk down the hall to the meeting knowing that if I needed to, I could be back in Jordan's room within seconds. I was also surrounded by people who knew what I was going through. After the meeting was done, Jordan was showered with gifts. It was very sweet and really meant a lot. Their kids even got into it and made pictures for Jordan's room. They are now on her wall for all to see :-) Thank you Ladies!

Jordan has had a bit of a rough night so far tonight. After Jeremy took the boys home, we have tried to give Jordan some pain meds. She is off now off Nubain and now on Lortab (Tylenol and Hydrocodone) and Lasix (diuretic). She decided it wasn't all that great and vomited it back up. Then we noticed she had a pretty bloated tummy. The resident came in to check it out and is going to keep an eye on it.

Jordan also started Lasix tonight. Even though yesterday she needed fluids because she was dry, today she started to retain water and getting puffy. I noticed her eye was puffy this morning and by tonight, her left side of her face looked a bit puffy. The Lasix should help this and also make Jordan go potty more!

I have been really overwhelemed with the support and gifts this time around. Don't get me wrong-the last time Jordan had open heart surgery, we had support. This time feels really different though. We always expect our family to be behind us-after all it is their grand-daughter or neice that we are talking about here :-) Our friends have really stepped up too! We have people who we didn't have in our world 2 years ago, offering to pick up Riley and Drew from school, meals prepared for us, gifts for Jordan and pictures to put up on her wall in her hospital room. We can not say thank you enough! Everything you have done has help us be able to concentrate more on Jordan's recovery!

Stats look great while sleeping!

Chest tube free and the tell-tell tale of CHDs present in our baby's little ticker...Dori is going to look over her tonight!

Until Tomorrow's adventure,

Tracey

Day 2

Oh my goodness! It is amazing what happens when a poor little girl gets some sleep!

The night didn't get better until around 5AM! Our poor little baby just couldn't go to sleep. She was good for the first 15-30 minutes of her dose of morphine, but shortly after that amount of time, she just couldn't get comfortable and acted like she was in pain again. After our constantly asking why not just use Nubain for her pain, FINALLY at 4:30 they gave it to her. And what do you know? By 5, she had been out and more comfortable. Jeremy switched with me and watched over her. I was finally able to get some sleep then too.

Believe me, people heard about not giving her Nubain earlier too. Don't mess with our baby! We do know a thing or two about how she reacts and how her pain can be treated. We weren't lying that she just gets ticked with morphine!

The day today was good though! Even though she slept through most of it, she was able to lose her J-line (**I had been calling this a PICC line so I stand corrected), Art-line and her catheter. Yahoo! More and more things for her to not have to move around and be hooked too. We are having issues with her urine output but pushing more fluids so hoping that will help.

Another EXCELLENT thing that happened today was Riley and Drew were able to make Jordan smile. TWICE! She hasn't smiled at anyone else yet so it was nice to see her do it. Hopefully we will be seeing it more and more as the days go by!

Well-I wasn't going to post so late tonight but Jordan had woke (yes I did get some sleep tonight) me up and now am wide awake. I'm going to try to get more rest now but here are some pics!

Trying to catch some zzzz's before the big day. Yep-we cheated and let her sleep with us. Welll...I let her sleep with us and Jeremy just didn't fight me this time :-D

"Daddy! Let me paint your face with my Polly Pocket!" Waiting in Day of Surgery for anesthesiologist to come get us.

Shortly after Jordan came back from Surgery. I thought she looked pretty good. That cordal block did well for her I think!



And tonight! She's happier now that she can move around without laying on her J-line!

Nighty nite all!

It's 2AM!

I'm sitting here in the dark wondering...It's 2AM! Why am I still awake? Why are we here? Why do we have yet new worries now on our plate?

Jordan is waiting for another dose of morphine but is snoozing now. She is just plain pooped but can't stay asleep. We know her stats are good and she's not on any meds for her ticker but she's on morphine every 2 hours. It's frustrating because she just doesn't know what she wants and we can't really tell if she's in pain. AGH! She doesn't want medicine. Good thing she's got what...I think I counted 10 lines so needless to say PLENTY of ways to get it into her system with out her knowing it. For her lines, she has:

1. 6 in her neck. This is her PICC line and goes directly to her heart. The best way I can discribe it is 2 "panels" of 3 ports (I don't know if this is the right terminology but I think you understand what I mean). She has her blood work drawn here and her morphine put in here.

2. An IV in 1 hand. Here is where she's been getting her antibiotic.

3. An IV in her other hand. Doesn't lead to anything right now.

4. She also has an artieral line in her wrist. This has 2 ports.

She's been definately needing the O2. We tried to start getting her off of it because she just wasn't having that canula stuck in her nose. When she has it on her O2 is in the mid to low 90s. When she's off, it definately dips in the 80s and when she's mad, it dips even lower. I think I've seen it as low at 68 now but it jumped back up fairly quickly. So instead of the canula, she's getting blow by. This is where they let the O2 run from the mask into her face. While she still gets a bit annoyed with it, she's at least not trying to rip it out of her nose!

She is also has leads on that constantly tell us her blood pressure, breathing rate and how deep her breaths are, venous pressure, heart rate and O2 rate.

The other news we heard today is that Jordan's journey with CHDs is definately not over. What we thought was a membrane was actually more scar tissue than a membrane. Dr Davis was able to cut most of it out but it is still narrow leading to her aortic valve. THEN there is the aortic valve. Dr Davis has told us that she has a bicuspid aortic valve. Typically this means that she has 2 leaflets instead of 3 (the valve looks like the Benz logo normally). After talking to Dr Scholz, we found out that it is more of a hybrid of a bicuspid valve. It is more at the outside of the leaflets where it is fused together just a bit. SO again-more of a hybrid problem for her like her AV canal. But definately more of a worry for me.

The good news about it is that it isn't bad enough where we will have to restrict her activities and "normal" everyday life. She still won't be on any medications for now either. It may need to be replaced still later down the line but who knows when. That is in Jordan and God's hands. We will know more as the week unfolds too.

Well she is starting to stir again! I will post again later.

Update #...oh I forget...

Jordan is doing pretty well. We are working with the doc for her pain meds. Before when she had morphine, it was a LONG 1st night. We talked to the docs about it this time around and decided she would start off on Mophine to see if maybe she has grown out of it. She has it about every 2 hours so hopefully we can keep on it. If..ok more like when...she gets mad, boy she lets everyone know it. Her stats go way up, alarms go off, her O2 goes down so...she quickly rebounds when she's not mad anymore.

Problem with Jordan and pain is that she is a stinker! Her pain tollerance we've decided is high so there are times that we don't know if she's getting aggitated from the Morphine again or if she's actually in pain.

She is also running a high fever. Her nurse took a blood sample to culture and is treating her with Tylenol. Her platelets are rebounding and hasn't had any blood transfusions. Her drainage is already starting to turn colors (from a deep red to more of a koolaid color) which is good too. We had another chest xray done but it looks good and is comparable to the one they took yesterday.

I know this is choppy. Some of it is because I just wanted to get it out for our journaling-the other part is I'm just plain tired :-)

Extubated and Doing Well

Jordan has been extubated already and getting off her meds. She is doing well. We found out some other news but will update more on it later. She looks much better than she did last time so already a huge difference!!

Until later,
Tracey

Update #2

Jordan's PICU nurse just got a call to go down and get her. I'm taking this as she is off bypass. She will be on the floor in 30-45 minutes.

Update...

I had taken Peanut to the OR around 8:00. Dr Davis was able to start going though her scar tissue around 10:20. It took about an hour and started bypass at 11:20...

Lord...She is in your hands...

Yesterday was a hard day. We brought Jordan in for her pre-opt screening and all the feelings came rushing back. The thoughts of her coming down the hall with her vent, hooked up to so many machines, medications, and the tell tell tale of the day's outcome-the insision down the middle of her chest and the chest tubes hit me like a ton of bricks...

Jordan did really well though until it was 12:30. She was hungry, wanted to go home and we still had to see anestesia. Finally at 2pm we left anestesia but THAT is a whole other story that I'm just going to let go for now...

This morning we arrived at 6AM. By 7:40 the anesthesiologist fellow and attending were talking to us and giving Jordan a dose of something to calm her nerves. She was practically stoned by the time I took her into the OR. She was out within minutes and didn't even fight it this time. Was it the Twizzler chapstick they rubbed into the mask or the medicine they gave her before she left? Hummmm...

I don't have the "luxury" of not knowing what to expect this time. While I don't know the outcome (oh I pray for no complications), I know what she will look like coming down that hall. I know she will have issues coming out of the morphine if it isn't addressed. I know it will be hard to hold her that 1st time with the PICC line in her neck.

I also know that she is in the best of hands here. I know that the Children's Hospital is one of the best in the country. I know Dr Davis will take care of my baby. I know God is watching over her.

Please keep these other kiddos in your heart and prayers this week too...

Logan Jacks - He will be joining us in the PICU on Thursday having open heart surgery. He will be having the Rastelli procedure.

Andrew Huegel - He will be here Friday for a cath proceedure. Please pray that he this turns out well and surgery is far out in the future.

Derrick Carter - He will be having his second open heart surgery on Monday.

Please visit his blog to send some words of encouragement and good thoughts their way!

I will add pics when I get a chance. I'm not using one of our computers so no access to USB.

Until then ... Lord, She is in your hands...

Tracey