Who KNEW?

Ahhh....I can breathe again...


Who knew our journey down the road of CHDs would start the year out from here:





To Here:





To Here:





Back to Here:





And now Here:





But that is part of the problem! We didn't KNOW! We didn't know what CHDs really were when I was pregnant. We didn't know just how quickly things can change. SO because we didn't know, we are now helping others KNOW!


Our lives changed once those words "Your daughter has a heart defect and needs open heart surgery." Shock, disbelief, and fear struck our hearts! We Googled and WebMD'd AV transitional canal to see what we were really looking at in regards to Jordan's ticker. We were given a little more than a week to get prepared for that 1st surgery. However, I don't think ANYTHING can really get you ready to see your child out of surgery.

Little did we know that we were going to walk down that road again! December was another eye opener to us~

Since Jordan's 1st surgery, we've joined groups to not only support each other but also to help raise awareness of such a deadly disease. We have made some really great friends who we know we can lean on at any time. People who we have never met in person have become part of our Heart Family. We would do anything for them as they would do for us.

This past year I have joined forces to help raise awareness for CHDs! I want to help new and expecting parents to know what to ask for when it comes to prenatal testing. Some things are pretty inexpensive like a pulse ox test before you go home with your newborn. Others are what to ask when having an ultrasound done.

There are 40,000 babies born with a CHD every year. Too many of them will not see their first birthday because their parents didn't KNOW their child even had a CHD. Others will battle with weight and feeding issues like Jordan. CHD babies tend not eat until they are full. They eat until they are satisfied because they are just plain worn out. We don't think about it but could you suck on a bottle for 15-20 minutes when you are tired? It takes a lot of energy for a baby and if you don't have it, you don't do more than what you have to. This is why some kiddos end up on feeding tubes!

We found out about Jordan's CHD only when she was in congestive heart failure. Because her heart had to work harder, a murmur was thought to be heard. It was the swooshing of blood through her septum wall. Had we asked for further testing when her murmur was first heard at 1 day old, we may had KNOWN more. We didn't get Jordan's heart checked out because it was thought to be a ventricular murmur which many babies are born with. These tend to seal up on their own. Because we didn't KNOW, we didn't push.

This week, February 7-14th is Congenital Heart Defect Awareness Week! I, among others, wrote to Governor Culver for this proclamation in Iowa. It was GREAT to receive it on Christmas Eve. Be prepared to see more awareness brought on Facebook, blog sites, and outside events!

------------------

Update on Jordan~ Jordan is doing GREAT! She is still getting her IV treatments every 6 hours (that 2AM is KILLER) but we've talked to the Pharmacist who was able to knock down the dosing time from 1.5 hours to 45 minutes. She is still getting the same about of the antibiotic. She's just not getting as much saline with the dosing.

Jordan has joined what I call the "general population" at daycare since Jeremy went back to work on Thursday. We are also looking at starting preschool again on Monday. Because she will still have her PICC line and recovering from her surgery, she won't be able to get rough with the other kids yet, but she will at least be able to be with her friends again. I know she's been missing them!

How will our year end? Only the Man above knows! In our CHD world, I hope and pray Jordan is back to 100%, Jordan's Heart Friends stay healthy, and more money is spent on CHD research to find more ways to help other kiddos!

Until next time!

Tracey

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!