Wednesday, October 6, 2010
Monday, August 23, 2010
Monday we started off with chest x-rays which wasn't a big deal. Getting her to fall asleep for her "nap" for her echo was a challenge. She wasn't sedated for her 1st one since they had planned it around her nap time. Throughout this whole time we have only seen residents, med students, and fellows. After Jordan's echo, the fellow looked at the results and clammed up. He wanted us to come back and see Dr Scholz that afternoon. I had a feeling that something more than a murmur had appeared on the echo but just convinced myself I was over reacting.
Jordan's diagnosis was more than a murmur. She had an Atrioventricular Septal Defect (AV transitional canal), a cleft mitral valve and was in mild congestive heart failure. She was in surgery on August 22, 2007, to repair her defects. This was when everything became real. No one or nothing can prepare you to give your daughter over to a surgeon whom you just met 3 days before to "fix" an part of her body that is essential to live. No one prepares you to see your child being wheeled out with tubes and wires that are all necessary to keep her stable. And no one or nothing prepares you to see your child on a vent to help her breathe.
Jordan rebounded quickly and we were out of the hospital in 5 days. This was "suppose" to be it. She was "only suppose" to have yearly appointments to keep an eye on her and her mitral valve since it still regurgitated due to the cleft. Little did we know that we were not done.
Jordan within hours of her surgery. While this is a hard picture to see, this is what makes it real for others. This isn't tonsil surgery...
Today Jordan is a vibrant and energetic child who attends preschool and acts just like every other 4 year old I know. She has had some delays in speech and some of her early milestones were reached later than heart healthy kids. Her pressures are down and we are on 6 month visits right now. We know there are more surgeries in her future. We just don't know when-it could be next year or it could be 20 years from now. All depends on how her heart handles her growth. She's been told she can't play football, wrestle or be a heavy weight lifter when she gets older by Dr. Scholz. She handled that news pretty well :-D
Jordan just turned 4! Blow those candles out baby!
Monday, April 26, 2010
I had to step away for awhile from the CHD Community for awhile. After Jordan came home with her PICC line, we went into survivor mode. Living in 6 hour increments can really take a toll on a person. I have a new appreciation to those of you who have or had to deal with feeding schedules, med schedules, and just overall giving that higher level of care that sometimes our kids need. I felt for awhile that we had a newborn again! Because of my day schedule between preschool and daycare, we couldn't move our 2AM med without causing issues with the others. Luckily, Jeremy and I had switched every other night so that at least one of us was functioning! I would still wake up but I didn't have to get up!
Jordan's meds ended the 1st week of March and the line came out after the culture came back negitive for infection a week later. SHE WAS SO HAPPY! We had let her go back to preschool but asked that she would stay inside for recess. To be able to go out and play with her friends...it was priceless to see her smile that 1st day!
Once I knew Jordan was FINALLY on the mend, I ended up closing down. Part of it was shear exhaustion from not sleeping a full night in months, but a large part of it was from emotional exhaustion. Looking back now, I can see that I was almost numb when Jordan went BACK to the hospital and had to stay because of her infection. To find out that they were treating her for one of the WORST staph infections you can get (MRSA), (THANK GOD those test came back negitive), then finding out we were going to have IV meds for the next 6 weeks was emotionally consuming for me. My worst fears were coming true. Jordan had gotten an infection and it was in her blood stream and possibly in her bones! But you know what? Like everything else that is laid before her, Jordan kicked it and made it look easy. Once I realized that, I started to make my way back to me being me again! It's taking some time but I'm getting there!!
Now we are ALL a happy, HEALTHY family. It has made us each stronger and more grateful for each day. Riley and Drew now understand more of Jordan's heart issues and have seen her at her most fragile state. They are now her fiercest protectors. Riley wanted to do Jump Rope For Heart at school this year! He went around to neighbors to ask for donations which went to the American Heart Association. He also got a good number of kids in his class to jump in honor of Jordan. What a sweetheart!
While this year's walk was again done in the rain, I thought about the kids who have had surgeries in the past year, those who have earned their Angel Wings, and those who have just begun their battles. It could have rained, hailed, snowed and sleeted and it still doesn't compare to what these kids walk through daily. I was happy to be wet and walking. It was SO worth it!!
I'm still in awe...
Friday, February 5, 2010
Who knew our journey down the road of CHDs would start the year out from 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.
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!
Friday, January 29, 2010
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.
Thursday, January 28, 2010
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!
Tuesday, January 26, 2010
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!
**Jeremy took his laptop home today so I wasn't able to load pics :-) Those I hope will come tomorrow!
Monday, January 25, 2010
Saturday, January 23, 2010
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!!
Friday, January 22, 2010
Monday, January 18, 2010
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 ;-)
Sunday, January 17, 2010
Saturday, January 16, 2010
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...
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!!
Friday, January 15, 2010
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.
Thursday, January 14, 2010
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!
Wednesday, January 13, 2010
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.
And tonight! She's happier now that she can move around without laying on her J-line!
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.
Tuesday, January 12, 2010
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 :-)
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...