It's nearly 11pm Tuesday evening, but now that I'm back in my room at Ronald McDonald, I will try to catch you all up to date more.  I went back and read my last post from October and realized Reagan was still getting the Lovenox shots for her blood clot back then.  Since then, we stopped the shots on Oct. 30 and followed up with the cardiologist and hematologist about 2 weeks later.  Based on the echo in November, there were no visible signs that the clot had gotten any worse or better, for that matter.  The hematologist was comfortable with stopping the Lovenox treatment and simply going back to her one baby aspirin daily regiment to keep Reagan's blood thin and flowing.  Also, since that decision was made Reagan's cardiologist, Dr. Johnson, has kept very close tabs on the clot by echoing it monthly.  When we saw him in December, the clot appeared the same then about 2 weeks ago at our January appt. the echo seemed a little worrisome to him, appearing to have less blood flow past the clot.  He wanted to schedule an MRV to get a better look at the clot as compared to the MRV she had done on it back in Aug. or Sept.  After checking with the hospital however, this procedure could not be scheduled outpatient for Reagan until Feb. 11 and he did not want to wait that long.  He checked with the hematologist and she suggested a blood test first that can be done to tell whether someone is forming clots or not.  So on Jan. 21 she had a blood draw done to check her d-dimer level.  It thankfully, came back at an ok level with both docs so we went back in on this past Friday, Jan. 28 to re-echo the clot again.  Thankfully, that echo appeared to look more like the clot had been looking in the past and did not concern Dr. Johnson as much.  He then told us he would speak with her hematologist and decide whether they wanted to pursue the MRV on Feb. 11 or simply continue echoing it frequently. 
Now that you are all caught up to date on the clot, I will catch you up on her respiratory status.  Back in Aug. or Sept. Reagan was admitted as well with some kind of respiratory virus requiring oxygen and a few days of monitoring in the hospital.  Since then, however she has been doing wonderfully at home until about 2 weeks ago.  She simply started with a clear runny nose and a cough for about a week.  After about a week of this, last Monday morning, she woke up with fever and vomiting and her nose was progressively worse (thicker and greener).  She started on an oral antibiotic Monday for what I thought was a sinus infection and the fever went away after Monday evening.  The cough and nose however hung on all through last week.  She also lost her appetitie and has not really been eating much for about a week.  Then Saturday it was beautiful here in Texas so I took the kids to the park to play and then we went and rented a movie to watch.  After getting home, Reagan asked to take a bath around 5pm, earlier than normal for her, as we had not even had dinner yet.  I went ahead and put her in the tub and while she played starting fixing our dinner.  I then went to get her out of the tub and while dressing her for bedtime, she asked to go to bed.  A little ironic, as usually her bath gives her a second wind to make it until bedtime.  I thought she might just be messing around, so I went ahead and layed her down and said I'd be right back while I went to fix Nolan's plate.  When I went back she had fallen fast asleep so I had that Mom feeling that something wasn't right.  I immediately, put her pulsox monitor on to check her oxygen levels.  Her oxygen sats were at 78/79 and should be above 90.  I then gave her her nightly breathing treatment to see if this would help.  Her sats came up to about 85 after the treatment but no higher.  I then new I had to put on oxygen on her.  She then started worrying me, as she would wake up, vomit, then go right back to sleep, wake up, vomit, go to sleep, etc. as well as her breathing became more labored.  I immediately texted her cardiologist for his advice and began making phone calls to make arrangements for Nolan so I could take Reagan to Austin.  Thankfully, our wonderful cardiologist phoned me, even though he was at a Gala for the hospital (the biggest fundraiser they have all year... black-tie event) and agreed that I should bring her in.  I profusely apologized for disturbing him, as he laughed and said that the timing was ironic, as he was at the Gala in his tux sitting at the same table with a fellow cardiologist that happened to be on call for the hospital this weekend informing him that Reagan has a low threashold for being admitted right now so be aware.  After apologizing again, his response was "It's fine, after all, that's what this Gala is for, kids like Reagan."  He then said he would call ahead to the ER to give them a heads up we would be coming in.  Thank you, Dr. Johnson!  We love you!
After arriving at the hospital, I was so thankful Dr. J called ahead for us as the waiting room was packed like I've never seen it, wall to wall patients, coughing their heads off.  We were taken right back and she was given an x-ray, i.v. and blood cultures drawn.  It was determined she had some type of pneumonia and given her first round of Rocephin while in the ER and told we would be admitted, just had to wait until a bed was available as the hospital is swamped right now with sick kids.  Nolan ended up having to go to the ER with Reagan and I and the wonderful Child Life Specialist brought him a GameCube to play while we tended to Reagan.  After my mom and Lonny got to the hospital and PawPaw Lonny took Nolan to a nearby hotel for the night, Reagan decided it was her turn to "play" the game.  Here she is trying her hand at video gaming.  Not sure she got the gist of it, but at least it was something to keep her mind off things and occupy her while we waited to be moved to a room.

Sunday, we just hung out trying to keep Reagan comfortable as she still did not feel well.  No more fevers and the vomiting finally subsided.  All day, Sunday she was on 2 L of oxygen and getting round the clock i.v. fluids to keep her hydrated as she still did not want to eat.  Last night was tough leaving the hospital to head over to RMH as she was crying for me and not wanting me to leave.  I knew however, I had to get some rest myself and that she was quite tired and would be falling asleep soon herself.  My mom stayed with her the evening and I was able to retreat to our room at RMH for a nice shower and night's rest in a real bed.

We love Ronald McDonald House Charities and so appreciate what they do for families like ours.  Here is a pic of the kitchen we are able to walk in to at mealtime and have a meal all prepared for us. Such a blessing!

Thank you to all of you who buy those Happy Meals to support RMH!!

As far as Reagan's day today, it has been a better day, she has had more energy and played and smiled more.  She has remained on the 2L of oxygen and is receiving the vest with her breathing treatments that help break up and shake around all that mucus to get it moving out of her lungs.

Also, on Sunday, we were told that the blood cultures drawn in the ER came back positive.  As this is not a good thing to have a blood infection for someone with a clot, they began a second antibiotic via i.v. Vancomysin to treat this.  The docs however, had the nurse redraw a new blood culture to send off before giving the first dose of Vanco to make sure it was not a contaminated sample.  All day today we awaited those results but are still waiting.  Hopefully, by tomorrow, Tues. we'll know for sure and pray it's negative so we can stop the Vanco and only have to worry about treating this pneumonia.  Also, while on Vanco, blood has to be drawn daily to check her Vanco levels and with an i.v. that will no longer draw blood, they are now having to stick her each time for this. 

The later part of today, her oxygen levels were doing much better in the upper 90's so I requested before leaving the hospital tonight if we could begin weaning her oxygen support as she would have to be at a lower requirement before she could go home.  In the late afternoon/evening tonight she also began eating small amounts of food, which is another requirement, being able to be adequately nourished and hold it down.

Here she is tonight eating one of her favorites.....

none other than Cheetos!!

Lastly, I had to add this pick as it cracks me up and I know it will her Daddy.  With all of her "attachments", making it to the potty is a little difficult so Reagan has learned to use the bedside potty.

I know she'll shoot me for this one when she's older but poor baby, it looks like she should be in an old folks home instead of a children's hospital! HA!!

 It is now 11:45pm and I am going to head to bed and pray for a negative blood test tomorrow and a great day of being able to wean her oxygen support.  Thank you all again for all your support and prayers.  We couldn't make it without it.



It's been a long time but unfortunately..............

Hey everyone,
I know its' been a long time since updating and  there is so much I could tell you about how wonderful Reagan has been doing but last night we were actually admitted to the hospital in Austin.  Reagan is getting iv. fluids and i.v. antibiotic for pneumonia.  She spike a fever of 104 last night and started having labored breathing and requiring oxygen as well as vomiting.  She also doesn't have an appetite.  With her blood clot that the doctors have kept very close tabs on the past few months, it is important that she not get dehydrated and therefore had a very low threashold for being admitted to the hospital.  She is in the IMC (Intermediate Care Unit) at Dell Children's.  My mom Joan is here with me helping and I am actually over at Ronald McDonald House.  We just got a room and am checking in.  Thank God there was a room where we can take turns retreating to for some much needed rest and food.  We spent most of last night in the ER and finally got to a room and settled in about 3:30am.  Not sure what the plan of care as far as how long she'll be in the hospital or how long of an antibiotic course they will treat her for.  Still in early stages of figuring out if it's a viral or bacterial pneumonia but with her history they are treating with antibiotic to be on the safe side.  Also, the hospital in swamped with kids with the flu.  Please pray Reagan doesn't get the flu while we're here.
 Thank you to Marisa Conley for having Nolan over today to play and for PawPaw and Aunt Kay helping out as well manning Nolan.
I will try to keep you all updated when I can.  Thank you for all your prayers and continued support.
P.S. Please pray for Rod, as he is miles away worried about his baby girl!