Summer... almost!

The kids are out of school now! I am so looking forward to a schedule that is not packed so our family can enjoy spending time together.

I have to work on Tuesday :( and then we head to the beach! My side of the family is going to Nags Head this year --- there will be about 30 people there at various times throughout the week. It's always a blast --- crazy, but a blast!

Last Monday afternoon, Zach started running a fever. Once we got his fever down, he acted fine. Tuesday, he stayed home with Daddy and he ran no fever so we thought he was ok until 5pm when it started again. I took a look at his throat, which looked like he had 2 red-hot fireballs (you know the hot candies?) stuck back there. When I saw that, Zach did tell me that "his tongue hurt". The child hardly ever complains! I declare that he does not feel pain the way other children do, with all that he's been through. Anyway, I took him in on Wed. mornint and the dr. said his throat looked "impressive" but the strep test came back negative. She decided to treat him with an antibiotic anyway because the strep test is only about 90% accurate. He seems to be back to his old self again and was able to finish out the week at school.

So now, as a reward for taking such good care of Zach, I am the one suffering with a sore throat and now a "like-a-faucet-runny-nose" and sneezing. UUUGGGHHH! I woke up at 5:30am and could not go back to sleep. I kept trying to sneeze but could never get it out. My eyes are watering and watering. Please pray with me that everyone else can stay healthy for our beach trip.

Also, I have a couple of other prayer requests... Our neighbors, Jo and Al, have a new grandbaby. They knew something was not right all during the pregnancy but the possible diagnosis changed with each doctor's visit. He was born on Thursday, and they know he will have surgery sometime because his esophagus and stomach do not meet. I do not even know his name yet, but you can pray for Carter and Amy, his mom and dad. Many of you with heart babies know how they are feeling right now.

Also, please pray for Emma and her family, who go to church with my mom. I think Emma has the same heart defect as Zach and she had surgery on Thursday. I do not know any other details yet but will update when I know more.

Hope you have a blessed Memorial Day Weekend! We have so much to be thankful for in our country and we owe so much to those that made the ultimate sacrifice for our freedom and those who are serving us at this moment. Remember them this weekend!

Mystery Bug - Be Gone!!!

We really thought Zach was on the mend after my last post but he started coughing more and more on Thursday --- and had a fever over 102 Thursday evening. We called and talked to the answering service and the doctor advised that if we could not get his fever down to take him into the ER. Fortunately, we were able to get it down with Tylenol. Daddy slept with Zach in the recliner so he could be sitting up more.

Friday morning we were on the phone at 8am and got an early appointment. The doctor we saw always seems to listen more aggressively to their lungs than any of the other doctors --- he had helped Rebecca last Fall when she had allergies with a cough that would not quit. We may switch and start seeing him regularly. Anyway, he could hear something going on in Zach's left lung and bronchial area. They tested for RSV (another nose swab) and tested for walking pnumonia (another finger stick) but they were both negative. Nonetheless, he prescribed Azithromax, a steroid, and breathing treatments (he cleared this with our cardiologist first).

Coughing MORE is not Zach's idea of getting better --- unfortunately that is exactly what these meds are doing. Helping him get the gunk up and out. Bless his heart, he could not get to sleep for coughing last night. We tried him sleeping in our room. He had coughing fit after coughing fit so daddy took him to the recliner. Still more coughing fits. Did I mention that each coughing fit results in Zach gagging and sometimes hurling? So, Mommy slept on the couch next to the recliner so she could help manage cleanup. Not a fun night.

Oh, and did I mention that now I have a sinus cold??? Sigh.

Despite my whining, we do have so much to be thankful for. God is so good and I am trying to keep an attitude of gratitude. First, I have to go blow my nose.

We are getting ready to get all the Christmas decor down from the attic. Zach keeps asking when we are going to put up the tree, so maybe the excitement will help him feel better. Pictures later of our progress...

Good News - Bad News

The Good News: Zach's cardiology checkup was great! He was 31.5 lbs, 39" tall, pulse ox 93, bp good, and echo good. Dr. R. said his heart looks great! His fenestration (a hole they made during surgery that acts as a "pop-off valve" ) is still open, so Dr. R. is putting in the request to Charleston for a heart cath in March. They will place a coil to close it and have a look around to make sure all is well.

The best part of the appointment was when Dr. R. said "We are going to stop the Lasix." Woo hoo!!! I am so glad to get rid of that. In case you don't know, Lasix is a diruetic. Diruetics and preschoolers do not go well together. Basically, when we give it to him, we have to stay home for the next 2 hours so he can go tee-tee every 15-20 minutes. Trying to get a 4 year old to stop playing every 15 minutes to go potty results in lots of complaints. Dealing with accidents during this 2 hour period has been frustrating. Hopefully, he will do well off of it and we can be lasix-free from now on!

The Bad News: We thought Zach was on the mend, but he spiked a fever again this afternoon. He also has a bit of a cough. Daddy promptly called and got an appointment at the pediatrician. They tested for strep (negative), flu (negative), AND pricked his finger (white count normal). Poor guy! They are culturing the blood and strep swab.

So, we are not sure what is going on. All I know is that this little bug that's causing him to feel so bad has overstayed its welcome. We have places to be and people to see and TURKEY to eat!

Hope your Thanksgiving is full of blessings!

Thanksgiving Festivities... unless the sickies have invaded

Bill got to go to Zach's preschool on Thursday for their Thanksgiving dinner and program. Zach's class sang "Every Turkey Can Tango" and acted out the story of the pilgrims and the Indians on the first Thanksgiving. They had a great time!

Here's the place setting that each child made

Zach (the one with his shirt pulled up!) is showing off how thankful he is to be a CHD Survivor

Look at all the desserts!

This morning before church, Zach did not want his breakfast. This has become more and more common on school mornings and we often take it in the car with us for him to eat on the way. Toward the end of children's church, he started acting like he didn't feel good and sure enough, after we got home, he started running a fever. His tummy has been a little upset, too. Please pray that this is just one of those short-lived bugs.

While I'm on the subject, can anyone recommend a really good thermometer? I bought a temple-read thermometer from Walgreen's but it doesn't seem to be reliable --- I can take his temp several times and get several different results. I know he has a fever because I can feel that he's hot. I just like to keep tabs on how high it is.

Some other prayer requests for our family...

• Zach goes to the cardiologist on Tuesday for a checkup.
• Zach has an assessment, also on Tuesday, for his TEFRA (Medicaid) to see if he still qualifies for benefits. I am nervous about this because we could be denied and have to go through the appeal process. Anyone have experience with this? I don't know if it differs from state to state?
• We are supposed to travel to have Thanksgiving with Bill's family if everyone is well, so please pray for good health.

We are thankful for your faithful prayers!

Prayers needed...

What a privilege it is to pray for our fellow heart families...

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

And the prayer offered in faith will make the sick person well; the Lord will raise him up. James 5:15

Two more cardiac kids are going to make their appearance very soon.  That means that two more families will jump onto this CHD rollercoaster. Two more families will be turned upside down, twisting and turning, going up and down, just wishing they could stop it all. We veteran heart families have two more chances to lift up prayer for those who will feel overwhelmed as we once did.

The first, Mason, who was diagnosed en utero with Tetrology of Fallot (TOF), was actually due Saturday. Mason's mom will be going to the OB Monday. They could possibly decide to induce, although she does not want that. Please pray for discernment for her doctors as they decide what will be best for him, for a smooth delivery, and for Mason to be stable.

I heard about this second family during an interview on the radio. A member of the Christian group Sanctus Real is about to have his third child, Bowen, who was diagnosed en utero with Hypoplastic Left Heart Syndrome (HLHS). Bowen is due to come in the next couple of weeks I think.

Also, please pray for us as Zach goes back to the cardiologist on Tuesday morning. He will have a chest x-ray to make sure there is no accumulation of fluid left over from surgery. The doctor will let us know if Zach can begin to eat fatty foods again. Zach will be soooooo happy to go get some Chick-Fil-A nuggets! We are also praying that Zach will get rid of the cough that he has had since last week.

Thank you prayer warriors!

Alarm Clocks, 4K, and Sniffles

So, I am finally getting around to blogging about our first day of school. It's been a very hectic week, but a good one!

On Sunday, my sweet family gave me a framed collage to put on my desk. Every time I look at it I feel so loved!

We got Zach an alarm clock to help him get up and get ready for school. We hoped it would help him be excited about getting up at 6am (he's never had to get up early for anything except an occasional early doctor's appointment) and we hoped it would help him to sleep in his room all night rather than coming into our room as he now does every night. So, on Sunday night we set the alarm and put it on his dresser. Lo, and behold, he comes into our room at 2am carrying the alarm clock! Stinker!!!

Monday morning at 5am my alarm clock woke me from a deep sleep. Like Zach, I am not used to having to get up super early, or at least not used to having to be ready and out the door at 6:45am! I have about a 20 minute drive and have to drop Zach off too and be at school by 7:30. Zach wanted to know why it was still dark outside!

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Here we all are ready for our first day of school! Despite the look on Zach's face he really was awake and in a good mood. A few minutes later he started fussing. Do you see what Zach has in his hand? Cardiac Kid's Breakfast of Champions --- Enalipril!!

Zach did really well going to preschool all week. Bill was able to pick him up after lunch on the first day but he had to stay for pretty much full days for the rest of the week. I was afraid he would be wailing every day but he fussed very little and really seemed to have a good time. He is learning a lot already!

Apparently he hasn't learned to avoid the kids with the snotty noses (heart mom humor!) because he has a little cold. Yesterday we hovered around the tissue box, wiping his little nose every 2 minutes. Today he sounds a little stuffy. Nonetheless, he has felt good and been his usual self. I know sickness is inevitable and I am thankful this hasn't developled into something bad.

 

So, I guess we will get up and do it all over again starting tomorrow morning!