When I got to the hospital this morning Drew just didn't look good to me. Yesterday when he was free of the fever he was looking and acting normal, but today he just looked sicker. He spent most of the morning laying in bed watching movies. He slept most of the afternoon. When he woke up around 5:30 he looked like he was feeling a little better and he ate all the macaroni and cheese that our friends brought him for dinner. He's been coughing more now, but still not as much as usual when he has pneumonia. The fever came back last night around 4 am and again this afternoon. Both times in the 102 range. There was talk of possibly sending us home today, but with the fevers coming back they wanted Drew to stay another night. If he spikes another fever tonight they are going to want to do more blood cultures. The ones they did last night haven't shown anything yet, so that is a good sign. His oxygen levels are still normal, so we still don't really know what the problem is.
I came home around 6:30 so I could spend a little time with Ava before bed. I know she is too young to understand, but I just feel horrible leaving her so last minute with no mommy or daddy for days at a time. I had a lot of fun playing with her before bed and she helped to lift my spirits a little.
Speaking of which, I did pretty well today except for a brief moment when I went to the gift shop to get Drew a present. I let my mind run away with me and got really scared. I was scared he had some serious infection that might kill him. I wondered if we'd be able to take him home. I know that seems extreme after just a fever, but it happens. Things can change so quickly for these kids. So for other heart moms reading this, do you do that? And if you don't do that, how do you avoid it? I let myself be sad for a bit then got myself together and went back to his room. And when I got there his fever had gone down, thank God.
So Dan's spending the night with him again tonight and I'll relieve him in the morning. We haven't had a roommate all day so hopefully they will both be able to get some good sleep tonight.
Drew
Drew is a happy 7-year-old who loves his family, his friends, and everything Star Wars! He was born with a CHD, specifically interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He has had three open-heart surgeries, the most recent was in May 2008 at Stanford. He is so strong and brave and we are very proud of him.
Ava
Ava is a spirited 5-year-old girl. She loves her family, friends and climbing, jumping and dancing. She brings us a lot of joy and a lot of drama! She is heart healthy. We love to see all the adventures she has!
This is how Drew's heart is now!
One and a half ventricle repair 1) VSD closed with a patch 2) Conduit from right ventricle to pulmonary artery . Drew still has the SVC connected to the PA in the upper left. Thank you Dr. Hanley and Dr. Mainwaring!
9 comments:
Andrea,
I am praying for you and Drew, Dan and Ava. I have been thinking of you all day. Please dont hesitate to call me for anything!
SL
Dee
Andrea~
After just meeting you and Drew yesterday at the Heart Walk, I am shocked to find out Drew is at the hospital! I will be praying for Drew and your family. And yes, this Heart Mom has scared, sad moments. I think of those down moments as a reminder to pray. It is amazing how quickly those moments pass when you pray through them.
Thinking of you,
Angie & Grace
Andrea - I can totally relate to the mind wandering thing...boy do I have a vivid and somtimes morbid imagination. This is the scripture I am trying to memorize to keep my mind focused on the right things.
Finally brethren, whatever things are TRUE, whatever things are NOBLE, whatever things are JUST, whatever things are PURE, whatever things are LOVELY, whatever things are of GOOD REPORT, if there is any VIRTUE and if there is anything PRAISEWORTHY - meditate on these things.
Philippians 4:8
If I direct my mind to focus on the TRUE things that usually takes care of a lot of my stress and anxiety about my current situation. But it is a constant battle that I have to keep fighting by re-directing my thoughts. I tend to think about what might happen or the worst things possible or focus on the negative instead of what actually is TRUE.
When the truth is difficult or depressing I look to all the other things in my life that are LOVELY or PRAISEWORTHY and that helps to re-focus my mind and heart again.
We will be praying for Drew tonight, and for the rest of your family too!
~Anissa
Andrea...
Rest knowing that God is cradling Drew in His hands, caring for him better then even the medical staff can. We will be praying and thinking about you. Please let me know if we can help with meals, watching Ava, etc.
Amy
I was just about to hop into bed, but wanted to see if there was any news about Drew going home yet. I'll pray extra hard tonight for you guys.
Andrea,
So sorry to hear Drew is sick. I pray he will be restored to health quickly and released from the hospital asap.
Thanks for having the courage to verbalize many of the same fears many of us have in regards to our heart children. We all want to stay positive and remain encouraged, but sometimes we need to acknowledge and experience the sad and fearful feelings we have -and that's ok too. Just last week, I was having a horrible week - being crouchy to my family, and having it out with Noah's teachers, school nurse, transportation dept. and speech therapist. After a couple days, it hit me why I was acting like that. Noah just turned twelve and he just transitioned to middle school. In elementary school, he could easily fit in with the kids, but in middle school, it is obvious to me how different he is from the "normal" kids. Additionally, before he was born, the docs gave him a 50/50 chance of surviving to the age of 12. Now, you would think that I would be celebrating the fact that he made it to twelve and graduated elementary school, but instead, I experienced such overwhelming sadness as I dwelt on the academic and phsycial challenges he has ahead of him. I had myself a good long cry over the course of a couple days, acknowledged my sadness, and spent time in prayer. I am thankful for last
week's experience (after asking for forgiveness from those I unjustly offended) as it helped me to focus back to living the day with graciousness towards my family and friends and having an attitude of gratitude - simple things that I often lose sight of.
So my dear friend, you are a lovely, kind, gracious, and giving woman who is sometimes a little bit sad - which only makes you all the more human and endearing.
Love you lots. ~ Laura Mulder
Andrea
I am sorry to read that Drew is in hospital. I have an older son who is 6 and I am very aware of the difference in the way I respond to illnesses like a fever.
My HH 6-year old had a number of fever illnesses before he turned 3. For a couple of them he looked and acted very sick - lying on the couch sleeping, not eating, fever 102-104 for 5 days with a rattle in his chest and severe cough. When it was 104 we gave him a cooling bath and gave him extra tonics and homeopathics from our naturopath.
Last week, Wren had a fever of 100-102 but didn't act very ill and I was in a flurry. The doctors were concerned about endocarditis and he nearly went in for labs. It turned out to be a minor rash virus.
I guess that after the surgery and knowing the kids can die we don't feel that same margin of error. If we miss a serious disease it can get critical quickly so we are more vigilant and, yes, more anxious.
I hope Drew feels better today.
Shannon
Dre, I'll be thinking of you and praying for Drew to get better fast!
Hang in there mama!
Love you!
Jessey
Andrea
I struggle with this on a daily basis. I am hoping that it gets easier with time but for now I just allow myself to feel the feelings and go with it. I have the morbid thoughts, I have the anxiety, I have the panic and the dread that something awful is going to happen. Even last night when Jilly woke up at 3am and complained of a head ache I immediately started worrying, maybe it's the new blood flow, maybe it's a blood clot, etc. etc. etc.
I have started to use relaxation techniques to help me stay centered. And my husband is a great support because while I lean toward the dramatic he leans the total opposite way. But I think the biggest thing all of us heart moms can do is to realize these thoughts we have, these worries...they are normal.
I will continue to send good thoughts your way. I can't come to the symposium Friday night (daughter's first homecoming and she's in the parade!!!) but I hope to actually meet you in person someday soon.
Dina
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