Back home

Blaze was released from the hospital at Jeff City about noon Friday and they immediately headed home. Blaze was happy to get home and see Melissa and Maggie. He soon went to sleep in his own bed and slept for 13 and 1/2 hours! He's still not fully up to par, but he is doing well and getting stronger each day.

Thanks for your prayers.

In Hospital for Observation

Tim & I took Blaze to the ER in Jeff City today. They decided to admit him for observation. They did find he has a viral stomach flu. He is on an IV and you can tell a huge difference in him. He was on the verge of dehydration. For a heart baby that's a terrible thing. He's resting very peacefully right now.

I am so grateful to know that one of his nurses trained on "7 West" the cardiac floor at Children's that we left on Sunday. That did make me feel better about the situation. They do NOT believe this is anything heart related. They just have to be cautious because of his heart.

I am experience the stomach flu myself. I have lots of sympathy for my sick little guy. It's rather miserable. Tim's staying with him tonight at the hospital so I can rest and recoup. Will let you know more when we know more.

Thanks for your prayers!

Rough Time

Blazey is feeling MUCH better today. Still too sick to travel. He's beginning to eat more. Hopefully that will help him. Yesterday I felt scared and desperate. Today I feel more peaceful about how he's doing. Thanks for your prayers!

Still Sick!

Poor baby, he's just miserable. If things aren't remarkably better tomorrow, we're taking him in for a medical opinion. We feel he's still hydrated, but he just is miserable. Tim & I are getting very concerned for our little boy.

Thank you for your prayers!

A Sick Little Boy

Blaze is not feeling well at all. His tummy's upset and he's just feeling rotten in general. We called Children's and his doctor. We're playing the "wait and see" game. Tim & I think it's probably a reaction to the antibiotics he was given. We're still in Jeff City, it's impossible to travel with him at this time. He's rested a lot today, hopefully he'll feel better soon! We're nervous about this situation, but hanging in there.

Outta There

We have left the hospital and are at Tim's parents' house in Jeff City! We were just absolutely shocked and amazed when the doctor came in today and said, "I'm sorry, but we've over-estimated the amount of time you needed to spend here. Would you like to go home?" (We had previously been told we couldn't leave until at least Tuesday.) We just stared at her. Tim had teased her yesterday and for a few moments we thought she was messing with us. But amazingly enough, it was true! It turns out the "bug" that they found in Blaze's bloodstream was actually a contamination. It was a bacteria found from skin, not growing in his bloodstream. His fever had been caused by his double ear infection, not by anything else. The heavy duty antibiotic rounds they gave him cleared up his ear infection and we left before noon today.

We are so incredibly grateful to have our well child out of the hospital and back in the loving arms of family. It's mind-boggling to consider we went from "isolation" with required masks and gloves to walking out the door.

Thank you so much for the kind emails, calls and texts. This was a scary and stressful stay for us, we thought it would be an easy over-night procedure and it appeared to be something potentially life-threating. Your prayers and support really encouraged and helped us. Thank you! Please sign the guestbook. We love the encouragement.

Looking forward to a night's sleep without alarms going off and no masked nurses with flashlights to scare our boy...Joy

Saturday

Last night they realized that Blaze has an ear infection in BOTH ears, poor little guy. No one had looked into his ears until that point. It was sort of a relief to know it was a normal baby thing, not anything else...until today when they got the bloodwork back and there is a bacteria growing in his bloodstream. They can't narrow down exactly what it is until it grows a bit more. They will take daily cultures and blood from him until they figure out what this is. They're saying we will be here at least 3 more days. Last night they put oxygen on him, since his oxygen saturation levels weren't where they needed to be. It appears that his oxygen goes down while he sleeps. So far today, during his naps, it hasn't been a problem. Today they've been watching his blood pressure very closely to see what's going on. After he took his meds, the blood pressure went down to what it should be. They just were late getting his meds to him. They're not worried at this point. So, we have a lot going on right now. The bacteria is the main thing. They're giving him what they call the "big guns" antibiotic. It tends to make people break out in a very irritating rash, so they're standing by with the Benedryl. Tim and I are handling things very well at this point. There have been a few emotional rides in all this, but we're doing really well. Thanks for your prayers!

Better...Still in Hospital

About 4:30 this afternoon, Blaze was alert enough to communicate that he wanted food and water. After half a container of pudding, lots of ice chips, an ounce or so of juice, some animal crackers and applesauce, he fell asleep again. And he kept it all down! Hoo-ray! That was a big relief.

We're still in "isolation". They actually moved our 2 week old roommate out and let us stay in room 5 on 7 West. We moved over to the side of the room that was more accomodating for one of us to stay with him overnight. That was a huge blessing. There's a cushioned bench on that side, rather than a chair with a pull out footstool. Last night I held a very restless and miserable Blaze all night. Tonight Dad is in the hospital with Blaze, while I rest at the hotel. Blaze is feeling better, he's sleeping PEACEFULLY in HIS OWN BED!!! Tremendous blessings. Hopefully Tim will be able to rest there tonight. Last night Blaze was so miserable and he cried when I would try to lay him down. I didn't want to keep our little roommate and his mommy up all night. As it was, the boys took turns crying and sounding their alarms off. At midnight the little guy next to us pulled out his feeding tube and the nurses decided to use this time as a training time for his mom to learn how to insert it. Needless to say it was a very long night! I hope and pray tonight is better for all of us!

We did learn this evening that Blaze's white count is up, and they suspect it is bacterial instead of viral. They are pumping antibiotics through his IV. Hopefully he will fight this off quickly and effectively. They took a culture this morning and will have more information for us tomorrow mid-morning. We'll keep you updated!

Thank you for your prayers, they are getting us through!

Fever

Blaze has a fever that is keeping him here in the hospital. They thought perhaps it was just his body reacting to having something done to him. Now they don't know. So, they've done a blood draw and culture, and had his nose swabbed. On this floor, having your nose swabbed is an automatic "isolation room." Everyone in the medical field will have to wear a gown, gloves and possibly a mask when they come into Blaze's room. They can't afford to have other heart babies sick, if what he has is contagious. They feel like we've already been exposed to whatever it is and we won't have to "suit up." As soon as the room is cleaned for us, we will move to room 2 on 7West. However, the best way to contact us is through our cell phones or email. Nurses frown on having the room phone ring. Tim's cell number is: 417-251-1727. Joy's cell is: 417-251-1728.

Last night was really rough, he was restless and was sick to his tummy. Joy kept trying to lay him down, but he likes to sleep on his tummy. He had several leads monitoring him, and every time he tried to lay down to sleep he would lose one and set the alarms off or it was just uncomfortable to lay on and wake up fussing. He's slept in his bed most of today, with Imagination Movers playing on his dvd player in his crib. He's wiped out and doing his best to fight whatever this is off. At this point they're not sure what's causing the fever, but at this point their guess is that is NOT an infection. His fever came on so suddenly after the heart cath, they feel that he was probably exposed to something before the cath and it just happened we were already here. We'll see!

Thank you for your support and encouragement. We are so very grateful this happened while we were here at Children's. If this had happened at home, he'd have to go into St. John's, or if we were in Jeff City as planned, he'd have to probably be transported to Columbia. It's good to be in a safe place for him. We'll keep you updated.

Heart Cath

Blaze was the first one taken back for a heart cath this morning. Things went very smoothly. He had several collatoral veins and what they considered "significant blockage." Collatoral veins are veins that the heart grows when something is blocked somewhere. It's the heart trying to be helpful. Because of Blaze's plumbing, there's a specific route the blood must flow along. By those veins being there, it actually takes the blood out of circulation and it pools there. To fix this they put in ceramic beads in places and platinum coils in others. Everything they did was "MRI friendly", in case he ever needs an MRI in the future. For the blockage things got a little more complicated than they expected. It's not that rare for kids with Blazey's reconstructed heart to have the blockage, about 25-30% of the kids do. It IS rare for them to have to have a second ballooning. They realized that this blockage was pretty much the same as last time, and a ballooning wouldn't be enough. There was a stent recently approved by the FDA made for pediatric patients. This is very new and Blaze has it now. This stent will actually "grow" with him into adulthood. They can keep expanding it to accomodate a "grown up" heart. We are amazed and grateful for the technology that's out there now.

Currently Blaze is on medication where he appears to be sleeping. He can still hear us and occasionally can move, but he is very sedated. Unfortunately, the medication is messing with his heart rate. As it begins to dip, Tim and I will whisper to him and bring it back up again. They only want to keep him on the medication for another hour or so, then they will allow him to wake up. We're expecting to have a handful of a child at that point.

When Tim and I went to lunch today, we also met with Pearl Hollan's mom. Pearl is a little one from Springfield who has undergone a major surgery involving the removal of lymph nodes, all of one kidney, most of the other kidney and I think her liver. She has had a fever for three days now and her mother's due date for her sister is today. They would really appreciate your prayers.

Blaze and I will spend the night tonight at Children's. He should be dismissed sometime tomorrow morning. Thank you for your prayers on our behalf. We feel them! :)

St. Louis

We're in St. Louis now. We came in this morning from Jeff City. Going to Jeff City last night we only ran into blizzard-like conditions once. : ) Things were better after that, though the wind was horrid most of the way. This morning things were MUCH better, drive-wise.

Our first appointment was during nap time. Blaze had his echo and EKG done with a dvd player under his nose. It really helped and seemed to distract him. We met with a nurse who guides families through the heart cath procedure. She remembered us from last year and was really impressed with his size and growth. She answered our questions and gave us instructions for tomorrow. We are the first ones going in tomorrow. We're grateful, even though it's a 6:45 check in at admissions. He won't be able to have solid food after 1 a.m. or drink anything but water or apple juice after 5 a.m. Blaze typically wakes up a little after 6, so he won't have a chance to get hungry before he goes in for the procedure. The hardest point of the procedure is getting access to his vein. Depending on what they find once they "get in", they may need to observe him overnight. He will be sedated for the time after the procedure where he must lie still. We left that appointment feeling pretty confident on how things would go.

Then the x-ray. After waiting a long time to get in (though there are flat screens, x-box 360 games and books galore to entertain in the x-ray area), the x-ray did not go so well. It took three people, including Daddy to hold Blaze down, and then they had to do it 3 times because he still wouldn't lay still. He's just amazingly determined for such a tiny fellow. He did get 3 stickers for his troubles.

After the x-ray, we went up to talk with the anesthesiology department. The woman there was in the NICU when Blaze was transported there immediately after birth. She was astounded at how well he looked. It made us realize how small he was last year when he was here for his surgery. We're so grateful he's doing so well. She said, "it must have been a hard choice, deciding whether he should have surgery or not. Did they offer hospice care as an option?" I was just shocked. We were able to share our testimony of Blaze with her, and give God the glory for how well he's doing. She agreed that it had to have been God, for him to be doing this well. She was quite impressed with him. She ran a pulse-ox, checked his weight (again) and talked with the doctor. He said not to count on him spending the night, not to take the medicine we were told he should take before and in general sort of contradicted our first meeting. You've gotta love days like this. We're following his instructions for the meds, but we're prepared either way for Blaze to stay at Children's tomorrow.

By this time it was about 2:20, we hadn't eaten lunch and Blaze never did get that nap. So, here it is at 4:39 p.m. Both Tim and Blaze are napping, and I'm in the Business Center of the hotel updating the site with just socks on my feet. Blaze's crib trapped my shoes and there was no way I was going to wake him up to get them. It's been a crazy day, but we're grateful we're here safe and sound and have heard so many encouraging things today. Blaze noticed several things at the hospital that caught the attention of various doctors. Everyone's telling us how observant he is and how he's thriving. It's so good to hear. Music to a parent's heart.

We love you all. I'll update this tomorrow, once his cath is done and he's out on the floor.

Joy