A Long day (it's not over yet)

Lisa and Grandma Cheri took Mia back to UCLA today for an unscheduled dressing change. There was a blockage in the wound vac tube and we could not get it fixed at home. They left home about 8AM and at 5PM Grandma Cheri called me and said they were keeping them for observation till 6PM tonight, then they would be released to go home. Whew! Thanks for praying! ~Mia's Dad

Update: I just got off the phone with Lisa. She said "People were definitely praying for us today, because when we got to the hospital, they said, 'We are ready for you' and they took Mia right in to the Operating Room. That was awesome. The surgeon changed the dressing and really couldn't see the problem or a blockage. That was disappointing and frustrating. Then we were in the post anesthesia recovery room and the wound vac started alarming again, just like last night. The rep for the wound vac company was called, and came to look at the machine, and said, 'There's the problem, her wound is so small'! The suction cup on her wound inside the dressing was touching mostly skin instead of wound. They had to creatively put a piece of foam in between the suction cup and wound so it would not error out again. I think it must be almost healed." Thank you for praying! God has said "YES!" once again, and we are in your debt, friends and family. :-)

Going Back

Last night Mia's Wound Vac stopped working, so we talked to one of the surgeons and they are going to try to work us into their schedule today. Since the Wound Vac has been off for more than 2 hours they have to redo the dressing. Pray they are able to work us in because they can be very busy. Pray for Mia, she might not be able to eat for a long time depending on when and if this happens. Pray for wisdom on why this happened and how best for it to not happen again and pray that she doesn't get an infection because that's a risk when the wound vac is turned off.

Home!

We are home, thank you God! Her surgeon was pleased with how her bottom is healing and hoping we only need to do this one more week. It will be a challenge until we figure out a system that works at home, but regardless, it is still better at home. Pray that everything would go smoothly these next couple of days, we go back to LA on Thursday. Pray for dramatic healing between now and then.

Mia is doing much better, I can tell because she wants to crawl around more and more. Her UTI is gone and I think the antibiotics are killing whatever was in the lungs. She still has a cough, but it is much better than it used to be. I think she might actually be gaining weight eating the hospital food...go figure. Tonight she got raspberry sherbert for the first time and really liked that. She also likes the enchiladas the hospital makes too. They are pretty good.

Tomorrow they redo the dressing and if we are still doing this well, then we will be coming home, yay! We will still have to come back for dressing changes every couple of days, but it will be nice to be home, no one waking you up to check your blood pressure and temperature at all hours of the night. Of course we will have some bad habits to break, like me holding Mia for naps and sleeping in the same hospital bed at night, but we will work through those things. :)

Thank you for praying, we are so grateful knowing that so many of you always pray for us, it's encouraging! And we continue to wait and trust upon the Lord, we don't always know why, but we do know that God will use this for good.

So, the talk is that we are going home on Monday after her next procedure. They wanted to do another urine culture and make sure her pneumonia is on the way to recovery. So far the nasal culture has come back negative, which means she doesn't have a virus, so it's a good thing we are on the antibiotics.

Yesterday they did a swallow study on Mia where they made her eat and drink different things with a chemical that shows up on the xray. It was very interesting. (They were concerned her pneumonia was the result of aspirating food into her lungs)...anyway, she passed with flying colors. It was interesting though because they injected some cheese puffs with this chemical and it showed what I've thought, she doesn't really chew food, she just mashes it with her tongue against the roof of her mouth and then swallows it whole. The swallow specialist said that it's common with developmentally delayed kids, but she encouraged us that Mia could get there, she just needs to keep practicing with different types of food.

This morning we lost Mia's only IV and so there is a concern because one of her antibiotics cannot be taken orally, so we will see what they decide here in a little bit.

Otherwise we are doing great, she hasn't thrown up in a couple of days, which is great news, and she is eating better. And we got some really good sleep last night which is so goof for Mia because we know sleep gets us better.

Not going home today

This morning Mia went under anesthesia again and examined her bum and changed the dressing. The nurse said it looked good, but we haven't gotten a percentage of improvement from the surgeon yet :-). They also changed her catheter, and took another urine sample for culturing. We are staying in the hospital longer, and don't have a definte going home date yet. :-)

Getting Better

Mia has had no seizures today, and has had more energy! She also has been eating better. She has a new found love for cranberries and bread with gravy. Hee hee! They did an ultrasound on her kidneys this evening to make sure they are ok, since she has had a problem with them before. Haven't gotten the results from that, or the results from the culture to make sure she is getting the right antibiotics. I hate to even mention this, because they are always promising things and not delivering, but it is possible for her to go home tomorrow. Wow. That would be amazing! We are so much in everyone's debt, thank you, thank you, thank you for praying! Especially thank you to Chris and Greg for yesterday. I appreciate you guys! I'm going to see Mia and Mommy tomorrow, unless they call me to tell me they are coming home first! :-)
~Mia's Dad

"Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective." James 5:16

Mia is doing pretty well this morning. She hasn't had any more seizures and her temperature has been normal, thank you God! Her urine culture came back not quite right, so it looks like she might have a UTI. They are going to grow out the culture some more to make sure the antibiotics she is on will fight that also. She still has a bunch of junk in her lungs, so keep praying for that to clear up quickly. And she hasn't been doing too well keeping milk down, she threw up her bottle this morning. So you can pray about that too. The wound vac is working great so far and they will change the dressing tomorrow, so keep praying for healing there. They also took a culture of the mucus in her lungs to make sure it isn't RSV or something else, I will let you know what I find out when I hear more.

Neurology came by and looked at her and said it's very common to get a seizure when you are sick, for some reason your body's threshold for seizures is lower when you are sick, so they think the seizures shouldn't continue and that her anti-seizure medicine is still appropriate, but they will continue to keep an eye on her.

Thanks for praying!

Not going home.

After looking at Mia's chest xray, they think she has a slight case of pneumonia. She is also running a temperature and had two seizures this morning. So we aren't going home, they are starting us on antibiotics. This complicates things with the wound vac because they might not let her undergo anesthesia being sick. So pray for a quick recovery and no more complications. And pray for no more seizures and patience as we trust God and His plan for our little girl.

Good News, Bad News

So the surgeon said her wound is 85% healed, a 5% improvement since last week. And that it should be 100% in just a week or two. Thank you God! You are answering all our prayers and the answer is Yes! As far as the bad news goes, Mia's cold is getting more severe. She has junk in her lungs and we are concerned that it could become pneumonia. Along with the cold is a small fever. Also, she still has a catheter and the longer that stays in, the great a chance of developing a urinary tract infection. The surgeon has turned Mia over to the Pediatric department at UCLA to draw blood and make a decision about wether she should stay in the hospital or be released. So, we want what's best for Mia. If we have to stay in the hospital, we'll stay. But our God is bigger than all these problems. He's healed her so much, I know he'll work this out for good too. Thank you for praying and continuing to pray.

The wound vac has been working great all day, thank you God! Tomorrow they will redo the dressing in the OR and quite probably send us home. Yay!

Mia still has a bunch of stuff in her lungs, so pray that it would go away. The doctor also told us that she will go home with the catheter, but having one also puts her at a risk of getting a UTI, so pray that it wouldn't get infected. And then pray for the car ride home that it wouldn't cause any problems for the wound vac and that Mia would be comfortable in her car seat.

On a different note, Mia had a routine echo done today (which she slept through which was so nice!) and her heart looks great, praise God for that also.

So far the wound vac appears to be keeping a good seal, Praise God! So, the plan is to just monitor it today, no OR time at the moment. Yay! And then if it lasts until tomorrow, we might get to go home with it. We would do more OR time tomorrow for the doctor to change the dressing and then we should be good for another 2-3 days. At which we would come back and redress the wound again. Hopefully it would only take 1-2 weeks until she is healed.

Pray for a tight seal again.

And Mia seems to have a slight cold, pray for her lungs to get cleared up and not turn into something more serious.

Wound Vac

This morning Mia's doctor placed a wound vac over the problem area. He got it to seal which is the first step in the process. Now we are giving it some time to make sure it doesn't start leaking. So pray that it would keep a good seal because it's hard to in this location. She has a catheter, but that leaks and so there is the concern of leakage from that which would interfere with the seal. So you can pray for a good tight seal always.

Last night she started getting some junk in her lungs, pray that she would cough it out and that it wouldn't become serious.

And then pray that where there are cords and dealy doos attached to her body that her skin would break down or get irritated.

Thanks for praying!

Happy Father's Day Daddy!

Mia just got into the recovery room again, she did well with the procedure. She is healing, but it is very slow. Tomorrow or Tuesday they are going to try putting a wound vaccum on her, it is a device to help a wound heal, the only thing is that they would need a tight seal around the wound and the position the wound is in is awkward, so pray that they would be able to get it to work because it would speed up the recovery time.

Mia wanted me to tell you thank you for praying and in case you didn't know, she has the best Daddy ever!

Saturday

Mia had another packing and dressing applied this morning about 8:30am. The surgeon said that we are going to change the packing everday, which will stimulate new scar tissue in her wound. He had positive things to say about how her scar tissue looked today, no bad tissue since yesterday. Thanks for all your prayers! We've met lots of Doctors and Nurses we have had before, and Mia is loved by all. Spirits are high, and we are doing good.

PS. Sometimes when Mia is eating yogurt, there is a danger to nearby bystanders. Like Daddy. :-)

Admitted to the hospital

Lisa and Grandma Cheri took Mia to UCLA again today for the same routine exam of her bottom. The surgeon said it's not healing since he's seen her last, so they are going to admit Mia into the hospital where they can pack the wound with gauze every day. We're a little teary, but hopeful that this will work. We just want her to get better, and we really, really covet your prayers for her bottom to be healed. We trust you God, in this, and every other thing in our lives.

Micah 6:8 "He has showed you, O man, what is good. And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God."

Mia continues to learn by leaps and bounds...at least I like to think they are. :) Every mom is biased of their own child.

A few weeks ago we started practicing new signs because we had already mastered "all done", "bye bye", and "thank you". So I started teaching her "Daddy", "Grandpa" and "Grandma/Nana" and "Mine". I hadn't really emphasized "Mine", but today I asked her to say "Mine" and she did it right away...and she's getting the hang of "Daddy", but hasn't quite mastered it yet. It's really neat to be able to see her learn new things. So, we started some more signs today, including "Cat", which is a bit trickier because you have to put your thumb and pointer finger together, but after I showed her a couple of times, she was trying to do that. You could almost see her brain working. :)

Then I was practicing body parts with her and I've been trying to teach her Eyes and Ears, but haven't had much luck...well, I asked her where my Glasses were, which she knew right away and then I asked her Eyes and she gently touched my Eye. I had to repeat just to be certain she knew, but she did! And then I told her Chin and showed her where it was and then we came back to that a little bit later and I asked her where my Chin was and she immediately pointed it.

She also knows where her "BeBo" is...that's your belly button, we have a book about it and she can show you the general area of her Bebo. :)

It's just so encouraging to watch her learn and grow, she's an amazing miracle and we are so grateful for all that God continues to do in her little life.

Mia Pictures

This book is about other kids who went through heart surgery, we were looking at the pictures.

Daddy, I want your smoothie.

Me and my Mommy

Ain't she cute?!?!

LA

We had a long day in LA today. There wasn't any significant news about Mia's bottom. It didn't look any worse, nor did it look that much better. The surgeon wants to look at her again next week on Friday, so continue to pray for healing with soft scar tissue.

We then spent some time at the home of our dear friends because we had time until Mia's next appt with the helmet people. Mia's head has actually grown quite a bit since the last visit and they said that's not really heard of at her age to grow quite so much, so praise God for that! Pray that her head would continue to grow and shape into a normal head shape.

Ready For The Beach!

We are ready for the beach, we aren't going to the beach, but we are ready. Ready to not drive to LA so much and ready to drive fun places instead! We go back to UCLA on Thursday to have the doctor look at Mia's bottom, pray that everything would be scarring appropriately.

Happy To Be Home

So we are back safe from LA and happy not to have to go again until next week Thursday. The doctor told me that Mia was 85% healed and he was happy with how things were looking to re-stitch her bottom one more time and hopefully this will be the last time needed. He said there still is a concern that it might not continue to heal and so we aren't out of the woods yet, but he is very hopeful that we won't have the same problem again, so pray for us to reach that 100% of healing. Some indicators that it might not be going as it should would be for more of the granulation scar tissue to form on the outside again. He also said another concern at this point is that the scar tissue will scar hard instead of soft. If it scars hard then it might interfere with her ability to sense her muscles down there and potentially she wouldn't be able to control her bowels, so ideally we would want it to scar soft. So pray for that also. And thanks for continuing to pray for our sweet girl! These photos were last night after our trip to LA, she was watching one of her favorite videos (Kids Sing Along Songs) and was somewhat annoyed that I kept wanting to take her picture. ;) That's what Mommy's are for...

Looking good!

Lisa just called me and said the surgeon said Mia's bum looks very good, so good he stitched up the wound that they had been packing with gauze. The only concern right now is that she needs to have soft scar tissue down there, and it's a possibility that she will grow hard scar tissue. Will you lift that up in Prayer? Thank you so much for praying. God is good, all the time.

Back To LA

Tomorrow we go back to LA to see Mia's surgeon. This time it will be the original surgeon because he is back in the country. Pray that everything would go smoothly and that we would have an encouraging visit.

There wasn't any significant progress with Mia's bottom today. The doctors are still hopeful that given time her bottom will eventually heal and that we should continue doing this. Her original surgeon will be back on Friday and we are scheduled to go down there again and have him look at it. Another area of concern is that he had put some new stitches in when we first started this process and it appears as those are stretching apart, so pray for wisdom on his part on what to do next and thank you for continuing to pray for her healing. She's such a trooper...everyone says, "your back, we like seeing you, but we don't like seeing you." We couldn't agree more. Today Mia gave her nurses kisses and they just loved that. And she's just learned the sign for Thank You and so we tell the nurses and doctors Thank You and Good Bye when we leave, that brings a smile to little Mia's face.