Almost Home

Today went much better than yesterday. When I got back here this morning, Drew had drank 2 oz of Pedialyte and 4 oz of formula. Bill went home for a bit and Marita and I gave Drew a bath and she cuddled him while he napped. We had to up his CPT (chest/back clapping to clear lungs) because his chest x-ray showed his left lung was "wet." It's mild and they will take another x-ray at 6am tomorrow so Dr. Delius and his team can look at it before rounds.

Anyway, after his nap, Drew, Marita and I took a walk. :) They have wagons here, so I put a blanket in it and a pillow for him to lay on and Lu, our Nurse, helped us get him in there with his IV stand. We went to visit Amelia, Drew's friend who has OHS yesterday. She's such a doll! She looked amazing after having her vent pulled at 6am. (she continues to do great, but did desat twice today, scaring her Mommy - understandable) We also visited with her parents and her grandparents, as well as Keith the P.A., looked for our PICU nurses (none were there *sad*), and surprised Bill when he arrived.

As of this evening, Drew has eaten 18 oz of formula and 2 oz of Pedialyte still. He is snoozing now (which is hard because we're sharing a room). When evening rounds came by, Dr. Delius said that if his chest x-ray looks better tomorrow, he'll be released. So, we will find out during morning rounds I guess. I'd prefer he be eating more than 18 oz of formula, but it's at least coming along. We're to just feed formula for now, getting him above 30 oz/24 hr period of time to help his body out. He will also be on Lasix and some Potassium replenishing drug when we go home - for 2 months, so not bad. We will continue the Zantac as well.

In anticipation of possibly going home tomorrow, they cut off his IV, but left it in...just in case. I am here tonight and waiting on our new nurse to come in and do vitals so they can put his leads back on. He pulled them off. I am sure this will wake him up, but I have his CD player going with lullabies. The girl next to us is 2 and her Mom does a good job of keeping her voice low...but Dad is here tonight and he doesn't seem to recognize the need for quietness. Also, he just turned on a light. So, she's being 2, the light is on and the TV is loud. *sigh* Oh well, he needs to eat again anyway at some point!

Thanks again for your ongoing prayers and support! We've had so many people either visit or call/write daily. We appreciate the outpouring of love!!

Amazing...Drew does NOT want to eat

So, he must be hurting somewhere. We're back on the Zantac as we think it may be that his vent tube irritated his throat and thus, when he spits up, it's hurting him. Also, since we've given him Zantac, he's burped a TON. I am bringing his bottles and starting him back on the Enfamil AR/Similac combo tomorrow. They're going to check his ears and throat too.

Otherwise, he is doing VERY well. We are pleased with everything else. Here is a summary:

Sunday -

Cath out
Arterial and Central Lines out (art line is in the wrist, central is in the neck)
Moved to Step Down

Monday -

Moved to a shared room in Step Down ("yay")
Pacer wires out
Chest Tube out
Zantac restarted

Sorry it's taken me so long to update this, but all is well!! Thank you for all the prayers!

Doing Better

Little man is doing much better thus far. Some accomplishments today:

Extubated
Being held
Dressings changed and bath given
Sat up to eat
Blowing raspberries
Waving
Saying "dada" and babbling again
Coughing

We're hoping for more of the same this evening and overnight. Oh and I took a video of him blowing raspberries, which I need to upload and post.

We had many visitors today, including Aunties Karyn, Mary and Malisa. Tomorrow, we will have more visitors. I like to always have someone with Drew, so this is good and gives us time to refresh and regroup from the night.

Ups and Downs

Well, it hasn't all gone smoothly today, but Drew is doing well right now. He had some troubles with mucous in his lungs that they couldn't get out without manually suctioning him. They were about to extubate him and his sats dropped to 74 and he started trying to cough and cry, turning bluish-purple. He was VERY agitated. Our quick thinking Nurse, Erin, got all the mucous out and he was fine after that. Of course, this all happened on our way back to the hospital and we were informed of it when we arrived. Interestingly enough, I had started to feel like I really needed to get back when it was going on. I had said to Bill, "We need to get there" right when all of this started. Mother's instinct, I guess. I thought I was just being antsy.

He is now extubated and on O2, which he promptly pulled out of his nose, declaring that he was done with tubes. :) He immediately fell asleep afterwards and snoozed in my arms (!!!!) for about an hour. I am not comfortable moving him on my own, so the Nurse took him from me and gave him to Bill, who wanted to hold him as well.

I am going to try and post some pics this evening maybe.

Thanks for your continued prayers...keep them coming.

Fiesty Little Man!

Drew continues to do as well as can be expected. He has dropped from 20 breaths per minute on the vent to 10, as of 10am this morning. They want him down to 5 breaths per minute and handling it well before they extubate. Last night was long, but good. Bill and I took turns with him and subsequently, turns sleeping. I got about 4 hrs all in all, so that was good. I never thought I would sleep so well in a hospital waiting room, but I guess being up nearly 24 hrs will help you with that!

Drew had to be given a Versed (sedative) drip last night because even though he was receiving Morphine, he was agitated and moving around a lot. His wrists have soft restraints on them, which he is NOT a fan of. Also, he was not a fan of his pressure cuff on his leg, so that was removed this morning. He didn't want a blanket on him at all, and would kick until it was off, and then be still. After about the 3rd time he did this, we all caught on that it was necessarily pain related, but irritation at the blanket. His core temp has been good throughout, so we are just letting him be. He has his "wubzy" (a blanket with an animal head) on his chest keeping that warm. His urine output slowed a bit, so they put him on Lasix. Also, his chest tube is continuing to drain, but less and less and not as thick as before. Starting to lighten up.

Bill and I are at home right now, showering and resting a bit. Grandma and Grandpa Brown are holding down the fort until Grandpap Calvano and Grandma Lorie arrive, along with Aunt Suzanne. We will head back in the early afternoon. If all goes according to plan, Drew will be weaned completely this afternoon abd start feedings after that.

Thank you for your continued prayers. We know they are helping Drew!

Pink Lips!

We got to see Drew in the ICU finally! We had seen him momentarily on his way from surgery to PICU, and the first thing I noticed was how pink his lips are now! Better O2 sat means pinker lips! I had never thought his lips weren't very pink, but they did get bluish here and there. Wow, what a difference.

He looks beautiful! It is scary to see all the tubes coming from him, especially the drainage tube, because that is particularly saturated right now. But, better out than in, because that can cause a lot of problems. He is already starting to come out of anesthesia...he was pretty out of it for awhile and all of a sudden, his foot started moving and I noticed him trying to look toward my voice and then, moving his arms. Once he shows he is trying to breathe on his own, they'll start to wean him off the vent. In the meantime, they're giving him morphine and versed to keep him pain free and sedated. According to the PICU nurse, he's only on a few things and that is great. Also, the fact that he is already coming around is great. PLease pray the remainder of his recovery goes smoothly and he doesn't experience any setbacks. We had many prayers answered today...one of the most notable being that they did not need to cut across the valve, so there shouldn't be a need for anything further. His valve is a bit thick, but Dr. Delius feels that he will do just fine, lead a normal life and be able to play sports, or do whatever he wants.

God is good.

Off Bypass

Drew is off bypass and the post op echo shows that the surgery was successful. :)

They are waiting to see if there's bleeding before closing him, then the Dr. will come speak to us and we'll get to see him for a minute before he goes up to ICU. It will then be another 90 mins before they get him settled and then, we'll be in with him. I will try to update this as much as possible, but of course when I am with Drew, I am with him.

Thank you all SO much for your emails, FB comments/messages, Blogger comments and text messages all day. We greatly appreciate them. And especially, we thank you for your prayers for our family and, most importantly, for Drew. He's a special little man and we are blessed to have him in our lives.