ICU--the staph re-return

So last Friday (yes, a week ago) we had to bring Liv back to the hospital. At that point she was having some fevers, but mostly just having constipation. It was decided later that she had an infection in her bladder that was causing the fevers. Yep, you guessed it-- staph. After a day and a half on a regular floor and just trying to get her to clean out her intestines, Olivia started to having respiratory trouble. After a swab of her sputum from her trach, the test showed she had virtually "everything" growing. Now, I'm still not exactly sure what that means-- they haven't ever told us that before, but suffice it say that she was very sick.

I'm not exactly sure because the stress and lack of sleep had burred the days, but I think it was Sunday when Olivia was taken to ICU for respiratory trouble. One lung was really hazy on the x-ray. She was also having massive fevers and still stomach problems. Sunday and Monday were very concerning for Brian and I. Obviously because Olivia was so sick--they put her on bipap and she had to be on 100% oxygen, which is really bad. Also, because we have been struggling a lot with how to maintain Olivia's quality of life through illnesses. We decided a while back that we would not let her suffer like she did in the long admission (from January to April) being sedated for most of that time, and paralyzed and on the ventilator for a month. We were concerned (and still are some) that we would need to make decisions for Olivia to stop her curative care and concentrate on making her comfortable-- essentially taking her off supportive breathing machines. I think it was Monday or Tuesday they put her on the ventilator and some gas to help calm her pulmonary hypertension and she was needing less and less oxygen.

She has since stopped having fevers, has been taken off the gas for hypertension, and has had her oxygen turned down to 35% as of this morning. However, now both lungs are affected and she is
still on the ventilator. The trach makes this admission appear WAY different than the last one--she is on a small amount of sedation to help with anxiety and pain, but besides that is awake--she has no tube down her throat, it just connects to the trach. These changes make things more comfortable for Olivia, but also, I think, make the seriousness of her illness look deceiving. Even I felt that the ventilator was no big deal on the trach--it doesn't look scary at all, but that doesn't mean Olivia isn't still suffering.

It seems that Olivia is improving from earlier this week. Brian and I are concerned, though, that the staph will keep re-infecting her and she will continually be in the hospital, which is certainly not what Brian and I want for her, and I don't think what she wants for herself. If she doesn't let her lungs heal all the way between these admissions she will continue to get weaker and weaker.

We have never needed your prayers like we need them now. Please pray for Olivia, for total healing, for comfort, for strength. Brian and I are also desperate for your prayers. We need comfort as well, and wisdom and insight that only God can provide. We are so broken and want desperately to also make the right decision for Olivia, even if it is a difficult decision for us. We can make decisions to limit Olivia's care, but we need help knowing when and how and IF we need to do that.

Bet you hadn't bargained for this much honesty when you started this blog post. Sorry I didn't give you a heads up-- I hadn't planned on writing all that.

Happy Birthday to My Bride

I have an amazing wife.

That is really the understatement of the millennium.

Today is her birthday and I want all of you to know that words cannot truly express how thankful I am for her. The ways that she cares for our girls is incomparable to anything I have ever witnessed. She is mom, nurse, therapist, and advocate all wrapped up in one person.

You are all witnessing something special in my wife. I am a very blessed man to be able to have her in my life and my girls could not have a better model of what a wife and mother should be like.

So, with that said...Happy Birthday Kelly Suzanne Key. I love you more than words will allow me to express. I am thankful for you. I hope that in spite of the circumstances we find ourselves in currently that today is a special day for you.

Love/Hate

Ok, so here's the thing. I try really hard to post really positive and upbeat things most of the time on the blog. Honestly, if I complain I am worried people will think we're not grateful--and we are. We so are. But sometimes I'm in the mood to throw a can of Pediasure or kick an oxygen tank. If I tell you about it, you won't think I'm ungrateful, will you?

I HATE that I have to walk up the stairs to check and see if Livi has woken up from her nap every 15 minutes or so. She hasn't learned to talk with the trach yet, and even if she had, I'm sure she could NEVER make a noise loud enough to be heard over those frigg'n machines running in her bedroom all the time. And, I HATE that I don't mostly walk all the way into her room to look at her and see if she is awake. I walk up just enough to see that stupid sat monitor and I can tell if she is awake or not depending on what the heartrate number reads.

I HATE that my dining room table perpetually looks like this

that the back of my living room looks like this

and that by sheer repetition, I have taught myself the varied times, amounts, and colors of these (I know this is the "hate" part, but on a good note, we have gotten rid of about four of these)...

I HATE that I either have to schedule play time around nebulizer and cough assist treatments or I have to trust that Gabby can play either in Liv's bed where I have to give the treatments or downstairs by herself for that 15-20 minutes. It has NEVER been done.

I HATE that there are bookcases for books, files for papers, pantries for food and toy rooms for toys, but that I still have not figured out a good "out of the way" place to put our monthly supply order of durable medical equipment (including, but not restricted to: tubing, sponges, wound care supplies, trachs, trach ties, trach kits, suction catheders, trach connectors, g-tubes, feeding bags, 4 palates of pediasure, hme's, med syringes---you get the picture), 8 oxygen tanks, meds, walkers, adaptive chairs, etc...

I HATE that it takes me at least 3 trips to get all of our "traveling" bags and the girls to the car.

I HATE turning on the suction machine in public because it scares kids and makes people stare even more.

I HATE that every time we go to the hospital at least one person asks me how long I've been in the medical field.

I HATE that Gabby has to know what all this crap is.

Most of all, I HATE that Livi has to go through this--the whole thing.

Luckily, even when I think about all the things that I hate doing, I remember one thing that I love so much that it makes it all worth it a thousand times over.

Milestones for both girls

Gabs, you're up first.

You are now 6 months old. I have no idea how that happened. I remember your cranky little newborn self and rocking you at night thinking "I can't wait until she's just a little older". I feel so guilty about that now. You will probably grow up faster than you should, just because you always want to be doing something you're not quite supposed to be able to do yet. That makes me sad, but so excited because watching you grow up just this little bit has been incredibly entertaining.

You are sitting independently now. That was going well for about a week until you decided you wanted things out of your reach and are now lunging forward from sitting and landing smack on your face. Maybe someday you will learn not to do that, or perhaps you will just start crawling.

You LOVE eating. Your 12 lb. 9 oz. frame would not lead people to believe that, but you make 3rd percentile look good, girl. You caught on quickly and now "help" me feed you by grabbing the spoon and pulling it into your mouth. Your hand-eye coordination is not stellar, so you usually get a little messy.

Our post-eating exercises consist of giving you the spoon and the empty bowl to help calm you down from being done eating. You chew on the bowl a while and hang it over the side of the chair where Tugger is faithfully waiting for you to drop it for him. When the bowl is gone, you pick up the spoon and practice ramming it into your face--that usually gets dropped for Tugger too.

Gabs, you are SUPER inquisitive and have to know whats going on with everyone all the time. You are starting to be affectionate now and hugging and "kissing" those who are close to you, which usually ends in slobber bath.

For weeks now there are two sure-fire things that will calm you down when you get upset. 1.going outside (there is just SO much to look at) and 2. "practicing" walking. And no, I don't let her walk down the steps. Now when you want to choose a toy or something to do, I hold you by your fingers and you walk there. At first the steps were small and really silly-looking. Now, though, they look like real kid steps, and you're scaring the crap out of me with them.

You drive us absolutely crazy and create tons of fun-- probably how it should be.

Now, Liv. She is finally out of the hospital again (Monday) and is doing great. She started back to summer preschool Thursday for "splash day" and LOVED it!

All the kids wore their swimsuits and played in the kiddie pools and sprinklers. This new trach momma was apprehensive to let you even near the sprinkler, but the staff there is so great and got her just close enough for her to get her feet and legs wet. She loved it! She even had therapy outside and played with toys in a shallow tub of water. She had the best time, but of course was too cool to smile when mom was around with the camera.

Its nice to be back at school and some of her friends from the fall are there on the same days, so she was LOVING the attention and fun.

Things are back to "normal" crazy now, and even though I am exhausted by 3 in the afternoon, I wouldn't trade it for anything. The girls and I have such fun!

Psalm 107

Hey this is Brian.

I know it has been a while since I promised I was going to write more. Forgive me. My lovely wife and adorable girls keep me pretty busy. Anyway, I just wanted to share something that I read this morning that rocked me.

Psalm 107:1-2
Oh give thanks to the Lord, for he is good, for his steadfast love endures forever! Let the redeemed of the Lord say so, whom he has redeemed from trouble...

I (we) spend a lot of time grumbling. Why are things the way that they are? Why don't we have this or that? Veiled behind those seemingly innocuous questions is a much bigger question...

Hey God, don't you love me? (Veiled commentary behind this question: If you did, things would be way different than they are.)

This psalm threw me back on my heels this morning. It is a call for those who know the deliverance of the Lord and his unceasing covenant faithfulness to his people to respond in...wait for it...thanksgiving. We aren't very good at thanking God for the things that he does for us, but we are good at blaming him, or at least questioning his active goodness on our behalf. How about you? Are you struggling here too?

The psalmist is really good at jogging our minds for worship. After he calls the "redeemed of the Lord to say so," he tells four tales of the struggles of God's people. At the end of each tale, the refrain is...

Then they cried to the Lord in their trouble, and he delivered them from their distress...Let them thank the Lord for his steadfast love, for his wondrous works to the children of man!

Between the mention of the people's cries and the call to thankfulness, the writer tells of God's deliverance of them - how he displayed his steadfast love that endures forever (see vv. 7, 14, 20, 29-30). For our story, there are countless reasons to be thankful. Many times we have cried out. Many times God has answered. However, I am not sure that the posture of our heart is always as thankful as it should be. The truth is, we have much to be thankful for and I am praying that God gives us the grace to reflect, rejoice and "say so" today.

What about you? What is your story between the cry and thanksgiving? Where can you be thankful today? Where are you still waiting for that deliverance? If you are still waiting, can you still give thanks to the Lord for his goodness or are you struggling to do so? The good news is that even when we struggle to see him, believe him, trust him, he remains faithful to his people - he doesn't waver or change. His steadfast love endures forever! Let the redeemed of the Lord say so!

Where we've been

So, I realize its been a month. I am horrified at my unintentional and unannounced hiatus. Lets cut through the crap and we'll just tell you whats going on...

The first three of the last four weeks have been a blur of medication, bottles, lots and lots of diapers and tons of fun. I was wiped everyday from hanging with my ladies. Here are some pics...

Oh, sisterhood. Doesn't Gabby look like she is just trying to do whatever Olivia is doing?

We've had A LOT of trips to the park. That and Target are the only place both girls will be quiet and entertained--like mother like daughters.

I got some plants from a friend for a very early birthday present. Liv and I had a fun and interesting time potting these during Gabs' nap. Livi's "helping" ended in several leaf tragedies.

I know you're waiting for it...a week ago we had to take Liv back to the hospital for trouble breathing. Turns out it was more bacteria from the trach, but this time she had pneumonia. The first few days things were very close to getting back to ICU, but God answered our prayers and spared Liv this time. She is still in the hospital, but honestly looks great. She is breathing well now, but of course her tummy is taking some time re-adjusting to food from IV fluids, so probably a few more days.

Gabby is not the most low-key hospital visitor, but she is doing fine. Allowing me to get an hour or so in with Liv about every morning at least. 

Looks like she feels fine, huh?