Friday, April 28, 2006

I know you've all been waiting for pics...

Oh no, I have 2 boys hooked on binki's!!!!! Yikes, what am I going to do??? Actually, this is just daddy making mama laugh!!!

Another way to make us laugh is to put Easter Bunny ears on Little Bug. I'm sure he's probably thinking, "C'mon guys, what more can you put on me???" HA HA

Auntie Kathy and oldest cousin Kacey with Little Bug!!

Here we all are enjoying a nice day together and enjoying Connor being in such good spirits.

Grandma R. and Little Bug!!! How precious!!!

Daddy and Grandma with Connor today!!! Hey, are they wearing matching outfits???? Sure does look like it!!

Little Bug's almost sucking his thumb!!! How cute it was to see this transpire. He wiggled his little hand up to his mouth all on his own.

Snuggling with Daddy is one of my favoirte things, says Little Bug.

Snuggling with Mama is equally fun!!

Fever Broke!!!!!!!!!!!!!!

Praise the Lord for answered prayer. Today was a positive day for Connor. The fever came down to around 99.5 for the majority of the day. He had a couple of episodes early this morning, but after that he was happy and peaceful and off the c-pap until 7:oo tonight. He enjoyed his visit from Auntie Kathy, cousin Kacie and Grandma R. Everyone had their turn to hold and snuggle him and he loved every minute of it.

Our meeting with the docs was very revealing today. The pulmonologist came in with the head cardiac doc and we had quite a discussion about Connor and his present condition. In short, the decision was that this has more to do with Connor's lungs than with his heart. Apparently, Connor is doing something called "air trapping". This is where he takes a breath and without exhaling takes another breath on top of it and then another still. His chest and heart area are enlarged because he is over-inflating his lungs. They plan on changing his current diaretic medicine to a new one and discontinuing one of his antibiotics in hopes that his fevers may cease. They will then begin to give him powerful steroids to bring down the over-inflation and give him some relief. We are so hopeful that this may get to the bottom of his lung disease and bring Connor some peace in his breathing. We are thankful that the docs had new and fresh insight today and that we have a new course of action. We are concerned about the steroid (prednazone..sp???) and we hope that this is not a lifelong course we will have to follow with Connor.

Just before coming up to write the blog Connor slipped into another episode and his temp started rising again. He had a decent sized blood clot come out in his poopy diaper and they are going to check that out now as well.

Dear Lord, please stop the cycle. Allow Little Bug to feel the relief that he felt at the beginning of the day and hold him close to your heart.

Lovebug Hugs,

Thursday, April 27, 2006

Another day of no change...

Today has come and gone without any progress for Connor. His fever is still high with no known source. The docs realize they need to look in other directions at this point to help bring relief to Connor. They will present him tomorrow am with the cardia docs and with the surgical team for any new ideas. Our primary doc mentioned today that they may consider doing a Cath Lab which is a catheter that goes in through the groin and feeds up into the heart to look around and check pressures and see specific things. This may shed some light on Connor's situation, but once again, there are no promises. What frustrating uncertainty we are facing at the current moment. Our emotions are running high here and our patience seems to be waning. Please pray that God will increase our strength and our trust in Him.

Goodnight and Lovebug Hugs,
Randy, Lori & Little Bug

Wednesday, April 26, 2006

No Change!

Connor has fevered all day today. It has been 48 hours now and Little Bug can't seem to break this fever. It has hovered between 102.6 and 104+ all of that time. He just seems so tired and worn out. He will be reviewed by more docs tomorrow to see if they can see anything new. Keep praying and we will keep you posted.

Lovebug Hugs,

Tuesday, April 25, 2006

Can't a girl get a cheeseburger?????

So I guess the Lord must really have a sense of humor. Tonight I wasn't able to get to the cafeteria for dinner because of being in with Connor. About 8:00 my hunger pains set in and I decided to head out of the hospital for a cheeseburger. For some reason, a fast food drive-thru cheeseburger really sounded like it would hit the spot. I made my way to the car in the Giraffe parking garage to find that I had a dead battery. That's right, dead!!! I couldn't get that thing started for the life of me. I walked back in and had security come out to the car to help. Thank the Lord for Tony!!! He was able to give me a jump start and off I went to get my cheeseburger. I quickly sped down 45th street to find the nearest drive-thru. Would you believe on a busy street such as 45th street, which is where the UW is also located, there is not a drive-thru to be found. Thank heavens for neon signs because down a side street I saw the red and white glow of Jack In The Box. I made a quick, hard right-hand turn and realized I was going the wrong way on a 1-way street. Yikes, I thought, what am I going to do now???? I'm sure I looked like quite a dope, but I did a u-turn right in the middle of the road!!! Thank goodness there wasn't traffic!!! After going around the block I was finally in line at the Jack In The Box. I made my way to the ordering kiosk and quickly ordered a cheeseburger and an iced tea. Would you believe that in response to my order, the person on the other end of the big plastic sign told me, "I'm sorry, we're all out of beef tonight!" WHAT?????????????? So I said, "What do you mean you're out of beef? Isn't this a burger joint????" Her response was nothing more than, "I'm sorry ma'am, we don't have beef!" So, begrudgingly, I conceeded and ordered anyway. Would you believe I ended up with a breakfast jack and 2 egg rolls!!!!! How's that for a substitute for a cheeseburger. I am now thouroughly convinced that the Lord has a sense of humor.

Lovebug Hugs,

6 more weeks at least.....

After much deliberation about Connor's situation, the infectious disease department here at Children's have declared little bug's temps as "fevers of unknown origin". UUGGGHHHH!!!!!!!!!! They did an ultrasound this afternoon on the subclavical bone and found that there was not a blood clot, which is good, so they have decided, at least for now, not to do an MRI. Instead, they have chosen a 6 week round of IV antiboitics to attack the "unknown" cause of these fevers. How I pray this is the right course of action. I'm not convinced, but I'm trusting the doctors with this decision.

I can't even imagine 6 more weeks, and that doesn't even include open heart surgery for his AV Canal repair. Yikes, I had no idea we would be looking at this long of a hospital stay in the first place and now to know that the extension of our time here is going to be another 6 weeks......WOW. I think I must be in survival mode right now because in the back of my mind I'm thinking, "OK, 6 more weeks, sure, we can do that." But then when I really stop for a moment I realize that we've already seen the seasons change once around here, and now we might also say hello to the first day of summer in the hospital as well. Good grief!!!

As for Connor, he has had a fever all day. It hasn't broke once since 4am!!! Nothing has helped to bring him out of this all day!!! Normally he responds to cool baths or medication at least for a short time, but today, nothing seems to work. Please pray that he could somehow break the cycle and find rest tonight.

Lovebug Hugs for now,

Docs are perplexed on every side!!!!!!!

So much for waking up to a better day!!! Connor had an incredibly rough night. He was close to being reintibated with the ventulator, but he did escape this intrution by a mere sliver as his breathing improved just a tad!!! Since 2am he has had a fever of around 104.5 and it has only dropped a degree or two since then. He is burning up on the inside, but he is cold to the touch on the outside. His little arms are just laying out flat and he looks exhausted. His heart rate is also continuing to be high in the 190's and his breathing is fast and labored, but suprisingly, he is tolerating it and is only on the c-pap.

After meeting with the docs today, they have plans for more blood cultures and more of the normal testing for these pesky fevers. They are concerned and they came right out and said today that they are perplexed because they can't find the source of his discomfort. They are frustrated because his X-rays look terrible for his lungs. His white blood count is extremely elevated which shows there's an infection somewhere, but they can't find it. His fevers are out of control. They would have expected improvement in Connor after having the PA Band surgery, but instead they see no improvement and he actually looks worse. They can't make sense of this clavical bone issue because it seems to go back at least 6 weeks, even though it was just detected on Saturday. They are so perplexed and this is worrysome to me and to them. What course of action do you take when you really don't know what to do????? Where do you look when you really don't know what is wrong?????

Today I will meet with a pulmonologist (lung doc) to discuss further observations from their perspective. They are considering an MRI, but they aren't convinced he needs it just yet. There are more tests to consider, but as of the moment, they are just planning to keep him comfortable today with extra sedation and try to get this fever under control.

Please lift up little bug before our Lord today. He needs healing in his body so desperately and he needs to find peaceful rest. May the Lord touch him with a miracle this day!!! How we need you Lord!!!!

Lovebug Hugs,

Monday, April 24, 2006

Another room, another diagnosis...UUUGGGGHHHH!!!!!

Sorry for not updating for a couple of days. We've been busy with Connor and his attempts at recovering. They moved us out of the cardiac icu room and back into the infant icu wing. We are now in the 9th room of our stay here at Children's Hospital. Connor has been continuing along his pathway toward better health, but there have been bumps along the path the last couple of days. He remains on the c-pap the majority of the day with only about 3 short breaks from it a day. He's having a difficult time supporting his breathing and he continues to have his "episodes" (ie, high temp, high heart rate, high respirations and low oxygen). His X-rays still show an extreme level of fluid in the lungs and so they have been giving him extra doses of lasix (a dieretic) to drain off the extra fluids.

Today has been especially difficult for Connor as he had a great deal of agitation from 8am this morning until about 3pm this afternoon. His heart rate was up over 200 for the majority of that time and he finally responded to his 5th dose of morphine and ativan around 3pm and is finally sleeping. The docs continue to be perplexed with our unique little bug and they had a new discovery today. Apparently, they recognized a cloudy spot on Connor's left clavical bone on Saturday's X-ray. They just brought it up today in rounds and I was able to ask some questions about it with the docs. They had infectious disease docs look at the X-rays to try and come up with a reason for this. They said there is a possibility that there could be a bone infection and this could possibly explain the crys of pain and the fevers that Connor gets. They are going to watch him closely over the next couple of days to see if they need to go in for an MRI or if they need to treat him with a 6 week round of antibiotics to attack the bone infection (if that's even what it is). I would be lying if I didn't say how frustrated I've been today. To watch Connor struggle for a straight 7 hours and to not be able to console him in any way was distressing for me. How I wish that I could take away his pain and promise him that everything was going to be ok!!!!

I've cried a lot today. I reached the sobering conclusion yesterday and today that we are really behind on so many things for Connor. From a developmental standpoint we haven't been able to work with Connor the way we would like to being here in the hospital. All our intentions to enroll Connor into early intervention programs have been replaced with simply surving another day in the hospital. We have so much catching up to do and it's starting to seem insurmountable. We're approaching 8 weeks of residency here at Children's and I am definately feeling the walls closing in. I know there will be an end to this one day, but today, in this moment, I just feel sad. Sad for our family being disjointed at the moment and so sad for Connor having to lay in his hospital crib struggling the way he is. Sad for Randy having to bear the responsibility of figuring out healthcare plans and making sure we're taken care of during our medical journey with Connor. Sad that I can't be home to cook my family dinner and enjoy a night at home with my two favorite guys (and Abbey too). Oh boy, I just realized I slipped into "poor me" syndrome. I don't mean to whine, I'm just sad today!!

I know that God's arms are strong enough to handle all of our pain and all of the pain that surrounds us. But for today, it is just overwhelming. I know that I can count on all of our blogging family to uphold our new requests for wisdom for the docs concerning this new bone issue and Connor's recovery in general. So many of our hospital friends have had a difficult day today as well with challenging news regarding their little bundles of love and this weighs in heavy on my heart as well.

Oh Lord, please hold us close tonight and whisper your sweet love into our hearts. We need your help, your love, your guidance and support to make it through each day. Allow your angels to decend upon us and protect our sweet little ones. We especially thank you for Herman and his constant care and companionship for Little Bug. We never doubt that you are near, but for today, could you just come a little closer so we can see your face and behold your reflection of love. Amen!!

Lovebug Hugs,

PS ~ Yesterday afternoon while Connor was sleeping, Randy blessed me with a special picnic surprise at Matthews Beach (just a couple of miles from the hospital). I have many thoughts to blog about this special gift, but for today, my heart just wanted to publicly say thank you to Randy for sensing my need for "romance" and for being so sweet about getting me out of the hospital for a couple of hours. I love you Randy!! You are the best husband!!