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,
Lori

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!!