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!!


Anonymous said...

Just want to say that I love you, Lori.

- Ruthie

Heather Bennett said...

My heart sinks a bit with yours as I hear of your sadness. You know, I am thankful for that. God allows us to feel for our family so deeply so that we will understand the need to hold them up. So, tonight I hold you up. Know that as you ALL rest tonight, you will be in our prayers and thoughts. Please do not feel bad for feeling sad or for sharing that sadness with us all. It is important for you to do so. How can we pray for your specific needs, if we do not know them. Now we know. Now we can pray to that need. Tomorrow we pray will be a better day. Hopefully another, peace, sunshine...who knows what God has in store. All I know is that he loves you and he holds you and Randy and Connor in the palm of his hands. All of your plans for where you want to be in Connor's development are in God's hands. Remember... "For I KNOW the plans I have for you!" His ways are so much higher! Trust Him!

Sleep tight!

Love you!

Anonymous said...

"We are hedged in (pressed) on every side [troubled and oppressed in every way], but not cramped or crushed, we suffer embarrassments and are perplexed and unable to find a way out, but not driven to despair;

We are pursued (persecuted and hard driven), but not deserted [to stand alone]; we are struck down to the ground, but never struck out and destroyed;

Always carrying about in the body the liability and exposure to the same putting to death that the Lord Jesus suffered, so that the [resurrection] life of Jesus also may be shown forth by and in our bodies." 2 Cor. 4:8-10

Lori as I read your words this is the scripture that came to my heart - one you know more than anyone! I believe the Lord just wants to remind you that He still hasn't abandoned you & that there are many holding up your arms when you are too weak to hardly pray yourself. We are all believing with you that the Lord is still doing a mighty work in the precious life and that His healing power is at work even now despite what the evidence might show. Conner is an overcomer and will grow up to be a mighty man of God!

Your blogs touch all of our hearts, tonight we do pray that He would touch yours in such a sweet and tender way and find rest in His presence.

Sweet dreams.

Believing with you for miracles!

We love you,
Chris & Lisa

Emma said...

I don't even know you, really, and you don't know me at all, but I can sense your love and trust in God. Thank you for reminding me not to slip into that woe-is-me syndrome! I've been there today, too, although not for exactly the same reasons, of course, but I know it's not an easy place to get out of! I so appreciate your updates on Little Bug and knowing just what to pray for.

I've become so attached to you and your little family. I hope to meet you someday and be able to watch Connor grow into that strong boy he's going to be.

We'll pray for a better tomorrow for Bug!--Emily

Auntie Maureen said...

A bone infection? Wow what else could this little bug get? Maybe he is getting all his ailments out of the way the first year of his life so he can be at home with you and Randy and never be at the hospital again. I sure hope that is the case.
I was hoping that from what Randy has been telling us that no news was good news but I need to remember this is a complicated bug we're talking about.
Don't feel bad about feeling trapped in a hospital cycle. You have permission to be down every now and then but you are not allowed to stay down. You're a Weeble. Remember they wobble but they don't stay down. That is who you are. You are a strong woman who from time to time needs to sit down and cry. Give yourself permission to do that. Then stand up and face the world or should I say hospital again with a renewed strength.
I am concerned about the other friends who you have made who have faced a bad time today. I will continue to pray for them and am anxious to hear what is happening. I do plan to stop by tomorrow sometime unless your busy.
I love you,

Anonymous said...

I am believing for miraculous blessings tonight and tomorrow for Conner and all of his little buddies there at Children's.

Thank you Lord for revealing the bone issue, now continue to work in wisdom for the doctors to know how to treat it, and work in strength for little Conner so that the path chosen to fix it, would work quickly! Amen

I love you Lori,


Anonymous said...

Your family and your beautiful son are in my prayers... a girlfriend from the hospital...

The Pogreba's said...

Dear Lori and Randy,

When you look into Connor's eyes you see him and he sees you. Such love is communicated between all of you during those moments of eye contact. The's all about the love and it's worth every moment of it no matter what else is going on. We continue in prayer for your little mighty man of God as do so many others. Thank you for this web site that not only shows us how to pray but also shows your heart and emotion as you continue with Connor through this journey.

Richele & Nick

Anonymous said...

My name is Lynette (like your sister-in-law:) and I grew up just down the street from your husband and his dear family . For the last several weeks I have been following your little bug's progress and just want you to know that across the country there are people praying for you and your family who you don't even know. We have embraced you spiritually , lift you up in prayer daily, and hold on to the many promises in the Bible that the Lord has given us. He is the great physician, we can't put boundries on anything he can do. The Lord knew your son when he was in your womb and that was only the beginning of the awesome experiences he has in store for him. Thank you for all the wonderful pictures of Connor. He is a handsome little guy and I can't wait to get updates as he continues to grow. You, Randy, and the team of doctors who are caring for Connor will continue to be thought of and prayed for daily .

Debi said...

Your BUG is a really special little bug... that many people have grown to love just by the blogging...I hope to meet him...his Auntie has shared picture with me and I read your blog all the time....My prayers are with your family ...thank you again for sharing your journey with are a wonderful mommy and I to hope you can cook dinner at home with your boys soon..I really enjoyed the picture of Abbey and her family???how special...

Hugs to your Little Bug...Blessing to you and Randy...

Dad and Mom said...

Good Night Lori we love you and Randy and Connor so much God has promised to renew your strength in the morning, His faithfulness is so trustworthy.

A verse has been going through my mind these last days and tonight I read it in the amplifed version Exodus 14:14 "The Lord will fight for you, and you shall hold your peace and remain at rest." Oh Lord we pray that this rest will flood Lori and Randy and Connor's bodies and that they will be renewed in strength tomorrow. Oh Lord we come against unbelief and ask that you help us to see the miracle that this journey is bringing we know Lord that your ways are higher than our ways thank you Lord that you are God our Heavenly Father.

Sleep tight now and we'll talk to you tomorrow.
Love you, Dad and Mom xoxoxoxoxoxo

Tara Blanchard said...

Oh Lori,
It's so good to hear you get that out. And it's NOT a "poor me thing" that you're doing, it's you being human and having VERY human emotions. How could you NOT have those feelings?!
I have no words to share for you tonight, for I'm speechless. But know that my little family is praying for your little family. I KNOW that God is SO close to you right now and that He hates to see all of this pain and confusion. He loves you all very much.
In His precious name,
The Blanchard family

Michelle said...

Sorry to hear about this latest find with the spot on his bone. Poor Connor, I feel for him (and you guys!) having to go through all these medical tests and what not. Praying for some answers to his episodes, praying he gets better, praying he can go home sooner rather than later.

Anonymous said...

Ditto on my friend michelle's comment. It is easy to understand how frustrating all of this would be, and I hope that you are able to get some answers soon.

Continuing prayers for Connor.

Anonymous said...

When the foundation shifts, thank the Lord He is the strong foundation!

Anonymous said...

Lori - Amanda and I so enjoyed visiting with you and connecting with Conner. All of you are continually in our prayers. Karla

Anonymous said...

Lori & Randy,

We thank the Lord that in our weaknesses and not understandings that HE is our strength and that we do have the Lord to lean on. We are praying that Jesus ministers to you three today and we are praying for a much much better today and for miracle upon miracle!

We love you!
Sue * Randy

Anonymous said...

Oh Lori,
Don't ever think that you don't have a right to slip into the 'poor me syndrome' once in a while. Most people would have done it a lot more than you have.
I still pray for the three of you daily. I just wanted you to know that and tell you to keep your chin up.......It will get better soon. God knows what your going through and he already sees the end of the tough road ahead even if it seems like its never coming.