Two steps forward, three steps back…what is wrong with this picture? Yesterday was highly frustrating. Nothing can really prepare you for the emotional trauma of watching your child deteriorate and having the medical community say everything is fine. The reason they say he is fine medically is because he is stable. The reason we say he is deteriorating is because he is requiring more equipment to support him. Due to mounting frustration with this issue we started asking questions to anyone who would listen about what was happening.
Our questioning finally got us in touch with the neonatology fellow who was willing to spend some time talking with us. He said that even though he was requiring more support he felt Caden was very stable and would not deteriorate further at this point. We questioned him about the right lung which we were being told had a lot of fluid in it and his perspective was that it was either collapsed or compressed because of the hernia. Due to this belief he is scheduling a meeting between cardiothoracic and pediatric surgery so they can coordinate their efforts with a scheduled surgery. He did say the scenario has changed since Caden’s birth since he was so stable at birth. Apparently they had talked about just doing the coarc repair, discharging him and then do the diaphragm repair later. This is no longer a possibility due to the compromised lung function so he will have to be in the hospital until both repairs are complete.
So what does this mean for scheduling? Well, the only thing we know is that surgeries will now need to be coordinated and will need to happen before Caden is discharged. We do not have a date or a plan and this is very unnerving. In addition, because Caden is so stable he is not receiving any priority. The medical team calls this the silver lining. We call it the black hole. It is frustrating to think that your child has to actually get sick to the point of compromising his outcome just so he can get in for surgery. So we wait and we pray. The emotional stress is starting to manifest itself in physical ways. Carey finds it easy to cry at the drop of a hat and I no longer have much desire to eat. We hope to get an update from the neonatal team on Wednesday.
Tuesday, January 20, 2009
Monday, January 19
Posted by Greg at 9:16 PM
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6 comments:
Greg,
It is so hard to hear how down you both are feeling. The feelings of helplessness and fear have to be overwhelming. I wish there were some magical wand that could be waved over your family to make all of this disappear and let you go home, now, with a healthy baby. As I lack the wand and the adequate words to express how much I wish things were different for you, I find that I have only one thing to offer. My favorite passage in the Bible, that has gotten me through lots of different situations, is one that I can't think of or read without the melody I know them to, running through my head. "Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31. I am praying that God renews yours and Carey's strength, and that you start hearing concrete news on when Caden will have his surgery that you can start living outside of the state of limbo and in a reality of your family home.
Kambra Buell
Carey and Greg, I have shared your story with several friends and have asked them to step-up their prayer vigil for the two of you, of course for Caden as well, however, for your individual strength as you continue to persevere.
Psalm 34 has recently been a HUGE encouragement to me.."I will praise the Lord at all times. I will constantly speak his praises...let all who are helpless take heart...I prayed to the Lord, and he answered me. He freed me from all of my fears...In my desperation I prayed, and the Lord listened; he saved me from all of my troubles...The Lord hears his people when they call to Him for help. He rescues them from all their troubles. The Lord is close to the brokenhearted; he rescues those whose spirits are crushed..."
I hope that you too might find some encouragement. I think of you both daily, and pray for your throughout my day at work and at home in the evenings. I am committed to you both as a prayer warrior, as well as my prayer group. I love you both. Melissa
Psalm 29: 11 - "The Lord gives his people strength. The Lord blesses them with peace."
Though our hearts and bodies grow weary - God has the strength we do not. I pray that strength for you both.
Greg and Carey,
Hang in there....I prayed for you 3 times today specifically for strength and for Caden's surgery schedule. Keep asking lots of questions...even to God. He is your biggest "social worker" and will always listen. Keep going and keep gaining strength for Caden and for Kyler. More prayers will head up for you all.
Rest in peace. Check out Rev 21:4 It even covers crying:)
Megan and the guys
Uuugh, sounds frustrating!
Love you guys,
Tamra
Dear carey,
I'm so sorry you are going through this emotional rollercoaster. I am always thinking about you and Caden. I'm here for you anytime.
Fer
Hi Greg and Carey - I'm so sorry for the stress I know these delays are putting on you (and Caden). Know this - God is in control and if there are delays then there is a reason that only He knows. Know that I'm thinking of all of you all the time and that everytime I think of you I pray for you. I'm really glad to hear that Kyler is starting to bond - what a great thing. I love you all!
Martha
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