I am not doing very well this afternoon. I need to get all this out and try to get it all in perspective. Jon and I took Savannah to see a Physical Medicine and Rehab Specialist this morning. If you know Savannah, you know that she has had a lot of hospitalizations in her short 4 years. Three years ago she spent 2 1/2 months in the PICU at UNC Children's Hospital. During this time, she was there for respiratory distress, RSV, and pneumonia. She was on a ventilator for 6 weeks. She had a tracheostomy and a colostomy. While on the ventilator, she had a cardiac arrest. She was revived quickly, but apparently, not quickly enough.
You see, during those couple of minutes, half of her large intestine died. Hence the need for the colostomy. She was also on what was dubbed by the physicians "elephant doses" of drugs to keep her sedated while on the ventilator. It took months to get her weaned from all the drugs, even after we were sent home. While she was going through some drug withdrawal, they thought she had a seizure. An EEG and MRI were done. She did not have a seizure. However, at the time we were told she had some "extra" fluid around her brain. The neurologist did not elaborate or tell us what that meant. It didn't seem like something we needed to worry about. We had enough to worry about already, right??
Well, it's been 3 years and Savannah had still not regained what she knew before all this took place. When she was 15 months old, she had an 8-9 word vocabulary, despite having global developmental delays. Now, at 4 years old, she only has one word: mama. All this time we were hoping and praying she would recover. That hasn't happened. That's why we went to the doctor today - to see what we could do.
Although the doctor could not view the original images from that MRI, he did read the report. He told us that the extra fluid in her brain was from where brain cells had died and the fluid was there in its place. He speculated that it was from the cardiac arrest incident where there wasn't enough oxygen getting to her brain (and instestines). There is no way to reverse this damage. The rest of her brain now has to be "trained" to compensate for the loss. They are going to do another MRI in February to make sure there isn't anything else going on that needs to be addressed.
The part that makes me angry is that this information has been in her file for almost 3 years and no one ever told us. We could have dealt with this back then instead of now. We could have been focusing more on speech therapy all along. She has been getting the therapy, but it would have been nice to know this back then.
I'm just a bundle of nerves right now. I don't know what to do. I've just been crying off and on all afternoon. It's just not fair. And, yes I know, life's not fair. I know it could totally be worse. She could have died. I am happy she is here with us. I just wish ALL of her was here with us. WHY MY BABY?? Please pray for us.
7 comments:
Praying and loving you this afternoon. God wrap your Mighty arms around my friends. Strengthen them as only you can. Take the pain away from this family. Show them the wonderful plans you have for Savannah. Show me how to be a better friend and comfort to Joanna. Amen.
Praying for you, Joanna. I cannot imagine how hard it must be to go through this. You're an amazing mother and she's one amazing little girl.
Oh my. I can't imagine the feels, both are justified, but that doesn't help fix the problem. I pray that Jesus will put his loving arms around you. That He will whisper to you, that He loves you. and He will help you through this. For whatever the reason God did not want you to know about it then. Hard as it is to find out now, He was saving you from something. I pray that He will send the right people to help and I pray believing that Savannah will surpass her goals this year. I love you sister in Christ.
I'm so sorry Joanna. Remember He is on His throne through all of this. Praying for His strength and comfort for you all. Love you.
Lord hold on tight to this family. Let them cry on your shoulder and rest in your arms. Comfort them in this hard time and let them know you are in control and have a plan. You are a Mighty God. Thank you Lord. Love you Joanna.
Wish I was there to put my arms around you!!! I know it doesn't help to write a bunch of words because words are inadequate. I know it doesn't help to quote scripture because at this moment, scripture is inadequate. What I do know is that the Father loves you with an abiding love that passes our level of understanding. So don't try to make sense of this now--you are hurt, you are at a loss to come to any undestanding of "why" right now. And that is ok. Your strength will come back to you. Your faith will be strengthened because you were born for such a time as this and to be the mother and advocate for that precious baby!!! Right now, just rely on the love and prayers of family and friends. That's why we are all in your life--we'll hold up your arms in this season!! Love & prayers to you all!!
I can't even put into words how my heart is going out to you and your family. I will continue to pray for guidance, patience and most of all peace and strength to get through the days ahead. It will be a long road. But a road the Lord will walk with you through. I think your anger is well placed and understandable. Allow the Lord to heal that as well with time and all our prayers. So much love to you all!!
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