Recovery Day Three-11:22 pm

Hello all! Today was expected to be the worst day of the immediate recovery, but we have almost made it through and have even seen some improvements.
Last night, Andrew's swelling seemed to reach a plato of some sorts. He began with swelling just at the incision site and in the areas around the top of the head where the tools were used to hold his head in place for the surgery. The RN in the ICU explained that this "tool" was kind of like a "vise" and that the pins in it had created the painful holes in the side of his head and swelling surrounding them.

The oozing on the side of the head is from the "vise."

On day one, his eyes began to swell and looked red with a blueish tint. This swelling gradually increased and consumed the rest of his head and face. Last night he was in great pain almost seemed tormented by the itching of his skin and lips. It was around midnight when we got him to rest with the help of some additional pain medication. This morning, however, we awoke to a slightly smaller version of the swelling and to our pleasure, he was again able to open his eyes. As the day has gone on, the swelling has slowly began to look a little better and this afternoon we can see the swelling starting to dissipate from the top down just as it came.
Our doctor believes the jerks and twitches are myoclonic seizures that are probably focalized on the "good" side of the brain. However, the nurses tell us that sometimes they see kids do this and then as the brain adjusts to the effects of the surgery these events seem to go away. We "loaded" Andrew with A LOT of valium yesterday to give his brain a chance to rest and today he has had a continued dosage. This will continue through at least tomorrow morning. He has been taken off of the high doses of decadron. We will increase his regular seizure meds. He is sleeping a lot at times and his blood pressure is jumping up and down depending on how much valium and pain medication he is taking. Today it fell quite low, but then later it came back up. The child life group hosted a "Carnival" in the lower lobby of the hospital today. We took Andrew down in a wagon, but he was really too tired to enjoy it.


Now for the PRAISE! Andrew walked with the help of the OT/PT to the nurses desk today. He is following most commands and when he is awake seems to be like Andrew!!! So far I am not able to see the disconnection syndrome that we were warned about. As the swelling has decreased, we can see his eyes again. He has smiled more today. He has been more able to "snuggle" today and he doesn't seem to be in as much pain. Additionally, he played with some toys this afternoon.

These are the moments that break our hearts yet give us strength. 
It was so hard to watch him fighting just to stand. 

Getting up off of that bed was NOT easy!

We got to see Alex today, thanks to Inkie and Carrie! It did our hearts well to get to see his little face.

Thank you again to all of you who have been keeping check on us and praying for us! If you have called and we have missed you, we're very sorry. Sometimes we just haven't been where we could get to the calls for taking care of Andrew or talking with nurses or the doctor.

Please continue to pray for Andrew. God's hand has been so evident in this endeavor. Please know that your kind words and prayers have not only given us strength but at times have been a portion of our sustaining strength. We love you all and look forward to getting back home soon!

Victoria--Wonderful, wonderful!

Recovery Day Two (Evening)

Top view of incision and swelling

So miserable! 

The IV continued to give us a hard time.  This was a terrible day.

Late in the afternoon, he was able to get up for a short while.

Hello all! Andrew has had a very difficult day today. To our great disappointment, the Dr. thinks that Andrew is having focal seizures that are possibly originating from the right side of his brain. This is quite unfortunate and very disappointing to us because we had hoped that if the seizures continued that all activity would be in the already damaged left hemisphere and not is the "good" area of the brain. We are seeing several jerks and twitches that do not look like any of the drop seizures that we have seen before. When we began seeing these episodes, the Dr. immediately ordered Diastat (rectal valium) to try and stop the spells. After seeing him, he ordered IV valium to hopefully calm Andrew's brain down and allow him more time to heal before becoming active. He is very heavily medicated now and often remains in a sedated sleep for long periods of time. However, God is still good, this afternoon, even after such a difficult day, he managed to wake and smile and laugh with us a little. He is still able to walk short distances with assistance and still seems to be using both hands. I don't know if I just can't recognize it or not, but Andrew seems to show NO disconnection syndrome. (Praise the Lord!) His speaking skills seem to be intact and his vocabulary seems to be as fluent as before Tuesday!
Thank you so much for all of your prayers and support! This means so much more to us than we could ever tell you! I hope that all of you will be blessed as you have been such a blessing to us in this difficult time. Tomorrow is a new day and we have been warned that it may be worse than today! Please keep praying for Andrew's healing and recovery!
CES-Thank you so much for the basket and balloon; Andrew loved it. He smiled happily when I told him who it was from! :) Much love to all of you!

Pray

Hello all, please pray for Andrew. He had a really difficult night from 2 a.m into today. This morning he is so swollen that he can't open his eyes and is barely holding his head up. He is also jerking and twitching a lot. He seems to be in a lot of pain and distress but isn't talking to us enough to clarify. Please pray for him, his doctors and nurses.

Recovery Day One-2:14 am

Hello all! Today has been a long day. We are pleased to tell you that Andrew smiled at us today. He also sat up in his bed, stood (with assistance)made it to the bathroom. He briefly laughed with us and has been awake for brief periods. We are seeing some "jerky" movements that we will ask the doctor about tomorrow. Additionally, the nurse seemed to think that he may have had an absence seizure just after getting up earlier today. PLEASE KEEP PRAYING FOR SEIZURE HEALING. His swelling is quite severe tonight. He is hardly able to open his eyes (because of the extreme swelling), but this was expected and easier to deal with since he has smiled at us.
All evening long the scripture "I will go before thee, and make the crooked places straight" has continuously been on my mind. I looked the verse up and found it to be Isaiah 45:2. So many of us have been praying about this day. We have prayed for Andrew. We have prayed for his doctors. We have prayed for his nurses. We have prayed for every aspect that our minds could consider surrounding March 24th. I must tell all of you that God has been so evident in the events of today and what has lead up to today. God has placed people and occurances in our lives that have made this day so much easier to bear. In searching for a hotel for Monday night, I believe that God allowed a lady named Evelyn to answer the phone at the downtown Marriot hotel. Her kindness and compassion for our family was overwhelming. We were quoted a room rate that is by and far less than other hotels in the area and greated with welcoming smiles upon arrival. We were given a special gift from the hotel and granted a peaceful rest. After a long trip and days of preparing for the surgery, this comfort met our need for rest and strength. Additionally, as I had hoped it would, the time for surgery passed quickly after we arrived at the hospital. The chaplain at the hospital came by to pray with our family and prayed the exact needs of our hearts without even knowing us or our history. Additionally, our surgeon gathered with our family to pray before the surgery. As she (the surgeon) held my hand, she squeezed it in comfort and granted me peace in releasing our little boy into her hands. When it was time for the surgery, Andrew so confidently and peacefully left our arms and walked into the operating room. He was calm and did not seem scared or fearful at all. His maturity and eagerness to smile never failes to amaze me. This too was another prayer answered. It took 45 minutes to get Andrew ready for surgery. The nurse called at 9:00 and told us that Andrew went to sleep easily and the doctor was ready to begin. It took one hour, not three hours, another answered prayer, for the doctor to complete the callosotomy. A third hour was consumed with concluding the surgery and preparing Andrew for the ICU. Although Andrew was quite sick and at times having difficulty breathing, our nurse Leah provided excellent care for Andrew and remained by his bedside constantly. She too seemed to be part of God's plan for us. By the end of the day, Brian and I were emotionally exhausted and physically drained. Karen Butler, epilepsy coordinator, and a dear friend to me, saw our exhaustion and need for rest. She found us a room with beds to sleep. Parents are typically expected to get a hotel or sleep in the waiting room outside of the ICU. We were afraid to leave Andrew and had planned on alternating between sitting up with him and sleeping. Karen's help allowed us both to sleep just minutes away from Andrew's bedside. Another prayer answered because the strength gained from the sleep has given us endurance for today. Also, God provided Linda James at the Marriot (We returned to shower) who very quickly reminded us that God was in control of all things and that Andrew was being cared for by great and mighty God. I believe that Linda was there at that time for the purpose and reason of encouraging us and meeting our needs. Our nurses have been wonderful all day today and very dilligent in their care. As posted before, Andrew's achievements today have been monumental and hopefully a sign that the surgery will help. As many of you know, we have been working on this surgery with our doctors and care providers for several months. In this day, I believe that God did go before us to align so many things to make this path easier for us and for Andrew. He has answered our prayers in so many ways. Please continue to lift up our family, the doctors, nurses, and Andrew's recovery as we continue the healing process.

Surgery and Recovery Day One

Hello all, Andrew's surgeon tells us that the surgery went well. He has a large (ca. 6") incision across that top of his head. Dr. Einhaus thinks that the surgery went as she expected. She said that he lost very little blood. He did not require the blood that we had banked. He was in some pain last night, although he was still quite sedated from the anesthesia. He did have some trouble keeping his oxygen rate up. He was supplimented (but not incubated) with a machine to help supply additional oxygen to him. He spent last night in the ICU. He had a fever of 101.5 at times through the night, but it has subsided for now. We were just moved to 5 South in room 5610. He is quite a bit more swollen today than yesterday, but is getting some rest with the pain medications. Keep praying for his healing and recovery.
Thank you to so many of you who have prayed for us during the last few weeks. Your words of encouragement and care have been a tremendous part of our sustaining strength. Thank you to all of those who were with us during the surgery yesterday. It meant so much to have you there.

Surgery Date

We will return to Lebonheur on Tuesday, March 24th for the callosotomy. The surgery should begin around 7:30 a.m. and may last for 3-5 hours. Please keep Andrew and his doctors in your prayers.

http://www.carepages.com/carepages/AndrewNewborn/updates/page/24

Surgery Date

Posted Mar 21, 2009 11:47am

We will return to Lebonheur on Tuesday, March 24th for the callosotomy. The surgery should begin around 7:30 a.m. and may last for 3-5 hours. Please keep Andrew and his doctors in your prayers.