Sunday, August 21, 2011

August 21, 2011

So I could tell you that I'm just a tad bit stir crazy today even though I have been home more this time than last. Today I would really like to be home with all my family together. Maybe soon. So Fridsy's MRI was wonderful. The fluid in that cyst had actually reduced in size and I know that is because of God's healing hand and prayers from so many of you. It is still there and will be watched closely. So as far as Neurosurgery goes we could go home, the problem is that Sam started having seizures this week too. They are different from the seizures she had a few months ago so we didn't catch them at first. They have not done another EEG because all of the machines they had were in use over the weekend. Since they are not life threatening seizures they are trying to see how she does when her meds are increased. Overall Samantha is doing so much better than she was in the middle of last week. I am hopeful that we will get to come home tomorrow or in the next few days. We think the world of both her neurosurgeon and her neurologist because you can really tell that they care about our Sam. We are so blessed to get back on the 6th floor because the nursing staff is fantastic. We have never had a nurse didn't love!!! Thank you all so much for your continued support. The cyst being smaller was our first major blessing of the week but there was also another. When we had to bring Sam back Tuesday I was really stressed about missing days at work since I had just started back. I should have known that God would provide.... It turns out I still have several donated days from last year that I was able to use. I really wish I could thank everyone who donated any days to me last year! Your gift was a blessing that you just can't even imagine. If you happen to know someone who donated days, please hug them for me! I also wish I could hug and personally thank everyone who has said prayers on Sam's behalf. You really have made a difference in our lives! My Sunday School lesson that I taught today was on the word TRUST. The fact that we can trust God is so powerful and the fact that He sends us people to pray, comfort and support us through troubled times is truly LOVE. That is the exact reason why people should find a church body to belong to. God knows we are stronger in numbers.  He must rejoice to see His people support each other and praise His name. So very thankful for all of your support! Love, Steph

This was Sam after her second shunt was placed last week. :(

Gwen couldn't stand it any longer!
We let her get in her hospital bed so they could watch TV together!

Tuesday, August 16, 2011

August 16, 2011

So Sam kept getting worse instead of better. We finally brought her into the Emergency Department last night around midnight. We had called the neurosurgeon on call for the last three nights. Since she was over 72 hours out of surgery and still having problems they had us come on  in. She had not eaten since 1 pm on Monday afternoon with a projectile vomiting episode Monday evening. I had posted on facebook a few weeks ago about shots being one of the worst things for a baby. I take that back... finding an IV on a baby beats that hands down. They finally got an IV in, repeated the chest x-ray and also another MRI. Then another projectile vomiting episode when they tried to give her meds. This time I was the target. (Would be the target for that sweet child any day!) This poor baby has been tortured! Once all this was done around 4 am we started to get some news. There seems to be another pocket of fluid that is in a different location from the areas of the two other shunts. The thing that was concerning was that from Saturday until now that pocket of fluid has increased. Her symptoms are most likely cause by some kind of neurological situation but we are unsure of the exact cause. It could be that her brain is trying to get use to having the second shunt in and this will all blow over in the next few days. It could also be that this new pocket of fluid is growing now that there is room (created by getting rid of the pressure from the 4th ventricle shunt) and it will have to be drained as well. This is yet another brain surgery and the doctor will actually have to go cut through part of the brain to make a passage for the area to drain into one of the other shunt areas. When he came to talk to us tonight you could tell he was troubled by all of this. He said that in some children it seems like they get in these situations where they have these battles and stay in and out of the hospital for long periods of time. It is just so hard to believe that just over a week ago I was going for a check-up with Sam and now we are deep into surgery and trouble. The thing that breaks my heart the most is the amount of pain she has been in the last few days. Most of the last few days she has whimpered, trying to get to sleep with little rest. She has just been miserable. I have not seen that sweet, happy smile out of her in days. This afternoon her IV needed to be changed because it blew up her leg with pressure. They had the transport crew in there from almost 2 hours and they could not get an IV started on her. Please pray that she feels better and that no other surgeries will be needed. If they are, please pray that God will guide the hands of the surgeons and that He will heal Sam's head. So many times when we are in the pits of life we can't understand why we are there..... Sometimes we are not even aware of the purpose years after the troubles are gone. The good news is that God is bigger than all of this and He knows why. I rest in His arms knowing that His plan is perfect. Your prayers cover our family daily, but most of all our sweet Sam. God has special plans for that sweet child!

Sunday, August 14, 2011

August 14, 2011

Sam's scans were good and we were able to come home yesterday. She was still in pain so they sent her home with pain meds. She slept most of yesterday which was good. Last night when she woke up she was more like herself until she had a sudden scream of pain and got really upset. When she gets upset her whole head turns red and I am sure the pressure builds up and it makes those shunts work. Well her incision sites started to show a small amount of fresh blood after that. We of course called the hospital and the doctor on call told us that might not be anything, like we thought, and just to watch her. She settled down quickly and went to sleep shortly after that. I woke her up to feed her once her pain meds were due and she ate a little again with not tons of signs of pain. Then when the next feeding and dose of pain meds were due, she woke up crying when I was changing her diaper I noticed she was warm. Travis took her temp and she had a low grade fever. We changed her clothes to another outfit while feeding her and it did come down. Not sure if she had just gotten too hot in the other outfit while sleeping or the pain meds started to work. She has not been eating great. She has only had about 3/4 to 1/2 of what she normally eats and she goes a longer time in between feedings than normal. All of this could be the way she is healing but it puts us on edge because we have been down the road of shunt infections before and it is not a road we want to travel again. Please say an extra prayer that everything is okay and she will be feeling better soon. Thanks so much. Steph

Friday, August 12, 2011

August 12, 2011

Sam made it through surgery and they were able to get the shunt placed. PRAISE GOD!!!!! She has been very upset since the surgery because of pain but we finally were able to get her settled down and she has been sleeping. She is still very swollen and it is hard to hold her because of where the surgery was on the back of her head. I felt like if I moved the slightest bit I was touching a tender spot for her. Tomorrow she will go for another MRI and a shunt series to make sure everything is working okay. I feel so blessed for the amazing doctors that worked on her today! I feel so blessed for the wonderful nursing staff on the 6th floor who make us feel like family! I feel so blessed for all our friends and family who have prayed, visited and posted messages of support today! Sam even had a special prayer group on the DES playground during 1st grade playtime. I am sure God was smiling down on those special little prayer warriors! Most of all I am blessed by an amazing God who placed all these people in our lives, blessed us way beyond what we deserved and sent His Son to come to Earth to die on the cross for my sins! Seeing Sam in pain today broke my heart.... I simply can't even begin to imagine how God felt watching His Son at Calvary! So thankful she made it through today! So very thankful! Love you all..... Steph

Thursday, August 11, 2011

August 11, 2011

I have been on such an emotional roller coaster today. We had an appointment for an MRI for Samantha at 12:45 today. As soon as the tech brought her back to us Travis asked if she was able to tell us anything and she said no but her body language told us so much. Then when we got to the office to see our neurosurgeon we didn't even wait 2 minutes before we were called back. They came in right away and told us that she needed a second shunt in her 4th ventricle and it needed to be soon. She showed us the scans from the beginning of May until now and there was a huge amount of fluid that is causing her head to grow and pushing on her cerebellum. She told us that she was surprised that she was not showing more symptoms for how much fluid was there. So when her main doctor came in we decided to have the surgery tomorrow. We are not completely sure of a time yet but right now it is around noon with us being at the hospital around 11 am. If all goes well we would be able to come home on Saturday. It was just this Monday when we went to visit the nurses on the 6th floor and one of them joked about Samantha's room being open. I never thought we would be back on that unit within the week. I was watching this video tonight on the day she was born and it is amazing to see the pressure on her head before the first shunt was placed.
This was one of many videos that Travis made so that I could see her better since I could not be with her much on that first day. It is amazing to me just how much her head changed 24 hours later after the first shunt was placed. Tonight I have noticed somethings that were small signs of all this taking place. She isn't focusing on things as long or as much as she was a week or two ago. She has been extremely fussy today and can't get more than 30 minutes rest at a time. She has started to startle easily again like she did when she was just a few days/weeks old. We had put her on medicine for reflux but the doctors think now that that was just from the pressure in the 4th ventricle and that she most likely will not need it after this surgery. All in all it is a wonderful thing that they were able to catch this and we are able to get it fixed. The bad thing is that she will have two shunts now leading down into her stomach. This means more chance of infection or shunt malfunctions. This is also a more dangerous surgery to do because of where it is located. All day when I have started to cry I have had to tell myself... Look how far God has brought her. She is a miracle. Look how far God has brought me. He is a miracle worker! Your prayers and support have been simply indescribable! You are amazing people and I am so blessed to have you all in my life. Please pray that there are no complications during surgery tomorrow. Also that this shunt will work successfully and that there will be no chance of infection for either shunt. If one shunt gets infected, both would have to come out and it would be another 3 week or more hospital stay with an external drain until the infection cleared up. God knows what He is doing and I am so glad He is in control. I am a mess- wouldn't even know where to begin if it were all up to me! I will try to update tomorrow. Love, Stephanie

Monday, August 8, 2011

August 8, 2011

So I had planned all morning to post tonight because we had a neurosurgery check-up today for Samantha's shunt. Thinking that our little family has finally gotten into a routine, life was feeling like it was starting to get back to the basics. I was so happy when we didn't even have to wait 5 minutes for our appointment today because I had a few things to do in Winston before we headed back to attend Open House for Gwen. The PA came in and we were almost finished  but the last thing she checked was the measurement of Sam's head. It was when she rechecked it and charted it on the computer that I felt like I had been hit by a truck. It seems that Sam's head is larger than is should be based on where it had been and her weight/length now. She had a line graph up on the computer and the little black dot was well above where it should have been. When she looked back at earlier scans she saw the 4th ventricle and the fluid that was there. So she wants Sam to have an MRI to see what might be causing her head to be larger than it should be. It seems that the current shunt is in place and working like it should since her soft spot is not showing signs of fluid build up and she is not showing signs of being in pain. It could be several different things... It could be that this is just the way her head has grown and the size will level off very soon. It could be that there is fluid build up in another area of the brain. I am sure there are more possibilities but until we get the MRI we just don't have a clue. I guess my fear is that it is the 4th ventricle and she will need another shunt. She told me again today that putting a shunt in the 4th ventricle is a more dangerous surgery. They also tend to get infections and blockages more than the shunt she currently has. My heart just sank. The possibility of more surgeries this soon just tears my heart apart! She is not even 5 months old. Well we had an MRI scheduled for 4:00 this afternoon and then they called back and told us that we would have to change that because she will have to be sedated.  I think it is so ironic that just this morning before I left I was talking to a very dear friend of mine about how we need to watch when the devil is messing around in our lives. I am sure he had a good laugh today. Well he might have had a laugh today but I know who has the last laugh. God is still with us and He will get us through. Mother Teresa once said, "I know God will not give me anything I can't handle. I just wish He didn't trust me so much." I am not sure if God is doing this because He trusts me but I do know how much He has molded me through this process. Please pray for our girl. Please pray that this is not what it could be and that it is just the way she is growing. Please help me praise God for what He has done in her life this far! I have two other quotes that have made a mark on me tonight. One is by W. Elliot- "Perseverance is not a long race. It is many short races one after another." I had felt like we were getting to the end of our very long journey and quickly realized today that Samantha's Journey is really many short races put together. The other quote is by Bill Cosby- "Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." I am so thankful that God has given me Travis as my personal comedian. Thank you for your prayers. My heart was so heavy tonight and I wasn't going to post but I know that your prayers have helped to get Samantha to where she is today. Love you all.... Stephanie