I certainly didn't think that I would be spending New Year's in the hospital. This is a year where we have had some really high high and some really low lows. As the year comes to an end I feel my faith in people and a God who guides our days has been renewed. The love and support that surrounds us amazes me daily. I am so thankful for the countless prayers that are lifted for us each and every day.
Today was a day that started not very good and ended so well. Alex had a nother rough morning. He was so weak he didn't want to sit up or play. He just laid in bed and wached tv and was very quiet. We scrambled once again to come up with a plan as his temp continued to saty in the high 101's. We ran flu tests, rsv, looked at his ears, nose and throat all despite the fact that he has no symptoms of a virus. We were just hoping we would find some easy reason for a fever. Unfortunately it wasn't to be. The plan as of now is that if Buggy still has a fever tomorrow the femoral line must come out. We started a third antibiotic today (one he was on in the PICU but was stopped early in the week). If he still is febrile tomorrow we will add yet another med after pulling the line. We would either place a femoral line on the other side or a PICC line in his arm. We also did another CT scan today to look at his pancreas and the clot again. I have not received results yet.
The day turned around this afternoon when our good friends the Morgans got to the hospital. Kelly called me yesterday and told me that they didn't want me and Buggy to spend New Years alone so they would like to coem spend the day with us. It was such a nice treat to have a peice of home with us. Alex was SO happy to see Walker. The boys played games, watched movies, fought and laughed. We rang in the New Year around 9 and by the time I got back from walking the out Alex was sound asleep. We will get to spend some more time with them tomorrow before they head back to Fort Worth. I am so thankful for such incredible friends that came so far to put smiles on faces. We love you guys.
Our prayers are for a New Year filled with love laughter and health.
Ali
Alex and Maddy
Friday, December 31, 2010
Thursday, December 30, 2010
Another Day, Another Fever
We are kind of stuck between a rock and a hard place right now. It seems like so many of our decisions do not have a good choice. Alex continues to struggle with pancreatitis. His levels are 6 times the high end of normal and have not budged. He started with a fever 2 nights ago and it has creeped up and is sitting in the high 101's. No one is really sure what our plan of action should be. We have enough going on that there is no definitive proof of what is causing the fever which leaves us trying to make decisions without a whole lot of information.
This is what we know...Alex has pancreatitis. Alex has a blood clot at the end of his fem line which is sitting in his IVC. Alex has a fever.
This is where it gets confusing. Alex's pancreatitis has been the same for a week. There would be no reason for him to all of a sudden develop a fever. The doctors do not like to leave a femoral line in for this long bc they can be prone to infection. Also, a clot can be a source of infection. BUT, all of the cultures we have taken are negative and his labs do not look like he has an infection. The question is whether he has an infection that is not showing bc he is on two big gun antibiotics. SO, one group of doctors think we should pull the fem line. But we need access so we would have to do another line somewhere else that would be temporary. This would use up a central access spot that could be necessary down the road for a short time. THere is one spot they could do a peripheral IV, but then they would really struggle to get all of his medications in and they wouldn't be able to get nutrition into him which is never good with Alex bc he is already so skinny. The other group of doctors thinks we should try to leave the line and just watch until he gets worse or we find a definite cause of this fever. The problem with this is that if it is the line or the clot, he could become septic again and we could wind up in the same position we were in last week. Also complicating matters is that if we pull the line we could dislodge the clot and it could travel to his lungs and cause issues. We have done a chest xray. We will do more testing if his fever continues to climb. We are also waiting on our surgeon to come by and weigh in. Unfortunately, each day with a fever is another day before we can do surgery to replace our port and means another day we are stuck here. So the wheels have been spinning here all morning as we weigh the pros and cons. There is no right answer.
I am doing okay. I was lucky to have lunch with Momo (Missy's mom) today. She brought me food from my favorite restaurant and kept me company for a while. Tomorrow, the Morgan family is coming to celebrate New Year's with us. I am so thankful for friends. I was sad we didn't get to have the vacation we had planned with Grandpa. I was sad to say goodbye to my Mom. I am sad that Bruce is not here to help with Alex. But I am surrounded by people that love me and Alex and take the best possible care of him. I am bolstered by the love and prayers of all of our friends and family. I am thankful for the generosity of others that truly showed us the magic of the season and eased the burden of our house so I could concentrate on taking care of my precious baby. There are so many people I need to thank. Please know that I am thankful just too tired and busy to write you proper thank yous right now. The messages, notes, emails, cards and prayers have kept me going over the last 10 days.
Ali
This is what we know...Alex has pancreatitis. Alex has a blood clot at the end of his fem line which is sitting in his IVC. Alex has a fever.
This is where it gets confusing. Alex's pancreatitis has been the same for a week. There would be no reason for him to all of a sudden develop a fever. The doctors do not like to leave a femoral line in for this long bc they can be prone to infection. Also, a clot can be a source of infection. BUT, all of the cultures we have taken are negative and his labs do not look like he has an infection. The question is whether he has an infection that is not showing bc he is on two big gun antibiotics. SO, one group of doctors think we should pull the fem line. But we need access so we would have to do another line somewhere else that would be temporary. This would use up a central access spot that could be necessary down the road for a short time. THere is one spot they could do a peripheral IV, but then they would really struggle to get all of his medications in and they wouldn't be able to get nutrition into him which is never good with Alex bc he is already so skinny. The other group of doctors thinks we should try to leave the line and just watch until he gets worse or we find a definite cause of this fever. The problem with this is that if it is the line or the clot, he could become septic again and we could wind up in the same position we were in last week. Also complicating matters is that if we pull the line we could dislodge the clot and it could travel to his lungs and cause issues. We have done a chest xray. We will do more testing if his fever continues to climb. We are also waiting on our surgeon to come by and weigh in. Unfortunately, each day with a fever is another day before we can do surgery to replace our port and means another day we are stuck here. So the wheels have been spinning here all morning as we weigh the pros and cons. There is no right answer.
I am doing okay. I was lucky to have lunch with Momo (Missy's mom) today. She brought me food from my favorite restaurant and kept me company for a while. Tomorrow, the Morgan family is coming to celebrate New Year's with us. I am so thankful for friends. I was sad we didn't get to have the vacation we had planned with Grandpa. I was sad to say goodbye to my Mom. I am sad that Bruce is not here to help with Alex. But I am surrounded by people that love me and Alex and take the best possible care of him. I am bolstered by the love and prayers of all of our friends and family. I am thankful for the generosity of others that truly showed us the magic of the season and eased the burden of our house so I could concentrate on taking care of my precious baby. There are so many people I need to thank. Please know that I am thankful just too tired and busy to write you proper thank yous right now. The messages, notes, emails, cards and prayers have kept me going over the last 10 days.
Ali
Tuesday, December 28, 2010
An All Around Hard Day
Today has been rough from beginning to end....
We had to say goodbye to Mimi today. Alex and I were both so sad to see her go. The three of us are of one heart and one soul. We are happiest when we are together. I will forever be thankful to have such a strong, caring, kind, loving mother who taught me how to be a good mother and a strong woman. Without hesitation last week she jumped on a plane to be here for me and Bug. She spent a week with little sleep and a broken heart as she watched her Bug struggle back from the brink of death and supported me in every way possible. Thank you doesn't even begin to express what it means. We will be counting the days until we are together again.
The new Lovenox injections stink! There is no two ways about it. The medicine burns and Alex is in tears as soon as he knows it is getting close to time. I cannot imagine doing this for the next 3 months!
To top the day off, Bug is asleep with a temp of 100.5. Which means we have to call the doctors and most likely start all kinds of tests to be sure he doesn't have another infection brewing.
This poor little angel has been through enough, I am praying that he starts to feel better and gets a reprieve soon.
Ali
We had to say goodbye to Mimi today. Alex and I were both so sad to see her go. The three of us are of one heart and one soul. We are happiest when we are together. I will forever be thankful to have such a strong, caring, kind, loving mother who taught me how to be a good mother and a strong woman. Without hesitation last week she jumped on a plane to be here for me and Bug. She spent a week with little sleep and a broken heart as she watched her Bug struggle back from the brink of death and supported me in every way possible. Thank you doesn't even begin to express what it means. We will be counting the days until we are together again.
The new Lovenox injections stink! There is no two ways about it. The medicine burns and Alex is in tears as soon as he knows it is getting close to time. I cannot imagine doing this for the next 3 months!
To top the day off, Bug is asleep with a temp of 100.5. Which means we have to call the doctors and most likely start all kinds of tests to be sure he doesn't have another infection brewing.
This poor little angel has been through enough, I am praying that he starts to feel better and gets a reprieve soon.
Ali
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