Crossroads

 We are at a bit of a crossroads today. Not much has changed over the past few days. Alex continues to look and feel good and we continue to have positive blood cultures. On Saturday we reaccessed Alex’s port and added antibiotics locks for several hours into our plan. Tuesday, Wednesday, and Thursday the blood cultures turned positive before 12 hours. Friday’s cultures grew at 18 hours. Saturday’s cultures were drawn in the morning and didn’t turn positive until after 30 hours. We started the antibiotic locks Saturday afternoon. So far Sunday’s cultures are still negative. The doctors remain hopeful that things are heading in the right direction and that the addition of the locks will finally clear this infection. We need 3 clear cultures in order to go home and finish our antibiotic treatment. If anymore cultures turn positive then we will likely need to have surgery to remove this port and place a temporary line and then come back in a few weeks to place a new port. Alex is anxious and having a hard time staying positive that we will be able to save this port.

Please continue to pray that we can clear this infection and get home!

Ali

Not much to report

 I haven’t updated, because I am really a little unsure of what to say. Overall, Alex has been feeling pretty good. he has not had a fever since Wednesday. He looks good. Nothing is hurting. His blood pressures and heart rates have been a little lower than we would like. But despite how good he looks and feels we continue to have positive blood cultures each day. And so we sit and wait. We are also having a hard time with antibiotic levels and finding the best dose to treat. The thought at this point is that the infection is in his port and not his bloodstream. So along with the IV antibiotics we are also doing antibiotic “locks” into his port where we let the medication sit for several hours and then draw it back out. This is a little tricky because Alex does not do well without dextrose for very long. 

We ask for prayers that we are able to clear this infection. If we are not able to do that we will need to have surgery to remove this port and then a second surgery several weeks later to place a new one. 

In the meantime, Alex and I will continue to use this time together to watch shows, to play games and to enjoy our time together.

Ali

Thanksgiving in the Hospital

 

As this Thanksgiving comes to a close, I have so much to be thankful for. I am thankful for family and friends that love us through good and bad times. I am grateful for the ability to always find joy in all circumstances. I am thankful that Mimi and PopPop live so close now and were able to cook for Bruce and Maddy and give Mad some extra love. I am thankful for a hospital close to home that offers exceptional care. I am grateful for doctors, nurses and child life staff who have become friends and family and make our hospital stays easier. I am grateful for two amazing kids who are incredibly resilient and fill my days with laughter. I am mostly grateful for faith that offers hope.

I apologize for not updating last night. Tuesday night I got a total of 2 hours and 41 minutes of sleep according to my Fitbit. By last night I was exhausted. Both Alex and I slept incredibly well last night. Alex ran fevers Tuesday night and into Wednesday morning. He has not had a fever since lunchtime yesterday. His second set of blood cultures were also positive so we know that he truly has a bloodstream infection. Overall, Alex doesn’t feel that bad. He is tired and his heart rates are running extremely low,  it otherwise he is doing well. While we had originally hoped we might be discharged tomorrow, that is highly unlikely at this point. We need to have some negative blood cultures and figure out IV antibiotic levels in order to go home. Add to that trying to get a pharmacy to make and deliver IV antibiotics during a holiday weekend and it doesn’t look promising. We have seen more people during the past few days then the past 8 months. At times our room has sounded more like a party than a hospital room. It has been full of chatting and laughing and joking around. Alex and I have had some good one on one time that is hard to come by. 

So all that to say we are doing well considering. Thank you for all of the prayers and good thoughts. I pray that each of you have had a Happy Thanksgiving and enjoyed time making memories with your family.

Ali