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

ER visit for Alex

 Wow! That may have been the quickest ER visit ever for Alex. I realized this morning that some of you who are newer to our lives may not understand why we have to go to the ER so frequently. So here is a short explanation before I update on this morning. 

Alex has what is called a Central Line. It is a "permanent IV" placed into a large vein. The tip of a central line sits just outside of the heart. Having this line puts Alex at a very high risk for Sepsis (blood stream infection). Sepsis often leads to Septic Shock which is fatal 40-60% of the time. With Sepsis you can go from being totally fine to fighting for your life in a very short period of time. Immediate intervention is necessary for the best outcomes. Due to this, Alex has to go to the ER for any temperature greater than 101. When he was younger they would ALWAYS keep him for 48 hours and give IV antibiotics until blood cultures came back showing there was no infection in his line/bloodstream. As Alex has gotten older and we know his body better and with the improvement of some labs that are able to give a high likelihood of sepsis, we have occasionally not been admitted for 48 hours. And when I say occasionally, I mean like 3 times in 16 years. 😉

That brings us to today...Alex had a headache last night, but was otherwise fine. He said he didn't feel great in the middle of the night, but nothing alarming. He woke up around 5 and "knew" he was getting sick. He woke me up shortly after. I took his temperature around 6 and it was 101.3. I started to pack up. His temp before we left was 101.9 (which isn't super high for Alex. He tends to run over 105 when he is really sick). We got to the ER around 7:30. We were immediately taken to a room. They ran labs and performed a Covid test. The doctor and nurse were both amazing. Once Alex got his large stress dose of steroids for his adrenal insufficiency he started to feel better. By the time labs started to come back he was feeling "almost normal". His labs were pretty close to his baseline. The lab that is indicative of sepsis was normal. His pancreas pain is no worse than normal. His Covid and Flu swabs were negative. So they have blood cultures started. He got doses of 2 extremely strong IV antibiotics. At the end of the day, the risk of having him in the hospital right now outweighs the risk of being home. They will call if his cultures grow anything. I will take him back if he worsens. But for now we are home.

Thank you to everyone who prayed for us this morning. A special thank you to Sonny, who always rushes over with a coffee for me when he finds out we are at the hospital. It is so nice to see a friendly face and have a warm coffee in these days of only one caregiver. 

Please continue to pray that Alex does not worsen and we are able to enjoy Thanksgiving together as a family.

Ali

Where does the time go?

 Seriously...How is it already half way through November. Our days and weeks really do seem so much the same! 

Maddy is busy with school, ballet, art, horseback riding and Hart. Alex is busy with school and gaming. I am busy trying to take care of every one and keep the house running. Bruce is working and trying to rest as he struggles through the chemo.

Overall we are doing well. Bruce is getting ready to start his third (of eight) round of Chemo. The kids are doing pretty well. After much thought and conversation, Alex has made the decision to get braces. It was not an easy decision as he has never really eaten and has extreme nausea and a quick gag reflex. But ultimately this is something he wanted to do so he wouldn't hate his smile. 

This last two weeks has been really hard for me. We have many friends who have tested positive over the past few weeks. Some of these interactions have left me uneasy. One of our fellow mito warriors who is generally one of the healthiest mito kids has spent a week in the PICU fighting Covid. But I have also been disheartened by the lack of understanding and sensitivity to what this disease could mean for my children. I have always said that being the parent of medically fragile children is isolating and this pandemic has just highlighted that once again.  But the blessing is seeing the beauty of true friendships and knowing who truly loves us and has our back. I will not waste time on people who show their true colors of selfishness and instead fill my life and my children's lives with those who surround us with love and hope.

We are continuing to adjust to being back to a one salary family, but I know I made the right decision as I am spread so thin with all that needs to be done to care for the kids with no nursing help as well as clean the house, cook, pay the bills, go to doctors appointments, school the kids and get Maddy to her activities. And we do try and fit in some time each week with Mimi and PopPop!

We are grateful for those that continue to pray for us as we travel this crazy road.

Ali

Extra Life Day

 As most of you know, we spend a lot of time at Church and with our church family (pre-covid). Our faith is so important and keeps us filled with hope. Alex's faith was apparent from a young age, but he always came back to one stumbling block... He would always ask me if God didn't make mistakes, why was he the way he was? meaning why did he have mitochondrial disease, why did he have to spend so much time in the hospital, why couldn't he eat, why did he feel bad most of the time. My answer through the years has always been the same. God gave you this life to share your story, to inspire other people and to shine a light on him. 

2011 was the first year we shared a little of our story for Make A Wish. But in 2014, we were asked to share our story for Cook Children's and we met Karol ( Cook Children's CMN Hospital Specialist) him shortly afterwards. That meeting made such a difference for Alex. It gave us purpose. It gave his life meaning. For the past six years, Alex and I have stood in front of groups large and small and shared our story and tried to give back. Alex loves all of these opportunities, but as an avid gamer, Extra Life holds a special place in his heart. It combines the two things that mean the most to him (outside of friends and family). This day, this event has brought him smiles and something to focus on during some of the toughest days. While we all wish this year could be like all of the others where he gets to go spend his day with other gamers. This day still fills his tank and his mission stays the same. To make sure that when other kids are in the hospital the services are there to make their stays a little bit easier. We are so grateful for every one of you who has so graciously given and shared. Alex is committed to trying to reach his goal. I will always stand behind him as he strives to give his life and his struggle meaning.

Thank you for loving us well!

Ali

A little about the beginning of Extra Life:

https://youtu.be/rHSZ_82wiJg

A video Alex made for Cook Children's:

https://youtu.be/jXeHXeGqZ-4

Alex's Fundraiser Link:

https://www.extra-life.org/participant/401726

My Gamers at it this morning!