All is going well here. Alex is feeling better overall. He is still nauseous and feels cruddy off and on, but such a huge improvement from earlier in the week. He has not had a fever since Thursday and his vitals all look good. I am not really sure what the week holds. When you have multiple doctors involved sometimes they all give you info that is slightly different. So I will update with what I know, but please keep in mind that a lot is "what ifs" right now, not set in stone so it may change.
Tomorrow Alex will have a repeat echo to look at a valve that enters the right atrium of the heart. That is where they think there may be a pocket of yeast. If they still see it, then later tomorrow or Tuesday he will be sedated for a trans-esophageal echo so they can get a better look. If they do decide it is yeast they will treat more aggressively and for a much longer time. This is where it gets a little sketchy. Some of the doctors are saying if that it is yeast we can not replace his port. Others feel like we can replace the port. There is also some discussion that at some point he may need a heart cath to try and remove it.If they determine it is not yeast then the hope is to replace his port towards the end of the week. At this point, Alex knows NONE of this. I did not want him to sit and stress about it all weekend. I will sit him down tomorrow morning because he will know something is up when he is having another echo. We will hopefully know more tomorrow.
As for my mom...I've had lots of questions. We had a great day on Friday. She stayed with the kids so I could run home and pack up some more clothes and do laundry. She was craving Chinese food so I told her I would bring some back with me. We had dinner, talked, laughed (boy did we laugh) and settled down to go to sleep. Shortly after we went to sleep she got extremely nauseous and started to vomit. She continued to vomit off and on ALL night. By 5:00 AM it was clear that we needed to do something. I asked our nurse how I could get my mom next door to the adult hospital. The security guard was kind enough to drive her over and our nurse rode with her to make sure she got into the ER safely. (Have I mentioned how incredible our hospital is?). We really thought it was food poisoning based on how sick she was/the timing. Her labs do not look like she is "sick". Her initial testing looked like she might have a back up of stool but they gave her something and despite being on phenergan and zofran around the clock she is still nauseous. She is currently in their observation unit, but since she still cannot keep anything down they are planning on admitting and consulting GI. I have walked over a few times and checked on her. (It is literally across the street). She sounds SO much better today, but clearly cannot discharge her until she can eat and drink.
Thank you to everyone who has offered support in so many different ways. We are so blessed to call you all family and friends! Please pray for Mom to feel better and for clear cut answers tomorrow, but mostly for my boy's health both physically and emotionally as we go through this week.
Ali
Alex and Maddy
Sunday, April 30, 2017
Friday, April 28, 2017
Setbacks
Yesterday was definitely a day of ups and downs. Alex woke up feeling a bit better and was a lot less anxious. Unfortunately those positive vibes didn't last too long. Alex started to feel pretty cruddy again and by 7:30 his temp was up over 102. With the fever also came some anxiety about knowing that another surgery is upcoming in the near future.
The morning also brought with it more testing. We went down stairs for both an ultrasound of his liver, kidneys, spleen, and stomach. Then they took us over to echo to look at his heart. Once again child life came through in a huge way. They shuttled Maddy off to the playroom so I could go with Alex and Maddy would not be bored sitting in tests.
We got settled back in the room and waited for Mimi! Mom got here shortly before 3. Alex and I were both so excited to see her. Maddy was still napping, but we let Mimi wake her up. Maddy quickly shuttled Mimi downstairs for a medical play activity.
I was a little surprised when I got a knock on the door around 3:30 and a second visit of the day from our hospitalist. We stepped into the hall. (Alex who has always been an incredible advocate for himself, has asked that I not speak to the dr's in the room because it is "freaking him out"). Dr. H let me know that they had some results from the earlier tests. Thankfully his abdomen looked good. They did not see anything that looked questionable. It was also good in that they feel like they got enough images to say that. Alex's GI system is FULL of gas which makes it nearly impossible to see anything on ultrasound. Unfortunately the news on the echo was not as positive. They see what "may" be a pocket of yeast at the opening of the heart. They tried to go back to old echo's and see if they could confirm if it is something new or just part of Alex. They were not able to see an exact image where they felt like they can rule it out. The plan right now is that we will repeat the echo on Monday to see if they still see it. If they do, he will be sedated and they will do a transesophogeal echo. The treatment would be the same, but if he has endocarditis we would treat much longer. I was caught off guard. I will hopefully be able to ask more questions today.
Our GI also came by yesterday. We all wish there was more we could do to help his GI system so we wouldn't wind up in situations like this. We just don't have a whole lot of options at this point.
Our last visit of the day was from the ophthalmologist to look for yeast in Alex's eyes. He did not see anything concerning. This sweet man was about to leave and asked if it would be ok to pray with us. He was so kind and caring and we will gratefully pray with anyone!
Alex did spike another temp last night, but his vital signs looked much better then with previous fevers.
I had what I thought was allergies. But as the day went on I felt worse and worse. Weeks like this are brutal on a Mama's heart and I think my body is calling uncle! I have a nice little cold and no voice at this point. But I did take nyquil last night, so at least I slept.
A special thanks to my Mom who dropped everything to be here to help. I am so lucky to have been raised by a woman who continues to love completely selflessly no matter how old I am.
We are feeling so incredibly grateful for all the support. We feel the love and prayers. I wish I could recognize all of the people who have stepped up to help in so many different ways. We are so blessed by all of you!
Ali
The morning also brought with it more testing. We went down stairs for both an ultrasound of his liver, kidneys, spleen, and stomach. Then they took us over to echo to look at his heart. Once again child life came through in a huge way. They shuttled Maddy off to the playroom so I could go with Alex and Maddy would not be bored sitting in tests.
We got settled back in the room and waited for Mimi! Mom got here shortly before 3. Alex and I were both so excited to see her. Maddy was still napping, but we let Mimi wake her up. Maddy quickly shuttled Mimi downstairs for a medical play activity.
I was a little surprised when I got a knock on the door around 3:30 and a second visit of the day from our hospitalist. We stepped into the hall. (Alex who has always been an incredible advocate for himself, has asked that I not speak to the dr's in the room because it is "freaking him out"). Dr. H let me know that they had some results from the earlier tests. Thankfully his abdomen looked good. They did not see anything that looked questionable. It was also good in that they feel like they got enough images to say that. Alex's GI system is FULL of gas which makes it nearly impossible to see anything on ultrasound. Unfortunately the news on the echo was not as positive. They see what "may" be a pocket of yeast at the opening of the heart. They tried to go back to old echo's and see if they could confirm if it is something new or just part of Alex. They were not able to see an exact image where they felt like they can rule it out. The plan right now is that we will repeat the echo on Monday to see if they still see it. If they do, he will be sedated and they will do a transesophogeal echo. The treatment would be the same, but if he has endocarditis we would treat much longer. I was caught off guard. I will hopefully be able to ask more questions today.
Our GI also came by yesterday. We all wish there was more we could do to help his GI system so we wouldn't wind up in situations like this. We just don't have a whole lot of options at this point.
Our last visit of the day was from the ophthalmologist to look for yeast in Alex's eyes. He did not see anything concerning. This sweet man was about to leave and asked if it would be ok to pray with us. He was so kind and caring and we will gratefully pray with anyone!
Alex did spike another temp last night, but his vital signs looked much better then with previous fevers.
I had what I thought was allergies. But as the day went on I felt worse and worse. Weeks like this are brutal on a Mama's heart and I think my body is calling uncle! I have a nice little cold and no voice at this point. But I did take nyquil last night, so at least I slept.
A special thanks to my Mom who dropped everything to be here to help. I am so lucky to have been raised by a woman who continues to love completely selflessly no matter how old I am.
We are feeling so incredibly grateful for all the support. We feel the love and prayers. I wish I could recognize all of the people who have stepped up to help in so many different ways. We are so blessed by all of you!
Ali
Thursday, April 27, 2017
Scary Day
Monday night it appeared as if we were going to be discharged home on Wednesday to continue IV antibiotics for 2 weeks. When the infectious disease doctor logged on Tuesday morning to start working on home health orders she realized the culture from Saturday night was growing yeast. (In the world of central lines, yeast is the scariest/worst thing to be growing) By the time she made it up here Tuesday afternoon, Sunday's culture was also growing yeast and by night so was Monday's! The ID doc started a strong anti-fungal and we were still hoping to try and treat without having to remove his port. We were all aware that the reality was it would most likely need to come out.
Yesterday morning Alex woke up and immediately told me he wasn't feeling great. Shortly, after we checked vitals and his temp was over 104. With him declining and knowing how sick yeast can you they decided the port had come out...and pretty imminently. The hospitalist left to call a couple of other dr's and order labs and before she made it back in the room, surgery was already here to assess him. Alex was feeling bad and extremely scared. It is heartbreaking when your child knows that central line infections can kill them. When they have lost friends. The fear is real and it is brutal. Alex told me he over and over that he didn't want to die, that he wanted to get married and have kids and retire. He was worried about who would look after Maddy if he was gone. My Mama's heart was battling its own fear and breaking for my precious boy who has to carry so much in his head and heart. So many scars that will always be there. Poor Maddy was also scared and knew she was being shuttled off to someone. I tried frantically to reach out to a few "friends" in child life who I knew that Maddy would be comfortable with and tried to comfort both my babies.
I need to pause for a moment to acknowledge how incredible this hospital is and why we love it so much! The staff here has been incredible about Maddy staying with me and she has surely entertained the 4th floor. Yesterday in the frantic rush of getting Alex ready, Terri, the child life specialist for the floor came and grabbed Maddy so I could focus on Alex. She then arranged for volunteers to be with Maddy ALL day so my attention was where it needed to be. She went to drumming circle, played in the playroom, watched a movie, did stickers, and loved on miniature horses. They fed her lunch after checking with me to see what she could have. It was truly family centered care at its best. They realize it is not only the patient who is affected. They knew what was necessary and they made it happen so I could care for Alex without having to worry about Maddy. And she had a blast! Not to mention how awesome it is to have doctors who realize the role the parents play and are willing to DISCUSS treatment and not just dictate orders.
When we got down to OR holding Alex was still really nervous. So our beloved Kizzy and Ralphie (after making a quick detour to check on Maddy) came and hung out...as in Ralph got in the bed and cuddled. Not quite as good as Zoey or Mia, but a close second. The surgery seemed like it took longer then I thought it should, but I think a lot of it was the holding. We left his room around 11 and got back around 4!
Shortly after getting back to the room he started to decline again. He fever was back up around 104, his HR was extremely high, his blood pressures were low, her perfusion was bad. Overall, he just looked BAD. Similar to the ER on Saturday. The doctor and I made the decision to give him a huge dose of steroids since his body can't make cortisol. (He was already on IV steroids, but this was in addition) She also gave him a fluid bolus.
Infectious disease followed her in and she let me know what to expect over the next few days. Today he will have an echo of his heart, ultrasound of his liver, kidneys, spleen and stomach, and at some point an ophthalmologist will assess his eyes. They are looking to be sure there is no yeast anywhere. Yeast likes to attach to organs and hide. We need to be sure it was "only" on his line!
Because Alex was still not looking good they called the doctor back. They had switched to the night time on call hospitalist and I was really happy when my favorite hospitalist walked in. There is a trust there and we communicate/collaborate really well to make sure Alex is getting the best care. He did not like the way Alex looked and quickly ordered another fluid bolus. I mentioned that when Alex is anemic he runs really high HR's so we may give him some blood today depending on what his CBC this morning looks like. After that bolus, he started to look a little better so he ordered one more fluid bolus. Somewhere between the 2nd and 3rd bolus his fever broke. His HR is still pretty high, but not scary like yesterday.
This morning he is up and talking to me and feeling a little better. We will be inpatient for a minimum of another week. We need to be sure we clear this infection before we can place another port.
I am so very grateful for our village! The prayers, the support, the love we have felt has kept us going this past few days. THANK YOU!
I am so HAPPY that Mimi is flying in today to be here for me, her boy and to help with Maddy.
I know she can't wait to hug her best boy.
I am doing my best to weed through messages, respond and keep everyone updated, but please be patient with me as my focus is on my babies and making sure they are both cared for.
Ali
Yesterday morning Alex woke up and immediately told me he wasn't feeling great. Shortly, after we checked vitals and his temp was over 104. With him declining and knowing how sick yeast can you they decided the port had come out...and pretty imminently. The hospitalist left to call a couple of other dr's and order labs and before she made it back in the room, surgery was already here to assess him. Alex was feeling bad and extremely scared. It is heartbreaking when your child knows that central line infections can kill them. When they have lost friends. The fear is real and it is brutal. Alex told me he over and over that he didn't want to die, that he wanted to get married and have kids and retire. He was worried about who would look after Maddy if he was gone. My Mama's heart was battling its own fear and breaking for my precious boy who has to carry so much in his head and heart. So many scars that will always be there. Poor Maddy was also scared and knew she was being shuttled off to someone. I tried frantically to reach out to a few "friends" in child life who I knew that Maddy would be comfortable with and tried to comfort both my babies.
I need to pause for a moment to acknowledge how incredible this hospital is and why we love it so much! The staff here has been incredible about Maddy staying with me and she has surely entertained the 4th floor. Yesterday in the frantic rush of getting Alex ready, Terri, the child life specialist for the floor came and grabbed Maddy so I could focus on Alex. She then arranged for volunteers to be with Maddy ALL day so my attention was where it needed to be. She went to drumming circle, played in the playroom, watched a movie, did stickers, and loved on miniature horses. They fed her lunch after checking with me to see what she could have. It was truly family centered care at its best. They realize it is not only the patient who is affected. They knew what was necessary and they made it happen so I could care for Alex without having to worry about Maddy. And she had a blast! Not to mention how awesome it is to have doctors who realize the role the parents play and are willing to DISCUSS treatment and not just dictate orders.
When we got down to OR holding Alex was still really nervous. So our beloved Kizzy and Ralphie (after making a quick detour to check on Maddy) came and hung out...as in Ralph got in the bed and cuddled. Not quite as good as Zoey or Mia, but a close second. The surgery seemed like it took longer then I thought it should, but I think a lot of it was the holding. We left his room around 11 and got back around 4!
Shortly after getting back to the room he started to decline again. He fever was back up around 104, his HR was extremely high, his blood pressures were low, her perfusion was bad. Overall, he just looked BAD. Similar to the ER on Saturday. The doctor and I made the decision to give him a huge dose of steroids since his body can't make cortisol. (He was already on IV steroids, but this was in addition) She also gave him a fluid bolus.
Infectious disease followed her in and she let me know what to expect over the next few days. Today he will have an echo of his heart, ultrasound of his liver, kidneys, spleen and stomach, and at some point an ophthalmologist will assess his eyes. They are looking to be sure there is no yeast anywhere. Yeast likes to attach to organs and hide. We need to be sure it was "only" on his line!
Because Alex was still not looking good they called the doctor back. They had switched to the night time on call hospitalist and I was really happy when my favorite hospitalist walked in. There is a trust there and we communicate/collaborate really well to make sure Alex is getting the best care. He did not like the way Alex looked and quickly ordered another fluid bolus. I mentioned that when Alex is anemic he runs really high HR's so we may give him some blood today depending on what his CBC this morning looks like. After that bolus, he started to look a little better so he ordered one more fluid bolus. Somewhere between the 2nd and 3rd bolus his fever broke. His HR is still pretty high, but not scary like yesterday.
This morning he is up and talking to me and feeling a little better. We will be inpatient for a minimum of another week. We need to be sure we clear this infection before we can place another port.
I am so very grateful for our village! The prayers, the support, the love we have felt has kept us going this past few days. THANK YOU!
I am so HAPPY that Mimi is flying in today to be here for me, her boy and to help with Maddy.
I know she can't wait to hug her best boy.
I am doing my best to weed through messages, respond and keep everyone updated, but please be patient with me as my focus is on my babies and making sure they are both cared for.
Ali
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