This has been a long, trying week. When we came home on Saturday we knew Alex still had some recovering to do. As has happened in the past, the flu is hard on Alex's body. His last set of labs in the hospital showed that his hemoglobin and platelets were dropping. His labs also showed he had yet another episode of acute pancreatitis. Although he wasn't well, we felt confident that we could do everything that needed to be done at home. Since Alex can never tolerate feeds when he has pancreatitis, our orders were to follow-up first thing Monday morning to get IV fluids to keep his blood sugar up and keep him hydrated during the day since his TPN only runs at night. We were also supposed to repeat labs to make sure they weren't looking worse. Unfortunately, both our GI and his nurse were out on Monday. It was a long hard day trying to get people who don't know us to understand what was necessary to keep Alex well. We also had a nurse from our agency to come out to assess Alex (which is protocol after a hospitalization) and she was concerned about his lungs. Monday night when Alex went to brush his teeth for the first time since his procedure he had a large amount of bleeding. Our labs didn't come back.
On Tuesday, we saw our beloved Pediatrician. He is always so helpful because he has known Alex since the day he was born. He knows all the history and is such a good judge of what is concerning and what we can let go. Without the labs, we couldn't make a whole lot of treatment plans, but we decided we would chat after the labs came back to determine next steps. We also got our fluid situation sorted out and breathing treatments ordered. By Tuesday night our GI office and Home Health Company had both called the lab multiple times with no results.
Wednesday was just more waiting and watching as we couldn't make any decisions without the knowledge the labs would provide.
Thursday we repeated the labs in the morning and had an appt with our GI in the afternoon. We were all happy that his labs are improving. We made the decision to attempt half strength feeds at an extremely low rate (10 cc/hr) and progress as Alex can tolerate. His biopsies from his endoscopy didn't provide any information about the pain he has been experiencing for almost a month now. At this point we are left wondering if the pancreatitis was brewing and the flu/strep sent him over the edge or if the pain is from something else.
Alex is improving, but is still really pale and tired. He is still in pain, but he is toughing it out. Please say some prayers for him as we continue to try and increase feeds. Please also pray for Maddy who is running a low grade temp and is coughing and sneezing. She has been on Tamiflu so we are hopeful she is just fighting a cold.
Thanks for loving our family during the good and the bad times.
Ali
Alex and Maddy
Friday, February 10, 2017
Saturday, February 4, 2017
Home, Sweet Home!
Well this week didn't exactly go as planned!
On Tuesday, both kids had GI appointments. For Maddy, the discussion centered around her slow growth and nutrition. For Alex, we discussed the increased pain he has been experiencing for the past 2.5 weeks. Dr. O didn't want to make any changes with Alex until seeing if he could find a cause for the pain.
On Wednesday, We had to be at the hospital at 5:30 as Alex was scheduled for an endoscopy and some dental work. Dr. O didn't see anything visually. He scoped both his upper GI and also took a look around his Jejunum through his J-tube Stoma. He took biopsies and we don't have the results of those yet. The dentist did a deep cleaning and had planned on removing 3 baby teeth. When she got in there she found 9 baby teeth that needed to come out! We had an excellent anesthesiologist and Alex did pretty well. We were home around lunchtime and he just took it easy as he wasn't feeling great.
He woke me up at 4:30 Thursday morning saying he didn't feel well. We took his temperature which was 103.5. Bruce was at a sales meeting in Austin so for the second day in a row I quickly packed up both kids and headed to the hospital. We arrived in the ER and were rushed into a room. Alex is always at a high risk for rapidly declining because of his mitochondrial disease and Adrenal insufficiency. Our ER does an excellent job of quickly responding to keep him stable. The initial assessment focused on his central line. He was complaining of a really bad sore throat and had started to cough a little bit so i asked about testing for Flu and Strep. We were all shocked when he came back positive for both Flu A and Strep. He was admitted. He feels pretty cruddy, but stayed pretty stable. I convinced the doctor to let us come home today. Some of his labs were trending in the wrong direction so we are keeping a close eye on him and will need to follow-up with several people this week. I am just happy to be home!
We are so grateful to our awesome neighbors who took care of the dogs Thursday morning when I had to rush out and one of Alex's nurses who came and picked up Maddy from the hospital and kept her the majority of the day so I could focus on Alex. Maddy's hematologist called in Tamiflu for her and we are hoping she doesn't come down with the Flu as well.
Thanks for everyone who offered to help.
Ali
On Tuesday, both kids had GI appointments. For Maddy, the discussion centered around her slow growth and nutrition. For Alex, we discussed the increased pain he has been experiencing for the past 2.5 weeks. Dr. O didn't want to make any changes with Alex until seeing if he could find a cause for the pain.
On Wednesday, We had to be at the hospital at 5:30 as Alex was scheduled for an endoscopy and some dental work. Dr. O didn't see anything visually. He scoped both his upper GI and also took a look around his Jejunum through his J-tube Stoma. He took biopsies and we don't have the results of those yet. The dentist did a deep cleaning and had planned on removing 3 baby teeth. When she got in there she found 9 baby teeth that needed to come out! We had an excellent anesthesiologist and Alex did pretty well. We were home around lunchtime and he just took it easy as he wasn't feeling great.
He woke me up at 4:30 Thursday morning saying he didn't feel well. We took his temperature which was 103.5. Bruce was at a sales meeting in Austin so for the second day in a row I quickly packed up both kids and headed to the hospital. We arrived in the ER and were rushed into a room. Alex is always at a high risk for rapidly declining because of his mitochondrial disease and Adrenal insufficiency. Our ER does an excellent job of quickly responding to keep him stable. The initial assessment focused on his central line. He was complaining of a really bad sore throat and had started to cough a little bit so i asked about testing for Flu and Strep. We were all shocked when he came back positive for both Flu A and Strep. He was admitted. He feels pretty cruddy, but stayed pretty stable. I convinced the doctor to let us come home today. Some of his labs were trending in the wrong direction so we are keeping a close eye on him and will need to follow-up with several people this week. I am just happy to be home!
We are so grateful to our awesome neighbors who took care of the dogs Thursday morning when I had to rush out and one of Alex's nurses who came and picked up Maddy from the hospital and kept her the majority of the day so I could focus on Alex. Maddy's hematologist called in Tamiflu for her and we are hoping she doesn't come down with the Flu as well.
Thanks for everyone who offered to help.
Ali
Friday, January 27, 2017
Choice
When I started this blog almost 10 years ago, I promised myself that I would be honest. So while I always try to focus on the positive, I also need to be honest about he struggles we face. So while we continue to struggle with the kids not feeling well, we are CHOOSING to march on and try to find joy in our days. Thank you to all of you who reached out last week. Your friendship, your support, your prayers mean so much.
Alex continues to suffer from significant stomach pain. Alex stomachs hurts every day (and has since he first told me when he was 2) and he never complains. It is just a fact of life for him. But this is something new and has him telling me he hurts and even asked to lower his feeds. We are trying to get tot he bottom of what is going on. We see GI on Tuesday and he will have an endoscopy on Wednesday. In the meantime, he perseveres in a way that always amazes me and still managed to go to violin, acting and golf this week as well as tag along to Maddy's cooking class. One bright spot has been watching the bond between Alex and Zoey (Alex's service dog) grow closer. Zoey's ability to detect and alert when Alex isn't feeling well is incredible. Now if we could just nail down some of her more "basic" training, it would be great. She will be going back to the trainer over the next few weeks which is always a hard transition.
Maddy is Maddy. She is such a hot mess. She can be so sweet, but she is so sassy and so stubborn. She drives this mama crazy most days. But just when I think I may kill her, she says or does the sweetest things! She also isn't feeling great, but it isn't quite as clear. She is just really fatigued and fussy. She is struggling in therapy and when things are hard for Maddy she isn't very nice to deal with! Her poor therapists have been through the ringer with her this week. We have some amazing friends in our lives and one special family gifted Maddy a hot wheels ride on for Christmas. It took us a few weeks for the weather to cooperate enough to enjoy it, but boy has that brought some smiles this week. Maddy wants to ride her "speed racer" all day, every day.
We are so grateful for all of our friends and family who smile with us through the good times and support us during the hard times. We are so hopeful that days of feeling better are just around the corner.
Ali
Alex continues to suffer from significant stomach pain. Alex stomachs hurts every day (and has since he first told me when he was 2) and he never complains. It is just a fact of life for him. But this is something new and has him telling me he hurts and even asked to lower his feeds. We are trying to get tot he bottom of what is going on. We see GI on Tuesday and he will have an endoscopy on Wednesday. In the meantime, he perseveres in a way that always amazes me and still managed to go to violin, acting and golf this week as well as tag along to Maddy's cooking class. One bright spot has been watching the bond between Alex and Zoey (Alex's service dog) grow closer. Zoey's ability to detect and alert when Alex isn't feeling well is incredible. Now if we could just nail down some of her more "basic" training, it would be great. She will be going back to the trainer over the next few weeks which is always a hard transition.
Maddy is Maddy. She is such a hot mess. She can be so sweet, but she is so sassy and so stubborn. She drives this mama crazy most days. But just when I think I may kill her, she says or does the sweetest things! She also isn't feeling great, but it isn't quite as clear. She is just really fatigued and fussy. She is struggling in therapy and when things are hard for Maddy she isn't very nice to deal with! Her poor therapists have been through the ringer with her this week. We have some amazing friends in our lives and one special family gifted Maddy a hot wheels ride on for Christmas. It took us a few weeks for the weather to cooperate enough to enjoy it, but boy has that brought some smiles this week. Maddy wants to ride her "speed racer" all day, every day.
We are so grateful for all of our friends and family who smile with us through the good times and support us during the hard times. We are so hopeful that days of feeling better are just around the corner.
Ali
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