Things are trekking along here.... Alex is feeling better but still running consistent temps between 100-101. At this point we are not sure what infection we are fighting. We do know that his labs started to look much better after 24 hours on antibiotics. We have not seen the primary team or Dr. P yet this morning so I am unsure if we will do a full course of antibiotics or not.
From the GI side of things, labs look good. His weight is up a tiny bit, but they said they need to assess it in 2-3 day chunks. They are making it sound like they want to keep an eye on him for a while! UGGG! I am hoping if things stay stable they will change their minds.
Alex's temperment and behavior has been excellent. He has been playing quietly and watching lots of movies. I have told him we will start school tommorrow. He is trying to convince me that you cannot do school in the hospital! Last time he got Dr. K to write him a Dr's note excusing him from school. It's a conspiracy around here!
I will update if I have any more info or there are any changes later!
Ali
Alex and Maddy
Sunday, September 11, 2011
Saturday, September 10, 2011
Not What We Expected!
We are in the hospital, but not necessarily for the reasons we expected! We saw GI yesterday morning and as we expected they were very concerned about his weight and current nutritional status. It was decided that Alex should be admitted to start TPN and watch labs closely. There is a syndrome called refeeding syndrome that is seen in severely malnourished people when they are given proper nutrition. It makes their electrolytes very unstable. So they decided he needed to be watched in the hospital for several days and check labs every 12 hours.
We headed to home to get all of our stuff and head back to the hospital. We were admitted to the general pediatrics floor and within an hour he had spiked a fever. This started a mad rush to try and get labs run, cultures drawn, antibiotics started and us moved to our "normal" unit for more complex care. Unfortunately, there were no beds available so it took a little while. The poor boy had to be stuck for blood, do a throat swab and a nasal swab. It was a hard night! He was able to fall asleep about 8:30 and we got antibiotics, IVIG and TPN started. Alex spiked a higher fever to 103. We have done labs twice and it is clear he has an infection, but still have no source.
We have seen several doctors, but until we know what is going on and see more labs we have no plan for when we will be discharged.
I will do my best to keep y'all updated. Thanks for your prayers.
Ali
We headed to home to get all of our stuff and head back to the hospital. We were admitted to the general pediatrics floor and within an hour he had spiked a fever. This started a mad rush to try and get labs run, cultures drawn, antibiotics started and us moved to our "normal" unit for more complex care. Unfortunately, there were no beds available so it took a little while. The poor boy had to be stuck for blood, do a throat swab and a nasal swab. It was a hard night! He was able to fall asleep about 8:30 and we got antibiotics, IVIG and TPN started. Alex spiked a higher fever to 103. We have done labs twice and it is clear he has an infection, but still have no source.
We have seen several doctors, but until we know what is going on and see more labs we have no plan for when we will be discharged.
I will do my best to keep y'all updated. Thanks for your prayers.
Ali
Thursday, September 8, 2011
Update on our appts
We arrived in Houston on Tuesday. We had a sleep study scheduled for Tuesday night. Sleep studies are one of Alex's least favorite tests, but he did VERY well. He was a trooper while they hooked him up and was asleep before the tech even left the room. Poor baby was exhausted!
We woke up yesterday morning to quickly run home and shower before heading to the hospital for 2 appointments. Our first appt was with Dr. P (Alex's allergist/immunologist). She totally caught me off guard when as soon as she walked in she announced that she was going to be starting Alex on Sub Q immunoglobulin (just like IVIG, but a different infusion method). This is a treatment that has been used sporadically on Alex many times and has been on the table as a regular treatment for a long time! It is an infusion that should help Alex's immune system work better and keep him from getting sick so often and so severely. The majority of the appointment was spent discussing this. Alex also needed to get another vaccine as he has no titers for pneumoccocal.
After a break to visit some friends and grab lunch, we headed to our second appt with Dr. J (the pulmonologist/sleep dr). She unfortunately only had very preliminary results so we discussed a lot of "what ifs". The first thing she did was a Pulmonary Function Test. Alex's results were significantly worse then his last two PFT's. She also confirmed that Alex definitely has asthma. After discussing that we moved on to the sleep study. She does know that Alex has both restless leg syndrome as well as Periodic Limb Movement Disorder. She is going to run some labs before we determine whether or not to treat. She did not have any results, but we discussed possible oxygen or bipap at night depending on what the results show.
We see GI tomorrow. I have been told at this point that we are putting Alex back on TPN at night. I will not know until tomorrow whether we will be admitted for a few days or not.
Ali
We woke up yesterday morning to quickly run home and shower before heading to the hospital for 2 appointments. Our first appt was with Dr. P (Alex's allergist/immunologist). She totally caught me off guard when as soon as she walked in she announced that she was going to be starting Alex on Sub Q immunoglobulin (just like IVIG, but a different infusion method). This is a treatment that has been used sporadically on Alex many times and has been on the table as a regular treatment for a long time! It is an infusion that should help Alex's immune system work better and keep him from getting sick so often and so severely. The majority of the appointment was spent discussing this. Alex also needed to get another vaccine as he has no titers for pneumoccocal.
After a break to visit some friends and grab lunch, we headed to our second appt with Dr. J (the pulmonologist/sleep dr). She unfortunately only had very preliminary results so we discussed a lot of "what ifs". The first thing she did was a Pulmonary Function Test. Alex's results were significantly worse then his last two PFT's. She also confirmed that Alex definitely has asthma. After discussing that we moved on to the sleep study. She does know that Alex has both restless leg syndrome as well as Periodic Limb Movement Disorder. She is going to run some labs before we determine whether or not to treat. She did not have any results, but we discussed possible oxygen or bipap at night depending on what the results show.
We see GI tomorrow. I have been told at this point that we are putting Alex back on TPN at night. I will not know until tomorrow whether we will be admitted for a few days or not.
Ali
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