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

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

On the Road again...

I feel like this is the story of my life recently and I am pretty sure Brucey would agree! We stop in briefly to do laundry and restock meds and supplies, but I feel like I have spent the last 6 months living out of a suitcase!

This time we are in our second home...Houston! We drove in bright and early this morning. We were hoping our GI would have a cancellation today and be able to squeeze us in, but he didn't even have clinic. OOPS! Alex has a sleep study tonight which he is less then excited about. We have only done one sleep study almost 3 years ago and it was traumatic to stay the least. For a child with sensory issues there is nothing fun about eeg leads that smell and oxygen cannulas. Luckily we are 3 years into this journey and have been through much worse. At this point Alex is on oxygen almost every time we are in the hospital so he isn't nearly as freaked out as last time. I just hope he keeps us the brave face once we get there tonight!

Tomorrow, we see our immunologist and pulmonologist. The allergist/immunologist is one of the main members of Alex's health care team. One of the doctor's who knows him best. So Dr. K wants her opinion to weigh in on what we should do regarding Alex's weight loss and hydration issues.  On Friday we see GI and then they will make a decision. We have been told by numerous people to expect to be admitted.

At this point we will let the week play out. I am unsure how long we will be in Houston. Hoping for a quick turnaround and some quality time in our own house!!!

Ali

PS- I guess I should say he is doing fabulous on the new med. The first two doses caused some stomach pain, but since then we have had no problems.