Saturday Morning Update

I will start with the positives. Alex and I both slept well from about 10 until 4. Alex was much more comfortable and our nurse knew we were so tired so tried to be extra quiet for us.

Unfortunately shortly after 4 I heard some commotion and “39.5”. So for my friends who aren’t used to hospital life. Temps get taken in C and 39.5 equals a high temp (around103). My mom senses immediately got my tired butt out of bed as the lights flipped on. Our room was flooded with people and activity.  So a little about the way things work at cook children’s...they have a screening that is completed whenever they do vital signs. The screening assigns a number and if you score higher than a certain number you trigger a “sepsis alert”. It starts a chain reaction where the charge nurse, a respiratory therapist, the hospital isn’t on call and a Nurse Practitioner from the PICU come and evaluate and potentially give orders. Alex’s high fever and low oxygen saturation’s along with a few other factors triggered this alert. Ultimately, the PICU NP and I both felt he looked way too good and stable to even consider the PICU. However she did order some labs and a chest X-ray. At this point I do not have results other than word on the street is that there was quite a bit of gas in the small intestine that they could see so we may be doing another X-ray later. I will update more as I get more information.

After things settled down  and Alex and I fell back asleep, apparently his respiration’s were low. So the nurse turned off both pain pumps without talking to anyone. AHHHHHH!!!! Can you hear the screams. One of the medications was purposely chosen because it does not effect respiration’s, but she stopped that as well so Alex woke up in quite a bit of pain again and we are playing a bit of catch up. I am going to ask the pain team to put a note in the chart that no one should stop the pumps without calling them.

Our surgeon is here again today so we will see him and our GI comes on call today so we will see him as well along with the hospitalist and pain team. I am hoping for some answers and an uneventful day.

I will update later. Thank you for the prayers!
Ali

Day 2 Colectomy

I was just getting excited to write a positive post, but in typical Bug fashion he has thrown us a curve ball.
Alex had a rough start to the day. His pain was staying at an 8-9 and he was having trouble talking or breathing. He started having trouble with his oxygen saturation’s which were falling to the low 80’s. We started him on oxygen while we waited for the pain team to come and make more adjustments. We increased the amount of medication he could get when he pushes the button on his pain pump. When we still were having significant pain we added a second pain pump as well. Early afternoon we noticed him starting to feel a bit better from a pain standpoint and he was finally able to sleep for a few hours. However, he was still struggling to move without intense pain and his heart rate going into the 160 range. So we doubled the amount of med he gets through the second pain pump.

  So besides the improved pain control we also started to see a small amount of output from his ostomy which is great. All was looking up...

However, his blood counts have dropped by over 3 points and he just spiked a fever of 102. I am unsure of the plan right now as the doctors are being contacted. Please pray for answers and an easy resolution. I desperately need some sleep. I hope that things settle down so I can rest some tonight.

Ali

Surgery

What a long day...First let me apologize for the long delay in updates. Alex and I got to the hospital at 6:45 this morning. We were really happy to learn that our most trusted anesthesiologist was assigned to us. That meant I could breathe a sigh of relief and know that Alex was in the very best hands. Surgery started at 9:00. Everything went well as far as surgery. They removed Alex’s colon and were able to leave his existing ileostomy with only a minor revision. His surgeon came out to speak to me about 1:00. He ran into some adhesions and scar tissue, but overall all went well. Alex and i got up to our room around 2:30. We were not able to go to the floor that we have spent the most time on, but we have had some excellent nurses. Our biggest obstacle right now is we are having a really hard time controlling his pain. We have had multiple calls to the pain team and made some adjustments, but his pain has been in the 8-9 range all afternoon and evening. We are still working to try and come up with a better solution.
There are so many people I could thank, but since I am trying to make this quick...a special thanks to Sonny for keeping me company for over an hour and helping me get all of my stuff to my room and for a venti coffee which was much needed! To my friend, Amanda for keeping Maddy this morning and letting her swim so she wouldn’t be sad and worried. And to our sweet church friends who delivered multiple posters so I could make Alex’s room special for him.

Thank you to everyone who prayed today. Prayers for some pain relief and sleep tonight would be great.

Ali