Day +13 Speed Bumps and Potholes!

Yesterday SAMs ANC almost tripled to .69 and we were thrilled to see this. Today it dropped a bit to .55 but the docs said a little bouncing around this week is expected but they hope that by next week we will get to 1.0 ANC and consistently trend above that! Typically white blood cells rebound first, then red blood, and finally platelets. If/ when we return home in a few weeks she will most likely need transfusions for several months more. So she will keep at least one of her picc lines in addition to her peg tube and we will again return to clinic for blood draws, transfusions, and nutrition monitoring at first 3 x per week. As things get more stable, hopefully that will decline to weekly, bi weekly and then monthly! I can only imagine how we will hold our breathe at each visit until we receive reassuring results that things are still looking good!

Yesterday also proved to be one if those days that I'm unfortunately reminded that although I think our docs and care have been great overall, a teaching hospital system with so many rotating residents, fellows, attendings on night vs. day shift... Information can get lost in the shuffle and miscommunication can happen. At 5 am, SAMs g tube balloon burst in her stomach and it again came out. The on call attending for interventional radiology did not provide specific enough instructions to the next attending or the nurses on this floor about what to do. It resulted in hours later nurses trying to insert a "placeholder" catheter in SAMs g tube site but it had already started closing and so she was bleeding and screaming/ shaking in pain. The nurses did not feel comfortable continuing with this and neither did we!

The transplant team were strong advocates  for us and we eventually got a spot downstairs to have it surgically replaced yet again. After the procedure, we inquired with the surgeon directly about how to avoid this sort of miscommunication in the future. He was extremely rude and insensitive in his response. Given Sam is going to have this g tube for the foreseeable future and this is also the dept that handles placing and removing picc lines we were torn as to what to do, but in the end decided to call the patient relations review number to share what had happened and have them help tease out what can be put in place to better serve patients in the future. We stressed we are not looking for a punitive process (although I hope I never see that specific surgeon again) but that we really do want to have a better system in place as SAMs care requires accurate and prompt communication and team care amongst several departments. The woman whom I spoke with was very empathetic and understanding and is supposed to follow up today. We will have to wait and see if this approach truly proves beneficial. There have been other times though we have had issues with on- call docs giving inaccurate information to us as well as covering weekend docs not having the full picture etc. so we hope moving forward we will at least get some feedback as to how to ensure her continuous care is more seamless.

Support from friends, family, and kaedens classroom community has been so touching and helpful as always but a few highlights: meals organized by kaedens classroom "room moms" continue to be delicious and much appreciated (pasta, calzones, Mediterranean food/ kebabs, soups, cookies etc)! I have been joking with Brandon that Kaeden's going to refuse my cooking once I'm home again and he is then subjected to mommy's "b list fare" again:) Also family in town helping to do a million things around the house has been awesome as well as Easter basket deliveries and toys etc.! Here is a cute picture of Sam "reading" the get well card made for kaeden and Sam by his whole class!

 

 

We can't thank everyone enough for all of this during our long journey of hardship and challenge! Keep us posted!