A long week for Naaman

Last Saturday on March 20 everything was slowly moving along towards what looked like us going home soon. Then on Sunday night after an CT scan revealed two clots in Naaman’s liver and intestines, everything changed. 

Blood clots

Naaman was moved to the ICU to immediately on Sunday the 21st to begin treatment with Heparin to thin his blood and  begin to break up the clots. This became a delicate balance because of his low platelet count, needing him to be monitored closely before being transitioned back to his hemoc unit room (which the staff awesomely held for us). This balance was finally achieved on Wednesday  afternoon. We got our cozy room back again! The plan is to continue to receive Heparin and be monitored closely until his platelets recover. Then we will transition from Heparin to injections that he must receive 2 times a day for a minimum of 3 months. More things to do at home.  Little to our knowledge, clots take a long time to break up completely. 

Brain MRI

Naaman received a brain MRI last week initially to look at spots in his eyes that were seen by the Ophthalmology team and thought to be Leukemic.  While the eye spots upon an analysis revealed that they were not Leukemic (to our joy), we got a scare when the doctors informed us that Naaman had spots in his brain. While the information is not conclusive, at this time the doctors have ruled out Leukemia and think they are micro clots that may have formed from a previous infection. While they are closely monitoring them, the hope is that the current regimen treating the 2 new blood clots will also clear these micro clots as well. 

Feeding

Unfortunately Naaman just hasn’t been eating enough to sustain himself. We aren’t sure why and he won’t verbalize it but it is probably due to a number of factors that affect his appetite.  Over the last week he has need an IV based supplement called TPN which is just a mix of nutrients in a custom formula that is given over 12 hours. Unfortunately TPN is also damaging to your liver over time (and Naaman has a history of liver problems) so it was not sustainable, not to mention it’s not an easy at home solution.  We put it off as long as we could but on Thursday Naaman had an NG feeding tube put in once again. It is temporary to allow him to get the food he needs to heal his body and when he begins to eat again in a sufficient manner it can come out.  So far he is tolerating it but having some issues with vomiting that we hope goes away over time. We are going to miss our little guy’s cute face but we understand that him getting the nutrition he needs is more important. 

What’s next?

We need to meet some criteria to go home. We need Naaman’s ANC count to rise, be fever free for 2 days and maintain a certain platelet count. Those are the three challenges that face us to go home. While we are very eager to go home after nearly 7 weeks, we do want Naaman to also be in the safest state possible so we don’t have to make a repeat visit. We also have some possible new treatment options available longer term for Naaman and we will mention this more as we learn more. 

Please keep Naaman in your thoughts as we face this (hopefully) last set of challenges this time. We thank you all who are  supporters of Team Naaman for your continued love!