Four Weeks Later Day 28

Four weeks ago, Ian had his transplant. December 17th will be his liver day and we will celebrate it each year with a cake, doing something special, and giving back to transplants/CHOA in some way. We are so grateful!

Today we had labs in the morning. Ian did well getting "triaged" (which is being weighed, blood pressure, and other vitals taken). Then the nurses asked me when Ian's PICC line dressing had last been changed and I told them that it hadn't. Here is where the trouble ensued.....it needed to be changed weekly to avoid infection and his had been on for two weeks already. EEEK! For those following the blog, you will know that the tape removal process for Ian has not been pleasant. This was particularly bad because 1) I was solo and 2) I had not prepared Ian for this at all not knowing myself htat it would happen. What to do...what could I do but help hold my squirming, screaming, crying, hysterical son and try to calm him and talk to him and help him not focus on this big huge band-aid that was coming off his arm. The nurse was awesome and she did use a uni-solve pad but it was still trauma. He made it through it though. I dread next Wednesday already though.

Clinic was good and super short--always a plus. He was seen by Dr. Pillan, Dr. Romero, Dr. Mee, and Miss Jill (whom he thinks gave him his new liver). He hasn't and won't at this point--need IV fluid as he is taking enough in orally. I keep buying pedilyte and other liquids to keep pushing on his. Transplant kids need extra amounts of fluids and they are definitely being pushed on Ian. His labs are wonderful and his prograf level has not changed at all for almost a week. That is good as it needs to remain under control for us to get the green light to go home evenutally. I am hopeful that we will be able to go home at the end of january but am prepared for longer if needed.

His current lab schedule is on a M-W-F shedule for labs (about 8am each of those days--in his PJs). Based on this Friday's labs, we may or may not get switched to a T/Th schedule next week. After the two day a week schedule it is down to once a week....which then we would start thinking about removal of his PICC line. All the docs from clinic today think he is doing well and that his color is great.

When we get home we may or may not be set up with home health care in terms of future labs and flushing his line--I am flushing and doing the hep lock on it now twice a day. He is improving with his medicine taking with tonight being the BEST ever! He has lost almost all the steri-strips on his incisions now. I have been finding them at random places at our suite at the RMH. Brett will be coming this weekend and staying until Monday afternoon (it is MLK holiday for his work). Having mom has been a huge blessing and help--thank you Grandma (and Grandpa for sharing her!!!)

We plan to go to Brusters ice cream parlor tomorrow for a banana split as a little treat! Should be a nice day tomorrow after today's morning lab experience.