I am so glad I took matters into my own hands and made the 4:30 appt. with hematology. Firstly, I wanted to thank you so much Joanne b/c I could not have gone without you. With Avery being so junky these days you cannot travel alone anymore b/c he constantly needs suctioning. It would be unsafe for me to travel myself with him b/c I never know what his sats are going to be so thanks Joanne for all you do for us we love you.
Now backing up to the day before, I had drawn labs on Avery to check his blood counts and Igg levels (which tells us how his immune system is). Well we needed an order from immunology to process the labs. Guess what??? They never sent them (no big surprise there). Honestly, I dropped off the labs and they still ran them, I'm thinking that they went off the previous dr. from last wk. Who knows, as long as they were done. Just goes to show you what slackers that department is. Anyway, the results came in just minutes before leaving for the appt. His platelets were the same (low 112) but more concerning was his Igg (532) and the range is 590-1700. In order for Avery to fight infections he really should be at least 700-800 which previously he was at 900. This is why he was out of the hospital so much last yr b/c he was hanging around 900. So now I am worried b/c I still have lower platelets but it sounded like Avery really needs the IVIG and a higher does. Eeek....
I was impressed that the hematologist was well prepared for us will with all his graphs on Avery's blood counts. He actually heard me out and agreed with my concerns. Finally... It quickly put my mind at ease. While he was unsure why Avery's counts are lower with IVIG he feels it is still ok. He actually has kids walking around with counts of 23-10 and they are ok (wow). Although I did express my concerns about how quickly he dropped the last time and it put him in DIC. He still did not know why that happened and all the circumstances around it but felt Avery would be better served continuing the infusions. The crazy thing is they give IVIG to pts. with low platelets to increase them and yet Avery is doing the opposite. He was pretty stumped on that one. But we know Avery, never the norm. So I felt soooo much better and it was well worth sitting in 5pm Boston traffic. I just needed someone to hear my concerns and give an honest opinion and I am good to go. I will be giving him the infusion every 7 days and not looking at bloodwork anymore. He really needs the immunities especially with how junky he is lately. His risk of infection is so high right now and I would to do everything I can to keep him healthy.
Also the pulmonologist and NP stopped by yesterday. I had a real open talk with them about a trach for Avery and the pros and cons. Still no real decision will be made yet b/c it is so complicated. They did express that if Avery only had his respiratory issues then it would be much easier to trach him. Where he has so many other issues going on that would be just helping one system. Also it will only makes some things easier but will not prevent him from getting the pneumonias. We are very aggressive at home with his respiratory stuff and as a whole do not feel that the trach would greatly improved what we are doing. So the jury is still out on that one. But it was great b/c if Avery does get sick at home the team will be able to prescribe home antibiotics and adjust bipap settings. So hopefully it is another step to keeping him at home more.
Isaiah though is having ANOTHER migrane. Poor kid is starting up every friday and lasting until Sund. or Mond. I feel so bad for him and just wish we could fix this one thing for him.
I am definetly overwhelmed medically but feel at peace with things now. Hopefully things are quiet for a bit.
Our little friend Eithene fromthebanksofjordan.blogspot.com really needs your prayers right now. Please visit her site and send some prayers to her. Thanks
No comments:
Post a Comment