Medical Update: Day 64

There's good news on the Maisie front!

She is responding very well to a combination of low-dose prednisone and another drug called Acetylcholine. She is also doing plasmapheresis and IVIg (intravenous immunoglobulin.) This combination of medication and therapy seems to be working well. Unfortunately, she will have to have a Broviac line and an implanted port placed.

Once we leave the hospital, we will return for IVIg once every three weeks. This will go through the port. She will have plasmapheresis (a procedure similar to hemodialysis in which her blood plasma will have antibodies filtered out) once a week through the Broviac.

Right now she has a PICC line and a regular IV. Hopefully the surgery for the Broviac and the port will happen this week.

She will also FINALLY be having her thyroid gland taken out on Thursday. Whoopee!!

I know it seems odd to be so excited about your child having surgery, but this is something that I have been pushing for since July. Every other person with myasthenia has described dramatic improvements after their thymectomy. Obviously everyone is different and it might do nothing for Maisie, but it has always seemed crazy that we didn't try.

My hope is the thymectomy, the Broviac, and the port will all happen on Thursday. It will mean a four or five hour long procedure, but I want it all done at once.

The really great news is that -- drumroll, please -- it seems we might finally be going home soon!!

I completed all of my trach training. Check!

We've found a good combination of drugs for Maisie. Check!

Maisie is feeling and doing FANTASTIC. She has more energy than I've seen in a long time. Speech, physical, and occupational therapy are going extremely well. Check!

I am working with a social worker to get insurance and home nursing care sorted out. While Maisie has the trach she will have 24-hour nursing for the first week we're home, and then 8-hour night nursing as long as the trach is here.

The ENT gave us a tentative home date of March 1st. That gives us two weeks to get everything sorted out.

That means getting

1. Home nursing care
2. Insurance to get with the program
3. An arrangement with a supplier for all of Maisie's new vent and trach supplies, which include
               - a stationary vent
               - a portable vent
               - a suction machine
               - an apnea monitor
               - a pulse-ox machine
               - emergency oxygen tanks & nasal cannula
               - all the bells and whistles that go along with the trach (trach ties, all the different parts of
                 the trach tubing itself, and a billion other little things.)
4. Permanent IVIg and plasmapheresis appointments
5. Broviac surgery
6. Thymectomy
7. Port implantation

There's SO MUCH to worry about and SO MUCH to organize, but honestly, it's all worth it to have Maisie home again.

I'm a little bit overwhelmed and a little bit SUPER EXCITED.