There has not been a lot of amazing things going on to talk about on the blog. And we have not wanted to jinx any of Maddy's progress so I have been staying away from blogging. However we are beginning to see a little light at the end of the tunnel. Maddy had her bronchoscopie today and everything looked great. We are just waiting to see if they are going to do the Nissen surgery before she goes home and then we should be ready to go. Things have been a little confusing regarding her need for that surgery so it has been a little frustrating to say the least. We are hoping to have a final answer on Monday.
They are still treating her for the viral meningitis. She has four more days of IV antiviral meds left on that course of treatment so that lines up with a possible release date early next week as well. The headache has been gone for the most part since late Tuesday. It still flares up a little but I think the Gabapenten has finally done it's job. Other than that Maddy has been having a good recovery. She has had a few days where she feels like there is never going to be an end to all this but she usually gets through that pretty quick.
They are spending today and tomorrow teaching Maddy all the new things she needs to learn to take care of her self when she goes home. She will be on insulin for s while after she gets out so she is learning how to give herself the shots. She will be tracking and writing down all her vital statistics every day for about a year. She will be doing her own spirometry at home, checking blood pressure, temp, blood sugar, weight and more. These numbers will help her detect early signs of infection or rejection. The earlier it's detected and treated the less likely she will have to be hospitalized. She will have to wear the anti embolism hose for two more months after she gets out. She will also have to wear a mask when she goes out in public for the next 6 to 8 months. We have already started working on ideas for different respirator masks that she can use when so goes out I'm public. That part is going to be kind of fun.
This weekend she will begin filling in her daily log so she can get use to it and show Dr. Rolf on Monday that she is ready for home. Then we wait to see if he wants the Nissen first or come back for it later. Oh yeah, the Nissen procedure is to keep Maddy from refluxing stomach acid or other stomach contents into her new lungs. Because there is no feeling in the new lungs it is easy to reflux into them without the patient even knowing and then they get an infection and don't know why.
Maddy is getting stronger every day. She walks around her room without any help or problems. She goes for multiple walks around the floor every day. We even wheel her downstairs and outside to walk along the river by the hospital. They say lots of food and exercise will be key to her quick recovery.
I think that's about it for now.
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