Ami update

I'm sure everyone has heard by now but Ami did very well with his lung biopsy. They took a thumb nail sized piece out of his lower right lung. He has about an inch incision, and it looks like it is healing well. The smears and tests that they ran on the biopsy and the lavage so far hasn't grown anything. We will get final results around June 5th or 6th. The pulmonologist, Dr. Rivera, didn't think that it was a severe form of ILD since nothing was growing and it didn't look like a specific type. She said that it looked like a lot of inflammation so she put him on a 10 day round of oral steroid called prednisolone. At first the steroid made him shaky but he seems to be handling it well. His incision doesn't seem to bother him either. He was only on pain meds the day of the surgery and half of the following day. We got some advice on ways to increase his calories so hopefully he can gain some weight. He is eating a lot more then he did before the surgery. We have to go back to St. Louis the beginning of July for a lung function test. He will have to be  put under just to ease the stress of the procedure. Ami did get approved for Medicaid so that will help greatly from here on out with medical expenses. Children's Hospital in St. Louis was a wonderful place. All of the nurses and doctors were great. The facility was nice, very child orientated. People were very helpful and nice. My only complaint is there you most likely will have a roommate, unless you are under quarantine, and discharge took a lot longer then it needed to. I hope this will be our last hospital stay for a while, and all of the testing is over.  

Biopsy

Ami had his lung biopsy this morning at 7:30. He was done and in recovery by 9:30. They took a thumb nail sized piece out of his right lung. He recovered well and was able to breathe on his own. He does not have a chest tub as of now. He seems to be in moderate pain. Morphine was not so good to him but the Oxycontin seems to be working well. It keeps him in a state of rest/sleep pretty well. We hope to have some preliminary results from the biopsy in the morning. The rest of the results will take a little longer, a week or two. Once again we are in a waiting game. The surgeon said that that his lung did not seem to have scare tissue on it but it did look diseased. There was no fluids, mucus, or puss in his lungs when they did the lavage. We will have another chest x-ray in the morning to make sure his lung still looks good. The floor doctor mentioned possibly going home tomorrow but we don't know what the pulmonologist has in mind. All of the staff has been great. We were in a room with a 7 year old. That was bad, he was loud, the nurses came in often to check on him, we were on the small side of the room. He got to go home this afternoon so as of right now we have the whole room to ourselves. We have been moved to the bigger side of the room so we both can stay in the room. There is less storage space but more room for everyone to stand around, plus now we don't have to wait in line to use the bathroom. The way it works here is if there is a potty trained child you can not use the bathroom. You have to go to the "parent lounge" where there are 3 bathrooms, full bathrooms, and wait for one to open. Everyone is tired and ready to go home. We wish we were here for fun things, like the zoo, magic house, and of course baseball. We are all doing well.

Mother's Day

Yesterday was a wonderful day! Like everyday here lately I got to spend it with my most favorite little man. We didn't do anything special just a nice day at home. We did have a bath time photo shoot and the pictures were great like always. I would have to say being a mommy is way better then I thought it was going to be. My mom always said kids break your heart. She was right, but she forgot to mention that it is worth every minute of it. One toothy, slobbery smile can make everything wonderful. I have been lucky enough to be able to stay home with him for the past few weeks. I am going tomorrow to see if we can get some help from Uncle Sam and maybe, hopefully, it can stay that way.
I can't believe he is going to be one in just 3 months. I think he is teething again. Very slobbery, and cranky. Other then that he is doing great. We still haven't heard anything back on his test results, we see his pulmonologist next Tuesday and his pediatrician next Friday. He is gaining weight, he now weighs 15lbs 4oz. He still isn't crawling but he is interested in moving. He has also started separation anxiety. It's about as fun as teething. He is super smart and picks up on things quickly. He learned to clap the first time we showed him how.

I will update more after we get tests in and we go to the doctors. Enjoy the wonderful weather!