What a crazy week we have been on. I guess I should start with the first part of our wild week. Last Tuesday we got her genetic test back. Which if you find yourself in this same boat, I advise to not open that report until AFTER the Dr. calls you. I did not listen to that rule and for 24hours I freaked out. Seriously, I should had waited. The following day the Dr. called and went over the results and yes, its not exactly what we wanted to here but it was far more better than what the paper was indicating.
Basically, the lab is wanting her dad and I to submit our DNA so they can put an accurate diagnosis on Jo. As it stands, the results either a hereditary gene that she received from one of us OR this was a spontaneous event that occurred as she was forming in the womb. Which they call Milroy Disease. They strongly feel that me and her dad are not a carrier of this hereditary gene because we do not have lymphedema nor does anyone in our family line have it. Typically this gene does not skip generations so if we were carriers, SOMEONE would have it from each generation. This leads them to believe that this is in fact Milroy Disease. In order to get that 100% diagnosis they need to confirm our DNA. The good thing about this, there is no associated health risk with this particular gene disorder. (I found myself fascinated with how this can happen and learned a lot about gene mutation and disorders. Soon, I will write about just the genetic test and her results.)
So, it makes it great news. Just sad, that now she has this gene, her family line will be effected. That to me is heart breaking. In the mean time we wait for new results to come back so we can see exactly where this leads us.
Thursday evening, Jo was not her usual self, she had no appetite nor did she have her usual energy. She started running fever and complaining of a sore throat. The following morning her temp was higher and she was just not well, so we took off to the Dr. after a covid, flu and strep test, all came back negative but her tonsils were swollen and infected and they said tonsillitis. They prescribed her antibiotics as a percaution and sent us on our way. Poor thing was so tired, fever and just exhausted. We were scheduled to leave for Dallas Sunday morning to make the Lymphedema walk and therapy for the week. Drs were certain that she would be ready to go by Sunday.
Saturday came and gone, she was still not better. That night her temp jumped to 103.2 we gave her Motrin and within 15 min. her fever was breaking. We gave her night dose of antibiotics and decided to make the decision on our trip in the morning. Around 4am Sunday morning, I woke up and checked her temp. Still running a fever but this time it was low grade, as I adjusted her blankets I noticed a red splotchy type of rash on her leg. So I inspected her further and she was covered in it, head to toe. Even her earlobes and the palm of her hands. The lights were bothering her, she started throwing up and she just kept repeating, "I am exhausted mommy, I just want to sleep." Obviously, something was wrong. I thought for a minute to think about what this could be and I honestly felt that maybe her strep test was wrong and she did have strep and this was the scarlet fever that strep sometimes produce. Instead of waiting, I scoped her up and we headed to the hospital. Upon arrival the nurse was thinking similar to me. Strep, but after the Dr came in and examined her and looked in her throat he said, there is no way this is strep, she is having an allergic reaction to the antibiotics. Her throat was swollen but it was not presenting like strep nor tonsillitis, even though he believes she did have that as her tonsils were irritated. They gave her prednisone and we waited roughly 5 min. and she perked right up. He looked in her throat and the swelling was going down. He looked at me and said, "had you given her another dose, this would had been a different kind of ER visit. Be thankful for that momma gut." When I say my heart dropped, it was something I had not felt in a long time. The realization of how serious this was and how serious it could had been. I was thankful for that momma gut feeling. As moms, when our babies are sick we struggle on when to act. We don't want to under react but also don't want to overreact. I did that Saturday night when her fever spiked. The only reason I decided to wait was because her fever broke quickly. Thankfully when 4am rolled around something woke me and told me to check on her. That new symptom was my cue to react. Had I ignored it and decided to wait until actual morning to have her seen, I would had given her another dose before going to Drs. that I do know. So yes, when you are struggling with acting and/or waiting... normally there is going to be a huge clue that will toss you out of the debate argument with yourself. You will do nothing but react.
After she was improving they let us go. He gave us two more doses of prednisone to give over the next two days and told me as far as her fever, it just needs to run its course. As we were headed home, I was so thankful but also completely heart broken that our Dallas trip would be canceled. Jo was looking forward to the lymphedema walk where she was going to meet another child with lymphedema. The walk also organized sponsors to help with Jos compression stockings and all the fittings were to take place this week as well. The more I thought about it, I started thinking that maybe this was a way of God keeping us from traveling. Of course I will never know if there would had been danger for us. Sometimes, that's how he works. He throws road blocks to keep you where you are at to prevent harm. That is what I choose to believe. Everything has been rescheduled and me and the mom have made plans for the girls to get together once we do make the trip. Maybe we missed the walk, but I am sure there will be another one.
(after 2nd dose of steroids.)
This morning, Jo woke up fever free for the first time since Thursday and her rash is completely gone. Things look like they are on the healing mend and normal routines can be put back in place. We have not massaged since Wednesday. When there is fever, all massaging must stop. Honestly, I really expected her swelling to be out of control going this long, but it's not as bad as what I was expecting. Don't get me wrong, it is bad but it could be so much worse. Thinking of that, None of this has been bad. It all could be so much worse.
So, instead of saying it's been a bad week. I will say, It has been a Wild Kind of Week.