Roller Coaster Ride

It has been a cray cray couple of days around these parts!!! Let me fill you in...

So Monday I got a call from Noah's pediatrician's nurse saying that Dr.Cheng had written a letter for our insurance saying not to cut our nursing hours. I was so excited! Then a few hours later, Dr. Cheng called me (this is why I love him because he calls me himself all the time which is awesome for a doctor to do) and said that he had just gotten off the phone with the doctor from the insurance company and they will not be cutting our hours!!! I am so grateful to Dr. Cheng for always helping us out with referrals, insurance stuff, anything that we need to make sure Noah gets the best care and equipment. He is awesome and I hope we never have to find another doctor.

Also on Monday, I got a call from Noah's neurologists office saying that they just got the authorization back from the insurance for his genetic testing and we owe... $0!!! What a blessing! I thought it would be at least a couple hundred dollars out-of-pocket. I told the nurse we would be there the next day to get the lab orders and get his blood taken

Tuesday rolls around and Nathan called in sick to work. He had been fighting a major cold over the weekend (sorry for thinking it was just allergies, babe) and he really needed a day off to rest. He comes in the room and tell me that Noah is getting sick. WHAT??!! He had a fever of 99.6. Then a few minutes later he comes in and says that Noah needed to be put on oxygen. Great. It was a little too early to call the trach clinic nurse so we started getting things ready to pack up and head o the hospital. At 8 I called and left a voice mail for the trach nurse but we decided to just go ahead and start on our way to the hospital.

We got to the ER and Noah's temperature was 101.1 so they gave him some Motrin and ordered a few tests and a chest x-ray. X-ray looked fine, which is good news because pneumonia is a leading cause of death for PMD kids, and tests for flu, RSV, and a few others things all came back negative. The ER doctor basically wanted to write us a prescription for a random antibiotic and kick us out the door. After talking with Noah's nurse and Nathan we decided the best thing for Noah would be to stay overnight for observation. The night time would tell us if he was going to be okay to manage at home or if he was getting sicker and would need more interventions. I didn't want to leave the hospital and end up right back there a few days later with an even sicker baby. At what point will he be considered "sick enough" that they will want to help us?

They admitted him and we waited around forever to be taken up to the room. The admitting doctor came and saw us and she was so nice. She made me feel like I had a valid reason for wanting to stay and didn't make me feel stupid for making suggestions or asking questions like the ER doctor did. Anyway, we finally got up to the room and got everything settled. The team of admitting doctors all came in and, once again, were so nice and made me feel even better about my decision to have Noah observed overnight. Once Noah was settled and finally sleeping the nurse said, "Now what about you, Mom? Have you eaten today?" I told her no, I actually hadn't eaten since before we left the house at 9am and it was now almost 3pm. She told me she would be close to the room doing her charting and would keep an eye on Noah while I ran down to the cafeteria. We started to get settled in for the night and right when it got to my bed time, Noah decided to wake up from his nap. He did pretty well over night and actually slept most of the time when people weren't coming in to bug us.

In the morning the doctors came in to do rounds and they were very nice, again. I told them I felt comfortable taking him home even though he still needed a little bit of oxygen. One of the doctors said, "We are on the fine line between encouraging you to go home and be comfortable but at the same time, we don't want you to feel abandoned when you have a child in a complex care situation." That was like music to my ears. As a mother, you always worry about the decisions you make for your children. It becomes even more stressful when you are making choices everyday about their health and safety. His comment made me feel like they genuinely cared about us and our needs instead of just trying to get the quickest turn over and get us out the door. I told the doctors that I had already called our nursing agency and our nurse was going to meet us at home and we also had night time coverage so we would be taken care of. And... before we left, Noah  got his blood drawn for the genetic test. Yay!

Noah has been doing really well since we came home on Wednesday. He's been off oxygen during the day and only on a very little bit during the night. He is still super duper fussy and started up with another  fever this afternoon. His top two teeth are also super close to popping through so needless to say he has not been a very happy camper these past few days. Hopefully we are near the end of this little virus and he will be back to his regular, smiling self in no time. Also hoping his results come back quickly!