Home Again!

So as you all know, we were hospitalized a few weeks ago. We went up to Children's Hospital on a Wednesday and after MANY tests, an IV, no food, and two very stressed out parents later they finally released us on Friday afternoon. Mom and Dad pushed very hard for us to go home as soon as possible. They placed us on the Pulmonary Distress floor. On this floor there was a case of RSV, Flu A, and Metapheumonia; these were just the three we knew of. We were in the war zone for Memphis. We were sent home on oxygen and told that Memphis probably had some sort of cold and he just needed a boost of oxygen to get through it. The doctor said that a typical person will get a cold and it lasts anywhere from seven to ten days. With Memphis and his fragile lungs it could take up to a month or longer for him to fight off a cold. It is now two weeks later and Memphis is still on oxygen but doing much better.

Memphis saw his GI doctor for the first time yesterday. He was very impressed with our little man, he said his growth looks great. He did change a few medicines around as we are still tweaking to help with the reflux. The doctor is pushing for us to get into a feeding clinic -- which we have been trying to do for weeks now with very little success. There are so many hoops that have to be jumped through thanks to insurance before things can get done. Because our family Dr. is not a Medicaid provider we now have to find another pediatrician that is a medicaid provider in order to get a EPSDT screening which is basically a WELL-Child checkup before we can get an appointment to the feeding clinic. Geesh...

Speaking of feeding, Mom got Memphis to take almost 2 teaspoons of Oatmeal yesterday!! Of course it took 30mins to get everything down and yes some was on his face, chin, and basically all over but a feat just the same.

Memphis has his Orthopedic (Helmet) appointment tomorrow morning. At this appointment, the Dr. will do another head scan much like he did in the beginning to see how much change has occurred. We are of course hoping for a big change and not much longer with a helmet.

Once again, sorry our posts are not as often as they should be.... We are always saying we need to post and then things come up and we get sidetracked :-(

Our trip back to children's

On Wednesday of this week Memphis had an interesting doctor visit. Over the past couple of weeks his saturation monitor stat has been low, meaning that his blood oxygen saturation is low. We have only been hooking him up to the monitor at night, but his normal rate of 98 to 100 had been replaced by a normal of 90 to 93. 90 is typically as low as they want them to go. On Monday night, Memphis had a regular reflux during the night, but it took him extra long to recover from it. Rather than it being a 30 second ordeal, it turned into a 10 minute struggle for him to recover his breath and calm down. During this fight, his voice and cry seemed to change. It went from his normal cute little cry, to a very hoarse cry. After another day of hoarseness, we decided to take him in to see the doctor.

Previously, at our prior doctors appointment, I had mentioned to the doctor that our saturation monitor had been going off alot during the night while he slept (reaching numbers below 90) pretty regularly. He seemed to just blow it off as equipment failure, since we technically aren't supposed to have the monitor anyway. But this de-sat that he was experiencing continued and continued to get worse. Reaching numbers below 80 at some times. We really felt that it was the monitor like the doctor said. In this appointment Memphis had a saturation of 100 percent on room air, which also confused the issue. This time on Wednesday when we took him to see the doctor, his saturation level was 87 percent. This concerned the doctor, as it should have. After the doctor consulted with the hospital, they both decided that he needed to be admitted.

Memphis was placed on the fifth floor, in the respiratory distress area. Our doctor in Huntsville had told the doctors here that he felt that he had aspirated on some reflux, and now had aspiration pneumonia. Coming in the hospital, that's what everyone thought it was. Our nurse in the beginning after listening to him wasn't convinced. They put him on oxygen which immediately fixed his low saturation, and then they started planning the tests. They first gave him a chest X-ray, which resulted in an all clear for pneumonia. At this point the surgeon discontinued his feeding for the night, so that they could perform an upper gi on him in the morning. They placed him on fluids, and let us ride out the night. In the morning after the upper gi was completed, at around ten, they informed us that his fundoplication was still integrous. This was great news, being that if it wasn't still wrapped then they would have to do surgery to fix it. So now we are at the point that there isn't anything specific that is causing his desaturations, they called in pulmonary. The pulmonary doctor came to see us and after a few minutes of talking he left to go discuss it with his supervisor. I spoke to him about the risks of us being in the hospital with Memphis(flu, RSV, and the list goes on), especially with us being here right along with the other children that are suffering from these illnesses, with which he completely agreed. After a while his supervisor came in and said pretty much the same thing I said. He said that he needs to go home on oxygen, but he definitely needs to go home. He stated that a child looking as good as he does doesnt need to be in the hospital where he can get really sick. He said that with his chronic lung disease, any little thing can push him to where he needs oxygen.

So now we wait. Everyone has said that we need to go home; pulmonary and surgery. They have started his feed back up, placed him on a new medicine for reflux. He has one more test that shouldn't take more than a few minutes. Now if we could just get the doctors on the ball to get us out of here it would be great.

On a side note, everyone has commented on how big he is, and how good he looks. He is almost at the fiftieth percentile on the growth curve. Dr. Anderson stated that most all CDH babies don't even place on the curve in the beginning. Hopefully this just shows how strong he is. He is a little fighter, but this time he needed a little help. We are so grateful that this help is available to him.