NO OXYGEN!!!

As of Friday December 20th, the Pulmonary Dr. ceased the use of supplementary oxygen. Memphis has been breathing "room air" for five days and thoroughly enjoying it! It is Amazing! We were told at the hospital that he would probably be on oxygen for 6months to a year. He just turned 5 months on the 19th and the very next day came off oxygen completely. What a wonderful birthday present. He has been super smiley every since the nose cannula came out. We have been told that the company that supplies the Oxygen and its accessories will be coming to pick up everything soon. This of course means the saturation monitor will go also, mom has become quite used to having this and isn't thrilled that it will be leaving. The reasoning behind this is Memphis is still having a lot of reflux and if he were to reflux in the middle of the night and choke we will no longer have a monitor to beep very loud to tell us he isn't breathing.
Here he is watching his movie..

Memphis has his helmet now and of course doesn't like it one bit. We are taking this week to slowly increase the amount of hours spent wearing it until eventually we get to 23hrs a day. Today he will wear it twice for four hours each time. Tomorrow he will wear it for six hours.

Memphis went to his follow up appointment to see the surgeon which went well. The surgeon was impressed with how much weight he has gained since leaving the hospital. He was also impressed with how squirmy and wiggly he was. Memphis wasn't moving around much in the hospital but then again he was stuck in a bed all the time -- where was he too wiggle to? All of his battle wounds looked great and healed perfectly. We brought up our concerns about the continuing reflux and Memphis was given yet another medicine. This medicine is supposed to work by helping things to move through him better thus helping the reflux. We have not yet given this medicine, we will give it this afternoon. We were told to try it for a few weeks and see what happens.

Memphis will see the OT therapist at home for the first time on January 31st. She will work with Memphis on sucking/eating from a bottle mainly as well as a few other things.

An Update

Memphis was seen by Early Intervention yesterday, they came to asses him and see if he did in fact need their services. Infants and toddlers from birth through age 2 are eligible to receive appropriate services if they are delayed by 25 percent or more in their cognitive, physical, communicative, social, emotional or adaptive development, or if they have a diagnosis of a physical and/or medical condition that will likely result in developmental delay. We were told that even without adding up the scores, Memphis will definitely be eligible for this service. He qualifies for many reasons, but the two big reasons are feeding issues and developmental delay. Early Intervention staff will come to our house to work with Memphis as well as train mom and dad in what they need to know to help Memphis achieve his maximum potential.

Memphis saw his kidney doctor this past Tuesday and he still has high blood pressure -- his systolic was 112 and they would like it to be between 80 and 105. So, the doctor upped his blood pressure medicine dose. This was to be expected because as he grows in weight he will out grow his medicine and it no longer is therapeutic. The doctor said this is completely normal and he would have been surprised if Memphis would have been able to get off his medicine. The doctor also said that around 18months of age is when children with kidney trauma tend to out grow the need for blood pressure medicine. It just takes some time for the Kidney's to heal.

Still having some reflux issues, and still actively trying to figure out how to fix it. Mom and Dad think that it may be drainage that he doesn't fully swallow down - that he then gets chocked on and tries to bring up? Maybe it is just as simple as he is now healthier and moving around a lot which gets everything moving and it causes him to re-flux? If that is the case, there is no fix and he just has to out grow it. Poor baby we wish we could make it go away :-(

Memphis will be getting his Helmet on the 20th of January. Hopefully if it does its job, it will correct his deformity by 80%.

Memphis will also be seeing his Pulmonary Doctor and Surgeon on the 23rd of January. We will keep everyone updated as those appointments come. We are hoping to get rid of the apnea monitor!

Thanks for Keeping up with our Little Man it means so much

An interesting few days

The last few days have been crazy. Memphis has been doing well other than the spitting up he has been doing. It really seems like its uncomfortable for him. We are actively trying to fix it but nothing seems to be really working.

We had our first log distance outing yesterday, to hanger orthotics to get Memphis assessed for a helmet or cranial band. The ride down there was great. Memphis and Braden both were great. Memphis even took a nap on the way down. We had a little bit of a wait when we got there, in which Memphis got restless. After getting his head scanned, during which he was a trooper, we found that he has a severe deformity in the symmetry of his head. A difference of 15 millimeters. They got all of the measurements they needed, and are ordering the band this upcoming week. Hopefully this will reform his skull.

The ride back was not the quiet ride like we had going. He fussed and refused to sleep on the way back home.

After we got back home, dad went to the pharmacy to pick up a prescription of reglan, to hopefully help his retching. After giving him a dose of it we found out it wasn't the solution that he needed. He reacted to it negatively, almost what you might call allergically. After dealing with this for an hour or so he finally made it to sleep. He probably had the most restless night of sleep that he has ever had. Needless to say, NO MORE REGLAN. I've got a message into the nurse to see if there is anything else we can give him, but no response yet. Hopefully we can get him some relief soon.

he has been ok this morning. I think he has just been worn out from the day before and little sleep. We hope for good naps, and solid rest today.

We also received his genetic testing results. As many of you know, it was reported to us that Memphis had a chromosomal abnormality, and they wanted to test both parents to see if either of us had the same abnormality. After we both got tested, Michelle is positive for the chromosomal duplication. This proves that the abnormality was NOT the cause of CDH. Since mom is fine with it, then the abnormality is normal, as ironic as that is.