The Fam!

Hey guys! It's been a while since the last time we have posted, so i thought i owed an update. Memphis has been doing well these days. He has been gaining weight every time that we go to the doctor. He is right on path of where he should be, perhaps even a little better than we expected. They have modified some of his feedings, and taken away part of the micro lipids. This is great for him. The more natural his feedings become, hopefully the less reflux he will have. Speaking of reflux, that is or major problem as of now. He is still having reflux issues everyday. Most of them aren't severe, but every once in a while they seem to be severe. Mostly he only brings up one or two cc, but on the rare occasion he will bring up enough to choke himself, or make a mess. The oral feedings are still going slowly, but i feel like he is getting better. We have a feeding clinic to go to on Monday. We shall see how that goes. We are dreading the changes they may want to make, but he needs to eat by mouth. Oh the changes. Physically he seems to be advancing. He is able to turn himself over to his belly now, and he isn't hating that as much here recently. Even sometimes preferring it while his asleep. The only issue with that is his ability to flip himself back on his back. He scoots around the floor on his back now. It's great! Grabbing for toys is no issue now. He picks them up just fine, and they go straight o the mouth. He also isn't choking himself with his toys and fingers as much. So much improvement. The rest of the family is doing well. Braden is being crazy as usual. Being a little boy. Rowan is doing well in swim, and school. She brought in a straight A progress report! Not much news other than this though. We will do our best to keep it updated.

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.

In this picture, you may notice the one sock look. Why does this poor child only have on one sock? Well, mom puts on two socks every morning and Memphis immediately pulls off one sock. There is no preference to which foot is sock-less just as long as one is. He says that's how he rolls ;-). Silly little man.

Good News today, Memphis' helmet is working! The Orthopedic Dr. said that the 15 millimeter difference between his left and right sides of his head is now a 12 millimeter difference. This is still a severe malformation, but a step in the right direction. Mom told him that if he stopped taking his helmet off during nap time and sleep time the results would have been greater :-). He has decided that wearing his helmet about 10hrs a day instead of 23hrs is much better.

Memphis is getting great props for all of his hard work from his OT therapist. Mom and Dad can't see that much progress has been made but we see him everyday. The therapist who sees him once a week said that she noticed a big difference from this week and last week. She said "I honestly didn't expect him to have come so far so quick". He is still not eating but IS now accepting toys, spoons, and other various objects to his mouth. He is even accepting a little bit of rice cereal. This is a big feat.

Ohhh tummy time, what are we to do about that?????? Still working on this will little success. Memphis is also working hard to learn how to sit up on his own and roll over.

Is reflux still a problem?? YES everyday multiple times a day. Poor little guy. His doctor has said "we are out of bullets" meaning they have no other medicines to give to try and fix/help the reflux. They are now sending him to a GI doctor. Memphis will see that doctor in March. Maybe they can figure out something?

6 Months Old on the 19th

It's been a while since the last post, we are sorry that we have not been keeping up with the blog like we should. Wow running after three kids will keep you busy!

Everybody is doing great! the kids are giving mom and dad a run for their money and all is finally as it should be in the Tipton home.

Memphis sees his Physical Therapist once a month and has seen her twice now. She is very impressed with his improvement. According to her first "physical" assessment a month ago, Memphis was in the 10th percentile of his peers. This means he was on the charts; just below average -- which was to be expected given everything he has been through. Each month the PT comes out to work with Memphis and teach mom and dad different methods to help Memphis progress in things such as rolling over, tummy time, sitting up, putting pressure in feet, etc...
Memphis is now putting his feet to his mouth, rolling over to his side, and using his feet to push himself around the floor. Yay little Man!

Memphis see his Occupational Therapist every week. The OT works on everything oral that Memphis needs to be doing. Memphis still has absolutely no interest in sucking or having anything put in his mouth for that matter. He is still getting all nutrition from the g-tube. Mom and Dad are of course learning all we can from the OT and practicing with Memphis daily. We started trying taste with rice cereal and baby food this week hoping he would like this since there isn't any sucking involved. Memphis of course continued to resist any foreign object coming near his mouth. He also said Bananas are the worst tasting things ever!

Memphis is still doing great with no oxygen. He has a bit of a cold right now along with everybody else in the household :-(. So, mom and dad are dragging as we try to fight colds and chase kids. The kids of course are still crazy and on full throttle but now with snotty noses :-).

We still worry every day about our little man and what his future holds but we are doing all we can and taking one day at a time.

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