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.

Memphis' First Christmas

Memphis made it home for Christmas!! Things are still going great, Memphis is adjusting well to the lifestyle of the Tipton household. Although I think he thinks his siblings are crazy. He loves them so much though. :-)

On Christmas Eve we had the immediate family over for dinner and gift giving.  Memphis had a great time, he stayed up past his bedtime watching his brother and sister open their gifts and he loved all the attention given by Grandma and MiMi! He got to show his temper a lot earlier that day. It seems that all children just know when holidays come by. His attitude towards life was fine by the time everyone came by.

The days have been getting easier and easier with him, as his routines are getting more set in stone. We love having him home and hope everything just keeps getting better.

Memphis has been doing this reflux thing the past couple of days that is worrying mom and dad, we have sent an email to the nurse explaining what he is doing.  He hasn't thrown up much, just a couple of cc's but he is definitely trying to bring up something.  He does this a few times a day.  We were under the impression that after getting the Fundoplication Memphis would not have reflux problems. Of course, this didn't start till after we left the hospital and had been home a few days.  Is it something we are doing?  We think maybe his feeding pump is not working correctly and giving him more food than what it is saying it is giving.  We will bring this up to the Dr. when we go for our follow up appointment.

The last couple of days have been good. We are still working on a routine with him, and he seems to be taking well to it. He is usually a little off every day, but we stay within a somewhat loose routine. We are still trying to add in a few feedings by bottle every time that he is eating. Yesterday he took almost 10cc! He didn't suck hardly at all, but he took it none the less. Today he has only taken 3cc. There doesn't seem to be any rhyme nor reason to the difference, he just doesn't feel like trying.

Dad went back to work today. The day with mom and Memphis alone went well. It's definitely a handful with all of the monitors, but you do eventually get used to it. The house was much quieter today without dad, but Rowan and Braden make up for it being too quiet when they get home.

We want to send out a big THANK YOU to Memphis' cheering section. He did truly make a wonderfully quick recovery. One of his favorite nurses mentioned that with all of the time that we spent on the ECMO pump and how sick he was in the beginning, he is doing remarkably well. Once again, Thank You!

Now its on to the tedious work of physical therapy and occupational therapy. That is our next  big venture. Wish us luck!

We will keep you updated.

Another day

The days at home are still going well! We had our first outing to the pediatricians office today. A little chaotic but nonetheless, successful. The Pediatrician seemed impressed of how much we knew about his uptake and general care. After questioning us about the doctors we were visiting and what they were doing for him, he basically said that he was doing well and for us to call him if we had any questions. He won't be his primary doctor until Memphis is declared ok to only see him and the pulmonary doctor in Huntsville.

The Pulmonary doctor in huntsville has come with high marks from both Birmingham and our family doctor. This is definitely comforting since this is going to be who really sees Memphis through the early stages of his recovery at home. Memphis is really looking forward to meeting this doctor and seeing how he compares to other cases that have been through his office.

Memphis' awake time consists of fussing, laying on his mat, trying tummy time, sitting in his chair, and swinging. Doesn't seem like a lot, but it leaves very little down time for mom and dad. he is really doing so well with all of the work. Just today he spent a long time working on feeding from a bottle. He only got around 3cc, but that's a small victory with how much he's been taking. Zero. His g-tube site seems to be getting better daily. he is really trying to roll over now too, but the funny part of it is that when we actually flip him over he gets so mad.

He enjoys sitting and talking with the family, and sometimes enjoys listening to daddy play guitar. The mandolin is a different story all together. Maybe daddy needs to practice on that one before letting little ears hear it.

Thanks for checking in on Memphis!

Memphis has been home for 2 days and doing great!  We think he enjoys being home, up and out of his hospital bed. He is quickly falling into a normal baby routine of playing, eating, and nap time.  It is very different  bringing home a four month old compared to a newborn.  All those months where you are supposed to be learning all the ins and outs of your baby and bonding have been missed.  It is ok though, we are just going to have to catch up is all; spend some extra time bonding.  Memphis came home on two monitors, a saturation monitor and a apnea monitor.  He also came home with a feeding pump.  There is a lot to keep up with but mom and dad are getting the hang of things pretty quick. 

Memphis' brother and sister have been out of town this weekend and have not yet seen him home.  They will be back this afternoon.  In a few short hours the entire family will for the first time be whole. 

Memphis is working very hard to catch up to where he should be developmentally.  He isn't doing everything a four month old baby should be such as: laughing, copying movements and facial expressions, babbling, copying sounds, reaching for toys, but has mastered all the two month old mile stones and learning quickly.  Hopefully by the time Memphis is a year he will be all caught up.