Wednesday, March 11, 2015

Doing Well, an update about our little man

I've been wanting to update the blog now for a while, just to let everyone know how our little guy is doing. Well I have some spare time and a lot to say, so now just where to start.

As you all know, one of last struggles have been Memphis' sight, hearing, and feeding. Well I am so glad to say that Memphis has been eating by mouth now for a few months! He loves very flavorful food, and avoids almost all sweets. Some of his favorites have been chips and salsa, popcorn, ramen noodles, and pickles. Yes, pickles. He will eat regular dill pickle slices until the whole jar is done. He fights Daddy every time he comes around and steals a bite of his popcorn. He fought for so long to be able to eat it, and now he wants to fight to not lose it. He doesn't mind trying hardly anything, but he is very quick to let you know if he doesn't like it. We still can't get him to take gummy vitamins by mouth but he is getting more and more tolerable to them every day. We actually notice a difference in his mood now when he is hungry. It's very much like those Snicker's commercials, he is a different little boy when his belly is empty. Every day is a struggle to just make sure that he doesn't eat too much junk food. The little man loves his cereal! (especially fruit loops)

His hearing has been progressing good, and we don't expect any issues from it. He had started talking a while back, and now is a little talking machine. Some of his favorite words are huh, okay, and no. Just recently he started saying, what you say, when you don't respond to his huhs. Most of his speech is coming right along and it is so stinking cute, except now that he understands the power of NO. That may or may not be cute at all. Along with being able to talk though, he is also able to understand when Mommy or Daddy say no. He has also started calling us Mom and Dad, unless he is hurt or scared.

His eye sight is still a worry to us at this point. The strabismus affected eye has started drifted back outward now and the ophthalmologist has said that as good as our efforts were, they did not change the eye. It will continue to drift outward to what I expect would be almost its initial orientation. The doctor has mentioned doing another round of surgeries, but they would be only for cosmetic purposes. He has urged that we wait until right before he goes into kindergarten to do the operation, that way his peers won't have that to pick at him for. We are strongly considering this as we all know how mean kids can be.

Now onto the good stuff! Like I said earlier, he has been eating solid food, by mouth, for quite a while. Memphis' little stomach seems to be handling all of this just fine. We have the random tummy ache, and by far he may have more but he is just such a tough little boy. His lungs have been sustaining him now alone for quite a while. We have had a few small cold scares, but he has been able to fight them off with the help of a few breathing treatments. I imagine when he gets a little older a steroid inhaler and a rescue inhaler will be in order for him. Until those days he is still randomly using a nebulizer. He loves spending his days running around with the big kids until he is out of breath, and then just running some more.

What a little tough boy though. We're not sure if it was due to the amount of pain he was in while in the hospital, the medicine he was given, or just a strong will, but this little man can take a hit and keep on going. We've seen him run into desks, fall off of chairs, put hot soup in his mouth and just keep going. I pinch him while we play and he doesn't even act like he notices it. Oh but if he gets in a little trouble, he turns on the water works. He has turned out to be one of the most caring, sharing, and sensitive little boys I've ever seen.

Well everybody, that's about all I have in me for the day. Thanks for keeping Memphis in your thoughts! It means so much to us.

Tuesday, January 7, 2014

An update after a long while.

I know it has been a while since we updated everyone, so I figured we should. The family is doing great. Memphis has been mostly well, and dealing with winter adequately. He has been playing hard here recently, and just being a crazy little two year old. Rowan and Braden have been doing great as of recently as well. The cold weather and dark evenings have been restricting their play time, and they have been getting a bit stir crazy.

Memphis' health has been good for the most part here recently, although we had our first experience with RSV. We went in with a sick little guy, who was having troubles breathing, and they admitted him in the hospital. His oxygen saturations were very low, and the little guy just needed some help with breathing. He spent the good part of a week just hanging out with mommy in the hospital bed, drifting in and out of sleep. Being back in the hospital just confirms his evident case of PTSD with medical facilities. He hated every part of being there, and every person that came to look at him. He made sure to let us know about it too. Poor sad little baby. He has fully recovered, and has managed to be a little sick ever since then. I think in reality the entire family has been a little sick all winter long.

His eating had taken a great turn for the better previous to the hospitalization, as he was interested in trying almost everything. Especially things like soup, that he doesn't have to chew much. He has had exposure to a bunch of normally eating children his own age, and really wanted to follow their lead. Since the hospitalization, he has pretty much been back to normal with eating. Not wanting to try anything. He has his random moments, when it seems like you can trick him into eating something small, but they are short lived. We try and try, every day, but it is a slow process.

Christmas went well for the whole family! Now to find somewhere to put the kids stuff. They all had a great time, and we spent the vacation time visiting with family and enjoying the break. We are all back to work, and the kids back to school. No more breaks for us.

Well once again, thanks for reading!

Wednesday, August 14, 2013

School and Birthday time!

The past week or so has been crazy! With Rowan going to fifth grade, Braden going to Kindergarten. It has been wild. We're hoping Braden does well, but assume there are going to be some bumps in the road while he learns the rules. Michelle is definitely ready, but I'm sure she is sad to see the kiddos growing up so rapidly. All of the school supplies have been bought, Braden has met his teacher, and Rowan's orientation is later this week. They seem happy with their teachers. That's all we can ask.

Memphis has been growing up too. He is constantly playing! Jumping, falling and wanting to be a big kid. The one downfall of this is that he doesn't want to be held down. Come feeding time, he is too busy to sit there and eat. Speaking of eating, he has decided that he doesn't need to eat at night. This is good and bad. During the night while he is attached to the pump, he decides to disconnect the line. Therefore, food goes everywhere, and his stomach ends up emptying all over the bed. Not a pretty sight or smell! Mommy has been trying hard to get all the food he needs over the day in his belly before he goes to bed, with good success. It has pushed his bed time back a little, but Memphis is ok with that! No more stinky, wet baby in the morning anymore.

His language skills are growing everyday. He still shows very little interest in talking, but he has developed a few more words. Thank you and Thunder are some new ones. He basically just walks around grunting, signing, and saying "mommy, daddy" all the time. We love it. He is working super hard to get there, and so are we.

His eating has come a long way. He no longer turns away food! He doesn't swallow it, but he doesn't turn it away either. He loves his water though, especially after a hot day playing outside. We took him along with us while we played tennis, and afterwards he couldn't get enough water.

His kidney doctor has officially taken him off of blood pressure medicine now! His blood pressure is now normal. The doctor only wants to see him once a year now, just to make sure his kidneys are growing. There are a percentage of children with kidney damage that their kidneys don't develop right. Just another worry, but our little guy isn't worried. :)

His second birthday is coming up this week. We are so excited! Thanks to everyone that follows our little man and has thought about him in his tough times.

Tuesday, August 13, 2013

An old writing that I just dug up

I was looking through my computer and found what I started writing when Memphis was put in the hospital. Its long and you don't have to read it. I can't even guarantee that it is written well, but I felt like I should put it here, so...

      "Memphis Warren Tipton was born on august nineteenth at seven twenty five am. He weighed eight pounds three ounces. At birth he displayed a great difficulty in breathing and was immediately given oxygen by bag by the pediatrician on call, Dr. Davidson. After approximately two or three minutes of that they informed me that he would need to go into the NICU until he began breathing a little better. I followed him to the NICU, leaving Michelle in the operating room. When we got there they continued the breathing and the pediatrician informed me that he would probably have to be hooked up to a breathing machine until he got better. It was at this point that was told that the NICU wasn't officially open at that time and I would have to leave until it's opening at eight am.
    The walk down the hallway to the elevator was a painful one. Here I was completely useless while my baby boy was struggling just to get air. With my emotions running wild I entered the waiting room on the second floor labor and delivery are, with Wil and Danielle waiting on good news. I was so distraught that I couldn't even hardly speak, so I typed into my cell phone what had happened and handed it to Wil. The message simply stated that the baby wasn't healthy and they were taking him into the NICU for difficulty breathing.
    The wires and tubes were appalling to say the least. By the time got to the NICU Memphis had a breathing tube in his throat, two IVs in his belly button and various other sensors taped all over him. His face was still swollen from the birthing process I guess but he was having a very difficult time opening his eyes. His breath was short, hard and quick. Very labored. I was afraid. Afraid of what was happening. Afraid of touching him. Afraid that I may touch something I wasn't supposed to. That was all cleared away by a nurse, saying something as simple as "You can touch him".
    Then came the waiting, which seems is all I have been doing lately. I only had to wait about ten minutes for eight to roll around, but it seemed so long. I told Wil and Danielle that I would be back and headed back to the NICU. By the time I had reached the door in to unit the pediatrician was headed out. He stopped and said that he was just coming to find Michelle and I. He then motioned me into a room and said that we needed to talk.  We sat down in the darkened room and he began speaking. He said that Memphis had been born with a defect. It was called congenital diaphragmatic hernia. To put it simply, his diaphragm had not formed correctly on his left side, and now his intestines and part of his stomach were in his chest cavity. He informed me that this was definitely not the issue with a baby born with this. The main issue is that the lungs are not developed correctly, especially the one on the left side. He ensured me that this is most definitely serious and it will require an effort by doctors and equipment that Huntsville hospital did not have. My heart stopped, after a moment and a few questions about the deformity we went to the surgical recovery to tell Michelle. As can be imagined she took the news the same way I did. She had only seen him once since the birth and that was only for a second when they wheeled him out to the NICU.
     The rest of the family had to be told. I had already told my mom through a text message, but that was nothing compared to in person. I stayed with Michelle until they let her out of recovery, but then I had to get the things from the car and inform the family of what was to come. We took a quick stop by the NICU to let Michelle see him again and then she went off to her room. When I stepped out of the elevator everyone was gathered around outside of the labor and delivery station waiting on me. The first person I saw was my son Braden, he yelled daddy! I completely lost it then. I swept him up, it was the first comfort I had felt since before the surgery. While holding him there I told Michelle's and my family that they were air lifting him to Birmingham as soon as they could. I sent them off to her room and made my way down to the car to get Michelle's bags.
    I had decided that I would follow him to Birmingham, someone needed to and I felt that I was that person. When I got up to Michelle's room I talked to her and made sure that she would be fine without me. When we finished discussing this I took family down one at a time to the NICU to see Memphis. The first to go was my mom. We walked there and went in to see him laying there, struggling for life, working so hard just to take such a tiny little breath. It was pitiful. After she got a minute in there we went back up and I took the rest of the family there one by one. Each time with the same explanation. "the doctor says it's very serious". "They don't see this deformity often." "It isn't the surgery that's serious as much as it is the underdeveloped lung." The same questions, the same answers. I felt like by the end of that day I could have went in front of a medical council and explained it to them. The day drug on until finally I found out that the transport was planning on being there to get Memphis at eleven, and I had to be there to sign papers to release him. While down in the NICU the nurse asked if I had taken any pictures. I informed her that I would take them later. Her response was simple and to the point, "If you want pictures take them now, he won't look this good after he gets there and they do the surgery".
    Just as they had promised the transport team showed up a little before eleven and I went down to find two HEMSI workers and two careflight workers. They can't land next to the children's center anymore so they have to land off site and ride an ambulance over from there. The two guys from careflight were great. They were quick with what they did and pleasant to talk to. I also got introduced to someone else while I was down there, a thirty year old nurse who had been born with CDH. He explained that  we were going to one of the best places around to fix the deformity and that they had seen lots of progress in technology and success regarding CDH. By the time he had finished talking to me I had a huge weight lifted off of me. Not that was assure at that point that Memphis would live, but just that this has happened before, and people have survived it. The nurse, steadman, left and I informed the transport that I would be going to Birmingham and asked them the normal where and when. I also asked them if they could bring Memphis by Michelle's room so that she could see him for a minute. Which they did, they were operating on a limited amount of oxygen so they could only stop for a minute but it was no problem.
    Walking back to the room with the transport team reminded me of some tv show; Everyone was stopping, there were radios going off, people were parting in the hallway. Even up to the point that they put their key into the elevator and made it immediately come up to the floor we were on. As we pulled up to Michelle's room, they turned the bed around and wheeled him in. This was the first time that Braden got to see him. The transport team, especially the careflight guys, were the greatest when it came to Braden. They immediately responded to him, asking him questions and things like that. Then almost as quickly as they walked in they were gone. Promising to call me and let me know his status when they got there.
    Looking back on the stress that was Braden's birth, the unfortunate result of not being able to deliver naturally. That stress would be welcomed back with open arms in the replacement of this. It really isn't the fact that he was sicker anything of that matter. It is the fact that I was completely helpless. It was a tragic helplessness. Nothing I could do would make any difference, in actuality probably make it worse. Conquered. Destroyed. That's what had become of me' and within a matter of a few hours.
    Everyone had decided that Wil would come to Birmingham with me to help keep my head straight. This was most definitely for the better. My thinking was not straight at all. In hindsight I probably should have let him drive, but I was trying to get to my little boy.
    Wil and Danielle left to go pack for the night. Tom and Pamela left to get food. My mom left to get Rowan, who still had not heard the news since she was in school. Michelle and I were left there all alone. No crying, nothing. Just the sounds of the hospital filling in the gaps of silence. We talked a little about what I was going to do when I got to Birmingham, we talked a little about Memphis and the other two kids. I was distraught, she was distraught. We both had little to say that wasn't said with a simple touch.
    We ate some lunch and then planned on leaving. All arrangements had been made, and we were out of the door, only to be met by my mom and the kids coming off of the elevator. This stopped us completely. I had to explain it to Rowan before she went in the room and Michelle would be left with this unnerving task. I'm not sure if it really set in when I told her. She seemed worried, but seemed more upset when I told her that I was leaving. The last thing I wanted to do was upset her, but it was inevitable. She quickly got over it, but I still think it hurt her a little. I was on a mission so I told her what I needed to tell her and we got on the road with no plans of stopping.
    When we arrived all I knew was that I was going to the seventh floor. I asked the people up front at the welcome desk where to go. Wil and I made out trek up to the seventh floor. When got there I was greeted by a locked door with a buzzer. I buzzed in and was quickly told to actually wash my hands, sanitizer was not allowed. There he was, hooked up to all the same type of machines. The room was dark, with beeps and buzzes all around. The staff was very friendly and informative. The first person I met was the nurse, Frannie. She was very informative and helpful. After that, I met a huge number of people; surgeons, nurses, surgical fellows and all kinds of people. The accommodations were there including a cut rate on a hotel room and being put on a waiting list for the Ronald McDonald house.
    I was sat down by a surgical fellow who I couldn't tell you the name of. He spoke very positively for Memphis, explaining all of the steps they could do to help him. Everything from a ventilator, nitric oxide, to an oscillator. He also explained that everything that could be done to assist him in breathing had not been done yet, so there were a lot of "tricks" that could still be done. The last of all of them was an effort called ECMO, but he was no where near that. They called him a wild child because of when they brought him in he was trying to pull all of the tubes out. Sedation was necessary.
    The next doctor I met was Dr. Scott Anderson. He was the surgeon that everyone had spoke of as kind of being the expert on CDH. His talk to me was a little less than positive. He was telling me everything that could go wrong, but also encouraging me not to be extremely positive about his prognosis. You see, CDH babies can change very quickly, and he was right. Memphis' condition degraded quickly. Within a few hours his ventilator settings had been raised to the highest allowable settings. He medicine had been raised to a point that no more could be used. We went to get some food after a while and by the time we had gotten back he was put on nitric oxide. This went on for the remainder of the day and it was like a roller coaster. The next day he was better, but they called this the honeymoon, they expect them to do OK for the first few days and then get worse. When Michelle got to Birmingham on Saturday he was hooked up on pretty much everything he could be, everything except the oscillator and ECMO. At the end of Saturday he was on the oscillator, and that was horrible. It looked like he was sitting on one of those beds that vibrate. It was shaking everywhere. Then, somewhere around ten pm, came the ECMO. It was supposed to be a last ditch effort and here we were two days in and they were doing it.
    A simple surgery. Nothing more. This simple surgery involved putting my baby on blood thinners and pain medicines (which he had already had to sedate him), cutting a hole in his shoulder and placing a cannula into his jugular vein, and this was the better of the two different types of ECMO. After a few minutes of emotions and visiting we were hurried out for the surgery. As we sat in the waiting room holding each other, minutes turned to hours. Our emotions and the long day prior had finally exhausted us. We nodded off. Awoken by the surgeon we listened to him tell us how everything went fine and now it has become a waiting game. Five days to five weeks. Anything can happen. We went inside to see him and there was the shock. He was laying there head turned, with tubes, large tubes, going into a gauze patch on his neck. Deep red flowing through them. All of this hooked up to a gigantic machine with numbers flashing everywhere. A large monitor hooked up to it with at least ten numbers going up and down. All was well, except us.
    The next day seemed great! He responded very well and every number that could go down or get better did. They were weening him off of the dopamine and the nitric oxide. Everything was well. Hope! As was explained though, everything can change quickly and it did. By that evening his numbers had gone up and the machine was working harder for him than it previously was. We left him in the hands of the nurses.
    Monday was harder than I had expected. We did a lot of sitting around while Michelle pumped. The times that we did see him he was about the same. He seemed to be getting worse throughout the day. Just as he had done the day before, he got worse in the evening.
    The next few days have been the worst since we've been here. They have put a bili light up over him to reduce his bilirubin. He basically has jaundice. Since he has a blood and Michelle has o blood there is a conflict between the two bloods. Nothing unusual, but he has to stay under this "tanning bed" for a few days and where a mask that is attached to his head.
    He has started showing temper. They have had to sedate him numerous times for flailing around. He now has a regular scheduled dose of a sedative due to it. The more that he moves around, the weaker his numbers get. We were basically told not to touch him due to aggravation. Even our speaking seems to get him agitated. Wednesday, when we got to the NICU, he was waking up so at that point we got to uncover his eyes and turn off the bililight. He opened his eyes and looked at us. During these few minutes his falling numbers went back up and he was doing great. His eyes seemed so sad. He could only open the right eye due to the fluids gathering in his cells, but he opened that one up wide. He showed signs of being stimulated and would follow my face and Michelle's face when we moved. It hit me on a emotional level that I had a very hard time controlling. As soon as they covered his eyes up he started declining again. It's so hard looking someone in the eye that you know is suffering such discomfort, especially when that someone is your child.
    Thursday morning I asked the question of what has to happen for him to get off of ECMO and get the corrective surgery. The pediatrician said the first step is getting the extra fluids off of him. He is on a diuretic called lasics, and was doing well, but they said he was losing too much weight and now they backed off of it. The next step is weening him off of the ECMO pump itself. Right now it is running about 300, it needs to be running a constant 50 before he can be considered. If both of these criteria are met then they can attempt to take him off with ventilator assist. We asked all these questions for the simple reason of when I'm asked the same question, I can answer it. I think the most aggravating thing was said to us today. We were asking about the numbers and what all of them meant. After the nurse practitioner told us all of the information, she told us not to worry about the numbers and just love on him. It's very difficult to love on someone when you cant touch him or hardly even talk to him.
    They informed us a few days later that his circuit needed changing out. These are the tubes that the blood flows through, so basically they change out the entire machine. Clots build up inside the tubes and eventually this is necessary. The downside to all of this is that he will digress in his improvements. Some of the weight that he had lost of his swelling will come back and this may not improve his falling numbers. I personally felt that they waited too long to do this, due to not having enough machines ready at the time. Two other children had just been brought into NICU, and they both were ECMO candidates. One of the children actually had a diaphragmatic hernia also. The pump was changed early the next morning, I believe it was Monday, but his numbers continued to decline, falling farther and farther into the unacceptable range. The numbers that we were originally not to be under ninety were now at eighty-five. The nurses continued to tell us that this was ok and they told us that as long as it didn't fall below eighty-five, it was ok. The number fell to eighty very quickly, they changed the parameters to below eighty. It seemed every time that his numbers changed, so did the parameters that he was allowed to operate under.
    It was desperate by that night, his numbers had fallen much lower and were fluctuating up and down with a great variance. The doctor came and talked to us and told us that he would need his ECMO changed from VV to VA. This procedure would be another surgery just like the first and would also set him back again. The risks were the same and he explained that the survival rate was no lower by being changed. It actually would increase the ability to keep him more stable. The risks involved were changed now though, instead of just losing the one vein, he would also lose an artery after ECMO was over. All of Memphis' blood flow through those two vessels would have to find collateral routes, this is typical with these babies, and mostly it works out this way.
    We waited in the waiting area for about two hours, and the typical waiting room routine occurred. The doctor came out and told us that he was doing fine, and that everything went as planned. The changes were immediate. His flow had increased dramatically, but also did his critical numbers. Everything was much better. We were relieved for a while.
    The next few days they focused on his water weight, which was an enormous task. He had gained around six pounds of weight due to fluids and a systemic inflammatory response."

The rest of the story is followed on the Blog. I stopped writing this very shortly before I began writing in Blogger, so I felt no need to continue on this.

There it is.

Thanks for reading!

Monday, August 12, 2013

I know this is late notice, but I just never got around to posting it here. So here it goes...

Come make a splash with Memphis. We are having a life celebration at Monte Sano Pool Huntsville AL

Date/Time: 18 August 2013 2:00-4:00

This will celebrate Memphis 2 year birthday which is 19 August. He is such a little miracle!!
We would like to invite all friends of Memphis to join in this celebration.

Memphis has many friends who have been a part of his life and even contributed to making his life possible!!
We hope to see as many as we can on 18 August.

This will be a pool party so bring your bathing suits and a chair.

The pool is on Monte Sano Mountain. At the gate, tell them you are there for Memphis Birthday.

Please RSVP for planning purposes to either Pamela Knight or Michelle Tipton at 256-679-9911

No gifts please. If you want to do anything, make a donation to either Children's Hospital Birmingham or Ronald McDonald House. They were so wonderful to Memphis and his family.!


Friday, July 19, 2013

Just a picture

Memphis wearing his big boy shoes
Just thought I would share this pic. It makes me smile!

Thursday, July 18, 2013

Just a quick update on the fam

Just wanted to share a little time with the readers about the rest of the family. So much time is spent with Memphis that we tend to overlook ourselves sometime. The days string together, and the time disappears.

All of the kids are doing great! To start with the oldest, Rowan is doing wonderfully. She spends most of her day helping mom with Memphis, playing with friends, and playing computer. She plays on the computer mostly. Minecraft is her current addiction, but on the positive side, it is familiarizing her with computers. I have given the ultimatum to her that if she wants to spend a lot of time on the computer, she needs to starts learning how to work with it. She has developed a good understanding of some basic concepts, and I have started getting her into basic programming concepts. She is off to camp next week. I'm sure she is looking forward to that.

Braden has just been Braden. Playing all day, wanting to play all night. He spends most of his day helping mom, and playing with friends outside. He and Rowan spent six weeks of summer on our local swim team, which in those six weeks he has developed a confidence in the water. Something that we demand from our children. He has been good and growing like a weed!

Michelle has been super busy! With all the kids home during the summer, and with our nephew there too during the day, she has a hectic day. Fortunately they aren't all babies, so the big kids can help some too. The evening is her break, until its time to put little Memphis to bed, which he has grown so accustom to that he does not want daddy to do it. He loves to have me to sit in there with them, but it is Mommy's job to put him to bed. She always wanted a momma's boy, now shes got one.

I am busy with a new job. I just started working at, as a junior system administrator. Great workplace and great people! Other than putting in my time at work, I do the same as the kids. Help with Memphis and the house, and play computer! Not much more that that.

Thanks for reading!