Dr. Anderson came by and let us know that Memphis is scheduled for surgery tomorrow. It may or may not happen, but if everything continues on the trend that it on right now, he wants to go ahead and do it. He also explained all of the complications that arrise due to the congenital hernia. He told us that all CDH babies have some sort of gastrointestinal issue, be it small or moderate, they all have them. They all have reflux problems also. The diaphragm is part of the body that controls reflux, and due to the damage to it, it can't do it's job. The fix to this is an antireflux surgery called a fundoplication. CDH babies also typically have issues with eating. If they cannot recover and start eating through the mouth, they are given a tube through the nose for feeding. If this doesn't relieve the problem then a g-tube will be put in their stomach. This is for direct to stomach feeding. Due to the lack of a lung on the one side, they usually have a open cavity there. Fluid will start building in this cavity, and if the body can't absorb and regulate this fluid, a chest tube is inserted for draining the cavity.

There may be a need to insert a dialysis catheter in his abdomen eventually, and it was origianally part of the plan to go ahead and place it while he was open. After further thought on the matter, Dr. Anderson does not want to do it. He feels as it may increase the chance of the patch of his diaphragm becoming infected. If Memphis doesn't start producing urine though, this will become another procedure that he will have to go through.

When they have him in surgery, and are repairing the hernia, they will have to pull his intestines out of his chest. During this they will check for a narrowing of the main blood vessel in his intestines. They expect there to be some, but how much will indicate whether or not they have to do any repair on it.

After placing all of the intestines back in the abdominal cavity, they expect some intestinal malrotation. This is because the intestines are not attached to the inner wall like they should be. They cannot attach the intestines surgically, they basically have to let them fall like they want to.

Another weird issue is that after all of this, his appendix will not be where it should be. This is not threatening at all, but just necessary to know because that later on in life, appendicitis is more difficult to diagnose.

Getting closer

4680 grams, down 50 grams from yesterday. Memphis had a little bit of an eventful night yesterday. He was doing well and his ventilator was being weaned down every chance they got. Around six pm his blood pressure saw a large drop. This also correlated with a rise in his CO2, it went from around 40 up to 66. The range they would like is between 40 and 55. His dialysis machine was turned down to take no extra off, and his ventilator rate was turned up to 60 from 50. Nothing particularly great was changed, but his trend of continuously getting better was interrupted briefly.

Over night they were able to wean his O2 concentration down to 59. The surgeon has stated that he wanted this number at 60 or below before attempting surgery. The nurse said that if they can get the rate down a little, then they may do the surgery tomorrow. He will get much worse after the surgery. Hopefully not too bad.

45 days at Children's Hospital in NICU

We are now 72 hours off of ECMO and still stable!

Memphis has been staying very sedated today to keep him from waking up and being agitated. Being agitated can not only mess up his oxygenation numbers and cause him to shunt but it also messes up the dialysis machine and causes it not to work properly. Yesterday, Memphis spent alot of time waking up and being very upset and angry with the world. There was no calming him down without sedation medicine. The sedation medicine is now on a drip rather than just "when he needs it". Every time he woke he would scream and cry -- We can't wait to actually hear him cry. It is awful to sit and watch him cry and not hear a sound. Although its great to see he is having reactions and emotions. Needless to say, he is not a happy camper when awake. I wouldn't be either.

Last night he had two drops of pee in his diaper! Twice as much as last night still not enough. The nephrologist came by today, they had taken some x-rays of Memphis's kidneys to make sure everything looked ok last Friday. He said that there are no blockages/blood clots in the kidneys and they look fine. This was great news. Now it's all up to Memphis' body to get them going.

The ventilator percent o2 concentrate has been weaned to 63%.

Still no definite date for repair surgery. Hopefully, we will get a date on Monday when we see the surgeon.

Thank you to everyone that has been keeping Memphis in their thoughts. He wouldn't have made it this far with out you. You all have helped him to want to be here with us.

Second stable night off ECMO

Memphis had another good night last night. 48 hours off of ECMO! He kept all his saturation numbers above 95 which is exactly what we want! If the numbers were to get below 95 he is more than likely shunting and his pulmonary hypertension is effecting him. That would not be good.

When we asked the surgeon when Memphis would get repair surgery he said that it would be sometime this up coming week (Tuesday, Wednesday, or Thursday). The doctor would like the venelator settings to come down some more first. This is because once the surgery is over, if Memphis needs the venelator more to help him heal they will have more room to turn up the venelator without damaging the lung. The doctor wants the o2 conc. To be at 60%. Right now it has been weaned to 70%. Memphis is definitely headed in the right direction. We are doing everything possible to keep Memphis calm and un-agitated. Anything could set him off in the wrong direction. Mom is having a hard time sitting back and not messing with him.

The night nurse said that she saw one drop of pee in his diaper last night! Thats not much but we will take it. So far this morning, the nurses have not seen anymore urine output.

Let's keep helping Memphis to continue to make good progress through his journey. He has over come so much already but still has a long long way to go.

An uneventful night last night... and day 1 without ECMO

When we arrived this morning, we saw the surgeon walking into the NICU. He stopped and told us that Memphis did well last night. His oxygen numbers have been doing well, staying above the threshold they have set for him, and typically staying at the maximum. All of his blood gases have been excellent so far. They have been good enough that they have weaned his ventilator flow down slightly. Due to the threat of pulmonary hypertension reoccurring they will not wean his oxygen numbers down much until after he has recovered more completely. Dr. Anderson said that one of the more optimistic things that has come out of all of this is that after removing the dialysis machine, and fluids collecting (which is a typical response of being removed from dialysis), his lungs did very well and he was able to tolerate it very well.

They will place him back on dialysis later today. They will be taking a small amount of fluid from him, when they can. It is still important that he doesn't accrue a lot of fluid inside. They feel fairly confident that he will urinate on his own while on dialysis, if they allow his kidneys to rest a while longer.

We still have no word on when they will plan the repair survey for the hernia. We were told it can be done while on dialysis, but they probably will not do it until after he urinates on his own. The reason for this is that obviously the surgery will not fix his kidneys, and that is the bigger issue right now.

We will keep you updated.

Looking good without the pump

Here's a shot of Memphis modeling his new hair style (or lack of hair... he lost some when they took the tape off) without the pump in the background. You can see the dialysis access on his neck now rather than the big cannula. They had put him back on dialysis immediately after the procedure, but the machine has clotted up (which is normal) and he is off until the next morning.

Memphis is officially off of ECMO! He is doing fine, but they have him paralyzed at the moment. They say that the next few days can be tough.

Just a quick update to let everybody know.