Taking Matters Into His Own Hands...

Today Mason decided that he didn't need his NJ feeding tube anymore. He took matters into his own hands and yanked it out this morning. Unfortunately the doctors, nurses and his parents didn't agree. Mason has earned himself another road trip to the 3rd floor radiology lab to have another one placed tomorrow. Until he receives a new tube he cannot be fed. His IV fluids and nutrition were increased to make up for the difference.

Mason continues to do well with his vent sprints. He is up to 4 hours 2 times per day. We are still hoping that he gets extubated tomorrow, but are now wondering if the NJ tube will take priority and push that back a day or two. I guess we will find out tomorrow.

He also seems to be handling the methadone and sedation weans pretty well.

No More Drips

I have lots to update tonight. Mason no longer has IV drips for Morphine and Sedation! He is now on injections (into his iv) of Methadone and his Sedation meds every 6 hours. He was switched from Morphine to Methadone to help this transition period. It still does the same for pain, but is much easier to wean when it comes to withdrawals. Mason is currently showing mild signs of withdrawals which is expected since he has been on morphine and sedation meds since birth. The docs hope to have him weaned from both completely in mid-August.

Mason has continued to sprint on his vent. He is now sprinting for 4 hours at a time with good results. He will have another sprint tonight and 2 tomorrow. The docs (and us too!) are hoping to get him off of the vent sometime on Monday. He seems to be letting us know he is ready by grabbing and hitting his breathing tube. He has also started to move his head back and forth to try and free himself from the tube.

Feeding is going well now. Mason is up to 11 cc's per hour which is more than halfway to his goal of 18. He is now having his feeds increased by 1cc 3 times per day. At this new rate (if all goes well) he will be at his goal by Tuesday morning. When this happens they can take away his TPN which is his IV nutrition. They have been reducing it while they are increasing the milk and his color is starting to look more normal. The TPN is yellow in color and had given him the "Holden NICU tan". He is also starting to gain weight and is up to 7lbs.

Here are the latest pics....

Steady Progress

Today Mason "sprinted" on his vent. This is a term the docs use for a trial where Mason does all of the work himself. He initiates each breath and only recieves minimal pressure support from the vent (to overcome the tubing, etc.). He sprinted for 1 hour in the morning and 1 hour this evening. He did great both times. The docs took a blood gas after each sprint and they both looked good. The docs will continue to sprint Mason on his vent multiple times over the next couple of days to help him build stamina to breathe on his own. When they feel he is ready, he will be extubated (tube and vent removed). When this happens Mason will receive nasal cannulas to give him a little extra boost of oxygen and pressure.

Mason's feeds are not going quite as well as his vent progress. He vomited a couple of times in the last 24 hours so the docs slowed down his feeds and will only increase them by 1cc per hour until he reaches his goal of 18cc's per hour. Tonight Mason is at 6cc's per hour. He will sometimes gag on his vent tube and we think this might be causing him to vomit. Hopefully once he is off the vent the feeding situation will improve. The NJ feeding tube he received has really helped him. Mason is also starting to poop multiple times a day :) Travis and I learned firsthand what tar poop was!

Here are a couple pictures of Mason during his sprint this morning.....

Progress

We are so proud of Mason's progress so far! The docs are continuing to wean his vent pressures. Today he is at 22. Last night they put him back on the vent program that allows him to do most of the work. He seems to be tolerating all of this very well. The docs are thinking that Mason might be off the vent early next week. We have our fingers crossed!

Mason is off of his antibiotic treatment from the closure of his chest. His diuretics have also been weaned to twice daily doses. The docs are also weaning his morphine and sedation and within 1 week he should be off his IV drips for both. When this happens, he will get bolus injections until those are weaned.

Feeding has also been going well so far. He is being given continuous 3 cc's per hour and will go up to 4 cc's at 11pm tonight. His goal is to get up to 18 cc's per hour before they start bolus feeds (large amounts in shorter time periods).

Mason is also continuing his physical therapy and was even sleeping on his belly when I came in this morning. The physical therapist put him there thinking he would only like it for a few minutes but he fell asleep and stayed on his belly for almost 3 hours!

Busy Day

Another busy day at UofM today. To start, the docs weaned Mason's vent pressure and rate today and he tolerated both very well. The docs also began the weaning process again for his morphine and sedation and he seems to be doing well with that too.

Mason also took a road trip down to the 3rd floor for his urology tests and feeding tube placement. The urology tests came back fine. This is of course great news and means no further major surgeries for Mason. It was a hard test to watch as it took place in one of the large radiology labs. Picture a huge x-ray machine and a small 6 pound baby right in the middle. I wasn't prepared to see him in such large equipment and it broke my heart to see just how small and fragile he looked. As for Mason, the tests didn't seem to phase him at all. He was a little upset at first and then he slept through the rest. In the process Mason also received his NJ tube. This is a feeding tube that passes through his nose and into his intestines. The docs are hoping that this will help with his reflux. They are already discussing the possibility of starting his feeds tomorrow.

The biggest news of the day is that Noah's parents got to take him home this afternoon! Noah did great tolerating his feeds and the docs let him go home. We are excited for Noah and his family and we are sure they will do great!

Update

It is hard to believe that Mason will be 8 weeks old tomorrow. Time has flown by. We knew this would be a long road, but it certainly does not seem like 8 weeks have already passed. We want to say thanks again to everyone for all of the positive comments and encouragement!

Mason looks like he is feeling better today. The docs went up on his morphine this morning because he looked fussy when they did their morning rounds. He seemed to be comfortable when I came in this morning. He spent a good half hour awake and looking around. Before I left, I read him a story and he fell asleep :)

Mason has come down some on his vent pressure. It was weaned down to 26 (from 29 on Monday). His blood gases continue to look good so we are expecting to see another wean tomorrow.

Recovering

Mason is no longer on a drug to keep him paralyzed, as the docs allowed him to wake up and move around today. His fever has also subsided, but they are still watching him closely. Mason's belly still looks pretty tight and his whole body is very puffy from all of the extra fluid and blood he received after the surgery. The docs have not weaned his vent settings yet, but his blood gases have consistently looked good so we are expecting that they will soon (maybe tonight?). The docs have also put his morphine and sedation weaning on hold until they are sure that he is comfortable after his surgery.

Mason's feeding tube and other tests have been rescheduled to Friday to give him another day to rest and recover. He deserves it!

Here are some pictures (taken last week) of Mason finding his nostril :)

Taking the Good With the Bad Again...

If there is such a thing as a degree in stress, I think Mason, Travis and I have all earned one! Mason was scheduled to have his belly closed today, but there was a surgery cancellation yesterday so they bumped him ahead. Mason went into surgery at 2:45 pm and did not come out until four nail-biting hours later. Needless to say we did not expect such a long surgery. The docs did not either. Long story short, they closed up Mason and then realized that he was not handling the closure well. Pulling all of that muscle together really put a lot of pressure on his little lungs. They had to "undo" a portion of it and insert a patch into his muscle to give him some relief. The skin was closed over this patch, making the closure complete.

Poor Mason did not breeze through this surgery like the last couple. He took a large step back on the vent. His pressures went from 19 to 28, oxygen from 21% to 40%, and rate from 15 to 52. His blood gases are looking good today so hopefully they can start the slow weaning process tomorrow. At this point, we don't think that Mason will be coming off the vent anytime soon. The process may take a couple of weeks. Mason also has a fever today and the docs are watching him closely. He is on drugs to keep him paralyzed for the next day or two to make sure he doesn't cause himself pain or irritate the incision site.

Thursday he is scheduled to get a feeding tube placed from his nose into his intestines to help his feeds. The docs are thinking he has some pretty severe reflux from his anatomy issues and that this will help him keep his feeds down. He is also going to have a study done on his kidneys, bladder and urinary tract because of some of his past issues.

On The Move

So far, Mason has had a good weekend. He continues to come down on his vent settings, morphine and sedation. He is having more awake time and is moving around more than ever. This is due in part to his physical therapy sessions with his buddy Dan every week. He even pulled out his NG tube yesterday. His nurse was convinced that he did it because he was mad at her. Mason also discovered his right nostril and stuck his finger in there. I have some cute pictures that I will post soon :)

The docs are tentatively planning his last belly closure procedure to be on Tuesday. They are saying that they should be able to fully close him up. As long as things go as planned, he should be coming off the vent shortly after his surgery (maybe within a week).

Mason has also started to poop more. He had a large poop this afternoon and we all celebrated. I think the other parents in the room thought we were crazy. The docs had stopped feedings until they could confirm that this part of his digestive tract is working properly. He has shown us that it is...at least for now. Next on the agenda will be to get his stomach to accept and digest feeds. Mason is taking baby steps in the right direction.

Please keep Mason's buddy Noah in you thoughts and prayers as he has been having some bad days. He was scheduled to go home yesterday but this was put on hold because he was not tolerating his feeds. His parents just found out that he has an infection in his blood and he will need more time to rest and recover. We hope that he gets better soon!

Update

Our little fighter never ceases to amaze us! This morning when I came to the hospital, his vent settings had not only returned to the same settings he was on before surgery, they had actually managed to wean his rate as well. His rate was weaned again this afternoon and his blood gases continue to look good. He is only on minimal support from the vent at this time. His morphine and sedation weaning also continued today.

I had a chance to speak with the surgeon who did his first surgery (his CDH repair). It was great to see her again. She said she was very proud and excited that Mason has come this far. She also reminded me how much he has surprised his team of doctors. Travis and I are so proud of Mason! His NICU nurses love him and he is becoming known as a very content boy who naps and looks around quietly when he is awake. However, he still lets them know when they are doing something he doesn't like.

When Travis and I arrived at the hospital this evening, Mason was laying on his side with his finger in his ear. It was cute. We all joked that this was Mason's way of getting his peace and quiet in the NICU. See the pictures above (they look a little yellow because of the dim naptime light).

Surgery Update

Mason had his 3rd procedure to close his belly today. The procedure went well and Mason did great. When he returned from the operating room, his vent settings had gone up slightly. They will most likely stay that way for a while and then they will wean him back down once he wakes up from the anesthesia and starts breathing on his own.. His pressure went up to 23, rate up to 45 and oxygen to 30%. The surgeon also mentioned that he thinks it will only take 1 more procedure to fully close his belly (probably next week). After this, they can start working to get him off the vent.

Updates

A few quick updates:

- Mason will go to surgery for his next belly closure tomorrow at 3:30pm.

- Mason has been put on a different vent setting which allows him to do more breathing on his own. On the previous setting the vent gave him a breath at a set time. This new program can sense when he is breathing and will not force in a breath in unless he slows down or stops breathing. They put him on it last night and he seems to be handling it fairly well. The docs are having to adjust his rate and pressure a bit to adapt to his behavior on the new setting. The good thing about this setting is that it is one step closer to coming off the vent.

- The docs have also stopped Mason's feeds. He continued to vomit when they tried to start them again over the weekend. Looks like they might wait a while before starting again.

Weekend Update

Mason continued to recover from his procedure over the weekend. His vent pressure dropped to 21 which is the level he needs to be at when he is extubated (taken off the vent). Now the docs will work to wean his rate. Since he is breathing quite a bit on his own, they should be able to wean him slowly. His oxygen support was bumped up to 25% because he was having some difficulties maintaining saturation levels in the 90's. When we left the hospital tonight he was saturating in the high 90's which means that number may go back down to 21 in a couple of days.

The docs also decided to start feeds again (through his NG tube that goes from his nose into his stomach). Saturday, he started at a continuous 1cc an hour again to prime his system. He vomited a couple of times and the feedings were temporarily halted. They started back up today and he seemed to be tolerating it a little better. He did vomit a couple of times early in the day when he was moved or when his mouth was suctioned out. The feedings were continuing when we left for the evening.

We were able to hold Mason again this evening and he tolerated it really well. We both got to hold him without the fuzzy pad underneath. It was so nice to hold just him without all of the extra padding.

Belly Closed Even More

Today Mason went through his second belly-closing procedure. Last time, the surgeons performed the procedure at his bed in the NICU, but this time they took him down to the operating room. Overall the procedure went well. The doctors were able to take off approximately 8mm of material from each side of his patch. It is hard to tell for sure how many more procedures will be required to fully close his belly, but it will be at least two more. His belly is now looking more and more normal, although it is quite obvious that things are packed in there pretty tight right now.


As of this evening, Mason is recovering quite well. His vent settings did not change much at all. When we left the hospital tonight, the only change from this morning was that his oxygen went up from 21% to 23%. With that said, it looks like they might increase it slightly more as he was having a hard time maintaining a reasonable oxygen saturation level this evening. Compared to the effects from the first belly closing procedure, these small vent changes are fantastic. The doctors expect to perform the third belly closing procedure sometime around the middle of next week as long as his vent settings continue at the levels they are at tonight.


There were two other significant events today for Mason. First, he pooped for the second time ever. Also, he was flinching when one of the nurses clapped her hands (she was laughing at a joke and the hand clapping was a result of her laughter). Although these may seem like insignificant items, these are both great signs for Mason as it shows that his digestive system is starting to "wake up" and that he is hearing things (a lot of CDH babies have some degree of hearing loss).

Day 41

Over the last couple of days the docs have continued to wean Mason's vent settings. His pressure is down to 24, rate down to 40 and oxygen down to 21%. Room air has 21% oxygen so this is a big step for Mason. Right now the vent is giving him the equivalent to what we are breathing, just with added pressure behind it. Unfortunately Mason will not be able to come off the vent until his belly is completely closed.

The docs have continued to wean the morphine and sedation, with good results. They have not decided yet when they will try to close his belly again. When they checked yesterday, the patch was still pretty tight. The attending surgeon will decided what the plan is tonight. We are hoping for something to happen tomorrow or this weekend. Of course, when this happens all of his vent settings will go up again (hopefully not as high) and the weaning process will start over. We are quickly learning that patience is key here.

The docs have decided not to try any feeds until his belly is completely closed. Mason will continue to receive his nutrition by IV for now.

Today we learned that Mason's ECMO buddy, Noah, came off the vent yesterday. Great news for Noah and his family!

Updated Pictures

"I'm awake, now what?"

Dad and Son.

Mom holding Mason.

Dad holding Mason.

Mason without the vent tape on his face.

Day 40

Mason is doing well today. The docs have weaned his vent pressure down to 25. They are also staring to wean his breathing rate (how many breaths the vent gives him) to get him to do more on his own. His current rate setting is 45 per minute with Mason contributing from 5 to 10 breaths above this on his own.

The docs have also weaned more of his morphine and sedation over the last two days. He does not seem to mind at all.

Travis and I got to hold him again last night. We were surprised they let us do this two nights in a row.

Mason may have his second belly closure procedure at the end of this week. If his vent settings continue to go down and he achieves a pressure of 23 or 24 again, then they will schedule him in.

Taking the Good With the Bad

Mason has taken some steps back on his vent, mainly due to a conjested right lung. He has some secretions in his lung that they are working to break up and get out. These showed up late last week. This is common for babies who have been on a ventilator for a while. Over the weekend his pressure went up from 26 to 27 and rate from 45 to 55. Today his blood gases look better and he is back down to a pressure of 26. They will take another gas this evening to see what it looks like. The docs want to get to 25 or below for the next belly closure.

On a good note, Mason is no longer vomiting and there is less intestinal bile coming out of his stomach. The docs are also starting to hear bowel sounds which means his intestines are starting to "wake up" and hopefully push things downstream instead of into his stomach. If things keep continuing to improve, they will start to feed him Pedialyte to see how he reacts.

The docs are continuing to go down on his sedation and morphine. He is tolerating all of this well. The nurses are trained to look at his facial expressions and body language as a signal that he needs more morphine or sedation. If they sense he needs more, then he gets a boost. So far, he is sleeping comfortably and when he is awake he looks around and occasionaly smiles.

The most exciting news is that his Mom and Dad got to hold him for the first time last night. We were able to sit in a rocking chair and hold him for a while. It was a wonderful feeling! I will try and post some pictures later.