Thursday, June 28, 2007

Recovering

Mason continues to do well today. He seems to be resting comfortably and has not required any extra morphine or sedation (other than what he gets continuously through his iv). He has been sleeping all morning.

His vent pressure was weaned to 26 today. Mason is even starting to initiate breaths on his own. The doctors turned down his vent rate to 45 to see if he keeps breathing "above the vent". This is another good sign that after his bellly closure procedures, he will be ready to do some of the work on his own.

The docs also started to wean another one of his sedation drugs (he currently has 2). He has responded well which means that he his not addicted to this one. On Saturday this drug should be completely off.

The doctors had originally planned to do the 2nd belly closure procedure tomorrow. Since Mason had to take such a step back on the vent, they want to give him time to recover and not rush things. They say that the first couple of procedures are hard on the babies, but that the 3rd and 4th are not as bad. They are predicting his next procedure to be early next week or possibly over the weekend.

Wednesday, June 27, 2007

Update

The doc's decided to start closing Mason's belly yesterday afternoon. The OR schedule for today was filling up with emergencies and they didn't want Mason to be bumped to tomorrow so they pulled it ahead. The surgery went well and they were able to take out about 1cm on his patch. His vent settings (as predicted) went up to 28 pressure, 55 rate and 40% oxygen. Mason was resting comfortably when we left the hospital last night.

Today they are weaning him back down on his vent settings in preparation for his next belly closure procedure (estimated for Friday). His pressure is down to 27, rate at 50 and oxygen at 28%. So far his blood gases have come back good. They are thinking they may take the rate down to 26 today. The docs want his pressure back at 23 or 24 before his next procedure. They are estimating it may take another 2 or 3 procedures to close up his belly completely.

They will not wean Mason down any further on his morphine or sedation until his belly closures are complete and his is comfortable again. They have been giving him boosts of pain medication because he seems to be sore from the procedure today.

Today, the docs will decide what to do with his feedings. When they started the feeds over the weekend he had a NG tube that went from his nose to his stomach (because he can't swallow with the vent tube). They may need to advance this tube into his intestines and bypass his stomach completely for now. This is common for CDH babies. Today the attending surgeon will decide if this is the way they want to go, or if they want to wait another week or so to begin slow feedings into the stomach again.

Travis and I want to thank everyone for the continued support, prayers and warm wishes. You have provided such a great support network for us. It is wonderful to hear encouragement every day.

Monday, June 25, 2007

More Progress



Things have been very busy at the hospital over the weekend and today. I will try and recap the best I can.

Mason is still maintaining his blood pressure and has not needed any meds since they weaned him last week. The docs are continuing to wean his sedation and morphine. Since they have started this, Mason is having more awake time to open his eyes and look around. Sunday, Travis and I saw him sneeze, cough, yawn and smile. We loved every minute of it! The docs will continue to wean until they can get him off of the IV drips. After that, he will go to injections and will be weaned from those. Finally, he will get morphine or sedation only on an as needed basis.

Mason is continuing to make progress on the ventilator. His pressure is now at 24, rate at 50 and oxygen support at 30%. His blood gases are still coming back good so they may drop his pressure to 23 tomorrow. The doctors are very impressed by his progress. He is keeping up with any normal CDH baby which is great considering his severity and prematurity. He has even earned the nickname "rockstar" from 2 of his docs. Noah's parents have nicknamed him "scrapper" for his feisty attitude towards the nurses :)

Wednesday is the day for Mason's first belly patch closure. It will take them a couple of times (maybe even 3) to fit his intestines back into his abdomen. After each closure, Mason will most likely take a few steps back on the ventilator due to the added pressure on his lungs. We hope that they are able to do it in only 2 surgeries since he is so close to being "trialed off" the ventilator.

Mason was started on a very small amount of breast milk Saturday. This was increased very slightly on Sunday. Unfortunately he vomited Sunday night (and also tonight) so the feedings had to stop. This could mean that Mason's digestive system just isn't ready to handle food yet. It could also mean that he has acid reflux or a digestive tract issue both of which are common in CDH babies. These issues are usually correctable with medications or surgery. The doctors may try to wait a while longer and then try to introduce milk slowly again to see what happens.




Friday, June 22, 2007

Mason continues to do well today. He is still off the blood pressure meds and seems to be maintaining a good blood pressure.

The docs have started to slowly weaned his sedation and pain medication. The sedation is weaned in the AM and the pain medication is weaned in the PM.

His vent pressure settings are down to 27 with a rate of 50. His oxygen has been weaned down to 30%. He seems to be tolerating both changes well.

Mason is also ready for visitors. Travis and I welcome those who wish to visit Mason but respectfully request that he not have visitors that are sick or feeling like they are coming down with a cold, cough, etc. Many of the babies in the NICU are critically ill and something as simple as a cold could be dangerous to them. Also, the NICU will not allow children visitors unless they are immediate family (like a brother or sister). If you wish to visit, please get in touch with Travis or I and we can plan on a time. This is important since visitors are only allowed when Travis and I are present (except for Grandparents). Also, Mason is only allowed 2 visitors at his bedside at anytime.

Thursday, June 21, 2007

Busy Day

Mason has had a very busy day so far. When I came in this morning, they notified me that Mason would be moving to the Holden NICU today. I helped the nurses prepare him for his trip downstairs and we moved him around 11:30am. He handled the move like a champ and he will get to stay in his crib, but all of his med lines and pumps need to be changed (because the PICU and NICU do things differently).

Mason's oxygen level on his vent came down to 40% today and he seems to be taking it well. His pressure has not been changed from 28 to 27 yet. I am assuming this is because of his big move. They may just decide to let him rest today.

The NICU is small and cramped when it comes to space, much different than the spacious PICU. They have some pretty strict rules when it comes to the number of visitors (no more than 2 at any time). The advantage is that the NICU has more experience dealing with CDH babies. Right now there are 4 other babies with the same condition in the NICU.

Wednesday, June 20, 2007

Some New Pictures
















More Progress

Mason has been off blood pressure meds for 36 hours now. He is still doing well and his blood pressure seems to be just high enough that he is continuing to urinate well. This is important for him because he gets a lot of fluid through his IV. If he does not get rid of the same amount he will get puffy and bloated and some of this fluid will collect in his lungs. So far so good...

The docs are continuing to wean Mason on the vent pressures. His pressure is now at 28. This is great considering he came off of ECMO with a pressure of 33. The docs will continue to wean him down by 1 notch every day (as long as his blood gases come back ok). His oxygen is now down to 45%. The nurses and respiratory therapists are able to wean the oxygen down to 30% at their discretion without doc approval. They seem to feel comfortable trending him down by 5% every couple of days.

When Mason is weaned to a certain point (not sure what this is yet), he will go onto a vent setting that will let him do most of the work while the vent will back him up if he forgets to take a breath or gets tired. When he begins to breath well with consistency, he will be taken off. We are probably still a couple of months away. Getting off the vent is going to be Mason's next big hurdle.

I have some new pictures to post, but I will have to wait until I get home to download them.

Tuesday, June 19, 2007

More Progress

Mason has decided that he no longer needs blood pressure medication. As of 9:30pm last night, he is completely off of all blood pressure medications. The nurses and docs are watching him closely and think that he may need a low dose of one of the meds to help his kidneys make urine. He tends not to pee as much when his blood pressure is lower. They will watch how he does with no meds for the day and then make their decision.

Mason has also gone down on his vent settings. His pressure is now at 29, his rate has gone down to 50, and his oxygen support has gone down to 50%. They will check another blood gas at 4 to see if he is still responding well to all of the changes. His blood gas at 10am looked good.

Mason spent some time awake this morning, a rare treat lately. He opened both eyes and looked right at me. It looked like he was really concentrating. I can't even describe how good that felt. I am hoping Dad will get to experience the same thing this evening.

Mason will continue to be slowly weaned off of the vent. When his pressure gets to 25, the surgeons will start to close the patch on his belly.

Monday, June 18, 2007

Progress

Yesterday and today we have noticed some progress with Mason.

Yesterday he was not very cranky at all. It was the first day where he did not get any extra doses of sedation. He let docs and nurses check him out without too much fuss. When he did get mad, he was able to calm himself down and fall back asleep. Today is a little more of the same. He received only one extra dose of sedation when he was mad during a dressing change. He also got upset a after having the hiccups but then fell back asleep.

Today, Mason has ditched another one of his blood pressure meds. Also, the medication he was maxed out on is now cut in half. This is a huge step for him. His blood pressure is even running on the high side today, so hopefully they can reduce the last medication even further.

The docs are also making small ventilator changes to try and slowly wean him off. This will be a long road, given his CDH severity. Last night they reduced his pressure from 32 to 31 and the breathing rate from 60 to 55. He tolerated both changes well. Today they reduced the pressure even further from 31 to 30. His blood gases are a little worse with the new 30 setting so we are just waiting to see if they will keep it here or go back up to 31.

Travis started back to work today, so Mason is stuck with only his Mom during the day. Travis will be by in the evenings to visit.

Saturday, June 16, 2007

Rest




Mason continued to be a little on the cranky side today. Travis and both agreed that he seemed improved over yesterday though. He let the kidney doc check him out (and uncover his blankets) and he only gave her the pouty face.


They removed his other chest tube today because it was basically falling out. The pediatric surgeons will put another one in, but only if they need to. Mason seems to be doing ok without it for now. They will continue to monitor his chest x-rays daily to see if he will need one. He seems much more comfortable without it and I think the docs don't want to mess with him any more than they have to.


Mason has ditched one of his blood pressure meds. He is on 2 meds right now (down from 3). He is maxed out on one of them and is at a very low dose on the other. We are sort of in a catch 22 right now since Mason is requiring so much sedation for his pain. The sedation lowers his blood pressure which makes it hard to wean off his blood pressure meds.


He is also slowly getting rid of his excess fluid. Until the fluid is at an acceptable level, they won't be able to change his vent settings. The docs seem to think that within the next couple of days they will be able to reduce his vent pressure (from 32 to 30) and slow his breathing from 60 to 50 breaths per minute. He will remain at 60% oxygen for now.


Mason's main focus for now is to rest. He was sleeping peacefully when Travis and I left for home this evening.


Mason's neighbor, Noah suffered a small setback today. The vent pressures have put a hole in one of his lungs. This is a common CDH complication and Noah will recover, but his lung will take a few days to heal. We are praying that Noah makes a speedy recovery so that he can have his hernia repaired soon.




Friday, June 15, 2007

Baby Steps

Mason had a couple of small setbacks which is very normal after a chest closure, although the doctors are surprised he did not suffer more setbacks. They expected things to be a little worse than they are. Mason is slowly coming down on his blood pressure med's. 2 of them are at very small doses. The other, which was maxed out is coming down slowly. Mason is also retaining some fluid which has made him sort of puffy. They have increased some meds to help him pee it off. After the medication was given this morning, he soaked all the way through his diaper and onto his bed in a matter of hours. They are also looking to decrease the amount of fluids they are giving him. They were giving him a little more than normal because his kidney numbers have been fluctuating on the higher side of normal. So far the vent settings have remained pretty high (60% oxygen) until he can get rid of some of his fluid.

We are sure Mason is sore because he is a bit cranky today. He starts to cry when the nurse even goes near him or when his blankets get uncovered. He also had one of his chest tubes removed this morning. He is pretty heavily sedated today because he keeps getting mad at the nurses and "desatting" into the 70's. This is the amount of oxygen his blood is carrying. When he is resting his saturation levels are in the high 90's.

Mason is now in a crib and is allowed to wear hats and socks. We will also be giving him a pacifier for his awake times. Apparantly he is the only CDH baby that LOVES to get his mouth suctioned out. He tried a larger pacifier last week and loved it although it was too big for him. Our nurse will try to find a smaller one for him today.

Travis and I got to "hold" him today. He is laying on a pillow like bed in a crib and the nurses let us cradle his bed in our arms. We are not sure if he liked it because he was knocked out from his sedation. We sure liked it though :)

Noah, Mason's neighbor, is off of ECMO as well. The PICU nurses are excited that both babies are now off of life support. They are actually fighting the NICU nurses to keep both Mason and Noah in the PICU.

Thursday, June 14, 2007

Chest is Closed

Mason had a good night last night. Our nurses are starting to get bored. This is a good thing.

Yesterday, the big concern was over Mason's blood pressure. They did an echo of his heart and found that the heart was in good shape and pumping well. They did see that the heart was not filling all the way with blood. This only means that Mason needed some more blood. They have to draw lots of blood to check vitals and he is still oozing some from his hand and chest tubes. They gave him more blood last night and his blood pressure rose. They were also able to cut one of his blood pressure med's in half. His vent settings were lowered slightly as well.

Today, the cardio-throacic surgeon closed his chest. The procedure went well. They went up on the settings on his vent for the surgery to keep his oxygen saturation levels and blood gas levels good. Today they will just be weaning the vent back to the settings from this morning.

Mason spent more time today with his eyes open. He was trying so hard to fight the sedation they gave him before his surgery.

Noah, the baby in the bed next to Mason had an ECMO trial today. Noah also has severe CDH, but on the left side which is more common (Mason's is on the right). We hope it goes well for them.

Normally, after the chest closure Mason would move from the PICU (Pediatric) to the NICU (Neonatal). We received word today that the NICU is full and Mason will stay in the PICU for the time being. We are ok with this because there is much more room in the PICU. We have also grown attached to many of his PICU nurses. After his chest tube is removed, Mason will be transfered from a stretcher to a crib.

Wednesday, June 13, 2007

Stabilizing

Mason has been off of ECMO for more than 24 hours and he continues to surprise us all (even the docs). He is still receiving quite a bit of support from the ventilator and blood pressure meds. These settings have not changed much since he came off of ECMO yesterday. I think everyone expected him to require more support in these first 24 hours. Even on the same support, his blood gases are coming back better than yesterday. Once these stabilize in a "good" zone, they will start to wean him off the vent pressure settings and eventually drop the oxygen levels. They are slowly weaning him off the blood pressure medications as much as his body can tolerate it.

His ultrasound showed no change with the bleeding in his brain. Eventually this blood will be absorbed by the tissue, but this will take a while. Although this is scary, Mason is still in there. He continues to get mad at the nurses (even when he is heavily sedated) and he moves both arms and legs. He opened his eyes for a while this morning and looked at us.

Mason will have an additional surgery to close his chest either tomorrow or the next day. They had originally thought about doing it today, but decided that a couple of days of rest for him would be better. I am sure that he agrees!

Tuesday, June 12, 2007

Off of ECMO

Lots of things have happened in the last 24 hours.

Yesterday afternoon, Mason seemed to be doing good and raised his blood pressure to acceptable levels. The doctors started to ween him off of blood pressure medications in hopes that we would be able trial off of ECMO in the next couple of days.

Yesterday evening, we received word that Mason had started to bleed into his brain. This is a common but serious complication when babies are on ECMO. Mason was a higher risk because of his prematurity and low blood pressure. The bleeds were small and the doctors felt it was time to take him off of ECMO before anything got worse. The bleed was in the tissue of his brain which may affect some function. However, since the bleed is small, it should heal up. Babies can overcome some of these issues with time and therapy.

Mason was faced with a "permanent" ECMO trial this morning. He was taken off with the knowledge that he would not go back on if anything happened (because of the risk of further brain bleeding). The trial went well and when Mason stabilized somewhat he went into surgery to remove the cannulas in his heart. His chest will stay open for 24 to 48 hours.

So far, Mason has been out of surgery for 3 hours and seems to be doing well. However, the doctors have told us that the first 24 hours are critical and many babies will get sicker when coming off of ECMO for this period. Because Mason was forced off of ECMO, he was taken off with ventilator settings higher than normal and many more medications than normal. He will have a very rocky road ahead of him.

Monday, June 11, 2007

Still Fighting

Mason has not shown much progress over the weekend. He is still having some issues with bleeding out of his chest due to the blood thinners needed for the ECMO circuit. The ECMO trials have been put on hold until he can maintain his own blood pressure. Right now, even with the help of ECMO and 3 blood pressure medications, Mason is having trouble maintaining an acceptable blood pressure. Until his body can do this on its own, Mason will not be coming off of ECMO.

We also found out today that Mason has developed a bacterial infection in his chest. This is common for babies who have an open chest while on ECMO. He is being treated with some heavy duty antibiotics. The Cardio surgeons are going into his chest today to see if they can remove the infected clot (without making him bleed any more than he already is). This infection will not stop an ECMO trial if Mason can raise his blood pressure.

We are continuing to hope and pray that he will pull through this.

Friday, June 8, 2007

Waiting Game....





Since Mondays incident, Mason has made some daily progress. Today, his lung volumes are looking good, his blood pressure has increased slightly (a good thing), and his ECMO flow is slowly coming down (needs to be low for another trial).
Mason continues to show his personality to the nurses and doc's. He pouts at them when they change his diaper, change his position, give him an ultrasound, etc. He really gets mad when they change his dressings (looks pretty painful). He also gets upset when his warm blankets are pulled back. We have included a couple of pictures, one of his pouty face and one of him sleeping.
We are hoping for an ECMO trial in the next few days. The doc's seem to want to be very conservative when it comes to this next trial, in case something like Monday happens again. Mason sure suprised us all when he pulled through Monday's incident. Mason sure is a fighter and has been through a lot in the last 2 weeks. His Mom and Dad are very proud!




Monday, June 4, 2007

The Roller Coaster Continues....

Sunday Mason continued to progress and drop more fluid. The doctors seemed optimistic that we would be able to run the first trial off of ECMO on Monday morning. Mason also opened both of his eyes and got a good look at his Mom and Dad for the first time.

This morning, Mason's chest x-ray looked very promising and he was almost back to his birth weight. These were the most important factors for the first ECMO trial to take place. An ECMO trial is when his ventilator settings are turned up while the life support cannulas are clamped down. Mason and the vent work together to maintain his "stats".

Here's where the roller coaster starts....Mason had a very successful first 2 and a half hours off of ECMO. His numbers did not change very much at all. Near the end of the trial (planned for 3 hours), he started to hyperventilate which increased the carbon dioxide in his blood gases. Based on this, the surgeons did not feel Mason was quite ready to completely come off of ECMO today. When the life support cannulas were unclamped, the ECMO circuit had blood clots (despite efforts to keep the system free of clots). They had to pump a lot of blood and fluid into the circuit, which went into Mason, however the flow out of the circuit had a blockage. All of this pressure built back up into his chest, causing his lungs to hemmorage.

Three emergency surgeries followed....one to readjust the cannula in his heart (on the ventricular side) to establish the circuit flow. Another to put an additional cannula directly into his heart (giving him now 2 cannulas in the heart). The third surgery was to remove the old cannulas from his neck because of the clots.

Right now Mason is stable and trying to recover from all of this. The surgeons feel that his lungs will recover from the fluid and hemmorage in 2 to 3 days. When his lungs have recovered, they will attempt another ECMO trial.

Saturday, June 2, 2007

Rollar Coaster

The last few days have been a big rollar coaster for Mason. After the ECMO circuit was changed on Wednesday, Mason bloated up (as expected). However, this time he did not dropped the excess fluid as expected. Over the coarse of Thursday and Friday, the doctors were getting less optimistic and seemed to grow more and more concerned about his lack of progress. They tried giving him medications to increase blood flow to the kidneys, help improve his fluid withdrawal rate, increase his blood pressure, etc. and none of them seemed to be working. Suddenly his urination had nearly stopped and it appeared that his kidneys were starting to shut down based on the results of his daily blood tests.

This morning the surgeons had a cathetar reinserted to see if there was a possible blockage in his urinary track. Sure enough, once the cathetar was placed he started peeing at an extremely high rate. We will know for sure tomorrow morning whether the cathetar has totally fixed the issue once we see his blood test results, but all indicators are that the issue has been fixed. The medical staff is once again optimstic and have starting talking about how close Mason is getting to trying to take him off of the ECMO circuit.

As of this evening, Mason has already dropped most of the extra fluids he gained since Wednesday afternoon. He has also started moving around a lot more, moving his arms and legs more than ever before. Late this evening, he has even started opening one of his eyes (the other eye is still pretty swolen).