Home At Last...

After a 24 hour whirlwind full of CPR classes, medication training and mind numbing insurance issues Matthew strolled out of the Pediatric Intensive Care Unit this afternoon to a standing ovation from the PICU staff that immediately brought tears to our eyes.

Our heart goes out to another family we got to know at the hospital who had a little boy one week before Matthew was born and is having another surgery on Monday. His condition is very similar to Matthew's and they have no idea when they'll get to take him home. After going into the hospital wondering why this was happening to us, we walked out of the hospital feeling truly blessed....like we're one of the lucky ones.

Taylor is absolutely ecstatic to have her little brother home tonight. She was able to hold him for the first time and is already having trouble keeping her hands off him.

Thank you all for the unending prayers and encouragement. We truly believe that having Matthew home is a miracle.

Homeward Bound!

Matthew had another great night and there is talk of sending him home tomorrow!

He's feeding requirement is up to 60ML per feeding. He took 50 to 55 ML at each feeding over the past 18 hours. Mom is going to spend the day at a special CPR class and learning about the 5 medicines (Lovenox, Enalapril, Aspirin, Prevacid and Lasix) he's going to go home on.

One More Step...

Matthew is doing great. We're just waiting for him to get up to speed with his feedings and we'll get to take bring him home. He needs to be able to eat 50 ML (about 1.7 oz) of food every 3 hours for this to happen. He's worked his way up to 30 ML on average and did take 50 ML in one feeding today. It's looking more and more like next weekend is a possibility. What he doesn't take through the bottle is given to him through the feeding tube in his nose. Please pray that Matthew quickly builds the stamina to handle this much food so we can get him home where he belongs.

Bliss...

Matthew came off the oxygen this afternoon and his oxygen saturation actually went up (I don't know why). They also took out the arterial line which means Mom got to feed him and hold him for several hours tonight. One big stepping stone for heart babies after they come off the narcotics and the oxygen is getting them to eat. It's usually that last big issue to overcome before they get to go home. That's not going to be an issue for Matthew. He did well in each of his first 2 feedings.

After getting our hopes up last week with suggesting he may get to come home around Thanksgiving his Doctors are being more conservative with giving us an revised estimate but with the significant improvement in his right lung and his overall improvement we're hoping/planning to bring him home by next weekend.

More Progress...

Matthew is making so much progress I don't know where to begin.

He will hopefully be weaned off of his oxygen today (he's doing so well he's going straight from the hi flow nasal cannula to weaning and skipping the regular cannula) and have his arterial line removed which means Mom will get to hold him and feed maybe as soon as tonight. This also means he'll get to wear regular pajamas which is surprisingly very exciting to us right now. He's also moving out of his warming bed and into a regular crib. His heart rate has stayed where we want it and he hasn't need to be "paced" in a few days so he may come off the pacemaker soon. He's been weaned off all of his narcotics without too much trouble, he's had his diuretics reduced to one dose per day and they're starting to steer his medications to what he'll be on when we get to take him home.

This is all wonderful news and I'm probably leaving something out. What a blessing!

~ I almost forgot...the right lung is starting to clear up. His x-ray from this morning showed significant improvement compared to the x-ray from Wednesday. They still don't know what is causing the fluid build up.

Happy Thanksgiving!

Happy Thanksgiving. We're very thankful that Matthew had another good night last night and has been looking very good for a few days now.

Hello to everyone in Lincoln today. We miss you!

Love,
Craig & Amy

Inconclusive...

After reviewing it for several hours, Matthew's Doctor's determined that his CT Scan was inconclusive. They have since gone back and reviewed all echocardiograms he's had since he was born and have determined that there are no malformations of the lung (yes!) and the veins directing blood to and from the lung appear to be working properly (yes!).

We are now looking at the possibility that the shunt is directing more blood flow to his left lung than the right lung (they think this is unlikely) and the possibility that the excess fluid on the lung is lymphatic fluid which would be left untreated with the hope it will clear up on its own.

We're on such an emotional roller coaster it's exhausting.

Lung Concerns...

Matthew did well off the ventilator last night. They were able to lower his oxygen levels from 50% to 40% last night and lowered it again to 30% this morning. The oxygen he's getting now is given passively through his nose rather than forced into his lungs via the ventilator.

His Doctors have lingering concerns about his right lung which doesn't seem to be clearing up. The 2 biggest concerns here are that the shunt that was placed in his heart is some how directing more blood flow to his left lung than the right and/or the veins feeding blood to his right lung didn't form properly. The best case scenario is that the problem is just mucus build up that he hasn't been able to get rid of and they may need to go into the lung with a sort of scope and suctioning device to get rid of the mucus. We haven't been told what the remedy would be for the other 2 possibilities but we're fearful that they will require opening his chest back up. A CT Scan is scheduled for some time this morning. We should know the results by early afternoon today.

Feeling Good...

Matthew is 2 weeks old today and he decided to celebrate in style. The ventilator has been out for about 9 hours now and he's still going strong. He appears to have the energy to continue breathing on his own. Coming off the ventilator also means he will be sedated less and will be awake more. He was awake for a solid hour this evening and was very interested in everything his Mom had to say. We were able to interact with him more in that one hour than we have in the past 9 days combined.

But, Matthew's congenital heart disease will keep us humble ...around 5:00 tonight Matthew had to have a pacemaker attached to his heart. This is a relatively common event and thankfully they had left the electrodes attached to his heart from surgery so all they had to do was plug it in. He's a pretty relaxed boy from a heart rate stand point and they don't like babies in the PICU to drop below 110 beats per minute. There have been a few times over the past few days that Matthew's heart rate has dropped to the mid 90's. When it happened again this afternoon they decided it was time to connect a pacemaker to ensure he stays at or above 110 beats. This shouldn't be too much of an issue. Hopefully he will be able to come off the pacemaker before he comes home.

This wasn't a bad day though...this is definitely a day we are celebrating.

Ventilator Comes Out...

Matthew was weaned off the ventilator completely at 1:30 this afternoon. The first 15 minutes were frantic and extremely scary as his blood pressure and heart rate shot way up but then he settled down and relaxed. They are watching him very closely and drawing blood every 20 minutes to make sure his acid levels and blood gases stay in line. So far everything looks good.

His voice is a little raspy from the ventilator tube but we got to hear his little voice let out a soft cry for the first time in 9 days and it was beautiful.

Finally! More Progress...

Matthew is continuing to show signs of progress. They've continued weaning the ventilator. He's down to a ventilator respiratory rate of 12 and he's back on 21% oxygen (room air equivalent). He's handling it all very well. He's had no issues with his blood acid level for almost 24 hours, his saturation levels are solid and he's maintaining his own respiratory rate at 38. The next step is to reduce the ventilator to a respiratory rate of 10 and then if he's still going strong they may remove the ventilator altogether later this afternoon.

They are warning us that more often than not when they remove the ventilator babies will do well for 24 hours and then tire out from doing all of the breathing on their own, which he hasn't done for about 9 days. If he tires they will put the ventilator back in for 24 hours to give him a rest and then try again.

There is still concern about the right lung although the doctors have diagnosed it as a mucus build up issue (I don't remember the exact name) and not an issue with the lung tissue itself. This is good. They're planning to do more Pulmonary Toileting (that's a new one for me) which just means frequent turning, pats on his back to break up the mucus and suctioning of the lung.

They are now so confident in his kidney function (with the continued use of diuretics) that they have taken his catheter out. They will now start weighing his diapers to ensure his kidneys are still functioning but they won't need to watch it as closely. They told us yesterday that he will be on diuretics at least until the 2nd surgery which will be between 4-6 months of age.

He's also getting some of Mom's milk through a feeding tube again. He's handling it well and their starting to hear bowel sounds which is a good sign.

Go Matthew!

Another Grandpa & Grandma Visit

Funny thing today...It appeared early on today that Matthew's Doctors had already decided that there was something wrong with the tissue in his right lung and wanted to get a CT Scan. They decided that, even though his numbers didn't look like he could handle it, they were going to begin aggressively weaning him off the ventilator today. They determined that once his oxygen levels started to drop as a result of the weaning they would be able to justify the CT Scan on his lung.

So they started weaning. They lowered the ventilator rate from 32 breaths per minute to 26, then 22, then 20, then 16. When we left there tonight his oxygen saturation level was a solid 77 (right where we want it) and his blood acid level had been reduced to where it should be. He was also breathing at a solid 40 breaths per minute which meant he was taking 24 of those completely on his own. He's not out of the woods yet and he still may have something wrong with that right lung, but man it was a good day today.

Concerns...

Matthew had a relatively quiet night last night. His blood acid level increased again which seems to be a nightly occurrence now.

Matthew had his ventilator changed this morning. He developed a leak in the ventilator about 3 days ago. They've been trying to correct it by moving his head into different positions but after a few minutes the leak would kick in again. The ventilator did not fit snugly into his esophagus so every time the ventilator would breathe for him air would escape around the hose and come back out of his nose. The new ventilator hose has an inflatable cuff that will fit tightly against his wind pipe and eliminate the leak. The concern here isn't so much the switching of the ventilator hose but the fact the procedure required more paralytic and pain medication which his kidneys really seem to struggle with.

Right lung function is another developing concern. His Doctors are hoping that by eliminating the ventilator leak his right lung will fully inflate and begin functioning correctly. It appears this lung hasn't functioned correctly since he was born. If the lung doesn't show improvement by early afternoon he will have a CT Scan on the lung to see if it will require some additional work.

What a day...

Matthew's good day has continued. He is now completely off the paralytic medicine and the diuretics as his kidneys have continued to function well all day. His swelling is down so much that he looks like a completely different boy this evening compared to yesterday.

He is moving more this evening and will grasp and hold onto our finger when we place it in his hand. He hasn't opened his eyes yet but he's still on so much pain medication that may take a few days.

They were also able to back his ventilator down to 25% oxygen and he still maintained oxygen saturation levels in the mid 80's. Hopefully they can back the ventilator down to 21% oxygen tomorrow (which is the equivalent of room air) and still maintain these saturation levels.

The surgeon stopped in this evening to check Matthew and was extremely surprised by his kidney function and reduced swelling today. He said that if Matthew continues to behave he should be able to close his chest on Friday if not late Thursday afternoon.

He also checked the blood flow to his right arm (he could not save the artery to this arm during surgery) and was very pleased. He still believes Matthew will have no trouble with the arm going forward.

Craig is going back to work tomorrow which isn't going to be easy given all we have going on. Please continue to keep Matthew and all of our family in your prayers.

Love,
Craig & Amy

Good News!

Matthew is having a great day. His kidneys kicked in last night and he's peeing like a race horse. His swelling is down significantly today to the point that he's starting to look like himself again. His oxygen saturation is now up to 82 and they're starting to wean him off the paralytic medicine. He hasn't opened his eyes yet but he is starting to move a little.

If things continue to go well they will likely close his chest Thursday or Friday this week. Once his chest is closed he will likely swell again and his oxygen saturation will decrease. Within a day or 2 after closing these numbers should improve once again.

We're taking one step at a time and this is a big step he took today. We're very excited about his progress.

The Fighter...

Matthew had a pretty good day today. His Doctors are still trying to find the right balance between ventilator settings, blood volume and medications. Because of this his stats were all over today with his carbon dioxide levels trending a little high and his oxygen saturation and urine output trending a little low. The Doctors aren't overly concerned at this point because he's barely 24 hours out of surgery but they'll want these numbers to improve tomorrow.

Once Matthew recovers from surgery his oxygen saturation is what will be monitored the most leading up to his 2nd surgery which will be between 3 and 4 months of age. Ideally we'll take him home with oxygen saturation levels in the mid 70's which is where he started today. When we left he was in the upper 60's.

Matthew continued to try to breathe on his own most of this morning taking a half breath in between each full breath from the ventilator. Around noon they increased his paralytic medicine and Matthew relaxed and let the ventilator breathe for him.

We're praying that Matthew starts to stabilize tomorrow so his Doctors can focus on the next step which is reducing some of his swelling and getting his chest closed. This will hopefully happen sometime between Thursday and Saturday this week.

Amy and I are holding in here ok. Every time we walk in his room and see his little body with his chest open we talk about those little bright eyes that would stare back into ours when we talked to him during the last few days before surgery or how he would completely relax when his Mom would rub his feet and then fuss as soon as she stopped. We want to see those eyes again.

Update

Matthew had a pretty good night last night. The Doctors are trying to walk a fine line with maintaining the right levels of medication and fluid. His blood pressure and urine output dropped last night so Matthew was given blood and extra fluids and a diuretic to increase his urine output.

Despite being sedated and on a ventilator the little guy is already trying to breathe on his own which is good but the Doctors would prefer that he wait a few days to do this so they can get his chest closed first. If he keeps trying they will have to increase the paralytic medicine and they don't want to do that.

His oxygen saturation levels are now in the low 70's which is down from the mid 90's pre-surgery. The lower levels cause his fingers and toes to take on a slight blueish tint.

Despite these concerns the Doctors seem very happy with how he's doing. His heart is pumping very strongly and he's holding up well.

I'll add another picture tonight. It won't be pretty but it will give you an idea of what he's going through.

Surgery Update # 5

According to Matthew's surgeon the surgery was a success. The next 12 to 24 hours are critical for him but everything appears to be going well. The surgery revealed yet one more defect in Matthew's heart. His right subclavian artery which is the main artery supplying blood to his right arm didn't form correctly. His surgeon spent an hour and a half trying to save it but was not able to. The good news is that the human body is resilient and Matthew's body will soon form new blood vessels to supply blood to the arm and he should have no issues with arm function. The only real side effect from losing this artery will be an inability to get a accurate blood pressure reading on the right side. It will otherwise function as it should.

That's it for updates today. We've only been able to see him for about 5 minutes since he came out of surgery and we're now able to go spend time with him. We'll provide another update tomorrow.

Thank you for your prayers and concern.

Love,
Craig & Amy

Surgery Update # 4

Good news! Matthew came off the heart/lung bypass very quickly and they were able to finish up the procedure ahead of schedule. We're going to talk to the surgeon around 5 and then we'll get to see him. Thank you all so much for your prayers today. It has meant the world to us.

Love,
Craig & Amy

Surgery Update # 3

We just received word that the repairs have been made without complication. They are now starting to wean Matthew off of the heart/lung bypass and beginning to warm his heart. Hopefully he will begin his own cardiac activity within the next hour. Once his heart starts beating on its own they will partially close his chest leaving approximately a 2 inch gap and place a clear protective barrier over his heart. We're expecting to hear that he successfully came off the heart/lung machine by 4:30 and they have finished the procedure completely somewhere between 5 and 6:00.