Another cute video

So, the SVT episodes are becoming a lot less severe.  Yesterday he only had 2 in a 24 hour period and each one only lasted around a minute.  He also self converted with both episodes.  He is on an increasing dose of Propanolol and Flecainide orally, and his Esmolol drip has been weaned to around 350 mcg/kg/min.  We're crossing our fingers that the oral medication dosages are finally therapeutic.

If it's not one thing it's another in the life of a premie.  Now the poor little guy in anemic.  His hematocrit is around 25, which is low and makes him have even less stamina.  His lab work has also been a little suspicious.  In a nut shell, his WBC count is very low. The doctors have run more tests for infection and other things.  Basically his immune system is very shut down right now, and he's susceptible to infection.  He was started on antibiotics yesterday.

His lungs are wet again.  Because of all the medications he's been getting through his PICC line, he's a bit fluid overloaded.  In premies, the extra fluid they receive has a tendency to go straight to their lungs.  So, he's on the RAM (c-pap) cannula with a peep of 6 and around 30% oxygen.  He received a half of a dose of diuretics yesterday to help pull some of the fluid off his lungs. He tires easily, but otherwise acts appropriately. No breastfeeding while he's on the RAM . . . bummer for him.

On a positive note, he's still tolerating his breast milk feeds.  A couple of days ago, they started adding even more calories to his milk.  They add a fortified powder to each ounce of breast milk, bringing the caloric content up to 24calories/ounce.  He's having the nice seedy breast milk poops and peeing well. His abdomen in nice and soft and he loves his pacifier.

I will most likely only be updating the blog every couple of days until I can get Gretchen transitioned to the job.  She spends around 15 to 16 hours in the NICU every day, so hopefully she can start journaling her experience right here.

A super cute video today

This is an adorable video to tide you over until I can post an update.  I will do my best to post an update tomorrow.  I'm hoping to get Gretchen trained as soon as possible to take over posting.

Update

Once again . . . sorry for the delay updating.  Things have been a bit hectic around here.  Poor little Crew baby has really been struggling with more and more prolonged SVT episodes.   He even has the Cardiologist frustrated and on the phone consulting with other hospitals.  The doctors have been adding and removing medications and turning drips up and then back down again.  As of tonight, his Esmolol drip is running at 600 mcg/kg/min, which is an extremely high dose.  They've also started the oral medications,  Flecainide and Propanolol.  The poor kid is medicated to the maximum.  His oxygen saturations and respiratory effort have been stable with all of the episodes so far which is a huge relief.  But, with each prolonged episode, his parents become more and more stressed. The longer his heart rate remains in SVT, the more damage it might cause and the more life threatening it becomes.  He'll get another EKG and an echocardiogram tomorrow to check on his heart function. Prayers are needed once again to help find a treatment for this little man.  We need to find the medications that will stop the SVT, so that he can grow and get stronger before an ablation is necessary.

Crew is 5 pounds today.  He is digesting his breast milk in spite of all the issues with his heart . . .  Thank goodness!  He went to the breast again on Sunday, and this time he latched on and sucked for about 5 minutes.  He hasn't had the opportunity to nurse again since Sunday, because of all the SVT episodes.  He's pooping and peeing like a champ.  He is still on a nasal cannula at 2L, and his oxygen requirements are up just a bit to around the mid 30s.  He's alert and awake more and more and as cute as a button.

Getting Stronger

The medications seem to be kicking in today a little better.  Crew has had 3 very short episodes of SVT that converted themselves . . . each one lasting about 5 to 10 seconds.  He's been on the nasal cannula and doing well today.  He got to try to "recreational" breast feed.  This is when mom pumps first and then the baby gets to learn and get comfortable with the activity.  He did very well and was super smiley throughout the feed.  He didn't latch, but he enjoyed just hanging out with mom.

Our little Smiley boy

Momma snuggles

cute little piggies

Sweet little hand

Nickole was his RT today and gets the credit
for weaning him to the nasal cannula

A Frustrating Day!

Yesterday was a bit frustrating!  Crew had another episode of SVT  that lasted about 40 to 50 minutes.  Throughout the process of conversion, they first try the non-medicine route.  This can be very stressful for the parents to watch.  They will deep suction trying to elicit a cough, they also try to gag either using a suction catheter or finger, and last they will try to get him to "bear down" to push while pooping with an enema.  When none of these options work, then they bust out the Adenosine. Well, it took 4 attempts with increased doses to finally convert him.   Then 2 hours later, he did it again.  This time one dose did the trick.  He went the entire night without an episode.  This morning he had a small little episode that converted with the enema trick.  The Cardiologist is supposed to be coming in to meet with us this morning to discuss all of the above.

Crew weighs 4 pounds 13 ounces today.  Nickole his RT (first time she's had him) came in and switched him from the RAM to a hi-flow nasal cannula.  Hopefully he will have the stamina to tolerate this.  This cannula is smaller and softer and easier to manage.  He's now having yellow seedy stools . . . hurray!!  Should I post a photo??  He's still a little slow to digest his food.  He's now getting 13mls every three hours and moving about half of that through.  

I'll report more later . . . with photos.

More SVT

Crew had another episode of SVT at 3 a.m. this morning.  The nurse was able to do some deep suctioning, causing a vagal response (drop in heart rate), which converted him into a normal rhythm.  Then somewhere around 9:30 a.m. he did it again.  This time the suctioning didn't work, neither did the ice-to-the-face trick, so they had to use Adenosine again . . . which worked well.  So, the cardiologist was called again and the decision was made to add the drug Digoxin to his medication regime.  As of 9:30 p.m. he hasn't had any more episodes . . . did I say that out loud?

He is still having some issues digesting, or at least emptying his stomach.  He's being fed about 10cc's of breast milk every 3 hours and only digesting about half of that.  He started to have some transitional stools today . . . a sign that at least some of the milk is getting through.  He's also continuing to gain real weight.  His current weight is 4 pounds 12 ounces. 

He is still on the RAM cannula with his FiO2 requirements around 21 to 25%.  His work of breathing has improved and he seems to be comfortable.  The poor guy doesn't have much stamina.  He is awake for his cares (diaper change and vitals) and then he's out again.  He got another bath today, and was completely exhausted afterward.  He is still as "smiley" as ever.  He is especially happy when his mommy and daddy hold him.

Crew loves his binki's.  He just can't quite
 hold them in by himself yet.

Snuggle time with Aunt NeeNee

Snuggling with Mommy after his bath

A good day . . . A not so good day

Finally!  Crew has been pooping all night.  He's having large meconium filled diapers and keeps going and going.  Whew!!  I think we're finally on our way.  The breast milk should be able to move through now, and we should start seeing transitional stools and then on to the healthy yellow poo.  Hurray!!  Enough with the poop talk!!  If you can't tell, I'm a little excited about this breakthrough.

On to the bad . . . poor guy had a couple SVT runs last night, and one today.  He hasn't had that issue in over a week . . . maybe even two weeks.  They had to give him Adenosine each time to convert him to a normal sinus rhythm. He tolerated the episodes well, and converted easily and quickly with the medication.  The doctors think that he just outgrew his medication dose, so they increased his Esmolol drip for now.  The cardiologist doesn't seem too concerned, so we won't be either.  Well, we'll try not to be anyway.

A little smile for the day!

Wearing the outfit that Grandma Schow bought him.
 We thought it would be too small, but it fit perfectly.

This is a sign that hangs above Crew's bed

Those of you who are squeamish  . . . look away.
 This is the kind of poop we've been looking for.

Someone's wide awake

Day 23

Today was another good day.  They tried to take Crew off his RAM cannula in exchange for a high flow nasal cannula, but he just wasn't ready.  They've held his feeds at 8cc's over 2 hours for now.  His bowels still don't seem to have emptied out the meconium.  For now, his belly is soft and he's resting comfortably so his is just on "watch and wait" mode.  

Crew's weight is 4 pounds 10 ounces today.  This should be real weight now . . . the water is gone.  Hope to post more pictures tomorrow.

Bath Day!

Crew got his first real bath today.  He's been swabbed down with sterile towelettes a time or two, but has been too unstable for the real thing until now.  He loved his bath and only cried when we washed his armpits and neck . . . don't blame him.  His mommy put some Baby Magic baby lotion in his hair after the bath  . . . he smells so yummy now.  Then, she dressed him in his first little premie jammies.  He was so tuckered out after his bath, that he literally didn't move for the next two hours.

He got another super-dooper-pooper enema today and gave us another big snake-like poop.  I'm sure there is a little more of that meconium in there, but it's moving out slowly but surely.  He's still getting his breast milk on a pump through the tube in his mouth, and working hard to digest it.

He seems to be doing well on his RAM cannula today.  His FiO2 requirements were around 25% today.  His breath sounds are better and his work of breathing seems to be easier.  Keep up the good work baby boy! 

Crew's first bath . . . had to do the turban towel thing

All stretched out during bath time

This little guy has been full of smiles . . .
I think he's feeling so much better.

All dressed and ready for a good nap

3 Weeks New!

Smiling during cares tonight 

Crew is 3 weeks today.  It's hard to believe that it's been 3 weeks already.  He's doing well today.  His Oxygen requirements are down a little . . . around 26 to 30%.  His x-ray still looks "wet" or white, but he's maintaining with the RAM cannula.  Hopefully he'll be able to "pee" off some of that fluid and breath more easily.

He got a Roto-rooter type enema today.  Sort of like a kolonic for an adult.  He passed the largest poop he's had so far.  I think that's why he's smiling.  He still has more of that darn stuff to pass, but every little bit counts.  The doctors have increased his feeds.   He's now getting 4cc's of breast milk on a pump over 2 hours then his feeding tube gets vented for one hour.  He's showing signs that some of the milk is digesting, but until he clears out all the meconium, the entire volume won't be able to go through.

His Morphine drip has officially been discontinued.  The nurses are doing screenings on him to make sure he isn't in pain.  He's off of antibiotics as well.  Crew loves to be swaddled and sleep on his tummy. His surgical incision has healed very nicely.  The steri strips remain, but otherwise things look great.  Another good day in the books!

Day 20

Sorry, for not posting yesterday. . . I was a little busy.  Crew is still hanging out on the RAM cannula.  His oxygen requirements are going up just a bit.  He's currently on anywhere from 30 to 40%.  He's loving his pacifier and the times his mommy and daddy hold him.  Yesterday they started some small breast milk feeds.  He gets 0.5cc's per hour on a continuous drip.  So, not very much.  The doctors just want to introduce his gut to the breast milk and start to restore the flora.  So far he hasn't shown any intolerance to the milk he is receiving.  He's getting glycerin enemas every 6 hours, and having small stools with each one.  We're still trying to clear out all the meconium. We're hoping the next several days will be status quo.

Crew weighs 4 pounds 7 ounces this morning. He's getting cuter every day.  I'll post more pictures tomorrow.

Daddy's turn to hold

He looks so tiny in his daddy's arms

They eventually both fell asleep

Awake and Alert

So far, so good!

Just a quick update.  Crew is doing well on the RAM cannula.  This morning his x-ray looked pretty hazy and white.  The doctors decided it would be best to remove the tube from his nose that goes to his stomach (Replogle) and put in through his mouth instead.  The tube was just way too big for his little nostril and was taking up all the space, not allowing any air to pass through that side.  It's hard to breathe through one nostril.  They removed  the tube from his nose and then placed larger airway prongs to allow for more consistent pressure to his lungs.  He seems to be doing better with this set-up, and his FiO2 has weaned back down to 29%.  His stomach was full of air on this mornings x-ray, and because of his hazy chest, the doctors decided to wait yet another day to start his feeds.  Once again, we don't mind them being very cautious with our little guy.  So, we'll possibly stop the suction tomorrow and then feed on Saturday.  He did have a very small poop with his enema last night.

Gretchen held him again this morning for a couple of hours . . . and he loved it.  Daddy gets to hold him tonight . . . an early Father's Day gift.  He was more awake and alert today than I've ever seen him.

A Very Big Day!

Crew is finally off the ventilator!  He's doing well so far, and that is great.  We're all praying that he will get stronger and stronger with every tiny little breath.  It is not uncommon for little guys with his type of illness to get tired out and require re-intubation.  They left the Replogle tube (tube in his nose) in place, and put him on respiratory support called the RAM.  This is a type of C-pap, but less supportive than full C-pap.  We hope that he will maintain on this support or even less support like a nasal cannula.  In the video above you can see the breathing tube coming out, and the placement of the RAM prongs.  If you listen closely you can hear his raspy little cry.  Don't worry, his cry has become much stronger and louder already.

Poor guy has been a little fussy since coming off the ventilator, but has discovered sucking.  He loves to suck on the pacifier and it seems to calm him right away.  He also loves to snuggle his mommy.  She was able to hold him skin-to-skin today for over an hour and he loved it.  He rested more quietly and calmed immediately.

He's still not feeding.  The surgeon explained that we are going to take things extremely slowly with his feeds.  They will turn the suction off the Replogle tomorrow and see how his stomach responds to the excess gas.  Then, hopefully by Friday, the feedings will start.  We don't mind the fact that they are taking things slowly . . . the slower the better.  We don't need any more set backs.  He hasn't pooped since before his surgery, so we need to get those bowels moving. 

We are not out of the woods yet . . . not at all.  We still need your prayers.  Crew has come a long way . . . but still has a long list of obstacles to overcome.

Skin to skin with mommy

Precious little face

Binki boy . . . a bonus video

The Big Test

The fluoroscopy test went as well as could be expected.  A team of about 6 people transported Crew down the elevator and through the halls of St. Lukes to the x-ray department.  The surgeon met us there and explained everything to Gretchen while the test was being performed.  Crew's little stomach filled up with barium and no leaks were identified.  Then, the wait began for his stomach to empty through the pylorus and into the intestines.  We waited, and waited and began to make plans for what was next, then all of a sudden the barium moved through.  The whole room let out a big sigh.  It was such a relief to see that things were working. He tolerated the procedure well.

The surgeon and the Neonatologist had a pow-wow and decided that no decisions would be made today.  They will wait to see what the morning x-ray looks like.  If his lungs look more clear and his ventilator settings are low enough, the plan is to take out his breathing tube.  If this goes well, then they will start a continuous slow drip of breast milk through his naso-gastric tube (the tube in his nose that goes to his stomach).  So, we will patiently wait for morning and pray that his lungs will clear up and be ready for the next step. 

Crew weighed 4 pounds 5 ounces . . . officially below birth weight.   If all the above is good and goes without a hitch tomorrow, Gretchen will get to hold her little guy for the first time. 

Chest Tubes are outta here!!

Today the chest tubes came out . . . hurray!!  Let's say our prayers that the fluid will not re-accumulate.   His skin is reddened from the tape removal, but otherwise he took it like a champ.  The ventilator settings are low and his FiO2 was in the low 20s all day. 

Tomorrow Crew will be one week post-op and will go to fluoroscopy to check the surgical repair site in his stomach for leaking.  The original plan was to start feedings after we make sure things are healed.  However, now that the chest tubes are out . . . the doctors are eager to get him off the ventilator.  So, I'm guessing that is what will happen first.  Once he is stable off the ventilator, then the feedings can begin.

He is getting more and more alert and even starting to grab at his tubes.  We gave him his first "binkie" today . . . he was a little sleepy at the time, but I think he's going to like it.  Today was another very welcomed good day! 

His chest x-ray after the chest tubes were removed.

Just a bandage and some redness where the chest tubes were.

His first binkie . . . the premie one's only come in purple.

2 weeks old today

I love this little face

Terrel's not a bit afraid to get in there and help the nurses with their assessments

His skin is getting loose from all the water loss.

Dad and mom admiring their little guy

All his numbers look great today!

Today was a pretty darn good day.  Yesterday and throughout the night, Crew's chest tubes stopped draining as much fluid.  The doctors came in first thing this morning and decided to put the chest tubes to water seal.  Basically, they just turn the suction off, which makes them stop working.  They are still in place, just in case he should need them. But if he is stable throughout the night, they plan to pull the chest tubes out in the morning.  This is a good step in the right direction.  Now, just because they pull them, it doesn't mean that the fluid won't re-accumulate and he'll have to have new tubes placed. We will be crossing our fingers that the fluid doesn't return or build up.

Crew's weight this morning was 4 pounds 9 ounces and with the soaked diapers he's had today, I'm guessing he'll lose a few more ounces tonight.  He's starting to look skinny and the suture lines in his head are overlapping . . . completely normal.  Once again, all of this weight loss is still welcomed. He was very expressive today. He's moving around a lot more and smiled several times.  His Morphine drip was even weaned down a bit more.  It's so nice to see him wake up, and his smile was an added bonus today . . . we all needed that!

Crew sends you all his Love!

Feeling better today

The first smile caught on camera

A Likely Diagnosis

WARNING . . . this is a long post!

The Neonatologist sat down with all of us this afternoon to explain the latest Cardiology report.  She told us that according to the last few EKG's,  it appears that Crew has a syndrome called Wolff-Parkinson-White (WPW). This diagnosis explains the SVT and the arrhythmia's that Crew has been experiencing the past few days. WPW is a heart condition in which there is an abnormal (extra) electrical pathway in the heart.  Normally electrical signals in the heart go through a certain pathway that helps the heart beat regularly. The wiring of the heart prevents extra beats from occurring and keeps the next beat from happening too soon.  People with WPW have an extra pathway that this electrical signal may choose to take causing a very rapid heart rate (SVT).  This syndrome is treatable with medication (beta blockers).  It is also mostly curable with catheter ablation or burning/freezing the extra pathway.  Crew is way too little and young for an ablation, so he will be treated with medications for now. He has been on an Esmolol(beta blocker) drip since a few days of life that is keeping the SVT under control, so no extra treatment is needed at this time. This syndrome was diagnosed by the Cardiologist who is covering the weekend.  It wasn't detected on his first few EKG's most likely because of all the medication he was being administered at the time. Terrel and Gretchen want to speak with Crew's main Cardiologist when he gets back into town, to confirm the diagnosis. 

So, for now . . . we are in a holding pattern.  We are waiting for his stomach to heal.  Meanwhile, he has to remain on the ventilator.  And, because the chest tubes are still draining they will remain.  His lungs have been sensitive to fluid changes and are requiring frequent ventilator changes.  He is keeping all the medical staff on their toes. And, we are all developing ulcers from stress and worry.  Typically, premies are extubated (taken off the ventilator) and placed on CPaP (continuous positive airway pressure).  CPaP is a device that pushes oxygenated air into trachea, but some of that air will inevitably sneak through the esophagus and into the stomach.  We don't want any extra air inflating his stomach and putting pressure on his repair site.  So, when he comes off the ventilator, his lungs will need to be strong enough to be supported by a nasal cannula or no support at all. 

Once his stomach has healed . . . they will test it on Tuesday with fluoroscopy(continuous X-ray) . . . feedings can begin.  Feeding Crew will be a very slow process.  He will most likely need to be fed with a special formula at first,  then gradually transition to breast milk. They will be watching him very carefully to make sure his stomach and intestines are digesting properly.

Crew weighs  4 pounds 11 ounces today, down 40 grams from yesterday.  He's still peeing like a champ.  And, he also still remains on a Morphine drip for pain.  

This is a lot of information for one day . . . sorry.  Crew's dad and mom are doing their best to stay strong and positive . . .  despite all his set-backs.  Your prayers and support are helping all of us get through this stressful time . . . Thank you!!

He's still a very critical little boy.

Day 12 . . . post op day 3

Well, he can't give us one day without a little scare.  Poor guy . . . it's really not his fault.  Today Crew's work of breathing became labored and he started to set off all his alarms . . . right when grandma and grandpa were visiting.  The Docs and NNP's were called in to the room to problem shoot.  They decided that something just wasn't right with his ETT(breathing tube).  So, they had to bite the bullet and replace it on the spot.  They had been trying to avoid doing this, for fear that his little belly might get too full of air in the process.  But, everything went smoothly.  They changed out this size 2.5 ETT for a larger size 3.0 ETT.  When they pulled the old one out . . . there was a nasty old plug on the end of the tube that was basically occluding it.  His new tube is working like a charm.  The X-ray they took right after replacing it, looked better than it has in several days.  His belly did get a little extra air in the process, but they were able to aspirate it quickly back out. Hopefully this didn't cause any stretching or irritation to the suture line.

I think his poor mama is tapped out.  She needs a couple days without any major stressful episodes.  I almost forgot . . . last night he developed another pneumothorax.  His heart rate went up and oxygen saturations went down, and his work of breathing increased.  The doctor was able to aspirate back on the chest tube to relieve the air from his chest, and then he quickly returned to baseline.

On a positive note, he's as cute as ever.  He is still opening his eyes to peek when we ask him . . . bless his little heart.  He lost 5 grams last night . . . not much, but I'm glad he didn't gain.  He's still peeing well and soaking his diapers.  And, with just a little tiny bit of Dopamine, his blood pressure is holding.

Doing well today

He's doing a little better this afternoon.  Tolerating the change in Morphine so far and resting well between cares.  They removed his urine catheter, so it's back to diaper changes.  His heart rate is stable and his B/P is holding.  The surgeon is pleased with how things look so far.  We're staying positive and keeping the faith.

Looking through the isolette

Tiny little toes

Holding his favorite aunt's hand

Sweet little fingers

This is his incision.  I took this photo during the dressing change.

Post-op day 2

The night shift was uneventful.  His weight is up by 3 ounces today . . . a good thing for now.  He must have finally held on to some of the fluid boluses he received yesterday.  His Oxygen requirements (FiO2) are up this morning to 48%.  Some of this may be from the extra fluid . . . we can't control where it goes.  But, this mornings chest x-ray showed an area on his right upper lobe that was collapsed down a bit.  They are going to turn him slightly to his left side to help open up and drain the right side.  His little lungs are so fragile and sensitive to any change.  

They're discussing the idea of stopping the Dopamine drip.  His blood pressure just needed a bump last night and then they were able to wean it way down.  He still has his urine catheter and he continues to put out a lot.  They are going to start weaning his Morphine drip again. The doctors want him to start waking up a bit more, so hopefully by the weekend they can address the idea of removing his ventilator.  He will need to be alert and able to do all the breathing on his own.  He will also need a clear x-ray.  The sooner they can get his breathing tube out . . . the better.   Any time there is a tube in the lungs, there is the risk for infection.  He does not need to get pneumonia right now.  

His stomach seems to be healing . . .  as far as we can tell.  There really is no way of knowing right now.  Like I said earlier, they will check it with an X-ray after 7 days.  However, we can assess the color and size of his abdomen, as well as how firm or soft it is.  And, the nurses listen for bowel sounds several times a day.  I forgot to ask if he has any . . .  but I'll check myself when I go visit in a few minutes.  

He's far from being out of the woods.  We will be on pins and needles until he's safely off the ventilator and on full feeds.  I'll post more photos this afternoon.  Keep our little guy in your thoughts, and those prayers coming.

Opening his eyes

This video was taken around lunch time today.  Terrel was talking to Crew and asked him to open his eyes . . . he popped them open right on command as if he knew exactly what his daddy said.  It was so precious.  The little cloth that is covering his eyes is a "cuddle cloth". Daddy and mommy wear them next to their skin for several hours and then place them near the baby's face.  Babies have a strong sense of smell and this helps them get to know their mom and dad's comforting scent.

Crew is waking a little from the surgery, but the nurses are giving him a lot of pain medication so that he doesn't feel any pain.  The surgeon came in today and changed the dressing on his incision site.  She said everything looks good for now.  His incision is about 3 to 4 inches long on his right abdomen extending across his belly button.  The doctors started him on a Dopamine drip this afternoon to help keep his blood pressure in a good range.  He continues to pee a ton.  He received about 4 boluses of normal saline, cryoprecipitate and fresh frozen plasma today in order to make up for the fluid loss in urine.  His heart rate is holding in a normal sinus rhythm . . . keep your fingers crossed. And, those darn chest tubes are still draining.   It was a very busy day, full of ups and downs, but Crew is a fighter and he's battling like a champ!

We can't thank you enough for all of your love and support.

This is a drawing of Crew's stomach that the doctor did to show the area where his perforation occurred. 

Holding daddy's hand

A little update for now

Crew made it through the night.  He is still very, very critical.  His weight is down to 4 pounds 9 ounces . . . he lost another 7 ounces overnight.  This is good . . . and bad.  Now that he is post-op, he needs to retain enough fluid volume to keep his blood pressure and perfusion up.  He has been receiving a lot of extra fluid through his IV in order to keep up with the amount of urine he is peeing off.  It's a critical balancing act.  The doctors are discussing adding the drug Dopamine to help with his blood pressure.

He remains on the conventional vent with his chest tubes.  His FiO2 needs have been around 40%.  He still has a very small breathing tube and is very sensitive to any changes in pressure.  He is getting Morphine as needed for pain . . . along with his Morphine drip.  And, he also receives Versed to help him rest.  We are so thankful that he is resting well and allowing his body to heal.  The next 48 hours will be a very critical time as he continues to recover from surgery and his previous insults.

A Really, Really Hard Day!

Well, we had a couple of really good days in a row . . . but today it all came crashing down like a ton of bricks.  I have a lot of information to share,  but will try to summarize the best I can for tonight.  

This afternoon it was apparent that our little Crew was in some sort of pain.  He was crying and kicking his little legs, and acting differently than normal.  His abdomen was also more firm and distended than it had been the day before.  Fortunately the nurses and respiratory therapists picked up on these subtle signs and reported them to the doctor.  They took this seriously and obtained an x-ray, where they soon discovered "free air" in his abdomen . . . a very emergent situation.  This basically means that air had escaped from somewhere in his digestive tract and was filling up his abdominal cavity.  The surgeons were called  to his bedside where he was operated on immediately.  The surgeons found a hole (perforation) in his stomach . . . a very rare area for perforation.  They believe this perforation is a result of being so critically ill and having decreased blood flow(ischemia) to that area at some time within the past several days.  They were able to remove the damaged section of his stomach and then carefully and meticulously sew the edges back together.  He tolerated the surgery fairly well, given the circumstances.   Needless to say, he is extremely critical once again.  He is receiving a post operative blood transfusion.  He is at high risk for infection and has been started on numerous antibiotics.  The surgeons have placed a tube through his nose and into his stomach to help alleviate any air from getting through.  He is heavily medicated and sedated, and will be for some time.  He is still on the conventional ventilator and oxygenating well.  He still has his chest tubes.   His heart rate is normal for the time being . . . they had to stop the Sotalol because it was an oral medication.  His blood pressure is holding, and he is still peeing. 

The next several days are going to be critical.  We need this surgical repair to heal without complication.  If the repair holds without interruption, the plan is to test it in one week.  They will take him to fluroscopy(a continuous x-ray) and place dye in his stomach to rule out any leakage.  Then, if things look like they are healed properly they might be able to attempt to cautiously feed him. 

Once again, we ask you to remember our little "Crew baby" in your prayers.  He and his parents need them now more than ever.  We have faith that he will pull through this, and that he is strong enough to recover without any lasting effects.  We need the strength from your faith and prayers too!

If you have questions or comments, please send them to me at this time (jenlschow@gmail.com).  Terrel and Gretchen are  overwhelmed with the information they are receiving from the doctors and nurses, and are trying to focus all their attention on their son at this time.  They are so appreciative of all of your support, but understandably very shaken right now.

Just before surgery

An air leak . . . makes a sweet little sound.

Another good day

Crew is tolerating his new ventilator and so far hasn't had to have his breathing tube changed out.  He has a very large air leak around the tube and it squeaks really loud when he's positioned just right.  I'll attempt to post a video next . . .  I hope it works.  Poor guy had to get another  I.V. line today . . . in order to receive some clotting factor (Cryo).    He is still peeing very well, and now is receiving enemas every 8 hours too. He's pooping a little with each one.  I posted a "poopy face" photo below.  His mom and dad are participating in his diaper changes and mouth swabs every 4 hours and loving it.  He's getting more and more expressive every day.

A new conventional ventilator . . . the Avea

Daddy is brushing Crew's teeth (swabbing his mouth)

Crew's little "poopy" face

Almost a smile . . . he's still receiving lots of pain medication, so that's about as far as those eyes will open.