Day 7

Hi, Everyone.
It's Patsy here, AKA Gramma.  It is pretty late on Thursday night, and Kari has finally been convinced to try to get some sleep.  She and Matt got almost no sleep at all last night.  Davis was uncomfortable through the night.  Right now, Matt has had a little nap and is feeding Davis.
It is great to see Davis eating.  I have not gotten a big smile out of him yet, but I can tell it is coming.  He is starting to communicate with his eyes, his signs, and some cooing. 
It has just been a difficult 24 hours with his comfort.  He hurts but can't really tell us where.  A new development is his collapsed lung on the right side. 
So Kari asked me to do this blog update.  Short and simple.  But she knows that so many are looking for the updates each day.  I plan to do another guest post when things settle down that will be more reflective in nature. Sorry no pictures this time.  Thank you again for the tremendous support and all of the prayers.
Good night all.

Day 6 - Moving On Up

What a great day for little Davis!  And a BUSY day.

We are out of the ICU!!!  This is huge!  We came up to the regular pediatric floor with oxygen, a feeding tube, and one chest tube.  That's pretty good!  However, we started fluids because we are having some trouble with feedings.  He did very good on his first bottle yesterday, but we think that the food hitting his stomach caused some tummy troubles.  I can only imagine after not eating or pooping for five days that it would not feel very good!

So in order to get some nutrition back into that little body with the healing heart, his feeding tube and fluids will meet his nutritional needs, and he can focus on resting.  Tomorrow we will get back to work with feedings.  Getting out that last chest tube and letting his throat recover from being intubated will help him.  Our other focus is to keep him changing positions and elevated in order to get rid of some chest congestion.

Davis had music therapy today!  It was beyond cool.  The lady had such a pleasant, soothing voice.  Davis absolutely loved it.  The music therapist said he has an amazing attention span for someone his age.  It was therapy for Mom and Dad too.

Davis had lots of visitors today!  It is easier to visit now because this floor doesn't have all the limits and rules as the other floor.  Our room is MUCH more pleasant with lots of space for sleeping, bathing, and storing our stuff.  The nurses are absolutely wonderful.  We expect to be here for several more days.

Davis is really enjoying his E-cards!  I know, how much can a baby really enjoy them, right?  But he looks at each one as we read the message to him.  Keep 'em coming!  Room 7739.

Let's hope and pray for a peaceful night for Little D and a productive, feel-good day tomorrow.  The worst is behind us, it should be all uphill from here.  And if not, we'll take it as it comes and plunge right through it!  This dude can handle anything - he has got to be the world's most patient patient.  I am truly blessed to have this amazing human being in my world.

Day 5 - updates

We have good news and bad news. I never know whether to start with the good or bad. Let's start with the bad so we can end on a good note.

An ultrasound of Davis's throat showed he had a clot in his jugular vein which held his central line for several days. This means he will have to start blood thinning medicine via two daily injections. I will be taught how to administer the injections because he will be sent home with it. We will have to take him to the doctor regularly until the clot disappears. :( This is upsetting because it's just one more thing to worry about. Blood clot formation is very common with his situation though, and the doctors are not too concerned.

The good news is I got to hold my buddy! We cuddled and rocked, and I fed him some milk. He's so skinny compared to his size pre-surgery, but I have no doubt he'll gain weight quickly, especially now that his little heart is fixed.
 

Me and My Buddy

Day 5 - Extubation!

Progress, progress, progress!!!!

Davis had his breathing tube taken out this morning!  This is a huge milestone in his recovery.  He is still on a little bit of oxygen.  He got to sit up this morning, and he has been awake quite a bit.  He is off several medications, and one by one they will not be needed.  He still has the chest tubes in, and those will probably come off tomorrow.  Here in a little while, Davis will be offered a bottle of breast milk - knowing Davis, I have a feeling he will do quite well.  If so, his feeding tube will come out.  We will be moving to the regular pediatric floor either tonight or tomorrow if everything goes well!

Such a cute little trooper

I am overwhelmingly pleased with his progress in the last 48 hours; those first 48 hours were rough!  I will admit that, in a way, having him awake is almost tougher on me as his mama because he is so pitiful and aware enough to know he just wants his mommy!  He is making some sounds now, little whimpers and coughs, and his eyes are wide open now at times; in those big brown eyes I see fear and discomfort. :(  He has begun to cry several times as I've tried to soothe him; I know he just wants to be picked up.  I may get to hold him this afternoon; if not today, then for sure tomorrow.

So now the hope is for his recovery to continue as quickly and easily as it has the last day or so, that he continues to receive good care from his nurses (we've had a few issues in the last 24 hours), and that he does not have to suffer too much mentally or physically.

We just love Davis SOOOOOOOOOOOOOOOOO much, and he may just be the most well-loved boy I know.  The support from our family, friends, and people we don't even know has just been AMAZING!  We received more E-cards today and read each one to Davis.  They are so cute and fun to receive, and I'll be saving them for Davis to keep and read one day so that he'll know how much people cared about him and what a trooper he was.

Peace Baby!

Day 4

Davis is making progress, slowly but surely!  We have a few tiny setbacks, which is much better than the larger setbacks we were having the first couple of days.  He is still in the PCCU but moved from a critical care room to a room in which he shares a nurse with another patient.  This room is more comfortable for me and Matt - we have a pull out couch, bathroom with shower (tiny, but we'll take what we can get!), and lots of windows.  His room number is 5744.

We thought we were going to be able to get Davis off the ventilator today.  He doesn't need the ventilator anymore - they have taken his levels down and he is breathing over it on his own.  However, he has swelling in his throat around the breathing tube.  This swelling, along with the fact that he has low muscle tone caused by his Down Syndrome, is a concern because we need that airway to be good and open once the tube comes out.  So he will keep it in today and through the night, which means they will still have to keep him quite comfortable and fairly sedated.  They will put a feeding tube in this evening and give him some of the milk I've been pumping and saving for him.

Another issue we had today was with his fluid.  One of his chest tubes was clogged, and an x-ray found a pocket of fluid.  Once the tube unplugged, he began draining just fine.  The catheter is out, and he is making plenty of wet diapers!  His skin is very sensitive right now from all the stretching and swelling.  He had a bandaid over a little hole made for his pacer wires, and when the nurse removed it, his skin came off!  He has lots of irritated skin all over his body right now, poor thing.  I can't wait to get that body home and rub lotion all over it!

Davis has no fever!!!  He is restful but also more alert when he is awake.  He is enjoying a homemade mobile I made for him with his favorite toys hung from a bed lamp.  An order has been put in for music therapy!  He loves music and I am excited to see how he does with this.

I believe each day we will see greater and greater improvements from here on out.  Maybe tomorrow I'll even get to hold my baby!!!!!!

And one thing his fan club (ha ha) may be wondering about:  we received his E-cards!  We haven't looked at them yet but will here in a few minutes.  I can't wait to see them!  Thank you so much!

Day 3

We are more than 48 hours post-op now.  Davis had a good night last night.  He was given some medicine for agitation and slept peacefully through the night.  He was taken off some medicine that was helping keep his blood pressure up and did great for several hours!  However, this morning his blood pressure dropped again; also, his urine output wasn't ideal and his creatinine level was up.  This means his kidneys are having some trouble, which can happen after being on bypass.

Davis's medicines

He was put back on the medicine to keep up his blood pressure which will in turn supply more blood to the kidneys.  The kidneys need this blood to help get rid of the fluid build-up in his little body.  He is on two medicines now which also help to push out this fluid.  He is very puffy, and we are ready to see that swelling go down.  He has started to produce more urine in the last couple of hours, and this is good news - we need that to continue throughout the day.  We can't begin to wean him off the ventilator until he gets rid of some of this fluid, because his lungs and heart will need more of his energy when off the ventilator, and we currently need all his energy to go toward keeping up his blood pressure and pushing out fluids.

All the machinery

Davis goes through periods in which he is awake, but he is not fully aware even during his wakeful times.  He responds to touch and the sound of my voice and occasionally opens his eyes a little.  He needs his pain meds and medication to keep him calm in order to keep him restful as much as possible, but because he is off the paralytic, he does move around some.  He is keeping his temperature down on his own (still low grade fever) and his heart rate is steadying at an ideal pace.

As long as he keeps up the urine output and the blood pressure, he may start weaning off the ventilator through the night and tomorrow unless another issue appears.  His surgeon feels he has turned a corner, but there are still lots of critical issues and concerns.  We want him off the ventilator as soon as possible, not only to see how he does on his own but for his comfort during his awake periods.  Plus once he is off the ventilator, I imagine he will be able to start eating some.

Living in the PICU day after day watching your baby suffer and not being able to help him is not a pleasant experience.  We were expecting a quicker recovery due to his absence of risk factors, but his complications are nothing too far out of the norm for this type of surgery and so far very treatable.  We have to be patient and wait for his little body to heal itself.  We are not moping around, focusing on the difficulty of the situation, though we are saddened when he has a setback.  We have been able to keep our positivity and strength, which we are able to do since we have each other, our family, and our friends who are helping us through it; and we still have our sweet baby with us.

Sweet baby boy.  :(

Davis has a long road of recovery ahead of him.  I daydream of holding him, rocking him, feeding him, playing with him, and, probably most of all, seeing him smile.  He is such a sweetheart and such a trooper.  The nurses think he is so cute and sweet. ;) And they don't even know the real Davis!

Davis will be in the PCICU for a few more days.  His daytime nurse he has had the last three days is off for the next four, and we've been joking that we hope we don't see her again.  Hopefully by that time we will be moved to the regular pediatric floor.  Not only will this mean that Davis is much better, but the accommodations for me and Matt will be much more comfortable.

I know Davis has a lot of fans and followers, and I will continue to update daily and/or when anything major changes.

Last 24 hours

Davis has been out of surgery just over 24 hours now.  Immediately after surgery, he was doing quite well and we expected the best.  He began to wake up yesterday evening, which just broke my heart.  He was not comfortable and did not like the tube down his throat.  He cried little tears with no sound.  It was definitely a moment I wish I could forget.

Then things started going downhill; his temperature began to rise, his heart was beating at times slowly and at times too fast, his blood pressure plummeted, and there was a possibility of pulmonary hypertension.  The decision was made to give him medicine to keep him asleep and keep him still, on top of all the other medicines needed to assist his pain, blood pressure, etc...  He also started a nitric oxide treatment.  A pacer was necessary to keep his heart in rhythm.  He was monitored very closely through the night.

In the morning, the doctors discovered that he had a pocket of fluid on the right side of the body that was not draining; an echocardiogram was performed to double check the condition of the heart, which was found to still be in good shape.  Another chest tube was inserted to drain the extra fluid.  Once the fluid began to drain, he began to improve rather quickly.  He soon came off the pacer and hasn't had to be put back on it.  This is a very good sign!  His temperature is also much lower and his white blood cell count is normal.

The tricky part now is to keep his blood pressure stable while eventually getting him off the ventilator.  Over the next day or two, medicines will be adjusted to work on these goals.  He is beginning to wake up some, very slowly, and we will see how he does.  It is basically just wait and see at this point while assisting him with moving in the direction of his little body working more on its own.

Davis is in good hands.  The staff is very knowledgeable and kind - they are very gifted, and I'm so thankful for them.  Davis is a tough little guy!  He has been through so much and has a long road of recovery ahead.  I keep hearing that I'll be amazed at how quickly he will recover, and I hope that is the case.

We are hanging in there okay - we are tired, but it's hard to rest when you are this worried.  I literally thought at times last night and this morning about the worst case scenarios.  Seeing him make these little improvements really eases our minds.  I should know better than to doubt my little fighter!

I gotta go hold my little guy's hand now since he is starting to become more aware.  He needs his mommy!  And we need you guys - it's so comforting to hear your words of encouragement.  Thank you for all the thoughts and prayers.