Day 26 Update

Sam got his fourth dose of Erythromycin at 6:00 A.M. yesterday morning, and he started back on Pedialyte at 5ml/hour at 7:00.  After tolerating that well for six hours, he was bumped up to 10ml/hour for six hours.  Since he tolerated that well, they switched to breastmilk at about 10:00 P.M. last night.  At rounds this morning, the doctor okayed upping the rate to 15ml/hour, and he has been tolerating that well since 11:00 A.M. today!  The plan is to increase by 5ml/hour every twelve hours until he gets to 25 or 30ml/hour, which was normal for him pre-surgery.  He was taking 90ml (3 ounces) every three hours, which is 30ml/hour.  Once he tolerates that well, we can try giving him a bottle. 

His labs that check for infection are continuing to trend back to normal range.  They are gradually switching his medications from IV form to oral, which is also good news since he will go home on a few. Yesterday, the doctor mentioned going home for the first time!  He tested negative for rhinovirus last Monday, and they checked again today--they have to get two negatives before he is considered virus-free. We haven't gotten the results back yet, but once we do, they'll move him to a new sanitized room, the nurses no longer have to wear gowns and masks in his room, and he can move to the general pediatric floor!

All the steristrips are off Sam's incision and the spots where the drainage tubes were, and he looks so good!

In other news, we went to the Perot Museum of Nature and Science yesterday. It is so cool for kids and adults!  Some of the exhibits were more appropriate for elementary-aged kids, but the girls loved it anyway. 

They got to play on the leap frogs outside. 

They played on the outdoor instruments. 

And they watched their first 3D movie--neither one cared for keeping the glasses on and were more interested in the folding chairs and eating popcorn. 

 

When they left yesterday, both girls asked to go home. It broke my heart!  Hopefully that was the last time we have to say goodbye. 

Today, Stephen and I went to Pluckers to watch the A&M bowl game. 

We're hoping and praying for continued steady progress for our precious little guy!

Set your hope fully

I came across this verse this morning:

 

Set your hope fully. My hope is not that Sam will tolerate these feeds well today.  It's not that he will start eating by mouth again soon. Or that we'll be home together, the five of us, again soon. It's Jesus.  

I have been crying a lot lately, and Stephen keeps asking me why. Last night, I realized something. You know when you pray, and you feel God answering or at least listening?  I don't feel like that right now. But then I was reminded of something I had read by Lysa Terkeurst before: "feelings are indicators, not dictators. They can indicate where your heart is in the moment, but that doesn't mean they have the right to dictate your behavior and boss you around."  What a comfort to know that my Lord is bigger than the circumstances we are in inside this hospital. He knows how this will turn out and when we'll be home.  Jesus is my hope. He is with us right now and will continue to be. 

Praying for joy today as we wait for complete healing of Sam's precious little body. 

Day 24 Update

Sam started pedialyte through his NG tube at a rate of 5ml/hour for four hours yesterday around noon.  He did well for those first four hours. The nurses are able to suction out through the NG tube to see how much he hasn't digested, and he only had about 2ml left, which is good. 

The nurse increased his feeds to

10ml/hour until 6:30 this morning when he started throwing up, and then the nurse suctioned about 7ml, so she stopped his feeds. We waited until the doctor did rounds this morning to reevaluate. The doctor decided to consult with a GI specialist--they think his stomach and intestines are not working efficiently enough on their own, so they started Sam on Erythromycin to increase the motility in his system. 

The nurse started the Erythromycin at 12:30 today, and then restarted the Pedialyte at 1:00. The GI specialist said the IV form of Erythromycin works more quickly and lasts longer than the oral form, but only the oral form was available at the pharmacy at the hospital. Well, Sam threw up several times this afternoon, so they stopped his feeds again. The GI specialist decided to give Sam four doses of the Erythromycin to get his system working again before restarting the feeds.  The nurse said it does take some time for the medicine to start working, and just like any antibiotic, you have to take a couple doses before you notice its effects. The last of the four doses will be at 6:00 AM tomorrow, and then they'll begin Pedialyte again. 

The tentative plan is to work up to where he tolerates 10ml/hour of Pedialyte, and then switch over to 10ml/hour of breastmilk, and then once he tolerates that, start feeds by mouth. 

My parents and the girls came to visit today. We played in the children's waiting area for a while, went to supper, and then hung out at their hotel for a while. 

The girls are really missing Sam and don't understand why they can't see him. I'm ready for all my monkeys to be together again!

We're praying for more steady progress tomorrow. 

Day 18 Update

Today is day seven for Sam to be off feeds and on antibiotics.  He has had fever on an off throughout the week, but it goes back to normal with Tylenol.  We have spoken with several doctors, nurse practitioners, and now two pediatric surgeons about Sam's gut issue.  They feel pretty confident that he has necrotizing enterocolitis (NEC).  NEC isn't something that can be caught, and the doctors aren't sure how or why Sam has it.  It is an issue in the intestine that causes the intestine to become inflamed, which can lead to a perforation.  When the bowel perforates, the good bacteria that's always in there enters the abdomen or blood stream, causing an infection.  The doctors put him on gut rest to prevent a perforation and to allow the intestines to heal on their own.  NEC usually happens in premature babies, babies that have other significant bowel issues, or babies who have certain congenital heart diseases (not the kind Sam has).  They are able to see a spot on his intestines on the x ray that looks like air built up, causing a part of his bowel to be dilated.  For the first few days this week, they were doing x rays every six hours, and then they moved it to twice a day, and now he gets one just once a day.  He has had two ultrasounds to look for fluid built up, but they haven't shown any areas of fluid, which makes them think there is no perforation.  His condition hasn't worsened, but it hasn't gotten significantly better either.  Generally, babies with NEC either get significantly better after a few days of gut rest (no feeds) or get significantly worse and require surgery.  Basically, Sam's case is an anomaly, and he's confusing the doctors.  We spoke with a surgeon this morning who is ordering a CT scan for tomorrow.  He explained that x rays show a 2D view, while CTs show a 3D view.  The CT will either show that the issue is isolated to the one spot they can see on x ray or that the issue includes a larger area.  If it is isolated to one spot, they will introduce feeds slowly and see how his intestines handle it.  If it includes a larger area, they will do surgery to repair his intestines.  We are praying, first of all, that the CT gives clearer information about Sam's case, and, second of all, that it is isolated, and he can start feeds again soon. This has been a frustrating week for Stephen and me.  On Monday, they said they would hold off feeds for one day, then we were told three, then five, then seven, and then fourteen.  Now that we have some hope of an end of Sam's situation, we feel hopeful there will be a solution.  Sam has acted uncomfortable this week--he cries out when he sleeps, and fusses and cries any time the doctors or nurses touch his abdomen.  It has been really hard as a parent to watch our baby be in pain and not be able to do anything to help.  He is only able to have Tylenol because narcotics can slow down progress in the bowels.  

He does enjoy watching this little soother machine that plays music, nature sounds, and a little light show.

He isn't resting well, which I'm sure can't help his recovery.  On the other hand, he has recovered from open heart surgery great!  Dr. Kao has been by several times, and is very happy with his oxygen sats, blood pressure, and other heart stats.  I am hoping and praying that we get some answers tomorrow!

In other news, my mom brought the girls to see us yesterday.  We hadn't seen them in two and a half weeks, the longest we've been away from them.  We went to Northpark Mall (the busiest place on the planet the Saturday before Christmas) to see the trains exhibit, which the girls loved.

Yesterday, Emory said, "Let's go home."  Yes, let's!  They asked several times to see Sam--they don't allow visitors under 12 during flu/RSV season.  The girls miss their little bro!

Mama, the girls, and I stayed at a hotel last night, which was a nice break from the couch in Sam's room.  This morning, the girls played in the children's waiting area, we ate lunch, and then they went back to my parents.  Maybe within the next week we'll all be together again. 

Day 12 Update

Poor Sam. He had a low grade fever off and on yesterday, but Tylenol took care of it.  This morning around 8:00, his fever spiked to 103.7, so the nurse and nurse practitioner started thinking he had an infection somewhere. Scary!  They took a urine sample, blood sample from the picc line, and regular blood draw to see if it's a urinary tract infection, line infection, or something else. Those cultures take 48 hours to get results. 

This morning, they started the same antibiotics that he got as a precautionary measure last Tuesday post-op. He got a chest x ray, which came back clear, so no problems with his lungs or heart. Hallelujah!  Temp was normal again by 10:00 A.M.

Last night, his tummy looked swollen, and the nurse didn't seem concerned. I asked the NP about his stomach again this morning, so they did an abdominal x ray to see if they could see anything.  In the meantime, they stopped the feeding tube. Breastmilk is naturally 20 calories/ounce. They started his feeding tube with unfortified BM a few days ago, increased to fortified 24 cal (which is what he got at home), and then increased again to fortified 27 cal yesterday. The NP thought maybe his bowels weren't responding well to the high cal milk. Well, the abdominal x ray showed that his bowel loops are dilated. This could be because of air pockets in his bowels or stool that's backed up. They're going to do an x ray every 6 hours to check progress. Dr. Kao (my hero) came by and explained that babies with low oxygen saturation (which Sam was before surgery) sometimes have low profusion to the bowels, which basically means that his bowels work more slowly than normal. So before the surgery he was in charge of his feeds--when he ate and how quickly. Once they started using the ND tube, they just pumped a steady stream into his bowels, plus they went up to 27 calories, and his bowels couldn't manage. So the worry was that a bowel loop could rupture; however, the NP spoke with a peds surgeon, and he thinks antibiotics and holding off his feeds for 24 hours will take care of the problem. 

They also did a blood gas, and it came back normal. That test checks for lactate, which shows if there has been any tissue damage, so we're good there. 

Sam is acting uncomfortable, so they're going to give IV tylenol. The nurse said he might be feeling hungry, so it might be a rough 24 hours for both of us. And, unfortunately, there's not really anything I can do to make him feel better!  Dr. Kao did say his heart and all his heart-related stats looks great!

So! Prayer requests:

1.  the issue with his bowels gets resolved

2. if there is an infection, let there be clear results and that it responds to antibiotics 

3.  Sam's discomfort is manageable so he can rest

Day 10 Update

Yesterday and the day before were pretty rough for Sam and me.  Sam was refluxing his feeds and feeling pretty miserable.  Early this morning around 2:00 they put in a different kind of feeding tube that circumvents his stomach and goes directly to his intestines.  This has helped tremendously. He hasn't been coughing or spitting up at all today. Rhinovirus is no joke. Hard to believe he has recovered from open heart surgery so well, but a common cold is setting him back. I asked the nurse earlier what needs to happen before he gets the all clear, and she said he needs to be eating well on his own and gaining weight. We are hopefully going to try feeding by mouth again tomorrow. Pray that that goes well!  I'm so ready for all my people to be together again. 

Yesterday my friends came to visit. 

It was so nice to feel normal for a couple hours. I couldn't ask for a better group of girls to call my friends. 

Meanwhile, back in Bertram, the girls are in hog heaven feeding goats and doing farm work:

And helping Trent conduct the band at their Christmas concert:

I sure do miss my girls!

Day 8 Update

Sam is continuing to make progress. Yesterday, they took out pacemaker leads that they only use if needed (and he didn't), an IV line, breathing tube, and they have lowered his oxygen through the cannulas. He has tubes that they left in for drainage around his heart, and those are supposed to come out today, too. We have tried to bottle feed him three or four times, but he mostly just chews and doesn't act too interested. He is only taking regular old Tylenol for pain!  

Yesterday and overnight have been pretty uneventful, thankfully!  Once the drainage tubes are out today, we'll be able to hold him. I can't wait!!

He is looking awfully cute sleeping so sweetly!

Day 6 Update

The results from Sam's cardiac catheter yesterday confirmed he is a good candidate for the Glenn procedure.  We were told they might move the surgery to today, then we were told it would stay on Thursday because they couldn't reschedule the other patient, BUT then Stephen and I were woken up by the surgeon's nurse practitioner to tell us they rescheduled for this morning!

The Glenn shunt reroutes blood flow to and in Sam's heart to remedy the oxygen saturation problem. Dr. Mendeloff, the surgeon, will also do a septectomy to create a larger hole in his atrial septum to help with oxygenated and unoxygenated blood mixing to increase oxygen saturation. The septectomy will require Sam be on heart and lung bypass, something we weren't originally planning on. 

They left the breathing tube in all day yesterday because they wanted to keep him sedated. Every time he even wiggled a little, his sats would drop to the 60s. They put an NG tube (feeding tube) in late last night just to keep his stomach working a little. The plan was to gradually wean him off the ventilator and extubate this morning around 4:00, but his sats weren't stable, so they kept him intubated. This sounds more serious than it apparently is, but he didn't have a pulse in his right foot until this morning. The femoral artery, the one they used for the cath, was most likely spasming, which resulted in the pulse loss. They said this is common in about half of babies that have the cardiac cath.  When the attending did rounds at about 8:00 this morning, he said he could find a pulse, so that's good. 

We have met with the anesthesiologist, Dr. Mendeloff, and his nurse practitioner this morning, and had all our questions answered. 

Sam got to meet two Dallas Cowboys, Dez Bryant and Orlando Scandrick, right before surgery. Sam went back to the OR a little before 10:00. 

We have met three other families whose babies are in the CHSU with various heart conditions. It has been so comforting to talk with other parents who are in similar situations. Stephen's parents and my parents are on their way into town to support us. We are well loved!

Day 4 Update

On Friday, Sam had either one or two desaturation episodes (the attending doc keeps calling them "tet spells" if you want to google it), but he was able to recover on his own with us or a nurse consoling him, but he didn't require meds to get his sats up. He had four or five tet spells yesterday and again was able to get his sats up on his own. 

The tet spells start because he gets agitated because he's hungry or is uncomfortable. On Thursday, they put in what's called an arterial line--it's like an IV that continuously checks his blood pressure.  The line was on the inside of his leg by his foot, and he kicked it out on Friday. This made him uncomfortable, which triggered a tet spell. They're checking his BP now with a cuff instead. 

Last night at about 8:00 he had a serious tet spell. His sats dropped quickly. I tried holding him, the nurse used the cpap to try to give him more oxygen, but his sats stayed below 50. A respiratory therapist came in to help with the cpap, and the attending doctor and a few other nurses came in. The doctor decided to put him back on a medicine that helps with blood flow and they started him on a sedative that has kept him pretty heavily sedated. After about an hour of really low sats (lowest it got was 4!), they came up to the 60s and eventually the 70s and 80s. He's back on IV fluids, and they increased the amount of oxygen he's getting through the cannulas.  He has taken a bottle twice this morning, which is good. 

The attending just came by to do his rounds. They're going to wean Sam off the sedation and IV fluids to allow him to eat like normal. 

Tomorrow during the cath procedure, they're going to hopefully do an atrial septostomy (expand the hole in the top part of his heart) to allow higher volume of blood flow to try to increase his sats. If they can't do it tomorrow for some reason, they'll do it Thursday during the surgery. 

Yesterday, Sam got some toys to look at 

We are so incredibly thankful for all of you who have called, texted, sent facebook messages, visited, etc. to ask about Sam and let us know you're praying for us. Sam's tet spell last night was very scary. Please continue to pray for us. 

Getting admitted

What a day.

Sam has been spitting up more and acting uncomfortable since last week, so I took him to the pediatrician yesterday because I thought it was reflux. At his appointment, his O2 sats were in the 60s and 70s (his have been in the 80s), he had only gained two ounces since last Monday a week ago, and his color has gotten worse. Dr. Hardy called Dr. Kao, and Stephen and I came to Dallas this afternoon to get Sam checked out. So thankful we did!  

At his appointment, his O2 sats were in the 50s, so they did an echo, and during the echo Sam had a little episode. Any time he cries, he gets very purple, but once he stops crying his color gets better. Well, he wouldn't stop crying, and Dr. Kao was able to see on the echo what his heart does while he cries. His pulmonary valve restricts when he cries, which doesn't allow enough blood into his lungs, so his sats were in the 20s and 30s. Yikes!  

We quickly came to the Congenital Heart Surgery Unit (CHSU) to get him stable. He has been resting for a few hours now. The heart cath has been moved to Monday, and he'll have his surgery to have the Glenn shunt placed on Thursday. We'll be here probably for the next two weeks. 

It has been a rough day, but I am so thankful we were here when this happened. We know he is in the best care possible, and that the Lord has a plan for our little boy.