Great Progress

Jereth is gaining more muscle control. He is close to being able to sit up on his own. He now holds his own head up when we pick him up. The physical therapist was very impressed with how much improvement he has made in the last week and a half.

And best of all...

Growing Again

Now that Jereth is back on the feeding tube at night he is again gaining weight. His development is still quite delayed - about that of a 3 - 4 month old. He still needs help holding his head up at times although he can roll over quite well. He's getting more "tummy time" at his own choosing, which is very good.

He is working towards sitting up, but still needs support. Crawling still seems a good way off. Jereth is progressing at his own speed and the most important thing is that he is making progress. We are grateful for each little step.

Back on the Feeding Tube

Jereth has been off his feeding tube for almost a month, but has not been gaining weight - in fact, he's been losing weight. So he's going to have to endure the feeding tube again. He'll still get to take a bottle during the day, but the rest of his calories will again be pumped into his stomach at night.

We were really hoping he was ready to take this next step, but he's shown us we moved too fast and he wasn't ready. Yes, it's disappointing, but we need to keep him healthy and growing. So if this is what it takes, this is what we'll do.

Feeding Tube Progress

Jereth's feeding tube has become a fun battle of wills - he pulls it out on a regular basis and really doesn't enjoy having it put back in - but then I can't think of anyone who would like to have a tube stuck up their nose and fed down their throat and into their stomach.

Monday afternoon he pulled it out for the umteenth time while Mom and Dad were out running errands and he was home with Spencer and the other children. Instead of putting it right back in I gave him a bottle (he's been taking an ounce or two at a time in the mornings so I thought we'd give it a try in the afternoon - I figured if he would take as much by mouth as he would have received through the feeding tube he would be fine).

Recent Pictures

Sweet Jereth has become very good at pulling his feeding tube out. When he is awake it is getting very difficult to keep the feeding tube in.

On the upside, we were told that when he pulls the tube out is a great time for taking pictures. So I enlisted big brother Spencer's help yesterday and we got some nice pictures of Jereth. Enjoy...

Better and Better

Jereth looks and acts better every day. We're working slowly on weaning him from the feeding tube. He gets to be unhooked for about four hours each morning and is taking a bottle - just a couple of ounces for now.

He is gaining weight and is getting stronger. He can almost roll over and is holding more of his own weight when we help him sit up. He is alert, responsive, and as sweet as can be.

Great Progress - Major Milestone

Jereth has not needed any air support (even at night) for over a week now. His lungs and airway are doing their jobs and he looks great. One tube down, a tube and a wire to go.

The physical therapist worked with him on sucking and eating yesterday and said he did very well. Today he was able to take over an ounce of his thickened formula by bottle. When he is able to get enough calories from a bottle and baby food he can get rid of the feeding tube. That's the next milestone we're looking forward to for him.

Continuing to Do Well

Jereth continues to improve and grow. His pediatric cardiologist is pleased with his progress and how good he looks. We are grateful for his continued recovery.

He still uses air support at nights, but spends his days without it. He hasn't got the hang of taking a bottle yet, but is doing better with sucking.

Yesterday we took him along for a family walk. He seemed to enjoy being outside and it was nice to unhook him from the tubes and wires for a little while.

Birthday Present for Mom

Jereth gave me a great Birthday present this evening. We've been working with him since coming home from Utah to get him to take a bottle. He has seemed interested, but has not really taken hold of the nipple --- until tonight. Several times he showed good progress tonight in sucking on the bottle. It was great to have him take to the bottle so well.

There is still quite a ways to go - he needs to get the suck-swallow-breathe rhythm down and right now he is only taking a few milliliters at a time, but he is heading in the right direction.

Making Good Progress

We met with Jereth's cardiologist, Dr. Eloisa Walker, in Boise today. She is quite pleased with his progress. He is looking healthier and gaining weight. His incision has healed very nicely although the chest bone is healing with an upward ridge (she had a special medical name for it, but I can't remember what is was) that is not uncommon and should not cause problems.

Home Again Home Again - Jiggity Jig

Jereth was released from the hospital yesterday. They provided us with four tanks of air to get him home with. Roy came to the hospital and had about an hour wait, then we went to Mom and Max's house and loaded the car.

Mom and Max were at the dentist when we got to their house, but they came home shortly and took us to Lobsterfest for lunch. It was a very enjoyable meal, after which we headed home.

There was a winter storm that kicked up in Utah and Idaho just in time for us to have to drive home during it. We had periods of heavy snow, periods of rain, a couple of places where there was sunshine, but mostly just wet roads to drive home on. The roads didn't slow us down much and we made it home it good time.

The children were very happy to see us - it is great to be home - I look forward to sleeping in my own bed tonight.

Home Tomorrow?

It's looking like tomorrow may be the day we get to go home. The latest blood test that looked at another indicator of infection came back negative and Jereth's white blood cell count has dropped to the high end of normal. His heart rhythm has been stabilized with the beta-blocker, and he is looking healthy and mostly happy.

As long as he doesn't throw any more curves at us the doctors are ready to send him home. There is a big storm predicted for Utah and Idaho tonight and tomorrow, so the drive home should be interesting.

Confounding the Doctors

Jereth is good at confounding the doctors. His issues are never "textbook cases" and sometimes we are left without good answers to why his test results and symptoms are the way they are.

His recovery from the surgery has been steady and he looks good. However there are a couple of things that have his doctors wondering. One is the infections - or lack of infection - and the symptoms. The other is his heart rhythm.

It's Gonna Be a Few More Days

Yesterday Jereth came down with a fever. Preliminary blood tests indicate that he has some kind of infection. The blood culture takes 24 - 48 hours for results to come back. Cultures that can be done more rapidly have come back negative, so we don't know what he's fighting, but they have him on antibiotics.

Since we won't be heading home anytime soon he's back on the heated and humidified high-flow air system instead of the 100% oxygen he had yesterday. His lung looks about the same today as yesterday.

He will start working with a speech therapist to see what it will take to get him taking a bottle again. The first step is a swallow study which will be late this morning.

One More Day - Maybe More

Jereth's lung looks better today, but there is still room for improvement. He also had a period of time during the night where his heart rhythm was off. Although the problem resolved itself and he still looks good, the doctor wants to monitor his heart for a while longer.

Taking Jereth home with an air/oxygen mix will be difficult because we will need a mixer. Because pure oxygen is no longer a problem for him the cardiothoracic doctor decided to try the next 24 hours with 2 liters per minute of pure oxygen. If Jereth does well with that (which he should because he did fine with that setting in cardiac ICU) we will be one step closer to heading home.

At this point we will be taking things one day at a time (again) and the decision to release him or not will be made each morning.

Into the Children's Surgical Unit

When the doctors came around this morning the attending physician made a statement that I really appreciated. Regarding Jereth and having him on high-flow air and the hassle we have had getting him out of intensive care, he said (and I'm paraphrasing) "We should do what is best for the patient instead of trying to change him to fit one of our limiting categories."

After that the orders were written to change Jereth back to his home settings for air support - back to high flow - and to send him to the surgical floor.

Another Day in CICU

Jereth is doing really well. He is smiling and cooing again! This morning it looked like we would be heading out of cardiac intensive care today.

Jereth pulled out his feeding tube during the night and went without food until the doctors came on rounds. The nurse was hoping to convince them that Jereth no longer needs the feeding tube to go beyond the stomach. The doctors agreed and we won't have to take him to emergency every time he pulls his tube out. (Yay!!) Roy and I can replace the tube when Jereth pulls it out if it only has to go to his stomach.

We are still in the cardiac ICU for a couple of reasons. First, the surgical floor doesn't feel like they can deal with a child on high-flow. Because of this Jereth has been taken off high-flow and is using a regular nasal canula and is on straight oxygen instead of room air. He is doing well with this but it is different from what he will have when we go home.

Better Every Day

Jereth had another good day today. The arterial line in his leg was removed this morning and his central line in the neck came out tonight.

There was talk of moving him out of intensive care to the surgical unit. However, the surgical unit was full and I was not happy with the idea of going back to the NICU (newborn intensive care unit) where there was room and nurses used to handling the high flow air Jereth needs. So when Jereth still needed a higher level of oxygen mixed with the air than the nurse practitioner said he would need to leave intensive care, I was not at all unhappy to stay.

We did get moved to a less private room in CICU (cardiac ICU) so a child coming out of surgery could have the individual room - but at least I get to stay with Jereth tonight.

Recovering Well

No more ventilator! Yay!

Jereth has done well today. Late this morning he was taken off the ventilator and transitioned back to high flow air (which is what he has at home). His feeding tube was put back in and he is getting formula again.  The urinary catheter was also removed.

Here are pictures of his progress.

Third Try WAS the Charm

The surgery is done! Jereth came through the surgery without any difficulties. He is resting comfortably with sedation and pain medication. The next 12 - 24 hours are the most important for his healing process.



The size of the hole

 Jereth's heart surgeon gave us a piece of fabric when he met with us. It is laying on Jereth's chest in this picture. The cut out part of the piece of fabric is what was stitched into his heart. I knew the hole in his heart was large, but I didn't realize it was that big.

Back in Utah

Jereth, Roy, and I had a delightfully uneventful drive back to Utah yesterday, arriving at Grandma and Grandpa Hatch's a little before 10 pm. It took a few minutes to get Jereth's medical gear set up, but he went right to sleep once things were ready and his bed was up.

This morning we headed to Primary Children's to get his pre-surgery workup. After registering we went to the Same Day Surgery. We were only there a couple of minutes when we were told to go to x-ray and lab since we didn't need to do the history again - they still had what they needed from last time.

Found Pictures

Here are a bunch of pictures of Jereth taken in late January. They were lost to me for a while, but Spencer knew where they were and now here they are for you to see. We think he is just plain adorable.

Home Again, Home Again

Jereth was released from Primary Children's on Friday. After a quick lunch with Grandma and Grandpa Hatch we had an uneventful drive home.

We're enjoying a few days home with the family before we head back to Utah during Emmett School District's Spring Break. The pre-surgery screenings will be on Tuesday, March 29th, with his heart surgery now scheduled for Wednesday, March 30th.

Missing Big Brother's Birthday

Eron's Cake
Made by My Visiting Teacher
Di Cluff

Because one important item (bicarbonate levels) in Jereth's blood test was out of kilter yesterday morning the doctors feel a need to make sure it is stabilized and remains that way before sending him home. So we won't be going home today, and we will miss Eron's 13th birthday - which makes me sad.

Too much bicarbonate in the blood can throw off the blood's pH balance, making it too basic. Bicarbonate build up can be a side effect of the diuretic Lasix Jereth is taking for his heart, but that is usually accompanied by a change in sodium and potassium levels, which Jereth does not have right now. Bicarbonate can also build up when a person does not exhale carbon dioxide fully. With the floppy airway Jereth has this is a distinct possibility for him.

Sticking Around

It looks like we'll be lucky if we get to go home on Thursday. They want to make sure Jereth's little system can handle getting back to the feeds and medicines he had before he got sick. When he had diarrhea the doctors dropped the concentration of his formula to the normal 20 Calories per ounce and now they have to slowly increase back up to 27 Calories per ounce.

On a positive note the Nurse Manager and the Patient Relations Chairman made sure we got into a private room on the infant floor, so I get to spend nights with Jereth again. I don't like having to be a squeaky wheel, but I do appreciate their consideration.

New Surgery Date

Someone must have passed on the word that Jereth's cardiologist from Boise and his parents were looking at changing the heart surgery to Portland because someone from the surgery department came to see us this afternoon with an official letter verifying a scheduled surgery date of March 30th.

I was amazed at how much my stress level decreased when she brought that letter. Here's hoping the surgery actually happens next trip to Utah.

Out of PICU - into the NICU (Sort of)

Jereth was well enough to be moved out of pediatric ICU yesterday, but the infant floor is full so he was moved to the newborn ICU as a "boarder". That means he gets the care he would have received on the infant floor, but we have the restrictions of the NICU -- no eating in the unit, only two visitors at a time, no cell phone calls in the unit, and parents are not allowed to stay at the bedside overnight.

So for the second time in his life Jereth spent the night in a hospital without either parent (the first time was on Christmas Eve so I could be with the rest of the family at Grandma's for Christmas Morning). He survived and so did I, but neither of us was happy with it.

Looking Better

Jereth is looking better this morning. He is back down to 2 liters per minute of air flow and they are waiting for an open room to transfer him to the pediatrics floor.

The second RSV test came back negative, so they are pretty sure his breathing problems were caused by him aspirating some formula into his lungs when he spit up.

Pokes, Prods, and Progress



Tubes and wires



Jereth spent today resting between blood draws. It is usually difficult to get an IV into him or to take blood from his veins. Several of the tests ordered today involved getting blood from a newly poked vein. The nurses have stopped trying to have the tech draw his blood, and even the phlebotomy team hesitates to try getting blood from his veins. Since there are very few places where veins that could be used haven't already been damaged from trying (and sometimes succeeding) to draw blood, our nurses have started just calling the IV team right away. More pictures of his pokes and IV's are at the end of the post.

He won the heart of his nurse with his pleasant disposition, placid acceptance of all the pokes and prods, and the way he babbles and sings.

Surgery Postponed - Again



Jereth on CPAP

 Since the pre-surgery screening procedures on Tuesday Jereth has been uncomfortable and fussy. Last night he woke with a high fever (no, we didn't bring a thermometer to Utah, so I don't know how high it was) and he was really struggling to breathe. His oxygen monitor kept alarming so after several phone calls trying to figure out how to get him cared for without hanging out in an emergency waiting room full of sick people, we brought him to Primary Children's Emergency. We were assured that their waiting room was empty before we chose to come here.

Once we got here they took one look at him and we had nurses, respiratory therapists, and a doctor swarming like ants around him. They put him back on high flow air (he's been off for about a week), took his temperature (40 C or 104 F), put in an IV (it only took 3 tries), and took samples of blood and mucus for testing. The high flow air brought his oxygen levels back to normal, but his breathing rate was still very high, over 90 breaths per minute. So they put him on CPAP (Continuous Positive Air Pressure) which delivers an even higher rate of air flow. That brought his breathing rate down to the 60's.

A Wednesday of Waiting

Today has been rather uneventful. We didn't have to return to the hospital for more procedures as we had originally been told because they got everything done on Tuesday.

We just needed to wait to hear from the hospital to know what time to have Jereth there on Thursday and how to prepare him for the surgery (when to quit giving him formula - when to quit giving him clear liquids). When the call came it was with the news that his surgery has been pushed back due to an emergency case with a newborn. He is now supposed to be first on the list for Friday.

Pre-surgery Procedures

We spent several hours at Primary Children's on Tuesday for Jereth to have pre-surgery procedures. In preparation we stopped giving him formula and switched to clear liquids when we got to Mom's. Then at 9:30 am we turned off the feeding pump so there would be no reason to delay the procedures.

Once at the hospital a little before noon, we started out in Outpatient Surgery for him to have the electrocardiogram and echocardiogram. I asked about the plan for his chest x-ray because we had two different letters with different dates for the chest x-ray. When all was worked out we ended up getting all of the procedures done on Tuesday and didn't have to go back on Wednesday like we were planning.

Trip to Utah

Our trip to Utah on Monday night was uneventful until we got to Twin Falls, ID. The roads were clear and dry, the traffic light, and Jereth was calm and rested quietly.

Once we got past Twin Falls the roads got progressively worse. The sun was down, the roads were snowy with blowing snow across the road in gusts. Going over the pass between Idaho and Utah was scary - I was glad Roy is such an experienced driver.

Heading to Utah Tomorrow

Jereth, Roy, and I are headed to Utah tomorrow (Monday). We'll stay with Grandma Hatch tomorrow night then on Tuesday Jereth has chest x-rays, electrocardiogram (EKG), and echocardiogram (ECG) in preparation for the surgery. On Wednesday there are more presurgery appointments and we'll be told when and where to have him on Thursday for the heart surgery.

I'll keep things more updated once we're in Utah since there will be more to say than just - he's still growing and is stable.

Surgery Scheduled - Hopefully for Real this Time...

We got the call today from Primary Children's in Utah. They have finally scheduled Jereth's surgery - it will be Thursday, March 10th. We need to be in Utah on the 8th for the pre-surgery testing.

Still No Surgery Date

We met with Jereth's cardiologist again today. She is quite frustrated with Primary Children's because they still have not scheduled a surgery date. If we don't hear from them with a date by tomorrow (Friday) she will contact a pediatric heart surgeon from Portland and we may end up in Oregon instead of Utah for the heart surgery.

On a positive note, Jereth is now 9 pounds and 12 ounces (4.4 kg) and Dr. Walker increased his food intake and the amount of his heart medications to match his new weight.

A Little News - But Not Enough

We got a call from Jereth's cardiologist's nurse today. The Utah doctors need to know Jereth's blood type and Dr. Walker did not have it. The nurse wanted us to go to the hospital to get his blood typed, but I was sure that had been done during one of Jereth's hospital stays.

Later the nurse called back to say that St. Luke's had sent her Jereth's blood type - one less poke for our sweet baby boy. At least we know that someone in Utah is thinking about getting Jereth's surgery scheduled or they would not have worried about getting his blood type.

No news is NOT good news...

It's been over a week since our cardiologist told us the doctor in Utah was working to schedule Jereth's surgery, hopefully in February. She has not heard back from the Utah doctor and neither have we, so I'll be very surprised if the surgery happens in February.

On another note, Jereth did very well last weekend, going two days and nights without needing air. Then he started struggling to breathe again, so he's back using air assist. He had a couple of really tough nights, but seems to be doing fine again.

Surgery News

Jereth without the tubes and wires... for a few minutes.

We met with Jereth's pediatric cardiologist on Thursday. She said there is a cardiologist with Primary Children's that is taking the lead on getting Jereth's surgery scheduled. His goal is to have the surgery done by the end of February. Our doctor here said it will more likely be early March. We're hoping to have a definite date soon -- again.

Heading Home Again

We're heading home today. Jereth will need continued airway support when he sleeps, but can be without it while awake. We'll use the oxygen monitor to decide when we can decrease the air flow and when it needs to be increased.

We'll be following up with the cardiologist on the 10th, but according to the PICU doctor the echocardiogram (ultrasound of the heart) showed that the hole in the atrial wall is decreasing, but the bigger hole in the ventral wall is the same size. Dr. Walker should have something more about a date for the surgery when we see her. I'm hoping it will be a definite date, but won't be too surprised if there is still more "wait and see".

Getting Closer

Airway support was off for most of the morning and Jereth was able to keep his oxygen levels up where the doctors want it. Around noon he had the echocardiogram he would not settle down for on Monday, and the sedation hasn't worn off yet.

While sleeping his oxygen levels dropped and stayed down for several minutes so he is back on air support - right now it's at 1/2 liter per minute, but he still keeps setting off the alarm, so it will probably go up a bit before we go home.

The plan is to send us out to the main pediatric floor this afternoon and then home tomorrow.

Here until Thursday

It looks like we'll be here at St. Luke's until Thursday or Friday while they see just how well Jereth's airway has healed. The rate of flow will be slowly decreased until we determine just how much support he needs. Once that rate is determined we can take him home.

Back at St. Lukes, Boise

Jereth went through two tests and got tubes put in his ears today. He's in the Pediatric Intensive Care Unit at St. Luke's Boise at least until he has all of the anesthesia out of his system and is considered stable enough to return home - possibly longer.

Gastroenterologist Visit

Today we took Jereth to Dr. Henry Thompson, the pediatric gastroenterologist. He will be checking to see how well the Prevacid and Zantac are treating Jereth's reflux. The problem with a baby like Jereth who has a floppy airway is that reflux can irritate the airway, making it even harder to breathe.

When the rerflux is treated the airway issues can clear up or at least improve a little. Dr. Thompson will be taking tissue samples from the esophagus as well as the intestines. He said we should know the results by Wednesday.

ENT Specialist

We took Jereth to Dr. Jill Beck, the ear, nose, and throat specialist Dr. Walker referred us to. She is also the one who did a quick scope of his larynx at St. Luke's before we went to Primary Children's. She will be doing the follow-up from the work done on his throat in Utah.

She still has not received the report from Dr. Munz, the ENT in Utah who did the supraglottoplasty and bronchioscope. When I told her who had done the procedures she was quite surprised that she didn't get his report. I suggested she contact his office directly with the request since she knows Dr. Munz and figures the delay is not on his part but is more likely because someone at Primary Children's dropped the ball.

More Doctors - What Fun??

We met with Jereth's cardiologist again on Thursday. She has referred us to the ENT (Ear, Nose, and Throat Doctor) in Boise to follow up on the procedure Jereth had done in Salt Lake but the information from the ENT in Salt Lake has not been sent to either of them yet.

Next week the ENT would like to do a follow-up bronchioscopy to check Jereth's airway and see how he is healing from the supraglottoplasty (trimming of excess cartilage above his voice box). While he is sedated, she wants to bring in a gastroenterologist to take a look at Jereth's esophagus to see if the treatment he is receiving for reflux is effective or if something more needs to be done. During the same sedation, Dr. Walker wants to do a sedated echo cardiogram (heart study using ultrasound).

3 Months Old Today

Happy 3 month birthday, Jereth!!

We took Jereth to the the heart doctor yesterday. She feels like Jereth is doing quite well with the feeding tube and the high-flow air. In fact, he is doing so well that she is not going to rush to get his heart surgery done as soon as we had expected. It's looking more like the end of March, hopefully during Spring Break.

7 January 2011

We've been home now almost a week. Jereth is stable and growing. He's over 8 pounds on both doctor's scales as well as on the home health nurse's scale.

We have lots of medical equipment in the basement to take care of Jereth. There's an air compressor, a humidifier, a feeding pump, and an oxygen monitor. The air compressor and humidifier are to keep 5 liters/minute of air flow to keep Jereth's airway open. The feeding pump runs his feed into his stomache (we took the NJ tube out when it got clogged and Dr. Mumford approved going back to an NG tube). The oxygen monitor is to let us know when he knocks the air tubes (canula) out of his nose and struggles to get enough oxygen.

I went back to work on Thursday. I'm sure I miss him more than he misses me since he has Daddy to take care of him during the day.

New Year's Day

Our trip home on New Year's Day began with a visit from the resident physician over the pediatric floor at 7:15 am. Since Jereth has the rotavirus we were told to expect fever and diarrhea for a few more days with a need for Tylenol and Pedialite for rehydration. The doctor asked how comfortable I would be taking him home with those additional needs. Of course I told her we were ready to go.