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.