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.

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.

New Year's Eve 2010

Jereth's temperature last night and this morning hovered around 102-103 degrees Fahrenheit. His weight was down below his weight when we came to Primary Children's, due to diarrhea. The blood and urine cultures were normal and the viral panel preliminary results were negative, so a stool sample was tested. That came back positive for the rotavirus, a stomach flu virus, which explains the temperature, upset tummy, and diarrhea.

30 December 2010

This morning things were looking really good for getting us home on Saturday. Tonight Jereth has a temperature that is causing concern. To decide whether or not to send us home poor, sweet baby Jereth has been through the ringer tonight.

29 December 2010

There is a plan for us to go home -- well at least a tentative plan -- on Saturday morning.

Jereth is stable with the higher rate of air flow and is up to 7 lbs and 8 oz (3.4 kg). As long as he continues to gain weight and does well in the safety tests they have planned for him, we will be heading back to Idaho soon.

There are two safety tests planned for Jereth, one to make sure he will be able to handle the high flow being off for 30 minutes or more, to simulate him getting the nose-piece out of his nose without us noticing, and a much longer simulation of the ride home in a car seat.

28 December 2010

Out of PICU - Again
Yesterday Jereth had an upper GI Barium Swallow procedure (he didn't swallow the barium this time because of the aspiration risk - they used a tube to put it directly into his stomach) to see if he has problems with his stomach emptying into his intestines. That test came back normal which means he will continue with the NJ tube for feeding. The PICU doctors had discussed the possibility of putting a line directly into Jereth's intestines (a gastronomy) but the results of the upper GI don't support the need for one.