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.
31 December 2010
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
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.
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
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.
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.
26 December 2010
26 December 2010
Christmas Weekend Excitement
After a pleasant Christmas Eve and Christmas Day, Jereth struggled last night and is back in the pediatric intensive care unit (PICU).
Friday morning we had a parade of doctors. We had 3 hospitalist doctors, the on-call doctor, the resident, and the intern visit first. Then we had two heart doctors, the specialist and a fellow. Finally we saw the lung doctor. The plan at that time was to continue trying oral feeds and a lower air flow rate, trying to fine-tune how much help Jereth needs and get him ready to go home.
After a pleasant Christmas Eve and Christmas Day, Jereth struggled last night and is back in the pediatric intensive care unit (PICU).
Friday morning we had a parade of doctors. We had 3 hospitalist doctors, the on-call doctor, the resident, and the intern visit first. Then we had two heart doctors, the specialist and a fellow. Finally we saw the lung doctor. The plan at that time was to continue trying oral feeds and a lower air flow rate, trying to fine-tune how much help Jereth needs and get him ready to go home.
23 December 2010
23 December 2010
Jereth got to see the younger four of his siblings for the first time since the Wednesday before we left Idaho. While he was in the PICU the children under 12 were not allowed to visit, so when the family got here Tuesday night JD, Karianne, Dustin, and Sam had to wait in the waiting room but were not able to see Jereth. Each of them were able to hold him today and they really enjoyed being with him.
22 December 2010
22 December 2010
Out of PICU
Jereth is doing well enough to be moved out of PICU today. The high-flow air was down far enough that he is now on regular oxygen which means he no longer needs to be in intensive care.
We are enjoying being in the infant pediatric wing. He rests comfortably and they are slowly trying to wean him off the oxygen completely if he can handle it. There are still a couple of tests they want to run before deciding when to send Jereth home.
There has been talk that he might be released before Christmas, but I am not getting my expectations up. I would rather he stay long enough to be certain he will be able to remain home until he is ready for the surgery.
Jereth is doing well enough to be moved out of PICU today. The high-flow air was down far enough that he is now on regular oxygen which means he no longer needs to be in intensive care.
We are enjoying being in the infant pediatric wing. He rests comfortably and they are slowly trying to wean him off the oxygen completely if he can handle it. There are still a couple of tests they want to run before deciding when to send Jereth home.
There has been talk that he might be released before Christmas, but I am not getting my expectations up. I would rather he stay long enough to be certain he will be able to remain home until he is ready for the surgery.
21 December 2010
The plan was to try taking Jereth off the ventilator at 2:00 pm today. He had other ideas. By 12:30 he had the tube partly untaped and coming out of his throat, so the doctors approved taking it out early. Because we were not sure what caused his airway to be blocked there was concern that he would have to go right back on the ventilator so everything was prepared in case they had to put another tube in.
21 December 2010
20 December 2010
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| After the bronchioscope |
Jereth had his first procedure requiring sedation today. Although the procedure went well, the aftermath was scary.
To prepare for a bronchioscope where a doctor looks at his airway with a tiny camera all the way down to his lungs, Jereth's feeds were stopped at 5:00 am. He was a very sweet boy for having an empty tummy all day long. I held him most of the day and he slept quite well.
19 December 2010
19 December 2010
Sundays in a hospital are usuallyquiet and uneventful. Today was no exception. Jereth and I spent a quiet day with no new tests or procedures done.
Tomorrow he is scheduled to have a scope of his airways down to his lungs and possibly a simple laser surgical procedure to repair his larynx if the scope shows the procedure is warranted. He will also have a swallow study, where he will drink a mixture containing barium, a radioactive element, and x-rays will be used to see what happens when he swallows.
The nurse talked like he will be sent home (without the heart surgery) as soon as they can figure out what is going on with his airways and he can be weaned off the high-flow air.
Tomorrow he is scheduled to have a scope of his airways down to his lungs and possibly a simple laser surgical procedure to repair his larynx if the scope shows the procedure is warranted. He will also have a swallow study, where he will drink a mixture containing barium, a radioactive element, and x-rays will be used to see what happens when he swallows.
The nurse talked like he will be sent home (without the heart surgery) as soon as they can figure out what is going on with his airways and he can be weaned off the high-flow air.
18 December 2010
18 December 2010
Today the doctors explained that they don't feel comfortable performing heart surgery on Jereth right now because they don't see the expected indicators that he is in heart failure. His poor growth and difficulty breathing are a problem, but they don't feel that the VSD (hole in his heart) is the primary cause of either problem.
At this time they believe there is a problem in his lungs that combined with the malacia (weak airway walls) is causing his breathing problem. To perform surgery on his heart right now could damage his lungs further due to the bypass machine that is used to take over the heart/lung function during the surgery. So I met with a pulmonologist (lung doctor) today.
At this time they believe there is a problem in his lungs that combined with the malacia (weak airway walls) is causing his breathing problem. To perform surgery on his heart right now could damage his lungs further due to the bypass machine that is used to take over the heart/lung function during the surgery. So I met with a pulmonologist (lung doctor) today.
17 December 2010
17 December 2010
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| Jereth in the transport incubator |
16 December 2010
16 December 2010
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| Ready to make a trip to Utah |
Dr. Walker came by this evening to love on Jereth before we go tomorrow morning. She expressed her confidence in the team at Primary Children's. She is grateful they recognized the struggle he is facing and the need to get his heart repaired so he can start to grow.
We're supposed to be leaving here at 9:00 am. Once we get to Salt Lake the doctors there will evaluate Jereth and start the process for scheduling his surgery. Until the doctors there see him in person they can't make a final decision about when the surgery will be best for him. There are a lot of factors to consider which is why I'm grateful that a team of experts will be calling the shots.
15 December 2010
Surgery Update
It looks like our most important Christmas present this year will be a mended heart for precious baby Jereth.
Dr. Walker called this morning. Jereth's surgery is scheduled for next week in Salt Lake City, Utah. St. Luke's is arranging for an air transfer on Friday to Primary Children's Medical Center which means Jereth and I will be flying to Utah. Dad and the rest of the family will drive down later.
Dr. Walker called this morning. Jereth's surgery is scheduled for next week in Salt Lake City, Utah. St. Luke's is arranging for an air transfer on Friday to Primary Children's Medical Center which means Jereth and I will be flying to Utah. Dad and the rest of the family will drive down later.
14 December 2010
14 December 2010
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| Jereth's Gift from Santa |
The Boise Fire Department brought Santa Claus for an early visit to the pediatrics floor of St. Luke's hospital today. Jereth got a stuffed animal (I think it's a cat, but I can't be sure) from the big man himself, but I forgot to get the camera out until after Santa had already left.
13 December 2010
13 December 2010
Scope Results
The scope of Jereth's upper respiratory tract confirmed a moderate case of laryngomalacia or weak walls of the larynx. When he breathes in the moving air creates an area of low pressure in the larynx. Since his larynx walls are weak, the larynx collapses and makes it difficult to breathe.
Dr. Beck who did the scope said he appears to also have mild tracheomalacia or weak walls in the trachea. Both are conditions that are made worse with reflux so the treatment for reflux he is getting should help. Neither condition is severe enough to need special treatment and the walls should get stronger as he gets older. To confirm the tracheomalacia would require a scope with Jereth sedated so the scope can get past the vocal cords. Since the treatment would not change with a confirmed diagnosis there's no good reason to do a sedated scope.
The scope of Jereth's upper respiratory tract confirmed a moderate case of laryngomalacia or weak walls of the larynx. When he breathes in the moving air creates an area of low pressure in the larynx. Since his larynx walls are weak, the larynx collapses and makes it difficult to breathe.
Dr. Beck who did the scope said he appears to also have mild tracheomalacia or weak walls in the trachea. Both are conditions that are made worse with reflux so the treatment for reflux he is getting should help. Neither condition is severe enough to need special treatment and the walls should get stronger as he gets older. To confirm the tracheomalacia would require a scope with Jereth sedated so the scope can get past the vocal cords. Since the treatment would not change with a confirmed diagnosis there's no good reason to do a sedated scope.
12 December 2010
12 December 2010
Today has been a quiet day, letting Jereth sleep as much as he will. His weight has increased slightly while here, from 3.0 kg (6 lbs 10 oz) to 3.1 kg (6 lbs 13 oz) and he is breathing much easier with the forced air therapy.
Tomorrow Doctor Beck will scope his upper respiratory tract to see how much damage there is from reflux and how much of his breathing issue comes from malacia, weak walls in the airway.
Once she has the results of the scope, Dr. Walker will contact the doctor at Primary Children's Medical Center in Salt Lake with that information as well as the results of the echocardiogram he had on Friday. She expects to hear back from that doctor quite quickly and they will determine how soon the surgery can take place. We're hoping to know something a little more definite about the timing of the surgery by Wednesday.
Tomorrow Doctor Beck will scope his upper respiratory tract to see how much damage there is from reflux and how much of his breathing issue comes from malacia, weak walls in the airway.
Once she has the results of the scope, Dr. Walker will contact the doctor at Primary Children's Medical Center in Salt Lake with that information as well as the results of the echocardiogram he had on Friday. She expects to hear back from that doctor quite quickly and they will determine how soon the surgery can take place. We're hoping to know something a little more definite about the timing of the surgery by Wednesday.
11 December 2010
11 December 2010
Back in PICU
We started the day with a trip to Dr. Walker, the pediatric cardiologist. Jereth had another echocardiogram then we met with the doctor. She had considered doing a sedated echocardiogram but since the doctor at Primary Children's will need to do that procedure before the surgery she chose not to do it here, too.
When Dr. Walker saw how much Jereth was struggling to breathe and considered that he still has not gained much weight, she decided he needs more help than he was getting. She sent us back to the pediatric intensive care unit (PICU) at St. Luke's Regional Medical Center in Boise.
We started the day with a trip to Dr. Walker, the pediatric cardiologist. Jereth had another echocardiogram then we met with the doctor. She had considered doing a sedated echocardiogram but since the doctor at Primary Children's will need to do that procedure before the surgery she chose not to do it here, too.
When Dr. Walker saw how much Jereth was struggling to breathe and considered that he still has not gained much weight, she decided he needs more help than he was getting. She sent us back to the pediatric intensive care unit (PICU) at St. Luke's Regional Medical Center in Boise.
09 December 2010
9 December 2010
Dad and Jereth had a busy day while I was at work today. The insurance company called to set us up with a case worker to follow Jereth's medical needs and work with us to keep costs down for both us and them. Then the home health nurse came for her weekly visit.
Jereth has gained another 7 ounces. He is up to 6 lbs and 10 ounces!!
Jereth has gained another 7 ounces. He is up to 6 lbs and 10 ounces!!
07 December 2010
7 December 2010
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| Baby Bright-eyes |
He's struggling so much just to breathe that he doesn't have much energy left to eat, so he's getting more and more of his nourishment through the tube. The therapist tried a technique to get him to take more from the bottle, but after seeing how he struggled told us that it would be better to go ahead and give him almost all his food through the tube. That way he can use more of the Calories he is taking in to help him grow.
04 December 2010
4 December 2010
Reflux Issues
Our home health nurse got to see firsthand on Thursday what happens each time Jereth spits up. It is a rough experience for him and he gets sweaty, pale, and clammy. She called the doctor's office to see if they would call in a prescription for reflux for him.
Friday we got a call from the doctor's office saying that Dr. Mumford was out of town but his partner, Dr. McGuffey had approved a prescription and we could pick it up at the local Albertson's so we'd have it for the weekend. So we went to Albertson's after I got home from work and the adventure started.
Our home health nurse got to see firsthand on Thursday what happens each time Jereth spits up. It is a rough experience for him and he gets sweaty, pale, and clammy. She called the doctor's office to see if they would call in a prescription for reflux for him.
Friday we got a call from the doctor's office saying that Dr. Mumford was out of town but his partner, Dr. McGuffey had approved a prescription and we could pick it up at the local Albertson's so we'd have it for the weekend. So we went to Albertson's after I got home from work and the adventure started.
02 December 2010
2 December 2010
Another Snow Day
Icy roads this morning meant another day of no school, and another day for me to enjoy cuddling with little Jereth.
Home Health Nurse Visit
The nurse, Shawn, came this afternoon to weigh Jereth - he's up to 6 lbs 3 ounces from 5 lbs 14 ounces on her scale last week. Jereth has been spitting up quite a bit since he started having enough in his stomach to spit up, and the nurse felt there might be value in getting him a medicine for reflux. She's going to check with the doctors, both our local doctor and the pediatric cardiologist, to see if they believe it will help him.
Icy roads this morning meant another day of no school, and another day for me to enjoy cuddling with little Jereth.
Home Health Nurse Visit
The nurse, Shawn, came this afternoon to weigh Jereth - he's up to 6 lbs 3 ounces from 5 lbs 14 ounces on her scale last week. Jereth has been spitting up quite a bit since he started having enough in his stomach to spit up, and the nurse felt there might be value in getting him a medicine for reflux. She's going to check with the doctors, both our local doctor and the pediatric cardiologist, to see if they believe it will help him.
01 December 2010
1 December 2010
Snow Day!!
No school today so I didn't have to go to work and got to spend more time with my precious little Jereth. We snuggled and cuddled and enjoyed a lazy day. Jereth's brothers and sisters were glad to have more time at home with him, too.
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| Last Night's Snowfall |
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