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.
20 April 2011
14 April 2011
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.
09 April 2011
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.
07 April 2011
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.
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.
06 April 2011
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.
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.
05 April 2011
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.
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.
04 April 2011
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.
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.
03 April 2011
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.
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.
02 April 2011
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.
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.
01 April 2011
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.
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.
Subscribe to:
Posts (Atom)