Jereth's Journey

Great Progress

2011-09-01T22:14:00.000-06:00

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...

He has been eating more and now weighs over 14 pounds! We're thrilled at his continued progress.

Although he still needs the feeding tube at night his progress is very encouraging.

Growing Again

2011-08-09T13:52:00.000-06:00

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

2011-07-26T20:06:00.000-06:00

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

2011-07-07T08:33:00.000-06:00

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).

Well, he took two ounces very well and continued taking a bottle for the rest of the evening and even had almost four ounces before going to bed - even though he spit up quite a bit.

So I left the tube out overnight just to see how he would do in the morning. Yesterday morning he downed a four-ounce bottle in about fifteen minutes. That felt like a great start, so we left the tube out and kept giving him a bottle throughout the day.

By the end of the day he had taken almost as much as he would normally get through the feeding tube. I'm going to call his doctor today and see if we can continue without the feeding tube as long as he continues to take a bottle well.

Recent Pictures

2011-06-19T18:25:00.000-06:00

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

2011-06-12T17:10:00.000-06:00

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.

Last week we had a bit of a hassle with the stuff we use to thicken his formula so he can take it in a bottle. Because he will aspirate (breathe into his lungs) formula we have to thicken it.

The thickener we've been using since we brought him home was recalled last week - and the stuff we had on hand was subject to the recall.

It took us a couple of days to get a different brand of thickener and another couple of days to figure out how to get the right consistency. Now we just have to get Jereth to like the new thickener and get back to taking as much by bottle as he was before the change.

Great Progress - Major Milestone

2011-05-24T22:37:00.000-06:00

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

2011-05-09T18:33:00.000-06:00

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

2011-04-20T22:29:00.000-06:00

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

2011-04-14T21:59:00.000-06:00

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.

Today's echocardiogram (ultrasound of the heart) shows that the surgery was successful and his blood is now flowing the way it is supposed to almost perfectly. Because of the size of the hole between his lower heart chambers the doctor had to put a stitch into his mitral valve. That valve has a little bit of leakage which is normal and will only be a concern if the leakage becomes significant in the future. He has very little excess fluid around his heart which is another indicator that he is healing well.

Dr. Walker got to see first-hand how much stronger Jereth's lungs have become. He got upset as she was examining him and showed her how well he can cry. It may seem crazy to be happy about a crying baby, but for so long he would look like he wanted to cry then give up with only a whimper or less, that it is exciting that he now has the strength in his lungs to let know when he is unhappy.

Home Again Home Again - Jiggity Jig

2011-04-09T19:55:00.002-06:00

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?

2011-04-07T15:53:00.000-06:00

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

2011-04-06T10:53:00.000-06:00

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.

On Monday Jereth had a high fever that spiked, then settled to a more low-grade fever. He also seemed uncomfortable most of the day. The doctors ordered preliminary blood tests that showed a high probability of infection (high C-Reactive Protein and white blood cell count).

To track down the infection he was tested for RSV, had a urine sample taken, and blood drawn from two different veins for a blood culture. The quick test for RSV and other viruses and the urine culture came back negative yesterday. This morning the secondary RSV test came back negative and the blood culture showed no signs of infection.

But the C-Reactive Protein level is still much higher than normal. So the doctor has ordered another blood test that checks another substance in the blood that marks infection. Depending on how that comes back she may have to call in an infectious disease specialist to help figure out what is going on.

For now, Jereth is still on intravenous antibiotics and has another 24 hours of a 72-hour prescription.

Then there is his heart rhythm. He had a short period where his heart rhythm was abnormal on Sunday night, but he looked fine and for the next 24 hours his rhythm looked fine. Then yesterday he started having a series of abnormal readings. First there was just a couple of times where he had a rhythm called supraventricular tachycardia (SVT) for a few seconds, then it would resolve back to normal.

The frequency of the SVT episodes increased and the cardiologist came to visit with me. He said that this type of rhythm is not life-threatening but it is not optimal for the heart. Jereth slept peacefully through most of the SVT episodes.

If Jereth had been having this type of rhythm before his surgery it would be easy to understand them happening now. Or if they had started right after surgery that would be easy to explain. But having SVT's start almost a week after surgery is very unexpected, especially when there has not been anything that would make sense as a triggering event.

For now they have started giving Jereth a beta-blocker. Since he started with this new drug he has had fewer SVT episodes and they have been shorter. There is still no explanation for what caused them but at least they are responding to the drug.

On a completely different note, Jereth got to try taking a bottle for the first time in over 3 months. The swallow study yesterday showed that he should be able to take thick liquids by mouth without too much chance of him aspirating the food into his lungs.

The speech therapist who did the swallow study came to our room later and watched as I let Jereth try the bottle. He seemed interested in taking the bottle, but has not developed the ability to suck on a bottle let alone to coordinate the suck, swallow, breathe pattern. We'll continue to work with him. It looks promising that he will soon start taking some of his food by bottle.

It's Gonna Be a Few More Days

2011-04-05T10:46:00.000-06:00

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

2011-04-04T11:33:00.000-06:00

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

2011-04-03T22:19:00.000-06:00

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.

So we are now in the surgical unit and there is a possibility for Jereth to be released tomorrow, but more likely on Tuesday. Jereth's right upper lung was not fully inflated in this morning's x-ray, so if it is still showing problems in tomorrow's x-ray we'll be here at least through Tuesday. If the things we've been doing for him today have taken care of the problem with his lung he should be released tomorrow.

Other developments: The final chest tube was removed, the IV stopped working so was removed but not replaced, his pain relief has transitioned away from narcotics to just Tylenol. He is looking very well.

Another Day in CICU

2011-04-02T22:39:00.001-06:00

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.

The second reason is that he had some fluid drainage from his chest drain tubes that might have contained lymph fluid. Sometimes during surgery some of the tiny lymph ducts get cut allowing fats from the lymphatic system to drain into the chest cavity. This can build up and put pressure on the lungs without a chest tube. Since Jereth still has a chest tube any fluid can be drained off. However, if the drainage continues and has fats in it he will have to keep the chest tube and have a change of diet until the lymph ducts can heal and no longer allow fats to drain into the chest cavity. We should know by tomorrow morning if this will keep us in the hospital longer.

Jereth also had a sedated echocardiogram (ultrasound of his heart) this afternoon - it was helpful that he had gone without food for a few hours so the sedation could be easily done. There were several echocardiograms done today, so we still have not received the results and don't have that confirmation that the surgery went well. This is another thing we should know by morning rounds.

Better Every Day

2011-04-01T22:20:00.001-06:00

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

2011-03-31T21:36:00.001-06:00

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.

Resting comfortably

Doing better

Third Try WAS the Charm

2011-03-30T21:10:00.001-06:00

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.

The rest of the pictures show the tubes, wires, and other medical stuff being used to keep Jereth alive and resting comfortably.

Surgery Day - 30 March 2011

We brought Jereth to the hospital today at 6:30am. We waited in Same Day Surgery for 30 minutes then they took us back to the exam room. In the exam room we met with the anesthesiologist, the cardiac surgeon, and a few others that were involved in the surgery procedure. They let us know what was going to happen and had us sign several consent forms.

At 8:00 am we handed Jereth over to the anesthesiologist and went to the surgery waiting room. A little before 10:00 am we were told that Jereth was ready to go and the surgery was beginning. An hour later the nurse practitioner came to find us and let us know that Jereth was on the heart and lung bypass and that the surgeon had begun repairing his heart. By 12:30 pm the surgery was finished and the nurse practitioner returned to tell us that everything had gone well.

Around 1:00 pm Dr. Kaza, the surgeon, came to tell us that everything went according to plan. He closed the shunt between the main artery and vein that normally closes shortly after birth, called the PDA. He also stitched the hole in the atrial wall closed and put some stitches to close a tear in one of the heart valves. And most importantly, he stitched some Dacron fabric into the wall between the ventricles to close the large hole.

We were able to join Jereth in the cardiac intensive care unit (CICU) by 2:00pm. He is on a ventilator, has 3 drainage tubes from his chest, lots of monitoring wires, and a central line for intravenous access to give medicines, blood, and fluids as well as for drawing his blood for testing.

The doctors and nurses are trying to make sure his heart rate stays steady but below 100 beats per minute and his blood pressure stays low to allow his heart to heal without tearing any of the stitching. It has taken time to get the right combination of medicines to control Jereth's pain without causing problems with the blood pressure or heart rate.

We are very grateful that he is doing so well. We appreciate all the love, thoughts, prayers, and positive energy sent his way.

Back in Utah

2011-03-29T14:42:00.005-06:00

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.
We finished up in x-ray quickly. There was only one other family waiting while we were waiting, but the waiting room was full when we got through with Jereth's x-ray.

From there, we took him to the lab to have his blood drawn and again did not have to wait long. The phlebotomist was one of very few who have been able to draw blood from Jereth the first try and she was able to get all the blood needed from the first poke.

After double-checking that we would be called with a time for the surgery for tomorrow we headed back to Grandma and Grandpa Hatch's for breakfast.

This afternoon we got a call from the hospital saying the cardiac surgery nurse practitioner was worried because we had not come in for the history. I let the nurse that called know that we had been in and were told that since the history was done when we were in on the 8th we did not need to go through that part again.

At this point I was getting worried that we would either need to go back to the hospital or that the surgery would be delayed. She assured me that they would take care of things on that end and I would get another call from a nurse with the surgery time.

A few minutes later there was another call from the hospital and another nurse asked questions about Jereth's health history then gave us instructions. He can have formula until midnight, then clear liquids until 5:30 am. We need to have him at the hospital by 6:30 am. It looks like he may actually get the surgery done this time.

Found Pictures

2011-03-26T11:58:00.007-06:00

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

2011-03-20T16:51:00.000-06:00

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

2011-03-17T16:57:00.002-06:00

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.

The cardiologist came by today because the doctor team on the infant floor wanted to bring in a specialist before making any changes in Jereth's heart medication. The cardiologist talked like he feels the Lasix dose is correct and he ordered a chest x-ray to compare to the ones taken last week.

After looking at the x-ray, the first cardiologist returned with a second cardiologist. They feel like Jereth looks good and may not need to be watched as carefully as the doctors on the infant floor seem to feel. Crossing my fingers that the cardiologists will be listened to and we'll be sent home without too many more tests - especially ones that require drawing blood from his veins.

Sticking Around

2011-03-15T23:17:00.002-06:00

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.