Sunday, August 29, 2010

Home Again!

We are once again home! Friday, Dr. Rick had told us that if Jethro's chest x-ray looked good Sat. morning, and he was tolerating his feeds well, then we could go home. So, I asked the obvious question, "What do you consider 'tolerating'?" He said that Jethro had to not throw up with every oral feed. And, in reality, he would have been fine with Jethro not taking any oral feeds ~ especially since he was tolerating the continuous feed just fine. I was the one wanting him taking his food orally. :-)

So, Jethro threw up his next feed. Then I began to think...not really "began" began, but began to think about why he wasn't keeping his oral feeds down. So, being a Mama with mad medical skills (Ha!), I came up with a theory. Dr. Rick was a bit skeptical, I think, but he agreed that I could hold Jethro's continuous feeds for a certain amount of time after an oral feed ~ depending upon how much he took orally. The next oral feed we did that, and this baby hasn't thrown up since. :-) So, after he had his chest x-ray yesterday morning, Dr. Rick gave us the go ahead to go home!

Jethro and I were both so happy to get home. And the other children (and Daddy!) were very glad to have us home again too. :-) We have some work to do...getting him back to where he was in calories and volume, and we need to get PT set up again, and go back to the cardiologist this week, but we are so thankful to be home once again.

Friday, August 27, 2010

6 Months, 1 Day

What a cute baby! I get to hear this a lot. :-) And, I must agree. :-D This adorable child is now 6 months old...and looking great! Considering that he has a major heart defect and was born dead. You've come a long way, baby!

Back to being a happy boy...for the most part.
Jethro is doing well. I am hopeful that we will head home sometime during the weekend...really hoping and praying for tomorrow. It will mostly depend on how he tolerates his feeds. His formula has been changed about 4 times since yesterday. Originally, after surgery, they put him on Infaport. This is a formula that has a high percentage of MCT oil...which means that those fats are absorbed into the system, rather than going through the digestive tract. This is given to prevent Chylothorax, which can be dangerous...and they like to prevent things like that. Because of Jethro's defect, that puts him at high risk for developing Chylothorax. However, Jethro had some issues with the Infaport. For some reason, his gut was not moving it through, and at least some of it was sitting in his tummy, curdling. Yeah...I hope you're not reading this, eating supper. So, then he was throwing up this thick chunky stuff. Basically, a milk-fed baby version of a hair-ball.

They did some GI testing, we had a GI consult, and the gist of it is...put him on a different formula. So, we are moving forward. He's on a new we're trying to get him to keep it all down. On the up side, now when he's throwing up, it looks like what went in. :-)

So, at the moment, I'm feeling optimistic, and am hopeful that we will be going home tomorrow. We'll see ~ this is Jethro we're dealing with. :-)

Wednesday, August 25, 2010

Day 7 Recovery (Updated)

Jethro has been throwing up some "sludge". It's icky and thick and doesn't look like anything good. No one has ever seen anything like it. This morning they decided that they will do an upper GI, and we'll go from there. I will probably just add an update to this post later today after we have an answer...or not. :-)

Anyway, because they don't know what's going on, we are here for at least another day. The danger is that what he is throwing up is so thick if he were to aspirate it, it could really be a serious problem.

Prayers for wisdom for the Dr.s and some answers to what is going on would be greatly appreciated.
So, Jethro had an upper GI which went really well. However, they didn't give him any Barium stuff orally, because apparently the order wasn't specifically written that way, and since he has a G-tube, they just put the barium through it.

He had gone a little over 24 hours without puking...which was good. So, he was getting fussy and I sat with him and gave him a bottle. He drank about 50mL (not quite 2oz), and threw it all up, along with more of the solid icky stuff. Which means that he will have another upper GI (this time looking at the esophagus), and a GI consult tomorrow.

Right now, the earliest we are looking at being discharged would be Friday. Other than that, he had a pretty good day. He didn't get a lot of sleep last night, so the goal today was to leave him be as much as possible and let him rest ~ he's getting to the point of exhaustion where every little thing sets him off, and he just fights going to sleep. :-( Poor little punky needs to be home...Mama needs to know he's ready to be home.

Tuesday, August 24, 2010

Day 5 Recovery

It's late, so I will make this short. Jethro is doing well. The central line is out...however, where it was is red and ugly. It looks as though he has developed a yeast infection at the site. He is still receiving some IV meds, so he has a peripheral line in his scalp, but this evening it's beginning to look like it may not be long before it's no good. Have I mentioned that Jethro is hard on equipment? :-)

He is much more himself today. Lots of smiles, he talked to just about everyone that came into his room, he found his feet again and began playing with them. He even took 30mL of formula orally.

Tonight he's thrown up a couple of times, not necessarily a lot of volume, but it's chunky and funny colored. (Sorry if that's TMI!) So, now we're trying to figure out what he's doing. For some reason, this child can't do anything easy or normal. I'm sure that's a quality God can really do something spectacular with, but right now, I don't know what it would be. ;-)

Anyway, if he doesn't do something that would be a setback, I think within the next few days we'll be outta here. Not that I'm holding my breath.

Saturday, August 21, 2010

Day 3 Recovery

This morning, Jethro was fussy. He didn't settle very well, and although he wasn't over the top agitated like he had been on Thursday, he was somewhat agitated. Since Thursday night, he had only been given Tylenol for pain. Late morning, his nurse gave him some fentynal (sp) very diluted and very slowly to help him settle down. It worked beautifully, but not for long. It doesn't have a very long "life". So, the intensivist decided that (understandably), everyone was leary of dosing him with pain meds, but now he was in pain. :-( So, they decided to give him a dose of Morphine and something to help him sleep. It worked wonders.

He has been getting respiratory therapy and that is helping with lung capacity. They also pulled his chest tubes today, and I think that has helped tremendously with his discomfort level.

His feeds are up to 20mL/hour, and hopefully either tomorrow or Monday we can begin working on oral feeds again ~ although going home will not be dependent on that.

Friday, August 20, 2010

Day 2 Recovery

I will possibly post more later in the day. Jethro (and Mama!) had a rough night. When the shift change happened, he was very agitated. He had been agitated off and on all day. We couldn't really determine if he was uncomfortable, or if it was a reaction to meds. At one point, in the early afternoon, he had quit breathing, and they had to bag him.

So, at shift change, we watched and waited. Mike had gone home and gotten everyone from Logan on down and brought them up so that they could see Jethro, and then we went and had some supper. After I got back, I posted on Facebook and wondered how concerned I should be. There were just several little things ~ the agitation, he was very "rattly" sounding, he hadn't cried since being extubated, he hadn't had his eyes open much, etc ~ that were concerning to me.

The night nurse and I talked about some of my concerns and we watched. She decided that she would take care of her other kiddo first because he was "simple". So, when she got back into our room, she decided that she would give Jethro just a bit of Versed to calm him while she did all of her evaluation stuff. She checked his pupils first, just so that she would have a baseline for him, and then gave him just a little Versed. Almost immediately, he became unresponsive. His respirations dropped into the single digits, he was limp, he just wasn't really responsive to stimuli, etc. She called the charge nurse, and we continued to try to stimulate him and keep him taking breaths. The charge nurse came in and we talked. I told her how concerned I was about how he had been since coming up from surgery. And that he just wasn't showing any signs of any sort of "normal" for him. The cardiologist had been in several times yesterday, but she had not seen him when he was in one of his "non-responsive spells" (I do not want to give the wrong impression of his Dr. She was concerned, and made orders accordingly so, but things did dramatically change after she left). So, then we called in the Intensivist and asked what he thought.

He decided that Jethro should go down and have a CT done. He thought from our description of how he was behaving, that his little brain just wasn't telling his body appropriate responses to pain or pain meds. But, since we were all concerned/worried about how he was doing, he felt a CT was the way to go.

The charge nurse got him all ready to transport (no simple feat, with several IV pumps and numerous tubes and cords attached. And then he decided he didn't want to breath. :-/ I was slapping his feet and shaking him, the nurse was pinching him, and he just didn't really want to breath. They called the Dr. in ~ the nurse said she was worried about trying to transport him without intubating first. They decided to give him some Narcan (it reverses the effects of narcotics). And it was like someone flipped a switch. Jethro opened his eyes and his pupils were dilated almost to normal, he coughed and quit being all gurgly sounding, he started to cry and he began to breath better.

Apparently, it is a quick acting drug, but I fully believe it was God answering the many, many prayers that were going up on Jethro's behalf. I'm not sure the drug even had time to get into his little body from the IV tube before he was responding. It was instantaneous. The Dr and nurses were amazed as well. We went down for the CT and all looks good. Once we got back up to his room, his temp had dropped some, and he was resting peacefully.

I did stay with him until about 1 am, just for my own peace of mind, but he was fine. And now we know that he is hyper-sensitive to pain meds.

This morning, he has been awake a fair amount, and he is much more himself than he was yesterday. It's good to see my baby. :-)

Please continue to pray for a good recovery for Jethro. And give thanks along with us that God has placed us in the midst of outstanding Dr.s and nurses ~ and that He is answering prayers and keeping Jethro in the palm of His hand.

Thursday, August 19, 2010

Day 1 Recovery

Immediately following surgery ~ still intubated
Jethro did well yesterday and last night. He did spike a fever in the night, but there were no infection markers in his labs, so the nurse thought that it was a "rebound" fever from being on bypass.

Extubating him went well, for the most part. It made him quite unhappy to have that tube pulled, so his sats dropped to 19 8-O ~ not good! When the night nurse came on, his day nurse said, "Jethro is a baby with a 2-yr old attitude!" I suppose that if anyone has a right to pitch a fit, it's a baby who's had to go through a few surgeries.

This morning, he is looking good, and Dr. Sunshine wrote orders for starting to feed this baby, and to begin both Speech and Physical therapy. Everyone seems pretty happy with how Jethro is doing ~ but they are also keeping in mind that he has a tendency to do well, and then take a dive. :-P

24 hours after surgery ~ extubated and looking good!
His blood pressure is higher than they would like it, so that is a prayer request, and his lungs need to rebound from surgery ~ right now he is o2 dependent, so that is another prayer request. Dr. Sunshine wrote for respiratory therapy as well, to help get his lungs back in shape.

Wednesday, August 18, 2010

The Glenn

Jethro has been in surgery for about 5 minutes now. I just received a call from one of the nurses, and getting him under sedation went well, and so far, everything is looking good. Please pray for his safety during surgery and for steadiness of hand for the surgeon, Dr. Worrall.

11:19 am ~ Nurse called from the OR, Dr. Worrall is done with the procedure, in a few minutes they will begin taking Jethro off the heart-lung bypass, once off the bypass, they will do an echo. If everything looks good on the echo, they will begin closing. So far, Jethro has done well.

11:54 am ~ Dr. Worrall is happy with how everything looks on the echo, so they will continue closing.

1:12 pm ~ He's done!! Dr. Worrall just came in and told us everything went well. My baby has sats in the *80s*!! He's pink! We should get to see him in about 1/2 hour. 

Please join us in praising our Heavenly Father in His goodness to our sweet Jethro. 

Once again, thank you so much for your prayers on our family's behalf.

5:40 pm ~ Jethro is doing well. They will likely take the vent tube out soon. He does have a slight fever of just over 100, prayers that it would not go higher would be appreciated.

Tuesday, August 17, 2010

Surgery in the Morning

Jethro's surgery is in the morning. He is scheduled for 7:15. Please be praying.

Tomorrow, I will have one post that I will edit throughout the day to update.

Friday, August 13, 2010

Getting Closer

Wow. It's Friday. Today I go and pick up the Lovenox shots for Jethro. Tonight will be his last dose of Coumadin before surgery, and then Sunday, we start the Lovenox shots. I really dislike giving my baby shots, but it is a teeny tiny little needle, and it's just a little bit of meds, so it's not too terribly bad. However, he always looks at me, like, "you're not supposed to be doing this to me, Mama!" :-( I am very thankful that so far, God has blessed me with the fortitude to do whatever I have needed to for this precious child. And make no mistake, lots of prayer goes in to each new skill!

Jethro's nutritionist was here yesterday, and she is thrilled with his growth. He is now in the 50th percentile in overall growth, and I think she said 90% in head growth. She said that his growth defies reason. Heart babies just don't grow like he's doing. We know that it's all God. His hand upon Jethro has been evident from the beginning.

Tuesday morning, we go in to the surgeon's office and then following that appointment, we'll go to the hospital and be admitted. I believe they are admitting him to the PINT unit, not PICU. All the pre-op "stuff" will be done ~ any blood tests, meeting with the cardiologist, etc. Then Wednesday morning at 7:15am, he goes in for surgery. I am thankful that they will admit him a day ahead of time. If they didn't we would still end up spending the entire day in town, and probably get a hotel room for the night before, but because of Jethro's overall fragility, they don't even hesitate to admit him ahead of time.

Jethro has become quite the happy baby. He is very engaged with his surroundings and loves to coo and chatter at anyone who will stop and talk to him. Daddy says that Jethro is addicting. You can't just walk away from him ~ he really holds your attention. One of his favorite things to do is blow raspberries. Sometimes, he gets so much foam going that he looks rabid! :-D

Please pray that he stays healthy over the next few days. Pray for wisdom for the surgeon and cardiologists, and a steadiness of hand.

Thank you so much ~ your prayers are invaluable to us!

Wednesday, August 11, 2010

Worship Wednesday ~ What Grace Is Mine

I first heard this song last year shortly before Resurrection Sunday. I totally fell in love with it. Keith and Kristyn Getty have a way with words that encourage a worshipful heart.

This song has a lovely, gentle rhythm to it, and the words are beautiful. It speaks of deep and wonderful truths. God calls through the dark night to find our distant soul, mercy from His scars that pleads for me, He gives us hope that never dies, my soul soars beneath His wings ~ My Savior lives and reigns FOREVERMORE!

I take bow my heart, take up my cross and follow Him.

Oh Lord, may this be the reality of our lives, and not just words we sing.

Friday, August 6, 2010

Jethro Update

Wednesday, Jethro had a brain and heart MRI. He had to be sedated and intubated for the procedure, so he was not allowed food after 6:30 in the morning. I was able to give him Pedialyte until about 10:30. Check-in was at 12:30. We went in early, because he also needed to have his INR (measures the coumadin level in his blood) checked. They were 2 1/2 hours late getting him in for the MRI, so it was a long day! He kept the nurse anesthetist on his toes, but they said he did well. He took 10mL of milk while in recovery, so I was very happy about that. Poor little kid must have been starving, and he was a little hoarse sounding from being intubated, but it was a milestone for his oral feeds! It was 7:30 before we got away from the hospital.

Yesterday, he had an appointment with feeding and growth and Karen was very happy with how well he's doing. He's taking between 4 and 5 ounces orally per day now. After watching him, she thinks it's mostly an endurance issue that's he's not taking more, so we are hopeful that after his surgery when he is better oxygenated, he will begin to take more by bottle.

Today, we had our first in-home physical therapy session. He's had PT up at Sacred Heart, but we haven't been able to connect with the gal that is supposed to come here. We've had appts set up, but every time he's ended up in the hospital. So, today's appt was only about a month and a half or two months in coming. We visited some, she observed him, and then did an evaluation. Mostly, physically, he's at about the level of a 3 month old. He does have some things he does that are spot on age wise, but he is definitely behind. However, when you figure in the amount of time that he's spent in the hospital, then it puts him right at 3 months. Overall, it was an encouraging visit. He'll have one more appt with her before he's admitted to the hospital for surgery.

Right now the plan is to go in the morning of the 17th, and he'll have an appt with the surgeon, and then we will head across the street to the hospital to be admitted. On the morning of the 18th, at 7:15, he'll be in surgery. Here is a post I wrote not too long ago that has a link that explains what this next surgery will be.

He's also having some mucous issues. As best we can tell, just from observation, he is not swallowing his spit. It would seem that it is draining down his throat, but not getting past the esophagus. After about so much collects there, it gags him and he throws up. Poor little punkin. He strains and strains to get it out. I have never seen a baby that struggles so hard to throw up. And he's not necessarily throwing up the contents of his tummy. So, I'm hoping that the next time we see the Dr. he might have some suggestions for ways we can help him.

So, that's been our week. Just a little busy. :-) Please pray that Jethro would stay healthy and this next surgery can go forward as planned. His O2 sats are all over the place, it doesn't really even matter how much oxygen he's on. And, he's getting tired of the cannula. He manages to get it out of his nose, and when we place it back, he really hollers about it.