Monday, July 13, 2009

I might as well make it official

I've been working on a new blog this week, and I am hereby officially redirecting this blog to:

Sunday, July 12, 2009

Isaac Update 07122009 0719

We had an uneventful night. Isaac opened his eyes for a few moments again and went back to sleep. He peed a lot and lost a bit of weight, though he has a long way to go before he has returned to the nine pounds he was when I brought him in. Prayer requests for this morning: -Isaac's blood sugar is too low, so his ketogenic diet TPN is being discontinued by the intentivist and he'll be put on regular diet TPN as soon as the TPN is ready. (TPN is IV nutrition, and the ketogenic diet is a low carb diet used to manage some metabolic diseases among other things). -There is much debate over how to manage Isaac's needs - should they treat him like a regular cardiac kid or like Danny. How much sugar does he need? How much fat and protein? What supplements? Please pray that God will grant the doctors much wisdom in this area. EAch doctor has his own way, and when they argue, they stress me out. -Isaac's lactate levels have risen back to around 7. Its been steadily rising from 4.9 since yesterday afternoon. Normal is around 2. Danny was pretty much never below 7. The rise in Isaac's could have to do with the blood sugar issues. Or the fluid overload. or something else entirely. Please pray that the lactate levels go back own. Other than that, it's another day of watching and waiting and fine tuning treatment according to Isaac's needs.

Isaac Update 07112009 2019

Today was eventful in a good way. Isaac is no longer on epinephrine! His lactate level is 4.7, which is still high (normal is less than 2), but Danny's lactate level was never lower than 7. That is one of several things that show that Isaac is different than Danny. Even if he has the same thing, he's much less severely affected.

I had my emotional breakdown this morning. We all knew it would come, and it did. I'm sure that it won't be the last one either, but the first is usually the worst. However, I was rescued from my pity-party by my husband and a old friend from the Little Light House - both of whom God used to speak peace to my heart and to calm my fears and ease my frustrations. God gave them both the ability to see though my foolish concerns and speak wisdom to me. In spite of it all, God is good, and He continues to bless us in the circumstances that we are in.

I don't understand His purpose in all of this, but I'm going to choose to trust Him anyway. Danny taught us that God is sovereign and faithful and true. Each of our other boys has lessons for us. I'm sure Isaac is going to teach us plenty.

edited to add: I am realizing that I need to tell you all that the perceived infection (if it existed) is probably going away with the broad-spectrum antibiotic that Isaac's on and the prayers. The cultures aren't growing anything. And he's peeing much better, though he is still puffy. He has a way to go in that area.

Saturday, July 11, 2009

Isaac Update 07112009 0652

The night was uneventful. There was a tiny bit of weaning of medication. And some lab work. And a transfusion. And some sleeping. That was about it. We saw some old friends, too.

Please continue to pray for
-Isaac's blood pressure to remain consistent as the medications are very slowly weaned
-Isaac to be able to rest well today
-our other boys to have a wonderful day with Mimi and Popsy
-Jon and I as we move beyond shock and disbelief that this has happened, and because waiting is hard.

Isaac Update 07102009 2041

Well, it was the uneventful day we were hoping for. There's not much going on this evening except meds and labs and more waiting on labs and such.

Isaac is now warmed up to 96.8 degrees F. His color looks good, his output is now appropriate and he got a visit from Drew today. Drew had a lovely birthday and finished it off with a visit to Isaac.

Isaac Update 07102009 1014

Isaac's labs show that he may have an infection brewing. Please pray.

Isaac Update 07102009 0622

It's another day of waiting. And today we get to warm him up. Isaac's body temperature has been kept at about 92 degrees F for the past couple of days to protect his brain and organs from the effects of the hypoxic event he suffered while he was being resuscitated. All of his blood gases are looking about the same (normal ph with elevated lactate and slightly low bicarb). His kidney function has improved a bit, but there is still a lot of room for more improvement. He hasn't has more wiggly moments, but he has rested nicely this past night.

Isaac Update 07102009 0139

OK, Praying Peoples, we've got a specific request for you.
Pray for increased kidney function and for the lasix to do it's job. Isaac has some weight to lose, and he needs to increase his production of pee-pee.

Otherwise, he's resting nicely. And I'm going to go back to sleep for a while, too.

Thursday, July 9, 2009

Isaac Update 07092009 2336

Isaac has had a pretty good day. There were no major improvements, but there were no setbacks either. His ph level is holding steady at 7.35, which is normal. His bicarb and lactate levels are skewed, which we know would be consistent with a COX-2 deficiency diagnosis. We refuse to give up hope for his complete restoration because we know that we have a creative and loving God who does heal miraculously. God might heal him completely, and God might not, but who am I to argue with Him? Isaac did get restless this evening. His blood pressure was even, so we know he wasn't in much pain. He stretched and wiggled and tried to open his eyes and peep at me. He squeezed my finger, too. His movements were the same little Isaac stretches that we have seen at him with no stiffness or tremor. He was wiggly for about a half an hour, during which I held his hand and sang to him (not that anyone else would have enjoyed my singing, but he doesn't seem to mind it). And now we've gotten him quite comfy and he's settled for the first leg of the night.

Prayer requests:
-peace and rest
-improved heart function
-improved lab values for both the lactate and the bicarb while everything else holds steady.
-that Drew would have a wonderful birthday tomorrow in spite of all of this
-that God would heap blessing on the army of people who love us and are caring for us

Isaac Update 07092009 0658

Well, Isaac and I actually slept a bit last night. His blood pressure got low enough that we were all almost worried about it - and he stayed right there for a long time. He really slept. Not just the drug-induced sedation, but real sleep. And then his pressures came back up nicely when the x-ray tech slipped the film for the morning x-ray under him. And when the nurse was changing the dressings on his incision and central lines, he got made and needed more sedation. (I don't like that we were hurting him, but I'm thrilled that he was mad about it because yesterday he didn't seem to mind some things that should have been painful.)

As for the lab values,
We asked for a ph of 7.35, and we're at 7.34.
And his lactate didn't make 5 or less yet, but we are at 9.9 - so he's found the single digits.

And there is peace in this room this morning. The Spirit of the Lord has come with healing on his wings.

Wednesday, July 8, 2009

Isaac Update 07082009 2225

It was a good day for Isaac.

Today, "Good Day" means that nothing got worse. He's still pretty much where he was this morning. He's still got all the lines and drugs and equipment that he was using this morning (and he's quite the technology guy today). But he's resting, and his blood pressure is more stable and his labs look a bit better.

It was a good day for us. God is indeed good all the time, and He has provided us with a huge and loving support network for which we are very thankful.

Prayer requests for the night:
-That everything would remain stable so that we can all get some rest.
-That Isaac's brain would not be at all damaged
-That Isaac's heart would be healed completely
- Some specific lab levels - we're looking for a ph of 7.35 and a lactate level of five or less.
-That any underlying problem would be removed completely by our Creator God who heals.

07082009 0847

Everything was kind of touch and go for Isaac until about 3:30am. And then his blood pressure started to stabilize, and we got a little rest. He is still extremely ill, but things aren’t quite as grave as they were last night. He’s on even more drugs, and it’s going to be a long day of waiting and watching.

Tuesday, July 7, 2009

Bookworm #5

Since he was born, #5 has breathed faster than he should. And no one really thought much of it. His respiratory rate was the upper level of what is considered normal. So, the pediatrician ordered some labs and a chest x-ray just to see if there was a problem. The labs were fine, and the chest films were inconclusive. So he ordered an echo, but we miscommunicated about who was calling who about what. So, the echo didn't happen until this afternoon.

The echo was at 3:30pm, and it showed fluid around his heart. Our favorite pediatric cardiologist was on-call, and he came in immediately. He admitted #5 to PICU at St. Francis in order to drain the fluid in a simple procedure.

But, it wasn’t simple. In the process, his heart started bleeding, and he wound up having heart surgery in the PICU room. Now he is stabilizing in the PICU on many, many drugs. And it’s going to be a long night.

In the process of all this, we learned that his heart looks just like Bookworm #1's. So we will be starting the process of genetic diagnosis. It is possible that he has defied our good odds of having only healthy children after Bookworm #1. He may have COX-2 deficiency.

We'll just have to wait and see. Please pray.