7:15 pm – The doctor is now saying he wants to observe Emma for another three to four days, and then she can come home so long as everything is looking good. There’s one more lung test that they’re going to do, probably tomorrow.
A hearing doctor did confirm today that Emma has virtually no hearing in one ear, so they’ll try to schedule a more thorough test at the same time as her MRI in January.
Please continue praying her lungs would continue to heal and she would be able to come home soon!
6:00 pm – The results of the chromosome test have come back negative. Originally the geneticist said that indicated only that she would need another test. But maybe she’s doing well enough that they’ll cancel that – we don’t know at this point.
A new doctor is now wanting her to stay for more tests related to her lungs. Miriam and I are both happy with the explanations and precautions already in place, and we really want everybody home. Please pray that the hospital will be willing to let Emma and Miriam come home in time for Christmas!
Emma is doing well, acting happy and alert. She isn’t eating very well yet – the three weeks on the ventilator with no feeding by mouth has messed her reflexes and muscles up a bit.
5:30 pm – I just arrived back from the hospital where I saw Emma and dropped Miriam off to stay with her. Emma is looking great! She’s still very sleepy because they are gradually weaning her off all the sedations, but she looks much more comfortable and happy.
She should have moved from PICU to the general CV ward this afternoon. She’ll remain there for a few days for observation and preparation to come home! Pictures below:
11:30 am – Emma is coming off the ventilators now! The hospital just called. Wow! We’ve been hoping for this for so long, it didn’t seem like it was ever going to happen!
So, change of plans, we’ll be heading back down to Little Rock tomorrow morning. Emma will stay in PICU for at least 24 hours, then maybe a while longer in a general pediatric room. We don’t know exactly when she’ll be able to come home, but it should be soon!
5:30 pm – She is off the ventilator and doing fine. Sounds like she’ll be able to come home mid to late next week. I’m taking Miriam down to stay in Little Rock tomorrow morning. She’ll stay with Emma until it’s time for me to come back and pick them both up!
4:00 pm – Miriam called the hospital this afternoon. The nurse said that Emma is doing really well. They turned the ventilator “way down” and lowered another pressure number, and the oxygen levels in her blood stayed where they’re supposed to. So that’s good progress!
7:00 pm – Just a note to let you know that Miriam and I have returned home for a few days to spend some time with Elise (who is THRILLED to home again!). Emma seems to be improving VERY slowly, so while she’s stable but mostly sleeping we thought we’d both come home for a little bit. At this point I’m planning on driving her back after church on Sunday (we’ve each been to church once in the last few months, and seperately at that) unless we get a call from the hospital.
Yet another day of waiting has passed.
Apparently the ear doctor did come yesterday. Oddly enough, I was there all day and didn’t see them, but they must have come while I was taking a nap. I saw one lady, so she might have been the ear doctor and I just didn’t realize. They said her ears look clear. They knew to check for colestiotoma (what Hannah has) so I am assuming that means she doesn’t have that either, but since I didn’t get to talk to them I don’t know if that is a for sure thing or not. Maybe I will try to find out the name of the doctor who saw her so that I can call them directly.
Nothing much has changed today. They upped Emma’s diuretic to see if that would flush more fluid out of her lungs. So far we are just waiting. I tried to get them to give me an idea of how much longer this could take, but they don’t have any idea. The only thing they could say was that if another week goes by with no change and they don’t think she is sick, they will talk to cardiology again. She may need that other heart catheterization after all. They don’t think her lack of lung compliance has to do with her heart issues, but they’ll look into it again if they can’t find anything else. I am praying that Emma’s numbers will miraculously be down tomorrow.
John heads back home tomorrow. I am considering going back with him if it looks like nothing is going to happen here for a few days. That way I can spend a few days with Elise at home. I am thinking that she may need the time more than Emma does right now. Emma woke up some again today. She was making little noises. Normally they can’t make noises with the ventilator in, but she has a little hole in her tube and so she figured out how to make some coos through that.
Well, I will keep you updated. Pray with me that Emma’s lungs will show some major improvement very soon.
10:30 pm – Emma is fine, but still on the ventilator. The doctors have upped some pressures and medicines to hopefully help her lungs strengthen a bit. Some of the numbers seem a bit better today. I’m going to try to talk with the doctors tomorrow about all of this. We’re still hoping that she’ll be off soon, but no way of telling at this point.
They finally weighed her today (first time in over two weeks), and she’s now 10 pounds 8 ounces! That’s a good steady weight gain. A positive for sure.
Miriam is trying to decide if she should come back to Siloam with me for a few days. I’m leaving tomorrow around noon, and she really wants to spend some time with Elise. It all depends on if we think there will be some changes with Emma in the next few days. If the doctors are pretty confident that things will stay the same through the weekend, Miriam can come back with me on Wednesday, and then I can run her back down to Little Rock on Sunday afternoon. We’ll see – not sure yet.
Here’s a couple of pictures from the last week or so – Emma with a bit of a smile, and Elise with her Aunt Emmy and Uncle Mark:
9:00 am – I’m back down in Little Rock for a few days with Miriam and Emma. Emma is doing really well. Her numbers are looking pretty good, and they’re really starting to talk about taking her off the ventilator (maybe today!). There’s still a hearing test remaining that they want to do. One of Miriam’s sisters has a genetic hearing condition, and we’re worried that Emma might have it as well – and the sooner it’s caught the better.
Other than that test (should be today), all that remains is getting her off the ventilator and back to normal with feedings, etc. We’re hoping that we can all come back together on Wednesday!
11:55 am – Another doctor came in this morning and said she’s not ready to come off yet. He wants to make sure she’ll do really well afterwards. So they’re still working on getting the hearing appointment set up for today, and then we’re all just waiting for these pressure numbers to go down.
Emma has been on the ventilator for over two weeks now. That means she’s sedated most of the time, sleeping, so no mental or physical stimulation. Also Miriam can’t hold her. And she’s not very comfortable when awake. Please pray that she will improve and be able to come off soon!
7:00 pm – Email from Miriam:
I finally got to talk to the resident doctor today. She explained what the plan is and also explained better what happened over the weekend. I had never got the full story.
Basically over the weekend when they tried to wean Emma off the ventilator her CO2 levels went way too high (68 when they should be in the 30’s or 40’s). So they had to turn the ventilator back up. She did fine for a bit, so they think that her lungs just got too tired trying to breathe themselves. They are trying to wean her again, but they have to watch her CO2 levels and also how hard the ventilator has to work to help her breathe. So far that pressure has been too high to turn her back down all the way because they are worried her lungs will get tired again. The theory is that she was actually quite sick when she got transferred back to ICU again and is still trying to recover. Continue reading