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
2:30 pm – We had a great Thanksgiving weekend with family. And it was great having Elise, Miriam, and I all in the same building for a few days as we stayed in an apartment Wednesday through Sunday.
Emma is still waiting on her heart cath – looks like it will be tomorrow. Due to the holidays and mixed up doctor’s/nurse’s schedules, we’ve heard conflicting stories on her condition. Today everything is getting back to normal, and her usual doctors are saying it’s time to start coming off the ventilator. We’re really wanting that to happen as soon as possible! So hopefully heart cath tomorrow, completely off the ventilator in a day or so, and then home by this weekend. That’s our hope anyway, we haven’t heard a schedule from the doctors yet.
In other news, our car is working much better after some basic repairs, and we’re hoping it’ll be doing good for a while so we can put off any plans for getting another one. We’re still working with the hospital on how it’s all going to be paid for – no definate news yet.
3:00 pm – Good news! Miriam just found out that Emma was approved for 3 months of Medicare, starting in October. So that will save us over $100,000 in bills!! Thanks for all your prayers on this issue. We’re still working on continuing coverage for physical therapy, oxygen supply, etc for after December – our insurance is pretty much flatly refusing to pay for any more.
Emma is in progress on moving off the ventilator, but it’s moving slowly. One number (not sure what it is) should be under 20 at this point, and she’s hovering at 20-21. Better than the 27 at one point last week. Please pray that she will improve and be able to come off that very soon!
Also she’s just starting running a small fever. They’re doing some tests to see why.
8:30 pm – I talked to Miriam this afternoon. The geneticist and pulmonary specialist have both come by to look at Emma. The pulmonary speciist (lung doctor) had some theories that line up nicely with what we have experienced. Basically, it looks like her body’s normal response to a slight lowering of oxygen is extra sensitive, and it’s backfiring a bit because the increased pressure in the heart, normal for this response, is pushing more blood around the not-quite-sealed hole. So if she’s congested or refluxing, and her oxygen dips a little, this automatic response triggers and leads to a breathing problem.
It’s not completely confirmed, but this explanation seems to fit very well with what we’ve seen. And the solution is fairly simple – a little bit of medicine to keep arteries wide open, and stay on portable oxygen until she grows a bit more.
So we’re really hoping Emma will be off the ventilator tomorrow. Miriam’s family is coming down to Little Rock tormorrow, bringing Elise, and I’ll be there too in the afternoon. Then they’ll return in the evening, and my parents will be coming down, and staying through Thursday. I’m planning on keeping Elise down there with me through the weekend so that she and Miriam can spend some time together – they’ve hardly seen each other lately. Hopefully it won’t be long until we can all come home.
So things are looking up! Thanks for your prayers.
As most of you have hopefully heard, we are still in Little Rock after being discharged yesterday (Saturday). Emma was doing pretty well, though I could tell she was having a little more trouble again- grunting while breathing on Saturday. She also started the day with a long episode of trying to throw up. That is fairly normal for her and due to her reflux. Thankfully they gave her a surgery that does not allow her to throw up. I think I wanted to get home so badly I tried to ignore Emma’s warning signs. I also knew from the results of the heart cath that she would probably continue to have trouble and I just hoped it would be awhile before she had another episode.
6:15 pm – Miriam and Emma are still in Little Rock. Emma had a breathing fit last night as we loaded her into the car, so we brought her back into the hospital for observation over night. Then this morning she had a really bad episdode, similar to the one a week ago that brought us down in the first place.
So we’ll be having Thanksgiving in Little Rock this year. I’ll try to put up a few more details later.
9:30 am – Doctor says Miriam and Emma should be ready to leave the hospital tomorrow morning (Saturday)! They’re wanting to send oxygen home just in case, but they were surprised to learn that our insurance doesn’t cover that, so we’ll see what happens. It’s been three weeks (they told us 1-2) on the Medicaid application and no word yet.
(pictures above show Emma in bed, view from hospital, and “departure picture” – added 11/20/05)
9:30 pm – Emma is done with the procedure, and it went well. She is recovering nicely, and the results aren’t too bad, or very un-expected.
Basically, the doctors were able to confirm a moderate amount of leakage around the patch, and that a couple of the veins are a bit too narrow. Seperately, each problem is ok, but together they can give her problems. So that explains the extra trouble she’s been having with the pneumonia. As a whole, the heart issues are at the higher end of what they like to allow, but within limits. So it looks like there won’t be any other procedures for the moment. We’ll just have to keep a close eye on her.
They’re wanting to get her off the oxygen because they don’t think she needs it, so it’ll take a day or so to wean her off that, and she should be coming home! (with her own supply of oxygen just in case) So, Thanksgiving together after all. We’re kinda thinking that it will be Monday, but we won’t know for sure for a bit.
4:30 pm – I talked to Miriam this afternoon. Looks like we may be home for Thanksgiving after all! No guarentees, but it’s sounding like they’ll do the catheterization on Thursday, and then send her home as soon as she recovers from that (few days?). She’ll have oxygen with her this time to prevent any more breathing troubles.
Miriam will be glad to get home – there’s not a whole lot to do besides watch TV, and it must be very boring. Emma is doing fine, and the nurses take pretty good care of her too, so it’s just a lot of waiting.
6:30 pm – The doctors have scheduled a heart catheterization for Thursday. They’re thinking that some of the veins and arteries may be too thin, and this will let them know for sure. If there’s a localized thin area, they’ll be doing some surgery. If it’s more than just a localized spot, then…well, we don’t know. They didn’t want to go into that at this point.
Emma is still doing great. She’s very active when she’s not sleeping – Miriam said she kicked her way half-way down the bed today. She gained a little more weight, up 2 oz to 8 lb 9 oz (she lost a bit while she was sick and having the breathing problems).
At this point we’re thinking we may end up in the hospital over Thanksgiving, which will not be fun. Please continue to keep us all in your prayers, including Elise (stuck with the Grandparents for weeks on end, and loving it). Thank you!
10:30 am – The doctor just came by and talked to Miriam. At first, the doctors thought that the Echocardiogram from yesterday was looking fine, and they continued looking for other reasons for these problems. However, after another series of virus tests, they’ve pretty much ruled out viruses, colds, and pnuemonia as the direct cause of her earlier trouble and her continuing high breathing rate (~70-90 bpm).
Obviously her earlier breathing attacks did have a lot to do with congestion, but she’s been pretty clear for a day or so now, and still breathing faster than they’d like. So they went back and looked closer at the Echo more carefully. Now they’re thinking that they see more pressure than normal in those re-arranged veins that are between the heart and lungs. Seemed like it was doing fine the last time we were in the hospital, but with these troubles they’re thinking that she may not be getting the flow she needs, and that’s building up a bit of fluid in the heart.
So she’s staying in the ICU for the weekend for observation in case she has another breathing fit, and then the doctors are thinking of doing a heart catheterization on Monday to see more of what’s going on.
6:30 pm – Emma has been sleeping quietly all afternoon. Her breathing rate seems to be down around 50-70 now (of course, she’s sleeping). So we’re in the hotel room to watch a movie to give Miriam a chance to be out of the hospital for a while. I’m planning on staying here until tomorrow afternoon, and then heading back for work on Monday.