It's Out!

They extubated Maggie at 8:35 this morning! Her initial blood gases are good, so she's passed the first step. The whole day will be a big test to be sure that her airway stays open. Whitney held Maggie a bit, but it seemed a little too soon. She's floppy, weak, and not feeling well. She's having some steady nausea--maybe some initial signs of withdrawal. It's gonna be an intense day, so keep praying for Maggie.

The Corner

It is Friday-- the end of the week. The big week that Andy talked about on Monday. So how is Maggie? Maggie has been known to go against what the doctors think she will do. Her GI system is going to re-bleed and she's going to lose 75% of her stomach-- she decides not to bleed again. She isn't making much progress on the vent so they decide she might need a trach-- she decides she's ready to wean. And she has.

Maggie is on extubatable settings! They have been lowering her pressures by 1 all week (they worked very slowly, yet tried to be aggressive), and she is now at the pressure of 5. 5 is what they extubate at. At the beginning of the week, I believe she was at about 10. Her FI O2 is at 40%, another setting they want it at, where as at the beginning of the week I think she was at 60%. Yesterday they changed the mode on Maggie's ventilator to allow her to do all the breathing by herself. If she decided to stop breathing, the machine would then take over and do the work. In the last week or more, she has been breathing over top the vent, while receiving support, however in the last 24+ hours, she has done it with some volume support, but little else. This helps them to see that she seems to be ready.

Yesterday Maggie also managed to stay awake for 13 straight hours. This was a first in a long time. She tried to communicate with us, but it is difficult when no sound comes out of her mouth. We all took our turns trying to entertain her yesterday. One of her favorite things was to wash her hands with the sanitizer. It is the cutest thing to watch her put her little hands together. Though she is heavily sedated (but at this point all these drugs really don't do much for her), we still see bits of Maggie every now and again. Given that she was up so long yesterday, she fell asleep last night without any drugs and she slept the whole night without anything as well. She was tired.

So, our big day is TOMORROW! Though I am very excited, I also have been warned by one of the nurses that given that today marks the day she was intubated 6 weeks ago, she might have to be re-intubated after extubation. The longer they are intubated, the harder it is to get them off. By the sounds of things, we should know whether Maggie is successful at extubation within 12-24 hours. Hopefully Maggie will again prove us wrong and show us that she is ready.

Please, pray with us tomorrow, especially between 10-1, that Maggie will be successful without the ventilator. Pray that she will not need to be re-intubated, but that her lungs will stay open and that she will be able to oxygenate and ventilate well.

Fingers crossed

Maggie has had a steady couple of days and it looks like they are likely to try to make some moves towards weaning again. The next couple of days could be pretty important as we try to get her to handle the changes that she couldn't tolerate last week.

We're hoping for the best.

Big Week

Maggie spiked a fever during the night last night--it coincided with the thermostat malfunctioning--the room was 84 degrees, and Maggie was over 102. Her temp was slow to come back down after Tylenol and her 2 antibiotics were started again (they had been stopped two or so days ago), it may have been a real fever. We don't know what caused it. We hope it's not a sign of a secondary pneumonia--that is the main key.

We were told today that Maggie's failed wean last week may have caused additional injury to her lung. Which, if true, would require another layer of slow recovery. And she's been a couple days holding the same settings on her vent. Not getting better--and though we've had some signs of concern (her x-rays, her CO2 being a little higher) she's not getting a whole lot worse each day.

So at this point, we have been told that this is the crucial week. If she shows that she can improve over the course of the week and wean her settings down, they will be happy. If not, it is likely that they'll recommend a tracheotomy. This would help her (potentially) in a couple of ways, but it isn't ideal (at all). It could possibly help her recover and get home sooner, but it isn't without risks. We'll see. Several weeks ago, she was one bleed away from major stomach surgury--the docs expected it to happen, but she decided to push it to the edge before stopping her bleeding. It saved us a very, very invasive procedure that would have had major permanent consequences. Now, we are close to facing another major procedure--maybe Maggie will decide to get better just in the nick of time again. If not, the trach seems to be the safe and logical decision to help us give Maggie her best chance to recover.

I am starting to struggle with what to make the blog about anymore. Should we be honest and vent our frustrations? Should we just update the medical info? Should we be hopeful and optimistic in the face of extremely scary times? We're not looking for answers--just letting you know that we question how depressed we allow ourselves to appear here. Some families would surely communicate only the positive news....we are aware of our blessings and yet are not oblivious to the fact that Maggie is still in critical condition and does not have a guarantee to survive.

That being said, I am feeling optimistic today. One way or another, Maggie will find a way to survive. She always has, despite having many opportunities to give up. That's not our Maggie's style.

37

We never would have thought it to be possible, but Maggie is on the ventilator now for her 37th day. Luckily for us, Maggie is pretty strong.

During Maggie's most recent major bleed (3 weeks ago now) the doctor who stood at the foot of Maggie's bed (barking orders, directing traffic), trying frantically to keep her alive, made an interesting observation. As Maggie was actively vomiting large quantities of blood and having blood, platelets, fluids, and medicine crammed into her, heavily sedated, she apparently just laid there staring at the doctor the whole time (for several hours)--with her eyes open! The doctor shared with us later that she knew as that was happening that "Maggie is a different kind of girl." A real trooper and inspiration to us all.

Our strength, however, is all but gone. As we have been reminded, our strength comes from God, who is with us, cares for us, and has a plan. We know this. But our energy waxes and wanes with every digit on the monitor, every report from the doctors. Today we are drained. Whitney is coming off of being sick for a day and a half (food poisoning? Flu? Exhaustion?) and I am having a hard time imagining this situation ever concluding. Maggie was up half of the night last night, which would be fine, except that she has been thrashing her body and head around and risking her breathing tube coming out. So everyone kept a close eye on her, gave her LOTS of drugs, and I sat and tried to keep her calm. Today they added a new sedative, and they have basically exhausted all options. There isn't much more to add to keep her calm. Much of the morning, she still thrashed around--and they are talking about putting her on a paralytic medicine again--the same one that has made her blood gases crash. If they have to use it, they are going to have to kick her ventilator settings up significantly to keep her from having her CO2 skyrocket.

The other problem, and the source of my dejection, is that Maggie's chest x-ray was bad today. Much cloudier than yesterday. They wonder if a subtle difference in the angle of the picture accounts for some of this, but she has also seen her oxygen saturations drop 4 points and her CO2 has risen 10-15. They have decided that she needs to be significantly dried out with diuretics. Now a "grape," she needs to be a "raisin", and she needs to stay that way until they can get her extubated. As they said it, babies with this severe of a lung injury need to be really dry in order to maintain lung function. She doesn't really look like she is holding extra fluids anymore, but I guess she is. So today she's on some new diuretics and they are being pretty aggressive with it. That's the plan. The discussion at rounds this morning was not comforting as her acute lung injury (it's not really an illness anymore, but an injury) is now likely worthy of the title "chronic." I hope that they still believe that they can get her off the ventilator, but it doesn't seem as easy as we thought it might be by this time. If they get her extubated, it will remain to be seen how much of the injury is permanent, and whether or not they'll have to give her a tracheotomy to keep a reliable airway (also to allow us to go home on a ventilator if needed). At rounds this morning they said that it would be nice at this stage if they could give her steroids again (remember, that helped her lungs a lot, but also caused the massive bleeds). It is kind of upsetting that they would even have to talk about that again, but of course, she's not a candidate for steroids anymore.

I am now starting to approach the computer to update the blog knowing that I could easily write something sarcastic, full of pity, angry at our situation...you name it. I could also paint a rosy picture--Maggie can still recover, after all. But we just feel depressed, worn, and numb. Each day we hope that a major corner is near, but we continue to struggle. A day of hope is typically followed by 3 days of setbacks. That's the way it has been. Each attending doctor that begins the week seem to have an idea about when Maggie will be extubated. The first estimate that we received was more than 2 weeks ago. It would surely happen this past week, according to several. Easter Sunday is here, and we're not all that close anymore. We're hoping that she's not going to continue to get worse, in fact.

We are still hopeful, positive, and being faithful. But this is the best, most reassuring post that I could muster.

Please keep praying for our sweet little energetic, feisty Maggie.

Ready for Weekend

We're seeing more of the effects of Maggie's bold attempt to make the last step toward extubation on Wednesday evening. To review, Maggie was tolerating a number of changes on her vent and basically needed to tolerate one last change to be ready to pull the tube (reducing the Peep, a pressure setting, from 8 to 6). They gave it a shot, and it didn't work. This morning her x-ray showed some deflated portions of her left lung and more haziness overall (hopefully just a result of the lower pressure in her lungs). She had been back at 8 on her peep all day yesterday hoping that she would pop those portions of her lung back open again. Since it wasn't successful, today they increased all the way to 12. Her x-ray this afternoon showed that it has improved since this morning. It is hard to say how much better it is, or what this will mean for the next day or two.

They also flipped her onto her stomach to try to mobilize some of the gunk in her lungs. That didn't last long though, as she is awake enough to move her head from side to side and risk dislodging the tube, which is a risk when they are on their stomach. So she was only on her belly for a few hours. They have also begun giving her 4 CPT treatments per day (chest physio-therapy). This involves putting a little hollow cup over different parts of her lungs and rapidly slapping the cup (I can't think of a better way to describe it). Then they try to suction some of those secretions out. Maggie is getting one of these treatments now as I type.

So, it seems that they are being more aggressive to try to get her back to where she was Wednesday. We were very close to getting her off of the vent just two days ago, now we have more work to do.

I am planning to watch her improve over the weekend so that we can again discuss getting her off of the ventilator sometime next week.

So there's a medical update...we'll see about a more typical post later this evening or tomorrow.

Setting changes

Maggie had a few changes made on her ventilator settings yesterday. They changed her mode from pressure control to volume control. Basically what this means is that the ventilator controls the volume that Maggie gets while she controls the pressure. This is one step closer to extubating her. She handled this change fairly well-- her CO2 actually got better after the change.

Yesterday evening they decided to lower Maggie's peep (another pressure setting) from 8 to 6. 5-6 is the number they like to see before they extubate. Unfortunately, Maggie didn't agree to this new setting change as her x-ray showed this morning that her lungs were less inflated and more cloudy. This showed the doctors that Maggie is not quite ready for less pressure/extubation.

Although I felt that this was a step back, the doctor assured me that it was something that they needed to try to see whether Maggie was ready for the next step, and she just isn't. I guess (though the doctor might be trying to make me feel better) she described it as a slap on her hand (the doctor's) for moving forward and that they need to wait just awhile longer.

We were feeling pretty good about all the positive changes yesterday, and though we are still heading in the right direction, I'm a bit sad that Maggie is not ready yet. Patience has become quite hard for me as today marks week number 5 that we have been in the hospital. Though we have made strides forward, we want to see our baby tubeless and able to communicate with us once again. We are ready for our "hell" to be over.