Update

Just a brief update from ICU. Maggie has managed to stay pretty stable this afternoon with her oxygen, carbon dioxide, PH, and blood pressure. Though it took some testing and changing, they seemed to have found a setting on her oscillator that she is able to manage. They have been able to take her oxygen level from 100% to 80%. They want to keep her at 80 if at all possible so that they have room to go up if anything happens. They have taken her off of her second blood pressure medicine and have taken her from 15 to 10 (not sure what units of measurement) on her dopamine.

She is showing signs of having an inflammatory response that is making her lungs very ill. One possibility is that the antibiotics are starting to work, but they can make the situation worse before it gets better. If that is the case, we need to weather that storm and buy more time to allow the bug and the inflammatory response to both get under control. We pray that this is what is happening.

We do worry about what the night will bring, as we have learned in the past couple days that nights have not been good to us. We are praying for an uneventful night, for greater clarity in the morning about what the infection is, and for gradual improvement. We have been told to take this moment to moment, and day by day. Nothing is easy about what is going on.

We have been so grateful today for family support, visits from friends, and for support in churches, from online, and everywhere else. Please continue to pray for Maggie. She has been heroic and needs all the support that she can get to continue to live.

We hope that we don't have to post until into the day tomorrow.

Still very critical

Maggie is on an oscillating ventilator now, since 4:00 AM. She was considered to be pretty stable last night at 6 or so, then from 9 PM until 4 she started taking a turn for the worse. The regular ventilator was no longer able to adequately balance the oxygen that she needed while getting rid of the carbon dioxide. So they stepped up their efforts and this is the last machine that they have. If Maggie continues to get worse before she gets better, we're in big trouble.

The good news is that she is relatively stable on this machine. Her blood pressures are good enough to take care of all of her organs. They've now calibrated the vent to where it needs to be now to balance her oxygen intake and CO2 output.

The doctors are stepping up their efforts to get some ideas from pathology to find out what bug or infection is causing all of this. The main intensive care doctor said this morning that it is hard to fight this war when you don't know who your enemy is.

In treating cases like this, it is common for people to get worse before they get better. That has happened here. The key is that she start to make improvements before it starts to get worse again. I'm not sure how hopeful the doctors are, but they are doing a great job.

We, on the other hand, are pleading to God and praying (and believing) that there is reason to be hopeful. This is the most important day of our lives so far. Pray that it is a day that we can celebrate as the beginning of her recovery from this nasty situation.

Please Pray.

We need a miracle this morning.

The end of day one

Well, this is the end of our first full day in ICU, still quite hard to wrap our mind around it all. To give you a brief summary of what we are dealing with as the day comes to a close...

Maggie fought quite hard with her sedation today. I think we might have been the cause for the some of the excitement. I was not aware that it is not good for her to be aroused, so when Maggie became alert, my sister and I talked with her a little bit. She opened her eyes and nodded her head to some questions that we were asking. When she became a bit more conscious, her reflex jumped in and she began coughing and fighting the ventilator. This made her oxygen levels plummet many times over. They struggled with this all day, and eventually had to put her on 100% oxygen (where as earlier in the morning she had been at 45%).

One course of action they took was to increase her dose of Versed (sedative), and give her several boluses of Fentanyl (pain med). This allowed her oxygen saturation to be maintained in the low 90's for awhile, however her respiratory rate was still in the 50's, which meant that Maggie was still trying to breath around the respirator. They finally decided to put Maggie back on the paralysis medicine to see if that would calm her, and it appears to be working. Her respiratory rate is in the upper 20's (which is normal for her age) and they have been able to come down on her oxygen to about 80%.

As I've been typing this though, they have once again changed things on us. Maggie's not responding as well on her oxygen saturation, so they are once again going up on her oxygen to 100%. Her blood pressure has also dropped some so they are going to give her a bolus of fluids in hope that this will bring her pressure up. If not, they will add another blood pressure medicine to her already large group of meds.

Maggie has had a fever much of the day. She has been on a cooling blanket and Tylenol around the clock and even has spiked during one of the doses. Her last temperature was around 8:00 and it is only now slowing going down to from about 102.7 to 99.7. While we don't believe she is done fevering, one good sign is that her body is responding to the infection and that Tylenol can still bring it down, though sometimes it takes a couple of hours.

So that's kind of where we stand. We have learned things can change in a minute. And we have observed just that. Though Maggie struggled much of the day with her sedation, I think it means that she has got fight in her. This girl is a tough one and it shows as they had to continue to increase her sedative to calm her down. It finally to paralyzing her to get her to respond the way they wanted. We just pray she uses that fight to get through this.

While we have given you mostly medical jargon today, I do want to say how tough this has been for us. We have been scared and worried for her as the doctors are seeing her as critical. We have learned in the process of treating cancer that infections sometimes are more deadly than the cancer, and that is what scares us most. We have become very knowledgeable about our situation and sometimes I think too much knowledge can be dangerous. It definitely has been on our psyche. I think with all of this, the hardest thing is that we can't hold her. That has always been my way of comforting Maggie and I no longer can do this. I just pray we get that chance once again. There are so many more things we want to be able to do with her.

Please continue to pray with fervor that the antibiotics will start kicking in and begin to heal her lungs. Pray that she will stabilize on her oxygen, respiration, and blood pressure so that she can get to the point that they can wean her down. Above all else, please pray for healing and a cure for a beautiful little girl. We love her more than anything else and want to be able to celebrate her life with her for years and years.

Afternoon update

Maggie continues to be sedated and on the ventilator. She is spiking some fevers today every 5 or 6 hours or so, but that is not a major problem. Her blood pressure was trending downward which was a big concern. They've used some drugs and increases to her fluid intake to try to get her in a better range. They were close to jumping to a more aggressive drug, but are now happy where she is. That is a huge relief as it needs to stay high enough to keep all of her organs functioning. The doctors are also paying close attention to her and hoping that she doesn't get Sepsis, which would be very bad--this is when the infection that she is fighting gets into her bloodstream and spreads to all of her organs. That is one of our big concerns as we try to get through a couple of days of keeping her stable. She is in critical condition and will continue to have that status as long as she's on the ventilator.

She is also fluctuating in her oxygen supplementation needs. She has been wanting to wake up today, which causes her to gag and choke on her intubation, which makes her oxygen numbers get worse. So they'd like to sedate her a little more, but the drugs can lower her blood pressure. We're looking to find a happy medium with her oxygen, sedation, and blood pressure.

One of the keys to how this will go is whether or not Maggie can stay stabilized for a couple days which would get us to the point where some of her cultures will come back which will clue us in on how to treat her. Also, the expectation is that if she can weather the storm for a couple of days, she can get through the worst of the infection and start to recover. Then, we'll start working on taking her off of the respirator.

At this point there is some concern that this might be a fungal pneumonia, which are hard to treat. Or, it could be a number of other types of infection. This will be a big finding, too, because some of these infections are more responsive to treatment than others.

It continues to be a stressful and frightening day. Your continued prayers are desperately needed and appreciated.

Prayers needed

Maggie is in ICU tonight, still fully sedated and getting oxygen through a ventilator. This is consistent with what we expected as we prepared for tonight's procedures. What we didn't necessarily expect is that the CT scan confirmed that our problem is pneumonia, and it was described to us as "serious."

Many kids will respond to treatment with pneumonias like this, but some don't--when we asked the pulmonologist if he thought Maggie would be okay, he fulfilled his responsibility to be honest and said that he didn't know.

She has been started on 4 or so different anti-biotics/anti-fungals and they will hope to see some improvement in the next few days. Within a couple days, they will have cultures from the tissue samples that they harvested in the broncioscopy. This will identify the bug and we can then focus the treatment as needed.

Our comfort has been shaken and we would ask you all to pray for Maggie tonight and through the coming days.

We are in for a battle that is greater than what we would have liked to face. We hope to have good updates as frequently as possible.

Uneasy day.

It's been a dramatic day so far, Maggie has spiked a couple of fevers and continues to have respiratory issues that are scary at times, and still puzzling.

Some of our tests are done for the day, but at 3:30 we are planning to have a pretty exhaustive set of tests done in the OR while Maggie is under general anesthesia. They should be helpful in identifying potential causes.

We especially would appreciate your thoughts and prayers today and until things settle down.