Told you so

With all of our warnings to the doctors about Maggie's tolerance to the feeds, she finally "spoke" for herself this morning by throwing up her entire stomach contents. Thankfully what came up had no inkling of blood in it, which was a good sign. With this episode, they decided to get Maggie some gut rest today with the idea of starting her on feeds tomorrow. I spoke with Maggie's primary GI doctor today and he agreed that Maggie should only be given half of what she is receiving now and to put her back on TPN again. This way, Maggie is still working her gut, but she will be at a place that she can tolerate it better and also get the nutrition she needs through the TPN. The hope too, is that her distended belly will get better and allow her lungs to expand more, giving her as much chance as possible for recovery.

Other than the exciting morning vomit, Maggie had a fairly quiet day. She was awake some, but didn't get overly agitated. Her port was again accessed because she is getting TPN again. She had physical therapy, where they tried to work out her legs. This ended up making her pretty upset and she cried. That was the end of PT. It was decided we will not continue until Maggie can tolerate it more, so they will try to position her legs to give her the best possible hip/leg support. She currently is very content to lay in a "frog" position, which could lead to stiffness over time.

They have made some changes to Maggie's vent settings as well today. I don't believe they felt very confident in the changes that were going to be made, as Maggie's CO2 had climbed overnight, but they tried anyways. She has adjusted well to the changes in her pressure & oxygen levels. We hope this is a sign that her lungs are getting better.

We have seen small signs of improvement today, which we are happy with. In the last few days, we have grown quite weary of our situation and the time we have spent watching Maggie. It is hard to see her awake and flailing about due to sedation. It is hard to watch her cry. Again, it's hard to not be able to comfort her when that is really what she wants and needs. We have become a bit impatient waiting for her to get better and I think this affects our psyche sometimes. If we can continue having days that we had today (minus of course the vomit), we can handle it.

Please continue to pray for our Maggie.

New week

Maggie has a new attending doc in the ICU starting today; also new oncologists, gi team, and soon, new residents. Once we get comfortable with one team, the week ends and a whole new unit comes on. Luckily, I think all of the doctors are good. Continuity is comfortable though--change is hard.

Maggie has been cycling with her fluids--two days gaining fluids (and adding stress to her lungs), two days of shedding fluids (hope that she's going to get better, some minor improvement in her lungs)--now a day and a half gaining again. Her lungs can't recover if she is holding fluids as the fluid sits in and around her lungs (and everywhere else, I guess).

Now everyone is reacting to her stomach being distended, and there's a back story to that. Maggie has been on TPN (IV nutrition) since November due to the GI issues (diarrhea) that she has from chemo. When patients are on the ventilator and sedated, they commonly put people on TPN so that they can be nourished. Since Maggie was already on TPN, it was easy. However, after her stomach became an issue, they started feeding her formula very slowly through a feeding tube. It was aimed to help her recover from the wounds and inflammation in her belly. But they gradually began increasing her feeds and then reducing her TPN. This is the typical course for someone on the ventilator, I guess. Well, we never understood why this health crisis would be the time to try to get her weaned from the TPN--and we voiced this. First of all, we didn't expect that she'd be able to transition easily just because of her history. Secondly, we are adding multiple new causes of diarrhea: all of the medications, the withdrawal that she'll face if we ever get her off the vent and off the sedatives, and the stress of the whole situation. So as of today her TPN is totally off, and she is being fed exclusively through her feeding tube. And they act surprised that her stomach is swelled and not tolerating the feeds entirely. None of the doctors in the last week or so has totally understood (or seemed to) when we share that she will NOT tolerate the feeds--she never has. They all want to see how she does and give her a chance to surprise us. Which is fine, I guess. The outcome, however, is pretty predictable.

They took an x-ray of her stomach tonight to see why it is so bloated (because she doesn't tolerate feeds, her intestines are full of air just like they always are with these feeds!). Now her swelled stomach (plus her fluids) is putting more pressure on her lungs. Hopefully they will cut the feeds back and add TPN again.

We have been happy with the care here--I don't mean to imply that we are unsatisfied. They've not been negligent or made any major errors. We just want everything to be smooth and easy, and that's not going to happen.

They weren't kidding when they told us that this would require a slow recovery. The ARDS from 4 weeks ago was one thing, but she has had several lung injuries since then (the massive transfusions cause a similar inflammatory response in the lungs). So it seems we are recovering from a series of ARDS-like illnesses and the healing time keeps on compounding on us.

It continues to be so hard and we are tired of the continual stress and strain. We get to be fussy, short-tempered, and not always interested in visiting with people who travel so far to offer support. We feel bad for not being more welcoming.

We have been quite encouraged and humbled by the incredible range of gifts that people (and our home churches) have provided. We will surely devote some more cheerful posts later to try to thank all who have been so gracious. But amidst our frustration, we still know how special the response to Maggie's illness has been. Thank you to all.

4 weeks

Maggie took a step back today due to a procedure of re-taping her breathing tube. This happened the other night where they paralyzed her to tape her tube and in doing so, her CO2 jumped into the 120's and her heart rate jumped into the 160's. The reason for this in simple terms is that Maggie has been breathing over the ventilator, breathing between 40-60 breaths per minute, and when they paralyzed her (both times) she was unable to do the work to release the CO2 and the ventilator wasn't set at a place that could do the work for her. For this reason, we have spent all day trying to regain the ground that we were at days before. Needless to say it has been quite frustrating at times, given that the same "mistake" has happened twice.

For this reason along with Maggie's continual retaining of water, her lungs have not improved any. I feel as though we have hit a wall, waiting to move forward. Unfortunately, some of the medical team hasn't helped in pushing her forward as we have had these 2 setbacks in the last 36 hours. There was talk today that it could take as long as another 4-6 weeks before we get out of here. That was a very tough pill to swallow today, given that today marks our 4 week point in ICU.

It has been 4 weeks since we have been able do the most simple things with Maggie that probably everyone takes for granted with their own kids. It has been 4 weeks since we've been able to hold Maggie, listen to her call us "Mommy, Daddy"(or "Andy"), see her smile, hear her voice, hear her cry, laugh, say "no way," say "hold you," watch her do her favorite thing which is to "write," hear her request to watch her favorite shows & then watch them all day, watch her wake up and look over at us and smile, put her on her potty & listen to her say "poo & toot," hear her respond to our "I love you's," and give us kisses. There are so many things that we mourn right now, being unable to experience life with her. It breaks my heart.

I haven't felt bitter, angry, but the moments when I see tears running down her eyes and I can't pick her up and comfort her make me feel as though life isn't fair for us, but more for her. She doesn't deserve to be laying in a bed, heavily sedated, fighting each day for her life. She deserves to be outside like any other child, laughing, playing, walking, and even running. When will she get that chance and when will we get to experience her joy?

These last 4 weeks have been the hardest time for us. People might think when Maggie was diagnosed with cancer, that was the most difficult, but watching Maggie in ICU fighting each day has put us in a place that we wish we'd never have to experience. It has been very tough for me to watch Maggie, to experience each high-stress day, to feel as though we aren't getting anywhere, to be told that it will be a slow healing process, to be told that we are strong. I'm not strong. I'm holding on by a thread and with every new setback, that thread gets weaker and weaker. How long will this last? How much more can we take? Maggie has proven to us that she is very strong. I just wish that I had that strength (and please don't tell me I do, because it's not the case).

So, those are the raw feelings of 4 weeks in. If only we had a crystal ball and knew how long we'd be doing this. It might be easier. But for now, we wait...

Desaturation

The last day and a half have been a slow trend down in several areas. First off, yesterday, Maggie went down to the IR to have her pic-line redone. Her original pic ended up having a leak in it, which was an infection risk. After Maggie's move down to IR, we saw a slow decline in her saturation numbers, and continue to at this moment.

As we've said before, a major issue is sedation. Maggie has been sedated for almost 4 weeks, and because of that, her body requires more and more. They are running out of options. A new drip that they are started yesterday increased her heart rate and caused her to be a bit too rambunctious. They decided today to take her off of that med and put her on another one. This seems to be helping some.

Maggie's saturation numbers began to drop today from 92% (which is a bit low for her anyway) to the 80's pretty regularly. They could not figure out the reason and so decided to take another x-ray to see whether a lung had deflated. Thankfully this was not the case, and if anything, the lungs look a little clearer than they did this morning. The doctor thinks that perhaps she is shedding some of her excess fluids again (she has been positive the last couple days). This would be very good as increased fluids doesn't help with lung functioning. Maggie also decided to spike another fever, which is not helping her comfort level. We hope that this fever doesn't mean another infection, as this would put a halt in Maggie's recovery.

Overall, we were pretty encouraged to see Maggie being weaned from the vent the last couple of days. Since yesterday, I feel that we have hit a bit of a wall. The doctor said he was weaning Maggie pretty aggressively the last couple of days. Though he has assured me we haven't taken a step backwards, even though he has changed some of Maggie's vent settings to give her more pressure and oxygen, I feel like we've taken a little hit. There's no explanation for why Maggie's oxygen saturation has dropped. There's no explanation for this temperature spike. We just don't seem to have any clear cut answers. If only recovery was more simple.

Though we don't post as often as we did at the beginning, we are still in desperate need of prayer. Please pray for continued healing of Maggie's stomach, healing of her lungs, and that she will not have any infections.

New updates.

It has been a while since we last updated. Things are busy here as I (Andy) have returned to work--and our remaining free time seems to go by very quickly. Also, it didn't help that we managed to shatter the screen on our computer today, so we have been scrambling a bit to find a way to post.

Maggie has had a nice couple of days. Her x-rays have shown improvement, though they're still cloudy. Today we were told that the cloudiness on the x-ray is likely scar tissue which will take a long time to heal (estimated at 1 year). So, once Maggie gets out of the hospital she will be very vulnerable to respiratory issues for that long. We were told that at the first sign of a cough, we will want to take her to see a doctor immediately. That's a frightening thought for us. I guess even minor respiratory bugs can escalate quickly for Maggie.

However, they are starting to wean her more steadily from the ventilator. She tolerated a few changes yesterday, and a few more again today. At this pace (if she can maintain it and avoid complications) she could get extubated sometime next week. That would be a huge relief. Today is her 25th day on the ventilator, and that, in and of itself, causes damage to the lungs and airway. Also, her settings were so high for so long, which is harmful.

The medical staff is also starting to give each other strange looks when they talk about sedation. Maggie is maxed out on many of her drugs--and while she's on the ventilator, she needs to be well sedated. The withdrawal that she'll have from these drugs will be lengthy and intense.

If they cannot adequately sedate her, or if they feel her airway is being damaged, they have discussed the possibility of giving her a trachiotomy. They would then connect the ventilator to it (instead of the tube going in her mouth and down her throat). This would allow them to wean off of sedation, and she could be alert during the end of her intubation period. Needless to say, we don't want anything to do with this option. Maggie has been poked, stabbed, burned, pinched (I could go on if I could think of more appropriate terms). She has a black blood blister on the bottom of her big toe (the diameter of a dime, it is very swollen, and growing bigger every day). We think that this is a burn from the device that wraps around her fingers/toes to detect her level of oxygenation. She has numerous places where her skin is raw, rubbed off, worn, torn, etc. Her mouth, as we mentioned last time, is bleeding periodically. Thankfully the wound on her side from her abdomenal catheter is healing nicely. She is just thoroughly beat up, inside and out.

Her new GI doctor (they rotate duty in the ICU weekly) is more optimistic about the condition of her stomach, and doesn't expect her ulcers to bleed again. That would be most fantastic. They are still being very proactive--treating her stomach with 3-4 meds, making sure her platelet count stays high, and being careful what they put into her stomach.

She still spikes a fever every day or two, and nothing grows when they culture her. They will have to decide how long to cover her with the antibiotics, anti-virals, anti-fungals. Perhaps one or two of them are working, but how would they know which ones? She is on so many, and none of them have been validated by a positive blood test, gastric juice culture, urine culture, or lung secretion culture. This is another area where the smart docs here will get to show their skill.

It feels dangerous to post it, but it has been a good couple of days. We are grateful for Maggie's progress. I feel peace about the fact that God is with Maggie, has gotten her this far, and that he has the situation under control. However, we are still a long ways away from where we ultimately want to get--Maggie at home with us.

Thanks for your comments, your interest, and your prayers.

Update

We had another rough night (in terms of sleep) as Maggie seems to have her days and nights thoroughly confused. Also, as soon as she calmed down, they repositioned her, or suctioned her, and she was agitated for another couple of hours. So we're tired today.

This morning, they started noticing some blood around and in Maggie's mouth. They looked her over and found a few raw spots on her lip and gums where the breathing tube is rubbing. However, they couldn't be totally sure that her stomach wasn't bleeding. They were planning to scope her tomorrow or Tuesday anyways to track the progress of her healing, so they decided to take a look today just to be safe. Thankfully, the scope indicated that she wasn't bleeding. However, her stomach in general was very inflamed, and her ulcers still look pretty raw. So they weren't as happy with that. The risk of bleeding remains, even though tonight will make one week since the last bleed. So that's a bummer. The other concern is the inflammation--they have added another anti-viral drug, and another anti-fungal drug to her lengthy list of meds. There are a few particular infections that can cause that degree of inflammation, so they are going to try to cover them with these drugs just in case that's what is causing the problem. Over three weeks into this mess, and they have tested for infections (viral, bacterial, fungal) dozens of times, and nothing has shown up. So that feels kind of ridiculous.

They also found that her feeding tube, which is delivering two of the medicines for her stomach, was positioned too low and sat inside the top of her intestine. So, those medicines may never have coated the stomach this week as they thought. So, between the two new meds and the feeding tube being adjusted to allow the previous meds to actually work, we hope that she'll begin to heal.

So it was a bit of a bummer for them to find what they found. That being said, she's finding a way to not bleed, so we hope that continues.

The doctors were pleased with her chest x-ray this morning (they do these every morning) as it showed some improvement in her lungs, though that hasn't translated to lowering the settings on her vent yet.

We're trying to keep a positive attitude despite the disappointment of the scope.

22 days...

Maggie has continued to have a fairly stable day. Her blood pressure medicine was turned off and she has maintained her pressures, though a little low, they are within an acceptable range.

Maggie's vent settings were not changed at all today. Actually, the fellow tonight tested Maggie to see exactly where her pressure settings were (minus the vent's help) and she was still at very high pressures. So this told us that Maggie has not yet turned the corner. Though she is not getting worse, she is also not getting better yet either. She has remained with these settings now for almost a week.

Like they told us before, it will be a very long healing process. We were also told that once she begins to get better, she will turn quite quickly. One of the big factors in that is getting rid of the extra fluid in her body. She is about 4 liters positive right now, and that is not including how positive she was in Dayton. They say as she releases the fluid, it will give her lungs and kidneys more opportunity to function.

We continue to sit and watch (patiently?) as Maggie's continues through her healing process. Tonight, as she had a coughing fit, she again began to shed tears. It was so heartbreaking to see. It is much easier to see Maggie sleeping (or sedated) peacefully. When she is awake and alert, she will move her mouth, reach out her arms, and look in our direction. It pains me to see her like this and the natural thing for me is to want to rescue her.

For almost 2 1/2 years, I have been able to take care of Maggie and be in somewhat "control." These last 3 weeks have made me feel helpless. It is my job to make everything better and I cannot do that. I pray each and every day that God will allow us to take Maggie home so that we can continue to take care of her. As I've said before, I am not leaving this hospital without taking Maggie with me, and I plan to keep that promise.

Please, continue to pray for Maggie. Pray that her stomach is healed, that her body will be able to shed the excess fluids, that her lungs will heal, that she doesn't have any infections in her body, and that she is completely healed of cancer. Pray for total body healing.

Friday Evening

Maggie is hanging in pretty well today. They are still happy that she hasn't had a major bleed since Sunday evening. The further we get without bleeds, the more likely it is that her stomach is healing and the less likely she'll have to have such major surgery. Not out of the woods yet, but another day closer to where we want to be. They started giving her a tiny bit of formula through her feeding tube today, so they are comfortable enough putting something in her stomach now other than her stomach medicine. They are starting very slowly, and will see how she does with it.

Maggie's lungs are hanging in okay--she didn't get worse today, maybe a tiny bit better than yesterday. Hopefully that is a trend that continues. Her fever is coming about once a day here lately, and we don't yet know what the source of that is.

Last night, she was awake (too awake) from 10 PM to after 3 o'clock in the morning. She was wide-eyed, moving, wiggling--and her numbers were acting a little funny on the monitor. They increased the dose of her Versed, one of her sedatives, and she seemed to get even more alert as a result. By 1 o'clock, we were starting to worry that she might be beginning to bleed. They checked her hemoglobin at 2, 3, and 4 and they were stable--so we were able then to get a little bit of sleep. But it was way too nerve-wracking and frightening for us. We pray for a quieter night tonight and continued calm, uneventful days.

I (Andy) got away from the hospital this morning for the first time, and actually logged half a day of work. That was nice. Then tonight, grandma and grandma stayed with Maggie while Whitney and I drove downtown for a concert (choral music, nice and relaxing). It was a bit of a challenge being there. I was tempted to leave at intermission because I couldn't get my mind off of being near Maggie. But we stayed and finished it out and had a nice talk with some old friends that I happened to see at the concert.

We keep on taking things a day at a time, and Maggie just keeps on fighting. We're so proud of her. Please continue to send your thoughts and prayers Maggie's way. We have a long way to go before we can take her home.

Spinning

Maggie continues to manage to not bleed. That is the good news, and we are very grateful for it. Her g.i. doc thought that she'd wait until Monday to scope her to look to see how she's healing--if she doesn't bleed before then, which still remains a possibility, for sure.

However...

We feel like nothing ever gets better. Her low blood pressure has continued off and on overnight, they've adjusted her medicine up and down to match her need. She isn't spiking fevers, but her extremities were quite warm leading up to the initial drop in her pressures. So, when they started her blood pressure medicine, they also cultured her blood, urine, and lung secretions and added a another antibiotic in case a new infection was the cause of the low pressures. That seemed to immediately help as her extremities were no longer warm, and they were initially able to reduce her blood pressure medicine. But then she gets low pressures again and they increase the norepinepherine. She confused the docs in Dayton and she's doing the same here. In some ways, what she is doing is looking like sepsis and a new infection and that's their most likely explanation for this.

Maggie's lungs are showing some signs of heading in the wrong direction. Her x-rays have slowly gotten more hazy over the last 3 days and they are tweaking settings on the vent to help her shed CO2. Signs of ARDS. Slowly progressing ARDS is what we were fighting 2 weeks ago. Here we are again. What is it that allowed her ARDS to improve in the first place? Steroids. But steroids also likely caused her ulcers and bleeds, and quite possibly this new infection. Which caused her lungs to worsen. So what do we do? The infection is also making her puff up as the fluids in her blood vessels are seeping into her body tissue. However, her low blood pressure makes them reluctant to give her diuretics to help with the puffiness and to reduce the extra strain on her lungs. This is all just getting old--something new always interrupts progress, complicates treatments, confuses the doctors, makes Maggie's lungs a little bit worse. The fix for one symptom leads to the worsening of the next.

We've had enough of the drama. It is time to get better now.

Maggie had a period last night in which she was very awake. We gave her her worm rattle (a gift from her friend Jay many months ago). When Maggie was going through the toughest part of her leukemia treatment, the worm occupied her hands so she wouldn't grab any of her tubes or pull at her hair. It was always with her and the nurses knew Maggie, in part, by her clinging to the worm. So now, both of her hands are restrained so that she can't reach towards her mouth to yank out her ventilator tube. But she did take the worm from her right hand, transfer it to her left and held it in the air and shook it to make it rattle (with her eyes open). Then she transferred it to her right again and wiggled it. She did so while keeping her heart rate down (she was calm) and it got our attention, and we spent some time with her at bedside. Her eyes were glazed over in a narcotic-induced stupor, but it was the most life we've seen from her in 3 weeks. It was both a blessing and also, in a way, very hard to watch. We are almost always in Maggie's room, but we don't stimulate her, we don't talk out loud to her much because they work so hard to keep her sedated. We keep the room dark and quiet and sit in our corner. Maggie's grandmothers take our place so that we can eat meals a couple times a day, and that is very much appreciated. But the reality is that it is so difficult to see her like this and it feels like it will never, ever, ever end.

We have certainly been encouraged by some timely references to songs, scriptures, or from nice notes on the blog. Thank you for that. Although we feel like we're stuck in a hellish version of the movie Groundhog Day, we will continue to assume that prayer and perseverance are our ticket to Maggie's recovery. We still want to trust that God has a plan for Maggie that is bigger than just a few weeks of massive blog-following and Facebook prayers. We are praying that Maggie has the opportunity to have a future and to continue to touch people's lives well beyond this illness. Pray with us that she does.

Update

We have been reluctant to update because for quite a while, nothing happened. We liked it that way. This evening Maggie's blood pressure started to drop pretty significantly and we thought she was about to bleed again. Thankfully, that didn't happen. However, now she's on norepinepherine to keep her blood pressure high enough. Apparently she wasn't ready to shed her fluids today, so they had to push some back and add the medication to get her heart to function correctly.

We are looking at another drawn out recovery process. The first key is to avoid GI bleeds--not an easy task. Everyone here is on their toes, looking for signs of the next bleed. Following that, her lungs are worse than they were before her most recent two bleeds, and they will need time to heal.

It has been a really intense couple of days and our nerves are shot. Tomorrow marks 3 weeks in the hospital and 20 days of ICU. Please pray that Maggie doesn't bleed anymore, that her lungs will recover, and that she won't have complications.

Clarification

Today, it was clarified to us that the plan for any future bleed does include surgery. The GI doc said that Maggie's pattern is a bleed every 48-54 hours; if she follows this again, tonight into tomorrow morning would be the time. Everyone is ready. Or, she could not follow her schedule.

The main ICU doc said that if Maggie is like other 2 year olds, she would know that all of these plans are in place and she would decide not to have another bleed. Let's hope that's what Maggie decides to do. If she bucks the pattern and gets through tonight and tomorrow without bleeding, that would be a hopeful sign, per the GI doc. We are hoping that the medicines that they've started will help her ulcers to heal.

Overnight, Maggie had a fever of 102. So they've added more antibiotics and an anti-fungal to her medicine regiment. They are also testing her to see if she has any congenital immune deficiencies that would explain why her regular pneumonia turned into ARDS, why she continues to spike fevers without positive cultures, why all of this has gone the way it has.

Our hopefulness in this situation really fluctuates. We are finding it tempting to sleep the day away--looking for reprieve. We are afraid of the potential surgery. We are sad to see Maggie go through so much. We are overwhelmed and tired of watching her monitor for her heart rate to increase, for her blood pressure to drop, or for her oxygen saturation to drop. We're tired of all of this and can't imagine it ending anymore.

That's all we have so far. Pray for no bleeding, but for healing.

Update

We have survived so far today without a bleed. We had a scare this evening when her heart rate went up, but it seems to be due to her diuretic, not a bleed. We (and the staff) are walking on eggshells, worried that she'll bleed again. But thus far, we've made it.

The staff has also come up with a plan for the next bleed, if there is one. They will scope her, just like usual. The senior GI doc will be there and will use a different cauterizing technique than last time (argon laser) and see if that looks promising. If they aren't satisfied with that, she will be sent to surgery immediately. The surgery team is ready for her, if needed. Based on the location of the ulcers, the plan would be to remove the affected portion of the stomach. However, they are located in a part of her stomach that would require them to take at least 75% of her stomach, if not more.

The hope is 1) that she avoid bleeds altogether (but they aren't counting on that), and 2) that the scope would sufficiently treat her if she does bleed again. Surgery is only a backup plan. Though it would take care of the bleeding risk, the procedure and recovery would present a lot of other concerns.

We need more time, more stability, no more bleeds, and to continue to pull fluids off of her to allow her lungs to function better.

This all feels a bit like a tightrope act; high stakes, high risk, and very high reward if we save Maggie.

If you pray, pray for Maggie's stomach to heal without further bleeds, for her lungs to improve, and for no more complications. Thank you.

Bleed

Maggie had another major bleed from ulcers in the same area of her stomach, I think around 10 pm. It was very similar to the one from the other day in terms of how massive the blood loss was, the intervention, and how frightening and critical it was. Maggie can't keep doing this--partly because the bleeding and the fix are too traumatic to her lungs. Also, because each time it happens, it is life threatening. We had about 20 people working on her from 10 through 12, then the GI team (2 docs) and 5 or so nurses took care of her until close to 2 AM. At that point, her bleeding was stabilized and they were suctioning blood clots, then cauterizing the same ulcers as before.

The GI doc gave us feedback afterwards. After the first bleed in Cinci on Friday, she was hopeful that Maggie wouldn't have another bleed. Obviously she did. That, plus the fact that the ulcer was tougher to get to stop bleeding this time makes her less confident that this procedure will take care of the problem.

So in a few hours when the day shift comes on, they are going to be consulting with the surgical team and also interventional radiologists to try to concoct a plan to act proactively to prevent another bleed. The possibilities include removing the portion of the stomach that is causing problems (surgery) or having the vessels that feed blood to that portion of her stomach embolized (radiology). Both would have benefits and risks. The surgery, especially would be dangerous and it is unclear whether Maggie is healthy enough to tolerate it. It is possible that something could happen today (today is Monday, I think).

The ICU doc told us that those options are not really standard protocol (there is no standard protocol); they may or may not be an option, but there are many brilliant minds here that might be able to put together a plan. Cincinnati is rated the 3rd best children's hospital in the country and we're having to take advantage of all of the expertise from ICU, oncology, gastroenterology, and now surgery or interventional radiology.

Maggie is going to be dealing with lots of the trauma of having gone through this twice. The key to getting her lungs healthy is getting rid of her excess fluid but the procedure, though life saving, put a boatload of fluids back into her. Her settings on the vent, as I type, are much higher than they were this afternoon.

There's not much else to say. This journey keeps on taking serious, exhausting, and absolutely ridiculous turns. Maggie continues to live--she could have died quite a few times already. One of the docs said tonight that it isn't her time yet. We pray that this institution finds solutions for her and that God would take care of all of her problems and allow us to keep on being her parents.

Another Bleed

Maggie is in the middle of another scope following another major g.i. bleed. Please pray for her. We are very frightened.

Sunday

For the most part, the day has gone as quietly as yesterday. We did have a rough bout during the night where Maggie's oxygen saturation went to 55% and they had to bag her to get her to come back up. We have struggled with much of the night and day with sedation, as Maggie is getting much more tolerant of her sedation medicines. When she is awake, it tends to lower her numbers and she appears to be uncomfortable. Last night during our rough patch, Maggie even let a tear slip out of her eye. It was very hard to see.

We have dealt with some low blood pressures today, which are a little scary for us to see. We have been through so much in the last couple of weeks that any little reminder of that (through her numbers) worries us.

We are looking to find some more encouragement from Maggie in terms of her healing. Her lungs took a bit of a step back from the aggressive amount of fluids they put into Maggie's body on Friday, so we now have to wait to get back to where we were. They are still struggling a bit to get the fluid off of her body and lungs. She has been fluid positive the last two days even though they are giving her lasiks. The sooner the fluid comes off of her body, the sooner the fluid will start to leave her lungs.

Please, continue to pray for Maggie. Pray that her lungs will heal, that they will be able to get the fluid off of her body, and that her stomach and esophagus are healed.

Quiet

Maggie has had a pretty quiet day so far--which of course is nice. The GI docs and the ICU docs are very happy that she hasn't had any bleeding since yesterday's procedure. They are all hopeful that Maggie is through the worst with her bleeding issues. Sometime in the coming weeks they will want to scope her again to see if she has the esophogeal varices or not. That will be a big deal as those are a tough long-term issue to deal with, and a dangerous one. She had an ultrasound yesterday that showed normal blood flow around her liver, so there is some doubt that she has the varices. Who knows.

The focus of today, other than keeping Maggie stable, sedated, and watching for bleeds, is her lungs. They got a little bit worse since yesterday which is not unexpected given the trauma, and the amount of blood and fluids that they gave her. So they are trying to remove more fluids today in hopes that she will breathe a little better as a result. We're hopeful.

They keep on adding sedation drugs; Maggie does much better when she is knocked out. She is currently on Valium, Fentanyl, Versed, Morphine, Presedex, Methadone (maybe more) just for sedation, and they keep on increasing the doses. We pray that we are blessed to get to wean her from the ventilator and from the sedation meds in the coming week or more. If so, the withdrawal will be fierce and we are told that it is not fun.

We are also beginning to consult with the oncology department here to discuss issues about chemo, when/if to resume it, and some other issues relative to yesterday's ordeal.

Not a fun day today, but it has been much better than yesterday (and the day before).

Procedure Over

Several hours later the procedure is done, and Maggie is stable for now. In the leadup to the procedure and during, she lost all of her original blood and now has blood entirely from the transfusions.

They found a huge blood clot in the upper part of her stomach and it filled roughly half of her stomach. When they got rid of the clot, they found some seeping "superficial ulcers" that were causing the bleeding. They fried them all (cauterized) and watched to be sure that nothing else was bleeding. Last night, the bleeding was attributed to esophogeal varices, which are essentially blood vessels in her throat that swelled and burst. The cause of these are when the liver is scarred and damaged, blood is redirected away from the liver and it goes through the esophogus to get to the heart. The vessels in the esophogus then get overwhelmed and swell. Then they can bleed. That is why we are in Cinci, as continued bleeds require more care than what Dayton can provide. The scope today did not reveal the varices, so we don't know if those are going to be an ongoing issue or not. If so, those are a chronic and serious issue that we would have to treat through surgeries when Maggie is recovered. If the problem is just the ulcers and a generally raw stomach and esophogus, then those can recover and not be a long-term problem.

The plan now is to not stick any tubes down her throat, which they had been doing to suction and detect bleeds. However, they are causing more harm than good and have initiated some of the bleeds. She is on high doses of antacids and they are hopeful that she will heal and not have any more issues with bleeding. If she does bleed more, they know what to look for, what to do, and how to manage the problem. We just need to ensure that they have lots of blood at the ready.

Maggie is definitely dealing with another infection, and that is dangerous as well--but not related to her gastro-intestinal bleeds. If that can be resolved, the bleeding issue controlled and healed, and if her lungs continue to trend toward recovery, we have a real shot of taking her home at the end of this nightmare. That is the plan for now. As we have learned, we don't know what tonight or tomorrow brings. Hopefully a calm night and some progress. We are exhausted, traumitized by what we've seen, and desperate for the rollercoaster to settle down a bit.

Thanks for the prayers. We have needed them and will continue to in the coming days.

In Cincinnati Now

Maggie is in the middle of a lengthy, critical procedure to try to stop another major bleed. At 1:30 PM today, after being stable for the night and morning, she began vomitting lots of blood again, several times. The GI doctors and 12 others are currently in her room trying to intervene. They have given her transfusion after transfusion to keep her alive during the time leading up to the procedure and during.

Our initial report, after about an hour, was that there is a tennis ball sized blood clot at the top of her stomach and they are chipping away at it to see what is beneath it. Their hope is that it is a bleeding ulcer that they will be able to cauterize and control the bleeding. There are a lot more things going on with Maggie's liver that is probably contributing to all of this, but it is hard to know where this is all heading.

Maggie was also running a fever of over 103 leading up to the procedure.

This was crazy incident #4 or 5 in which we thought we were losing her. She's extremely, extremely critical at this point.

Cincinnati Children's is quite a place, but they have severe limits on visitors, no wireless internet access to this point, and it feels like a high-security prison. It will be worth it if we can save Maggie, but our updates will be less frequent at this point.

We're hoping to keep Maggie alive another day to give her more time to get better.

Thanks for your continued support through prayers and everything else.

Off to Cincinnati

Long story....we have to go to Cincinnati Children's as the cause of Maggie's bleed needs close monitoring and access to the best emergency surgical unit possible.

Emergency

Maggie just threw up a LOT of blood, and passed a LOT of blood through her bowels. Something has happened and they're trying to figure it out. Her vitals are stable so far and they're going to do some tests to try to find the source of the bleed. It is probably caused in part by her steroid treatments. This is extremely scary. Extremely serious.

Please pray.

2 liters

We're not talking about how much pop you drink in a week. Maggie shed just under 2 liters of fluid from 7 am yesterday to 7 am today (2 liters net loss for the day). And what a difference it has made. About a third of that was the fluid that they drained from her abdomen, but the pressure that was relieved in her belly also allowed her kidneys to function better; she urinated much better. She has 3 extra liters yet to go, and my guess is if all goes well, it will take a while to get that all off of her. This morning, she is starting to resemble herself a little bit, mostly in her face as her eyelids are less puffy. This is a step in the right direction and we are so very grateful. The fluid loss will also help them to adjust things to hopefully start to correct her signs of dehydration.

This morning her abdominal catheter (that we worked so hard on yesterday) leaked and then popped out. So, they've closed her up, sterilized everything, and have a bandage over it. It served its purpose and our hope is that we don't need to repeat that procedure.

Whitney's motherly sense of smell kicked in early this morning, and she alerted the nurse to check Maggie's diaper. Sure enough, Maggie had a pretty massive...well, mess in her diaper. The doctors are very happy to have had that done, and she now has normal bowel sounds. Another good thing.

The steroids are improving her breathing and lung functioning and we're starting to reduce the settings on the ventilator.

In many ways, this post would sound like we've turned the corner. However, since we've had to use steroids to help the ARDS, there is a sizable risk of secondary infection, so the doctors are still very cautious. We'll have to take a lot of time to get to the point where all are comfortable. If her ARDS would not have been so severe, we could have eventually recovered without adding the extra risks. But this is the road that we had to take, and we believe that it is the necessary route of her miraculous recovery.

No fun day

It was a tough day to get through today.

Maggie's dehydration combined with lots of excess fluids are a serious concern. Maggie was in a lot of pain today. First, the procedure to put the catheter in her abdomen--they poked then stitched her up without local anesthetic. Then later in the day, they unstitched her, moved the catheter a bit, then stitched her back up. We were in the room for that one, and she writhed in pain for that.

She has also been agitated, opening her eyes (to the extent that she can) and wiggling a lot. It was pretty heartbreaking to watch. She is close to maxing out on the doses of the sedation that they use, so they'll soon have to add a new medication to the mix.

Now her blood pressure is higher than they want, and it may be related to her dehydration. So they're adding a few medications to help her draw in fluid from her body into her veins.

We pray that these medicines stabilize her again and that she can make progress on her hydration and fluid imbalance.

Ok.

The procedure was completed safely.

Though Maggie's lungs are improving due to her steroid treatment, Maggie is essentially dehydrated even though she has 5 or so liters of fluid floating in her body. So they stuck a catheter into her abdomen after doing some ultrasound imaging. The risk was that they could puncture her bowel or initiate some new bleeding. In fact, they wanted to do this the other day and thought they had a big pocket of fluid that they could drain. But, the ultrasound tech wanted to double-check and found that what they were looking at was fluid in her bowel.

Our worry was that the doctor, upon doing a quick ultrasound check by himself, might make the same mistake again. Thankfully, the catheter did not hit bowel, and they have begun to drain some fluid.

Oh, and the Influenza A that she tested positive for was negative for H1N1, and now this morning they think it was a false positive for Influenza A. So we have no idea what is going on.

They are going to great lengths to get Maggie to poop. Go figure. She would go 20 times a day for months, and now they can't get one out of her. Please pray that her bowels would do their job and that her fluid issues would get resolved. At this point, it is a major concern and is now more important than her current lung status.

Prayers

Please pray that the doctor would be successful in draining some of Maggie's fluid from her abdomen. It can be risky but they are beginning now.

Night is upon us again

We had a pretty decent day. No turns for the worse, anyways. We saw Maggie move quite a bit as she has been mostly off of her paralytic medicine. It is nice to see her move, but sad in a way too. Also, it makes us nervous when she gets agitated enough to interfere with her breathing on the ventilator.

This is a really long haul. We are wishing that we were done with it all and that Maggie would be better by now. That's not how it goes as we have a long ways to go.

We're staying positive and trying to be content. It is hard.

Goodnight to all who have been so faithfully supportive.

Steroid update

We are reaping a little benefit of the risk/reward steroid gamble. Maggie's lungs have improved a tiny bit since they started the steroid yesterday afternoon. They are planning to double her dose and are tentatively planning on a 5 or 6 day course of the steroid (Solumedrol). We are hopeful to see if this helps, but it is tempered by the understanding that there are risks with this therapy. We'll have to do more of what we've been doing--waiting--to see what happens.

They are also discussing Maggie's flu results--we'll see today if it is H1N1. The only change that I have heard is that they are going to immunize Whitney and I today. Her white blood count continues to rise, up to 29,000 today. Which tells us that she is still fighting something, and that the immune response will cause more inflammation.

Since Maggie has 12 pounds of fluids on her, that is an immediate concern. They are starting to feed her formula through an ND tube to activate her bowels (the ND tube bypasses the stomach and puts the formula directly into her intestines). They are also giving her a suppository to try to get her to have a bowel movement. She used to go 20 times a day, now it has been 8 days since her last one and we need her to go in the worst kind of way. If her bowels begin to function, it should help her body with the fluids in general.

They are only using the paralytic now as needed. If she is able to move a little bit, it will help her fluids to move, it will allow her digestive system to work, and it will help the secretions in her lungs to move around. They don't want her to cough, though, because the pressure settings on the ventilator are so high that she would risk puncturing her lung if she adds to the pressure with a cough. As she is off the paralytic, she might become irritated with the tube down her throat, so they'll put her back on if they need to.

We pray for a good day today, for no infectious problems with the steroids, for improved lung health, and for her bowel and fluid issues to begin to improve.

Night 10 in ICU

We have received some updated news from today. Maggie's cultures actually came back positive for Influenza A. We will know more tomorrow as to whether Maggie actually has H1N1, but it is a possibility. What this means for treatment, I don't think has changed anything. It could be a possibility that it was caused by this, but very possibly not. I don't think they really know.

Another piece of information we received today was Maggie's weight. They changed her bed this evening to a bed with a scale and she currently weighs 38 pounds. She has gained about 11 pounds of fluid in the last week plus-- over 4 liters. This is very obvious by Maggie's swelling, but it came as a shock to me.

Not much has changed for us today. We continue to walk that plateau waiting for Maggie to turn around. Her CO2 continues to be high at 76, but her PH is within reason at 7.27. Her blood oxygen level has slowly come up this evening to 80. The respiratory therapists are having to put a very difficult puzzle together, trying to come up with the correct settings to bring Maggie's oxygen up and her CO2 down. They have been unsuccessful thus far. Maggie, as they say, is not cooperating.

At first it was kind of a joke-- Maggie always going against the norm. First, she takes a chemo drug that should cause constipation, but in her, diarrhea. Now, her responses to the ventilator settings are not typical. Ha, ha, funny. But seriously, we're over it. It would be really nice if Maggie would start performing the way they would like. It's a bit disheartening when you see them shake their head as they try to "fit the pieces together."

The stress is taking years off of our life. We have been dealing with high stress all the time for 11 days now, with little reprieve. How long before your body shuts down? The emotions of the past few weeks in itself are tiring. We are so ready to see some good news, to hear some encouraging signs, to "turn the corner." An RT told me yesterday that what we are doing is basically watching grass grow. It is a very slow process, but when it starts growing, soon enough we'll have to cut it. I don't care about the slow process as long as I know that I get my baby back when we're all done. All I want to do is to be able to hear her voice again, to have her ask me to "hold you." I want to be able to see her smile. We have been fighting cancer for 20 months and I refuse to let Maggie go due to this bout. We've fought too hard, she's fought too hard. We want to take her home with us and I refuse to leave this hospital without her.

We thank you so much for the support that we have received from everyone. We wouldn't be here without it. Please, continue to pray for Maggie. It's because of your prayers that we are still here.

Changes

They did an ultrasound of Maggie's abdomen because it is pretty large. They were hoping to find accessible pockets of fluid. Then they would put a catheter into her and drain it out. However, the fluid seems to be located in places that are too dangerous to access, or it is being held within her bowels and tissue. So, there is no way to drain her fluids in that manner. Oh well.

They are testing her for H1N1, which is a little odd. She's been here 10 days, after all. But nothing else is growing, so they are giving it a shot.

They have initiated steroid treatment this afternoon, as well. Hopefully that will improve her lung inflammation and functioning as soon as tomorrow. Along with it comes some significant risks. We pray that it helps (a lot) and doesn't hurt (at all).

Maggie is still on her back, is on and off the paralytic, and is trying to hang in as long as possible before we put her back on her stomach. There's only so much time that she can rely on her belly as safe and helpful. She needs to be able to survive on her back as well.

Flipped again

Maggie was flipped to her back today and is tolerating the switch okay so far. They did manage to suction some secretions from her lungs for the first time in 3 days or so. Her oxygen is set higher when she's on her back so I think she's going to sit in the 70-75 range, instead of about 60 when she was on her belly.

One of their bigger concerns is that she's retaining more and more fluids each day. They have taken her off of the paralytic this morning for another drug holiday. They are also going to start feeding her some formula through her feeding tube to try to stimulate her gut and get her to start digesting. This could, in theory, help her to start shedding some of her extra fluids. Dr. Patel thinks this is one of the keys to getting Maggie better.

They've taken Maggie off of her anti-fungal, an antiviral, and I believe one of her antibiotics. She's run a full course of some of these, plus, each medication that goes in is more fluid that she has to get rid of. She is still on 3 or more antibiotics.

It's another important day today.

Hanging In.

We've survived another day. We're pretty tired today but we'll keep moving on.

We (and the doctor) convinced everyone involved in Maggie's care that she does much better when she's not handled, poked, listened to, measured, shifted, etc. So Maggie was left alone today and she hasn't changed much since this morning. Which is a pretty good thing. Her oxygen saturations have been about 90 today--receiving 60% oxygen. She is retaining too many fluids, though, so that will need to improve.

Ready for day 9 in ICU and to see what tomorrow brings. We still believe in Maggie and in all of the prayers that are being sent on her behalf.

Sunday AM

We didn't get a great report this morning. Maggie might be showing some signs of worsening ARDS. Her white count has increased from 10,000 to 20,000 in the last 72 hours, which means one of two things. One, she could be fighting infection more, or two, her last chemo from 11 days ago could be more out of her system. Either way, when your white count increases, it corresponds with your body's inflammatory response. This has made Maggie's lung condition even worse.

Overnight, her oxygen saturations dropped 5 points or so every time she was touched (examined by nurses, legs or arms moved, etc.), and it took her a pretty lengthy amount of time to recover. She is currently at 65% oxygen on the ventilator and we are reluctant to touch her much.

She is also having a harder time urinating despite increased efforts to flush her out. It sounds like her vascular system is fairly dry, and the tissue outside of her veins are saturated with fluid. So we have a tough situation there.

Today we heard the first mention of possibly starting steroids to try to reduce the inflammation in her lungs. This is the ultimate risk though. The benefit is that it very well could reverse the ARDS to an extent and help her to recover. However, if she still has an infection, the steroids could feed it and make things much worse (there's no room for much worse than where she's at). Or, it would put her at a heightened risk of getting a new infection. I think they'd like to wait a couple days to try this--to try to culture her blood, urine, and lung secretions one last time to rule out that there's lingering infection. Steroid use for this disease is controversial because it is such an immense risk/reward intervention. It could either save her or kill her. We don't know yet if they'll decide to use this intervention or not. If they decide to, it is clear that they are trying everything they can to try to save Maggie. It would also signal that they aren't satisfied with how she is recovering on her own.

Please pray that Maggie is infection free, that her signs of inflammation and immune response are just a symptom of her chemo wearing off, and that she turns the corner--and soon.

On her belly...

Maggie had a long day today, but she's in better shape than before. Maggie, if you recall, did better on her belly earlier in the week, but they've had her on her back for 48 hours and wanted to wait a while to flip her again. This afternoon, after placing a PICC line (a more durable IV that will last her a while) they prepared to put her on her belly. She was getting 80% oxygen and was only saturating to 86-87%.

Now after about two hours on her belly, she is at 55% oxygen and is saturating at 93. Obviously a huge improvement and we are very grateful. Her blood gases were just drawn and she is in good shape with her CO2 as well. We just pray that she maintains these levels or improves instead of trending in the wrong direction like yesterday and this morning.

So the change in positioning is huge and maybe it buys us a few more days to let Maggie start recovering on her own.

Pray that Maggie's next move is towards improvement and healing.

Morning

We seem to be over the big drops and scary nights. Instead, we are watching Maggie's dependence on the ventilator slowly creep up. Which is just as scary. The breathing treatments that they tried yesterday weren't all that helpful. The first treatment helped them harvest quite a bit of mucous from her lungs. The next 4 didn't. After several of them, they had to increase her oxygen following the procedure. So I think they are suspending those for now. I expect that they'll put Maggie on her belly again today which often helps with getting oxygen. We are trying to keep our spirits high.

Please continue to pray for Maggie, that she makes improvements today, and requires less support from the ventilator.

Thanks.

Over the Hill is Home

Seeking some encouragement tonight, from Take 6.

The other day as two men talked
I heard one say, "This road is rough.
And I don't know if I'll make it through."

Then the other turned and said
"Stay your course for just ahead
The place you seek is sure to come to you."

Over the hill is home
Just down the road is shelter
When you don't feel like trying, keep climbing
'Cause Over the hill is home

So if you ever find yourself
Out of strength in need of help
Know that hope is just a prayer away

The strength of God is always there
A faithful guide to lead you there
His mission is to show us the way

On the other side of night
Comes a day that shines so bright...

You may feel a little weary
But Jesus helps you
As you ride on His wings, yeah

Through the valleys He will guide
Keep His children by His side

Though the mountains seem so high
Oh you can make it if you try

Over the hill is home

One Week

It has now been one week that we've been in ICU, one week that Maggie's been sedated and for most of that time, paralyzed. In theory, we're one week closer to defeating this nasty beast. But it's hard to be sure.

We've grown weary and worn down. Maggie has had an okay day, but not a turn-the-corner kind of day that we'd love. She had about 10 hours of "drug holiday" from her paralytic medicine. She's on her back, on the ventilator (at a pretty high rate) and still very sick.

As you might expect, we are tired of watching without assurance that Maggie will be okay. We have held closely to our faith and to prayer, but it has just been so hard.

We need a very good night and day. This holding pattern is gruesome.

Please pray for Maggie to make it.

Cat and Mouse

We got through the night okay. At about 9:30 this morning, a little drama began. Her oxygen numbers began to drop a bit, so they've been fiddling with the settings and suctioning her. They took her off of her paralytic medicine this morning because they want her to start a)coughing to start bringing mucous up from the lower part of her lungs, and b) if she moves a little bit it will help her pass some of the fluid that she's retaining in her chest. The doctor today called it a very critical "cat and mouse" game. They need to allow her to bring up these mucous secretions, but doing so will make it harder for her to breathe in the short term.

They just did an IPV treatment which essentially sends air into her lungs at a high rate with hopes that it will break through some of her secretions, bring them up so they can suction it out, and allow different parts of the lung to regain function.

We were relieved with the way last night went, but we are still a long, long, way from being done with all of this. We hope that Maggie's miracle continues and allows her to get through the day so that we can fight some more tomorrow.

Goodnight.

We can't ask for much more....they've found a combination of settings that has gotten her to a much better level. Her pH is 7.31 and her CO2 is down to 62. Her oxygen levels are good, too. It has been more than an hour since they've made the change and she is holding strong.

We are planning to enjoy the night knowing that she will remain stable in this range.

Please continue to pray. We appreciate all of the prayer support.

Declining numbers

Maggie's numbers continue to be declining. She is not stable. Please, continue to pray hard for her healing and recovery.

Frustration

We are struggling to keep Maggie's blood gases stable. They have tried suctioning her twice with a little success, but then her numbers begin to climb again. It is very frustrating to watch different methods that they try fail.

We are feeling a bit defeated. I know you all are praying hard, but pray that her CO2 will go down, her PH will rise & her oxygen levels will remain stable.

Too soon to tell...

We don't know if the new ventilator will prove to be helpful or not. The initial numbers were a tiny bit better, but they didn't seem to want to stay down. They've now made a few adjustments to the settings and will see how that works.

Now we wait some more.

Blood Gases

Maggie's CO2 and PH continue to cause many problems. They have finally decided to change Maggie to a ventilator again versus the oscillator, to see if that might work. This is something they wanted to try to hold off for a few days, but Maggie doesn't seem to be improving with these gases.

This is a very scary change and Maggie needs a lot of prayer right now. Pray that the ventilator will do a better job of releasing the gases from Maggie's body. Pray hard.

Flipped Over.

Maggie has been flipped back to her back (it went okay)--to try to prevent pressure sores. It looks like she's got some patchy damage to the ear that she's been laying on. The wounds aren't open, so hopefully the infection risk is minimal. They wanted to wait a while to flip her as they wanted her to be stable enough so as to prevent risking a breathing emergency.

It is very possible upon being flipped to the back to see the oxygen intake and CO2 output to change. Hopefully she'll do alright or even better here on her back.

What do we know today? Not much. There's no sense of relief or increased optimism, however they aren't hovering over her giving her all of the ICU's attention either. We don't know. It is consistent (again) with the long-term recovery process that we're hoping for. The best we can hope for is a lengthy recovery, measured in weeks, not days.

I believe we'll see what her blood gas levels look like in a little bit. Hopefully they are stable or slightly improved today.

The oscillator ventilator that she is on typically has the advantage of helping the lungs to push the CO2 out, but sometimes the oxygen input suffers. However, on this machine, Maggie has oxygenated very well and struggles with the CO2--the very opposite. So she is confusing everyone. We were told that they only use this ventilator about twice a year in this hospital, (other than with the newborns--it is more common there). So that tells you how serious this has been. Of all of the pneumonias and respiratory illnesses they get, the regular ventilator usually suffices.

Keep doing what you are doing--the prayers are keeping Maggie alive.

Quick update

They just took the next blood gas. The CO2 was 73 and the PH was 7.28! We are so grateful for these numbers. These are the numbers that we saw much of the day. We pray that her gases will only continue to improve. Please pray for this as this seems to be what is puzzling the doctors. As one therapist said tonight, Maggie is not acting as they would typically expect. But it is consistent with the up and down nature of the recovery from ARDS.

We feel like we've dodged a series of bullets tonight. We're hoping to rest and ready ourselves for whatever tomorrow brings.

Keep praying.

Rollercoaster

I started a blog entry around 5:00 talking about Maggie's stability for the day, but never finished the post, and it's probably a good thing I never did because as we know all too well, things can change quickly-- and they have.

Maggie's oxygen saturation & blood oxygen levels have been very good today, however we have struggled with her CO2 and her PH (which go hand in hand). Both of these numbers began to change in a negative way this evening, so they decided to try to suction her to see if perhaps that would help the numbers.

Right before they were to check her gases again, Maggie's peripheral IV quit, which made her bed wet. The nurse changed Maggie's bedding and in doing so moved Maggie around. This appeared to make Maggie quite mad (while under sedation and paralysis). Her heart rate and blood pressure raised and during that time they also took another blood gas. This blood gas showed a PH of 7.0 (not good at all) and a CO2 of 128 (really not good). The response the respiratory therapist gave made us know this was not a good thing.

They immediately got on the phone with the doctor to determine what to do. During the conversation, they put two and two together that with the bedding change, it made Maggie very mad and this very possibly changed her blood gases for the worst (that's our fighting girl, but we are getting a bit tired of the worry she is giving us).

So, with that, they decided to sedate her even more to calm her back down and wait to see what her gases looked like. The next gas reading showed that her PH went up to 7.1 and her CO2 at 85. These numbers, though much better, are not good. Throughout all of this, they also did another x-ray to determine if maybe Maggie's lungs had torn (there's a medical term for this). They had not, but instead they found that Maggie's lungs are over-inflated. This is a good thing, as it shows that Maggie's lungs are healing. With this finding, they are now (and have been slowly) weaning down her mean pressure on the oscillator. She is currently at 28 and the RT says that normally once they are at 24, they can move back to the ventilator.

We are waiting in limbo at this current moment. They do another blood gas at 10:00. What the results show will determine the next steps. There has been talk about moving her back to the ventilator to see if this might help with her CO2. We are of course worried to death about what is going to happen. My big fear is that they will run out of options. That has been my question each time someone comes in to change a setting on the oscillator--- there is still cushion room, right? We just don't want it to come to that point.

Please pray with all of your heart that Maggie's body will be able to expel the CO2. Pray that her PH will come up to the normal 7.35 range. Pray that her oxygenation continues to remain consistent. Please, above all else, pray that Maggie's lungs will completely heal and function.

The Night

Maggie remained stable overnight. Her blood gases remained about the same, with her CO2 still above normal (71-- normal is 40-50). Maggie's PH dropped a little bit, but is still within the range where they would like it. Maggie has been oxygenating well on her belly as they have her oxygen at 50% and her saturation has stayed around 98%. We will see what the doctors have to tell us during rounds. Thank you to God for answering the prayers for a stable night.

As with the disease, things can change in a minute and this happened with another little hemonc patient during the night. Please say a prayer for the family in the loss of their child.

It scares us to death and we pray that God will restore Maggie's health and we will only see signs of healing. Please continue to pray with us.

Evening

It is great to hear from so many people and to receive so much support. Thanks to you all.

I don't know what to post tonight. Maggie will continue to be critical for a while as we wait for her lungs to heal. Is she stable? Relatively so. It can change in a moment though. The course of recovery from this type of illness is rocky. It is especially dangerous for Maggie because she is so very sick, on the most advanced breathing machine. The typical ups and downs that are expected are scary because there is only so much wiggle room when you are this sick.

We are hopeful that there will be signs of turning a corner soon. There was a little bit more encouraging talk around us today, but it is always tempered with the reality of having to be on the oscillator--that alone suggests that Maggie is very ill.

We are desperate for a quiet night and for a good day tomorrow. But we are learning to expect bumps in the road.

We'll take it moment to moment as that seems to be the only way.

Please continue to say your prayers for Maggie.

More updates.

We have been told that Maggie is stable again. But she's "one of the sickest kids in the whole hospital." Still extremely critical. We are seeing a combination of scary things and yet some that are more encouraging.

Maggie has been flipped onto her belly to try to change things up for her lungs.

It is humbling to know how many people are following along and offering support.

Pray

Maggie's body is still fine...her lungs are not doing well. Doctor just came in and they are not giving up.

More prayers

Please pray hard again for Maggie. She worsened overnight. She needs your prayers.

Evening update

This has been a much different day than yesterday. For one, it has gone much more quickly. Yesterday seemed like an eternity, and I remember looking at the clock, seeing 1:45, and thinking that there must be a mistake. We were only halfway through the day.

Part of the strange part of the day today is that not a whole lot has changed. Maggie has essentially stayed at the same ventilator setting all day. We don't know though if that is okay or if she should be improving. It's a little unsettling. Her blood pressure has been good today, her urine output and other vitals okay. So, maybe this day has been successful. But we just don't feel secure yet. Maggie had a new set of doctors and nurses today and since this is the first time they've seen her, several of them reminded us of how serious this is. As if we hadn't realized it yet.

She started getting more swelled today, so they started lasix, and I think that's helped a little bit. She also received a blood transfusion, which isn't a big deal for us as Maggie has had many of those during her treatment for leukemia.

Our faith is being tested. Yesterday, she really began stabilizing and improving once Whitney decided that we were going to read some scripture to her and pray. It was an amazing moment. God can be present in our lives for months and years but it isn't often so obvious. It was a life defining moment and we have marked it as the beginning of great things for Maggie.

Stable today may be okay, but we want to see progress. We pray that she makes a turn that everyone here will see and recognize and be encouraged by.

We are still in desperate need of prayers for Maggie's healing.

Still Critical

Maggie is relatively close to how she was last evening. Not a lot of big changes. We are getting more information about what we're up against, which is at times unnerving. Her chest x-ray shows significant "hazing" in both lungs. They believe that she has ARDS, or Acute Respiratory Distress Syndrome. This is the inflammation that happens to the lungs, essentially an injury to the lungs. This is dangerous, just as the infection is. But it is a necessary and expected part of the recovery process. You get worse before you get better. The organism that is causing this is still unknown. And, they may not ever know. They've made a few adjustments to the medicines to cover a wide range of infections--viral, bacterial, and fungal.

Another warning that we have been getting several times over is how long this recovery could take--we've been told that it will be several weeks, up to a month, or more. If they offered us a 4 week recovery (or 20 weeks for that matter) that she will survive, we'd sign up in less than an instant. There are still no guarantees that she will make it. But we can handle an extended recovery; if that's what it takes, that's fine. We also know that the course of this kind of illness is that it fluctuates a lot. We will have good moments, followed by scary ones, and hopefully more good ones. We want, at the least, steady progress.

We feel blessed to still have Maggie, but still praying for the miracle to continue. It is not close to being over. Thanks for the overwhelming support and interest.

Brief update.

Maggie had a stable night--continues to be about where we were the second half of yesterday. They are managing to drop her a bit on her blood pressure medicine and her oxygen and CO2 balance is okay.

We got some rest and sleep, too.

Today is another big day.