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.