Update

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

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

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

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

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

Still very critical

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

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

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

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

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

Please Pray.

We need a miracle this morning.

The end of day one

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

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

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

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

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

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

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

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

Afternoon update

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

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

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

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

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

Prayers needed

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

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

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

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

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

Uneasy day.

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

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

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

Hospital

We have a rather unnerving hospital stay underway this evening. Whitney took Maggie in at 12:30 so they could check her Oxygen saturation numbers, and they are similar to yesterday, 86 to 88. She didn't have a fever, nor did she look to Dr. French or the nurses to be sickly in appearance. However, her respiration rate is close to 50 breaths per minute and she shouldn't have oxygen sat numbers that low. Dr. French is puzzled because her recent chest x-rays were unremarkable and her lungs sound clear. She does continue to have a cough.

So they admitted her as something definitely is going on and she needs to be on oxygen. The hypothesis that we are kind of fixated on as the cause is chemotherapy toxicity, or damage or side effects from the chemo. This is floating around our heads due to research we've done, feedback from a disgruntled cancer mom that Whitney ran into in a lobby, and based on preliminary ideas from the medical staff. Maggie's oral chemo that she takes weekly has a fairly rare, but potentially significant side effect of causing lung trauma or inflammation.

The problem with chemo toxicity of this kind would be that that particular chemo drug, if not all of her chemo, could/would be discontinued. Though we are a few steps away from making that decision, it would be potentially scary. The protocol that Maggie is on calls for 24 months of treatment, and we are just shy of 20 months. Beyond that, we don't know for sure if the damage to her lungs could be chronic.

Back a few steps--we just received word late this evening that a thorough set of tests are scheduled for tomorrow AM, including an EKG and heart ultrasound (there are no signs of this being a heart problem, but they need to rule it out because some heart issues cause respiratory distress). The bigger deal is a CT scan of her lungs and airway to see if there is inflammation or scarring that could identify the problem. If that doesn't give us all the answers we need, a bronchial something-or-other will happen. This involves full sedation and intubation--apparently they spray saline or some fluid into the lungs and then draw it back up so that they get some lung tissue that they can test. (Medical professionals who are reading this post are now either laughing or cringing with my poor descriptions). A pulmonologist will be calling the shots and letting us all know what the problem is.

As I finish up the post tonight, Maggie is starting to get used to the oxygen tube in her nose, is being a little bit ornery (a good thing), but is also starting a low-grade temp of 100.1.

Please keep Maggie in your prayers. Also, one of our favorite cancer families needs your prayers in a big way--Lincoln and family.

Long day...

We had a pretty rough day today. We had to be at the hospital at 7:45 this morning for Maggie's upper GI and small bowel follow through. We were late due to the breathing treatment Maggie had to endure first. The last time Maggie had this procedure she was pretty traumatized for awhile. It didn't go much better today, maybe even worse.

With this cough/cold thing Maggie has, she is very quick to cough and then throw up. She did this when they were trying to shove the "chocolate milk" down her throat. She was continually coughing up, throwing up, and the technicians would tell her to calm down. When they were finished with the first part, they were kind enough to give us our own room so that I could shove the rest of the liquid down her throat. Maggie's gag reflux was going high gear and ended up projecting all that had been drank up onto everything, my face, hair, tv, couch, clothes, & coat. The way it was going, I was very worried.

We managed to get about half of the drink down through a syringe. She was so tired from waking up earlier and crying, that she half moaned with her eyes closed. She eventually wouldn't let me do anymore and we let it at that, while Maggie slept for the remainder of our 45 minute wait.

Throughout our waiting time, we were able to also do physical therapy with Nancy. Ever since Maggie got sick with pneumonia, she has lost the confidence to walk. She can do it and will do so when she feels good, but she insists upon holding our hand for everything. We have also had very unsuccessful therapy appointments where Maggie will even tell you that she "cries" at therapy. I'm hoping things will turn around soon and that once she is feeling 100%, she will gain the courage to walk again.

The procedure ended up taking about 4 hours, which is quite ridiculous. I even asked the doctor if it wasn't a bit backwards that a child with chronic diarrhea takes so long to pass things through her intestines? The doctor thought the same thing and would never know that we were dealing with chronic diarrhea, but instead constipation. She said her preliminary analysis shows that Maggie's intestines have indeed healed some. They are not back to looking like a healthy person's intestines, but they are not as smooth as glass either. We will hear more about that in the next few days from her GI specialist, as well as whether he might think about weaning her off TPN. I don't see this diarrhea problem ending until she is all done with treatment, so I guess it's how well can we maintain it?

After being at the hospital for 4 1/2 hours, we then ventured over to the hemoc clinic to check Maggie's oxygen saturation. We have not noticed any improvements in the last few days and we both discussed this morning that we would probably be admitted today. Her sats did not improve, as we had thought. She is still running around 87-88% (normal is 94-100%). Dr. French decided not to change anything (although we are going to 2 breathing treatments a day, versus 3), and he is referring us to a pulmonologist. They are going to look into seeing what might be causing this, as it is obvious that Maggie is not sick. This sends a little wave of worry through me as we go to another specialist. I'm hoping that Maggie's breathing problem isn't a long term issue and that it can resolve itself quickly.

So, now, this leaves us at home (surprising to both of us) and waiting for an answer or healing. Maggie fell asleep with a pen in her hand on the way home from the hospital and has been sleeping for 3 hours now. If that doesn't give you a little idea of how our day went.

Please pray for Maggie. Pray for her airways to heal, for her respiratory rate to lower, her oxygen saturation to be within the normal range, and to be cured of cancer. Please also continue to pray for the other children fighting this disease, especially baby Lincoln.

Case of the Mondays...

We've had another eventful day here in the Bixler household. Mondays are homecare-nurse-visit days, blood-draw days, hold-your-breath days. We spent another weekend trying to decide if we needed to call the doctor or take Maggie in to the hospital. It was becoming clear that Maggie had taken a step backwards with her breathing and we assumed that pneumonia was making a comeback. As soon as we would decide to call the on-call doctor, Maggie would seem to improve, so it never happened. We were monitoring her breathing rate throughout the weekend and it was approaching where it was during our inpatient stay, then it would drop to a closer-to-normal level. We knew a nurse would be here today anyways.

The nurse assessed Maggie and gave an update to Dr. French, who decided to have her come in to be checked out. Her oxygen saturation numbers were at the level that is on the verge of needing oxygen and hospitalization. So they gave her some breathing treatments, looked her over, and took another chest x-ray. Ultimately, her x-ray suggested that pneumonia wasn't coming back. However, something is causing her to have difficulty breathing. The hypotheses are 1) that it is fluid related; maybe her TPN rate is too high and her chest is assuming some extra fluid. In case this is the cause, she got an IV diuretic today. Or, it could be lingering effects of her cold and recovery from pneumonia. What is clear is that the cause of it all is unclear. Ultimately, we got a surprise at the end of a long day--Dr. French let us go home today. We'll check her oxygen saturation on Wednesday and continue the breathing treatments from home.

It's getting to be routine for Whitney and Maggie to have long days on Mondays (in the clinic or getting admitted to the hospital). The uncertainty, disruption of routine, the stress of watching Maggie scream through x-rays and breathing treatments....they're no fun. So, in reality, we're worn out, right from the beginning of the week. At the same time, we know that it is better to be struggling with these issues than with worries about her cancer.

This is how it goes and we have to deal with it.

All Clear

We had our visit to Maggie's doctors today. We started out going down to Cincinnati to visit Dr. Mezoff, Maggie's GI specialist. He continued to be encouraged by how she was looking and acting. He decided the next plan of action is to take a look at her small bowel again through an upper GI with a small bowel follow through. Maggie had this test awhile back and it was quite a traumatic experience for her, along with it taking a surprisingly long time. If her bowels are looking repaired (not smooth), they will begin weaning her off of TPN.

Weaning Maggie off of TPN is a little bittersweet. It would be nice to not have Maggie continuously accessed and not have to poke her with a needle weekly. On the other hand, it has been nice not to have to stress about counting calories, measuring liquids going into her, worrying about potassium. Maggie hasn't been eating much since she gets most of her calories through TPN. I worry that she will not meet her calorie intake and not eat because that sensation of hunger hasn't been there. Oh well, we're not even there yet, so I should probably just hold my worry until we get to that point.

We also visit the clinic today and had another chest x-ray. The verdict is that Maggie's lungs look clear of pneumonia. Her oxygen saturation level was 97% and though her respiratory rate is still high, I guess it doesn't have a link to her lungs. It might be due to the fact that she is still quite congested and has a pretty nasty cough.

We were happy with the report though, and even happier with her quick recovery. We have read many stories of kids in Maggie's situation who take weeks and weeks to leave the hospital. However, Dr. French couldn't guarantee that it won't come back. But hopefully we know the signs that we can catch it early again if it does indeed come back. Let's pray that it doesn't though.

Please continue to pray for Maggie, that she is completely healed of cancer. Pray also that her bowels have healed and she can be successful when weaned from the TPN. Also, please continue to pray for those children who are fighting their own battles with cancer.

Home

We returned back to our wonderful home on Friday late afternoon. Unfortunately our homecoming consisted of a driveway that we couldn't get into due to the snow from the week. Kind of a soggy experience to trudge up many inches of snow with a sleeping baby, but I was pretty happy to just be outside after being cooped up indoors for 5 days.

Maggie has been pretty happy to be home. Last night she was so excited that we couldn't get her to sleep. Andy and I both went to sleep with a playful child in-between us. Though Maggie's respirations continue to be in the 40's (normal is 20's), we are hopeful that her oxygen saturation level is up in the 90's. I had hoped that we could get confirmation of that today with the nurse's visit, but she forgot the machine. We'll just trust Maggie is okay until we get that confirmation tomorrow in clinic.

Please continue to pray for Maggie, that her oxygen levels are at the appropriate level, her respiration rate will decrease, the pneumonia will be clear, and that her cancer is completely gone.

Update from the Hospital

We apologize for not updating you until now. The wireless connection has been down all week and they just finally fixed it. I thought I'd take advantage and let you know what has been happening before something like that happens again.

We are still in the hospital. I think, on Monday when we were sent to be inpatient, I had hoped that by today Maggie would be all better and we'd be leaving. Not exactly the case yet though.

To update you from the last couple of days, and perhaps more for our memory if anything like this should happen again... Maggie came up to the 4th floor from the clinic on Monday on 2 liters of oxygen. Her saturation levels were at about 83 when coming into the clinic. Once she was on oxygen, it got her to about 93-94%. Maggie really struggled the first couple hours with the new tube on her nose and so that lead to her saturation levels being lower.

Monday night was a very hard night for us, sleep-wise. It's amazing how your brain allows you to block horrible experiences. Sleeping in the hospital is pretty difficult and on Monday night I wondered how we ever did it for almost 100 days last year. Maggie was hooked up to the monitor on Monday night and with that came every possible beep. She also was given 2 antibiotic infusions around 1 or 2 that night which in total lasted an hour and a half. I slept with Maggie much of the night, which allowed her to sleep okay, but again, I had forgotten how tiny those beds are, and especially when you have a pillow hog. So Monday was a rough night for us.

On Tuesday, Andy took a sick day so he could be here at the hospital with us (and it was good too, since we got another winter storm). Maggie stayed in her bed much of the day, except for the evening when we were able to take her to the playroom. She really enjoyed playing with the toys. We had a bit of a mishap in the playroom, as when a respiratory therapist came in to check on her, her levels were back at 87 (they like to see them 92-100). Here, he found that Maggie's portable oxygen tank had not been turned on correctly, so she had been hanging out breathing on her own for over an hour. Not very good.

We also struggled with the doctors in getting Maggie her regular doses of Imodium. Given that she has chronic diarrhea, she takes quite a bit of Imodium a day. The doctors wouldn't allow her to have her full dosage amount, so she began having increased diarrhea (antibiotics also didn't help the situation). With much pushing and conversation, we finally got them to change it to what she gets at home. However, they decided that since her diarrhea increased, they wanted to test her for c-diff. Given that she might possible have this, or that fact that it hasn't been ruled out, yesterday they put Maggie basically in quarantine. She is no longer allowed to go outside her room due to the chance that she can infect someone. I'm a bit frustrated with this-- she has chronic diarrhea and they didn't give her Imodium! Why punish the child for your mistakes?!

Yesterday, Maggie began to improve some in her breathing. During her nap she was ranging in the upper 90's, so the nurse decided to take her off of oxygen to see how she'd do. She did pretty well, staying in the low 90's until she had a coughing fit. When she did this, she fell back into the 80's and we couldn't get her back up. She went back on oxygen, but sounded pretty junky in her lungs. The respiratory therapist came in the afternoon and decided Maggie needed to be suctioned because she was so congested. Maggie is not blowing her nose yet and when she coughs, unfortunately she hasn't learned how to bring it up yet.

Though the suctioning was quite traumatic for Maggie (they stick a tube down her nose into her throat to get her to cough up the phlegm in order to catch it in the tube), it really cleaned out a lot of her sinuses. It probably cleaned up the last 2 1/2 months worth of that nasty cold she had. Her saturation levels dropped with this procedure due to the crying, and so they bumped her back up to a liter and a half. After some time, Maggie was again back on a liter until during the night when they put her on a half liter.

Her levels stayed up over night and this morning the nurse again decided to give Maggie an opportunity to breath on her own. She has been without oxygen support for over 5 hours and with the exception of the crying fits when people touch her, she has been in the low 90's to about 95. They want to see her at 92 and above and currently as she is sleeping she is just hitting that mark.

I still don't know that we are out of the woods with oxygen support. I keep holding my breath, praying that it doesn't drop. During doctor rounds today, they told us we will be going home tomorrow, as long as Maggie doesn't require anymore oxygen. Maggie was given an x-ray late last night and the day before. The first x-ray showed improvement from Monday's, but last nights was the same. Though I've been told it x-ray images of pneumonia are behind how the child is actually doing, I've got to hold tight to be realistic perspective-- expect the worst, and be pleasantly surprised. We'd really like to go home, but I'm just not sure we're entirely out of the woods yet.

On a positive note, we did have physically therapy with Maggie's therapist, Nancy, in our room today. Nancy said that Maggie hasn’t lost any of her strength or abilities with this illness. I worried that she might have given the fact that she has sat in bed a lot since we’ve been here. Especially now that she is locked to her room, finding things to do is a bit of a challenge. Thankfully she is a huge fan of the Backyardigans and has enjoyed watching them on DVD. I guess it doesn’t take too much to entertain our little girl.

Please continue to pray for healing of Maggie’s pneumonia. Pray that she will no longer need the support of the oxygen and that her lungs will clear of the fluid. Also, continue to pray for Maggie, that she is completely healed of cancer. Being in the hospital for pneumonia is a whole lot better than being in here for that evil beast, cancer.

From the hospital...

We didn't expect to be here, but we will be attempting to sleep from our old familiar room on the Hematology/Oncology unit. We had been discussing Maggie having rapid breathing over the weekend, and as it turns out, Maggie has pneumonia. You wouldn't guess it here by the look on her face. This was one of her better moments. She's still adjusting to being here, having probes and leads on her, and I'm sure she doesn't feel quite 100%.

This is new territory for us--Maggie's never had pneumonia. She has begun several treatments, including steroids (we had a two day break from them, and now they're back) and she is on oxygen. Also, she has started several antibiotics to cover a variety of types of pneumonia. Some are easier to treat than others, so we'd appreciate prayers for Maggie to respond quickly to the treatment. The key issues will be getting her oxygen saturation rate back up to normal while weaning her off of her oxygen. Please pray that the pneumonia gets better (and not worse).

We'll fill in more details as we get them.

Steroid week

We are in the middle of steroid week and it is a bit more challenging than the last few. Maggie has been incredibly whiny and says "mama mama mama" constantly throughout the day. She feels pretty cruddy, I think. We had some vomiting issues on Tuesday so we have been medicating her with Zofran around the clock. Her appetite is low, yet she is very thirsty as she is always asking for juice.

I think part of the reason for a harder week for us is that Maggie had a spinal on Monday with intrathecal chemo. This must cause her much more discomfort than just having the steroids. They also increased her dose of Vincristine by about 30%. Though I haven't seen any side effects from this chemo drug, it might be causing her to feel more agitated as well.

We have been giving Maggie Benedryl for bedtime to help the nausea overnight, but also to help her to sleep. We have skipped working on getting Maggie to sleep in the big girl bed until after this week. It's just not a priority. She is refusing to nap in her bed now, so the steroids are definitely affecting her sleep. Hopefully the Benedryl will continue to override this and we will be able to get the sleep needed in order to manage this dreadful week.

Please pray that Maggie will feel better soon--these horrible side effects will go away quickly. Please also pray for patience for us as we try to remember that this is not our Maggie, but the drugs. Also, please pray for a special little boy, Lincoln, who we've talked about before. His family has not received good news. Please pray for a miracle with this precious baby boy.