Nine weeks and a taste of the outdoors

The doctors have jointly come together (pulmonary, oncology, & nephrology) to make some decisions about Maggie's situation. First off, her acid reflux test came back normal, meaning she doesn't have acid reflux (the antacids she is on are working). The kidney doctors ordered a test of Maggie's kidney function to determine if she was having problems and thus the reason for retaining fluids (as well as checking to see how her kidney function was). This test came back normal; well actually better than normal if that is possible.

Pulmonary came to rounds yesterday morning to help make some decisions in regards to Maggie's upcoming tests (an oxygen study & sleep study). They decided at this point in time, they are not going to do either study because they don't feel it would give any more information to what they are already treating. They also want Maggie to be completely weaned off of her withdrawal medicines. She will be finished with these meds (methadone & valium) on May 4. They have decided that the de-sats that Maggie is having at night are most likely related to the sleep cycle that she is in-- REM sleep. So, the sleep study might eventually happen, but probably as an outpatient visit.

Pulmonary also suggested moving Maggie to oral lasix to help with the potassium problem as well as help with our future plans of discharge. They need to be able to have a plan in place that helps her to get rid of fluid yet keep her electrolytes at an appropriate level. This oral lasix began yesterday so we will see how she does in the next couple of days.

Maggie's oxygen requirement remains where it has been the last week plus. She goes from 3/4 to 1 liter. She grows tired in the evening and we can tell because she does more de-sating after 5:00. We try to keep her as relaxed as possible since the more energy she exerts, the more work it takes for her lungs to function properly.

Today marks the 9 week mark of being in the hospital. Today, Maggie went outside for the first time in that 9 week period (we aren't counting her transport down to Cincinnati). Her occupational therapist took her outside on their playground on the roof. She had a wonderful time playing in the sun on the blanket and going down the slide. A friend that works at the hospital was there and took the pictures that are posted. Maggie is enjoying life to the fullest. I'd just like to be able to have her enjoy it outside the hospital too.

We put the clothes that we packed for Maggie back in February on her. We have found that her pants are too tight in her diaper area and too short, her sweatshirt is very tight around her, and her shoes are too small (I think due to some wideness in the foot). We might just be buying her a whole new wardrobe when we leave here, as she has gained over 5 pounds since being admitted into the hospital (much of that is most likely fluids).

Maggie picked a new toy out and played with it on the blanket outside.

She is crawling! Maggie is getting her strength back and doing some of the things that she was doing before she got sick.

She went down the slide 3 times. I think one of her highlights of being outside.

What a happy little girl! She is such a joy.

Tests/Studies

Maggie has undergone several studies in the last couple of days. On Friday we found out that Maggie's echo from Monday showed an increased blood flow in a vein above her heart. They decided to repeat the echo again yesterday to determine if it was a fluke or a real reading. The echo yesterday showed the same results and so they decided to do an ultrasound on Maggie's veins above her heart and in her neck. They hoped to be be able to find a blood clot through the ultrasound, but this is often hard to find and was the case for us as well. If there is a blood clot, it is near the heart and the ultrasound was unable to see that. The only other option is to get a CT scan, but this is on hold because of the same reason as before-- it means sedation and intubation. If they do find it is a clot though, they really have their hands tied because to get rid of the clot, they put a blood thinner in her. This is something that they cannot do right now because of her stomach issues. It could result in another GI bleed if they thin her blood. So, for now they will wait and watch and hopefully it isn't a big problem. Lord knows we don't need another.

Maggie also had an impedance probe inserted through her nose and into her stomach on Friday for 24 hours. This probe was to measure the gastric juices in her belly, how high they go into her esophagus, etc. We still are waiting the results from this study. The reason for the study was to determine if she is having acid reflux and if this might be the reason why she continues to de-sat at night. Based on the results of this study, they will determine if she will have a sleep study done as well. They are trying to figure out why she has these oxygen desaturations at night. That is one of the reasons why we are still here and won't be going home anytime soon.

They continue to try to dry Maggie out, however, they are running into an electrolyte problem. In the diuresis of Maggie, she is losing a lot of potassium. They have had to give her boluses to bring her back to a normal or even lower than normal level. It is a happy medium between trying to dry her out from a lung standpoint and not end up hurting her kidneys or other body systems. Maggie will most likely be on diuretics for the next year, but it is now trying to get her on a plan that doesn't harm her body and one that we can go home with. Another reason why we are still here and will be here for awhile.

Maggie continues to act wonderfully. If any of you knew her before, you'd know her to be shy, reserved, and not very social. She is a completely different person now. She tells people "hi" and "bye," she will answer their questions and even voluntarily talk to them (normally about what she's watching on tv). She repeats words and has become very verbal. We have to laugh at her sometimes because she is such a riot. That is the silver lining to all of this. We finally are able to see what our Maggie is really like minus all the chemo. We hope this continues and it's not the weaning drugs that are still in her system.

Please continue to pray for Maggie. Pray for complete healing of all of her body. Pray for answers to the unknown and for easy solutions.

Puzzle

Well, we had 6 weeks of horrible agony (as Maggie was critical and on the ventilator), a week and a half of glee (such rapid progress), and now 3 or 4 days of cautious concern. Maggie's oxygen requirement has crept up to 1 liter, her x-rays are quite cloudy, and she's been having weird dips in her oxygen saturations. Within the day, Maggie's oxygen saturations bounce around quite a bit, sometimes in the high 90s, sometimes dropping into the 80s. At night (while asleep), she has been sitting close to 100 but has sudden and more dramatic drops--tonight she dropped to 69, then brought herself back up within 30 seconds. Oxygen saturation numbers below 80 are dangerous if they last longer than a minute, and these kind of drops just shouldn't be happening.

Maggie's GI doc, whom she's been seeeing for quite a few months, joined the attending oncologist in a care conference--to discuss what the plan is for Maggie. There was a lot covered, and I don't feel up to typing it all. However, although her GI issues are pretty significant, they aren't really keeping us in the hospital. Over a long period of time, we'll be working on Maggie's diarrhea and managing Maggie's nutrition (TPN, tube feeds, maybe NJ tube feeds which bypass the stomach). Her stomach is injured/weakened enough that we are worse off on GI issues than we were before this whole ordeal. We can work on that outpatient, though. Her lungs are a bit concerning as they are worse than they were a week ago. A pulmonologist came and consulted with us today as well. The possible causes of her slight worsening over the last week seem to be: a) fluid retention, b) gastric reflux (could lead to gastric juices irritating her airway or even seeping into her lungs) c) aspiration--food and drink that doesn't go down the right "tube" and gets into her lungs, d) new pneumonia/infection. There are a series of things that they'll look at in the coming days to try to figure it out. It's quite unnerving actually. Maggie's lungs are quite injured and will be vulnerable for months and months. Any new pneumonia will be serious with her weakened state. The pulmonologist expects that Maggie will be on oxygen indefinitely--it could be a long time (months or even years?) It's all a mystery at this point and it is impossible to predict. We're still looking at several weeks more in the hospital, at least. So we're not quite able to relax like we'd like to.

Please pray for Maggie's lungs and health. It is still a scary time.

When awake, Maggie has been energetic, happy, filled with joy, and talkative. She has begun crawling on her bed, she painted pictures with the occupational therapist, and has been pretty sociable with the staff. So that has been a blessing.

End of Treatment

Monday brought a rough start to the week for us. We awoke early this morning to a nurse telling us Maggie had an ultrasound, but nobody knew why. We then were told a bit later that they had to redraw Maggie's labs because they looked "funny" this morning. You never want to hear that word. According to her 4:00am labs her white count was 800 and ANC 0. Yesterday her white count was 7,000 and ANC 5,000. No cancer parent ever wants to hear something like that. We prayed and were sick for an hour before the results came back similar to yesterday. Thankfully it was a faulty lab draw and Maggie continues to be in remission. This morning was a reminder to us that we are easily shaken with the talk of the "R" word.

Maggie has begun getting "end of treatment" tests. That's right, Maggie is finished with chemotherapy. We read of another little girl in Maggie's similar situation who ended treatment a month early after having pneumonia, but of course had no idea at the time that we would be walking in similar footsteps. The head doctor of oncology at Cincinnati Children's does not believe that giving her 2 more months of treatment will do anything to the prognosis of the disease, and if anything it could put her at higher risk of getting sick once again.

We are very happy to be finished, though we didn't get to properly celebrate the last 6-MP dose (or as Maggie calls it, her "rit," as in favorite). Of course, I grow a little scared about ending early, but we have learned in the last 7 weeks the risk/reward scenario. We lived it more than once and we don't want to put her in that situation again. Maggie's body has definitely gotten a beating from the last 20 months of chemo, and I don't believe she would be able to take much more.

With that, Maggie received an ultrasound of her abdomen today. Her liver was what initially brought us down here (when after further study, the liver wasn't the problem, the ulcers were). On March 13, she received an ultrasound which showed her liver to be enlarged. While her liver and spleen are still a bit enlarged, they are not of any worry to the doctors. They expect that after treatment and TPN. She also received an echocardiogram today and will be getting an EKG as well. They want to see how all of Maggie's organs are doing after having 20 months of treatment.

The doctors are in the process of scheduling a care conference to bring all those involved in Maggie's care (GI, pulmonologist, oncologist, etc.) to come to the table to discuss the goals for Maggie-- goals while still here and goals to get us home. Hopefully at this conference we will have a better idea of when we might be seeing our home again. It sounds as though Maggie may remain on oxygen when going home, given how injured her lungs are. She still continues to linger on less than a liter of oxygen. She still has de-sating episodes, mainly while she is sleeping and expending energy. We will see what this week brings, though I will admit, I am itching to get home. I would like to see my lilacs this year as last year we were in the hospital as well.

Maggie continues to amaze the doctors with her strength. Just a little over a week ago she was on the ventilator and only a week ago she was unable to hold her head up and shook violently. She is making strides, and we can tell she is feeling better as she is beginning to communicate with us once again (this makes Daddy especially happy). Her voice is still weak, but it it's the cutest little thing and we just smile anytime she speaks. She is very excited to watch the television and even more so the food trays or bags of food that we bring into the room. Though she isn't eating a lot, she is picking up from where she left off.

We continue to hope to make progress this week so that we can get one step closer to going home.

Out of ICU

I apologize for not posting in a couple of days. We have been very busy with an awake Maggie, trying to entertain and be near her as much as possible. This has added to our exhaustion. We are very worn down and tired after being through so much in the last 7 weeks.

Maggie made it out of ICU on Wednesday morning. We are currently on the hemoc floor in Cincinnati. We decided not to transfer back to Dayton due to the added resources we have down here (GI specialists, pulmonologists, etc.),. and we didn't want to send Maggie back up on an ambulance by herself as I think it would be quite traumatic for her.

We are happy to be out of ICU, though it was a bit bittersweet. We had grown very attached to many of the nurses and we were really happy with the care. But, we won't complain to being in a "regular" room. Maggie has been doing very well. She has lingered between a half liter of oxygen when she is sleeping or exhausting a lot of energy, to no oxygen at all. We don't have any idea how long we will be here. I would love to get home to see some of April, but we will definitely not rush anything.

Maggie is finally going to be allowed to have some solid food today as well. She has been on a diet of clear liquids since coming off the ventilator. She has done very well so far with no aversions. She is also getting OT & PT and the goals I had of having support of her trunk and head have been met. She is able to sit up on her own, though she tires easily. It will take a lot of time before we are back to where we were.

So, that is what has been up the last few days. Maggie continues to not sleep well at night and requires one of us to lay with her. She is slowly beginning to talk a little, very quietly and to only a designated few (mainly Mommy). The doctor is happy with her progress, but it sounds like we have a long road ahead of us. Please continue to pray for Maggie to have a complete and speedy recovery.

Progress

Maggie continues to make us happy--she's doing very well. She is down to just .1 liters (that is 1/10) of oxygen and even managed a couple hours today without any oxygen assistance. We never would have imagined last week that she would be at this point. She's also doing very well with her withdrawal, all things considered. She hasn't had any violent tantrums, screaming, or any obvious signs of pain. I think it will be a little while until she is off of the meds that are helping her with the withdrawal process: methadone, valium, and neurontin.

Within a day or a few, we are expecting to be on the hematology/oncology floor--off of ICU. That will be a big relief. I would expect that we'll be hospitalized for a couple of weeks yet, but who knows.

Despite all of her progress, we are still very aware that Maggie has a lengthy recovery ahead of her. They are currently monitoring her urine output as they cut off and reduce her diuretics. That will be an important step. Also, her electrolytes are needing to be balanced and stable. The GI issues that we've dealt with for over a year are going to be slow to recover too and are exaggerated by the withdrawal. It is clear that Maggie needs to stay on TPN for a while; it will take time for her stomach to be able to tolerate food (either formula through her NG tube or regular solid food). Of course the longer she is on TPN, the longer her liver will be taxed beyond what we would like. This illness has caused a delay in our plan to wean the TPN, which we were starting to talk about in February. Now it will be a while for sure. She also needs to regain a lot of strength to be approved for discharge.

Cancer treatments are still on hold and the signs seem to point to a real possibility that Maggie will skip the rest of her treatments--she had been scheduled to have chemo through the end of June which marks her 2 year mark since she was diagnosed. She has been so extremely sick that it is hard to imagine suppressing her immune system any further and making her vulnerable to a new bug or a worsening of whatever she had this time. However, we haven't talked with Dr. French, Maggie's oncologist in Dayton, for over a month. So final decisions about whether or not to resume will require his input. We'll see.

The intense fear of Maggie being in the most fragile situation imaginable has subsided--but this still remains a challenging situation for us emotionally. Of course we are grateful and relieved beyond words to be where we are today. However, as talkative and energetic as Maggie was for the first day post-extubation, she is just a shell of herself now. She rarely has much, if anything, to say. She is awake a lot (almost the entire day since she woke up at 3:30 or so this morning). She is not very active (except for pointing at the TV when she gets excited) and she kind of looks apathetic, or even sad. I don't think any of this is all that unexpected. She's been through a lot. The pictures above paint the picture: she has this look on her face all the time lately. But she looks much more healthy than in past weeks. Her hair alone has changed so much since she was first intubated--we're going to have to figure out how to do little girl hairstyles now.

We are tired and emotionally drained from all that has transpired in the last 46 days in ICU. We'll gladly take it though. We are so incredibly thrilled and relieved to have an end in sight. It is clear that Maggie is loved by so many and has captured quite a few hearts along the way. We can't wait for her to feel better and better and to work her way closer to being sent home!

Joy

We have had a very good last day and a half. Maggie has been doing exceptionally well. Yesterday morning at 4:00am, they turned off all of Maggie's narcotics (sedation drugs). Around 8:00am, the drugs had worn off enough for her to know that she had a tube in her throat and her natural reaction was to gag/vomit. Because she began to vomit, they decided not to wait until after rounds, but instead to do it during rounds. Thus the reason for the earlier extubation-- she was ready.

Once they extubated Maggie, they put her on a high-flow air canula around her nose. She was given high settings for this-- 10 liters of oxygen at 100%. Throughout the day they continued to lower her settings as her oxygen saturation was at 100%. As Andy said yesterday, she continued to vomit after extubation, their thought being her throat had been irritated by the tube sitting there for so long. Once she was given Zofran (anti-nausea drug) she settled down and we haven't had problems since.

As far as her lung health is concerned, they transferred Maggie from the high-flow to the regular oxygen this afternoon. This morning they were able to wean her down to 5 liters at 50% on the high-flow. When they changed her to the regular oxygen this afternoon, they moved her to 3 liters. Just a note, that before Maggie was intubated, she was on 5 liters in Dayton. In the last 3 hours or so they have been able to wean Maggie's liters to 1. One! It is amazing to us that she seems to be requiring such little assistance. And her saturation is still between 98-100%. It is hard to believe that just 48 hours ago she was on a ventilator and now she is on 1 liter. We hope that Maggie continues to do so well with her lung functioning.

Maggie has been very weak and shaky. In some ways, it feels like we have a 30 pound newborn (versus the 10 pounder we had at birth). Her shakiness is due to her withdrawal from the heavy narcotics. She of course is very weak since she has been laying in bed the last 6 weeks. As we held her yesterday, it was very awkward as Maggie couldn't support herself at all and it seemed as though she couldn't get comfortable. We enjoyed holding our baby in our arms after not being able to do so for 6 weeks, but since those few moments, we have kept her in bed to recover.

Maggie's behavior has been so cute. She has picked up right from where she left off. The day she was intubated, Maggie was NPO (nothing by mouth) all day in preparation for her bronch. She asked for juice all day and we had to pretend to call the lunch ladies and ask for them (but they never showed up!). The day before she was extubated, she was quite awake, and the first thing she mouthed to me (she still couldn't talk) was "juice." She hadn't forgotten after 6 weeks.

As Maggie has become more aware in the last week, she has also been pointing to things and we couldn't figure out what she wanted. Yesterday, she finally was able to verbalize what she has been wanting. There was a water bottle on the windowsill that Maggie pointed out yesterday and said "wa-wa." I asked her how she thought we could get the water. Her response, "Andy." I guess she hasn't lost the habit of calling her daddy by his first name, as well as what he is best known for-- the gopher. She has called for him several times in the last day to do something for her. It's very endearing (hopefully Andy thinks so too).

Maggie's new favorite thing to do is to suck water from a sponge that they use to clean her teeth. She had been requesting for water from the time she was extubated and they didn't want her to have anything by mouth yesterday in case she needed to be re-intubated. The nurse allowed her a couple of sponge dips into the water and she sucked away. Today she has been given the okay for clear liquids and so we have allowed her to dip the sponge by herself (though shaky) and she will hold it in her mouth for quite awhile. I have heard of other children who have had an oral aversion after being intubated, but thankfully I think we will not have to worry about this.

So our last day and a half have consisted of keeping Maggie comfortable and entertaining her. She has watched many of her favorite movies and shows in the last day and the excitement that she shows is precious. Last night she commentated through all of Backyardigans. Though she is still very hoarse, she tries to use her voice and still experiments with it some.

We are so happy to have our baby girl back. She is such a joy. Andy said back when Maggie was first intubated and when we thought we had lost her, that we would appreciate her so much more after all of this (we had no idea it would be 6 weeks). I told him, there is no way we could appreciate her more than we already have. She is loved beyond belief from both her mommy and daddy. We thank God for our precious miracle.

No tube in my mouth!

It's Out!

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

The Corner

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

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

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

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

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

Fingers crossed

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

We're hoping for the best.

Big Week

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

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

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

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

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

37

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

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

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

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

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

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

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

Ready for Weekend

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

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

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

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

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

Setting changes

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

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

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

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