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!