Busy Week

First thing I have to say is I have no idea how to respond to comments that I get - I am an idiot sometimes with that kind of stuff. Thanks for all the info. I have been up every chain of command and every tier of social workers you can think of. I am finally making progress with the Senator's office. The med waiver I have applied for and when she turns 3 she can actually be on the list - however long it is. I think that we are stirring up an area where there is a great need in this country and hopefully we will be sucessful in getting some things changed for not only us, but other kids and families like us.

School is out here as of last week and the boys are home. I like it better - even though the house is really crazy. No having to get anyone out the door and force myself up at 6 after only getting to sleep a short time earlier. I can sleep till 8 now. Woohoo! Trying not to fight the grind on any level. Making appointments that work for us and not pushing Megan too much.

We have some new stuff happening - going to Detroit to see a specialist that works with infantile spasms and metabolic issues in the brain. I found him through other blogs and chatgroups from parents who have dealt with stuff like this too. We are slotted for August I think - first available. Cant wait! Have a whole list of genetics that have not been run that can be helpful too in sorting some stuff out. I have been busy doing my research.

Think I found the van style we need - rear entry - full cut so Meg can sit up in the second row between the 2 captains seats and we will still have the option of the bench in the 3rd row if needed. Like I said before - busy week!

Last night I read a book to Meg I have had since she was 1 month old - The Magical Mermaid. I have never been able to read it to her as I thought it would be better for a 4 year old but I thought why not. It gave me mixed emotions. I cried thinking back to when I bought it - I had no idea that she would go through all of this. I cried too thinking about how you take reading a book to your toddler for granted and how I wish I could just do that comforatbly and enjoyably every day with her. Does not mean that I am not going to read to her - still going to. I love it and it makes me feel like there is some sense of normalcy going on.

Day by Day

Each day has brought so many changes in the last 6 weeks since we have been home. I have somewhat adapted to being homebound but at times it is still hard not to be able to go to the store to pick things up that we need or just get out for a little bit here and there. It was hard to do those things before where now it is not only hard, but actually impossible now without a second person. Even with a second person it is still difficult. Between all of the equipment, the preparation to go, the task of loading Megan into her wheelchair to get to the car, then getting her from the wheelchair into the car seat, reconnecting everything and then loading the wheelchair into the back you are wiped out by the time you do that and then you have to do it all over again at your destination, then again to get back in the car to go home, then again to get her in the house!!!! Everything has to be timed precisely for meds, feeds - you name it.
We have been trying to figure out this nursing thing and it is a nightmare. Everything that is a resource that you try to get help or find assistance it ends up not being anything. In between taking care of Megan I have been trying to find all this stuff. Night time is the worst because we have to make sure that Megan does not have any problems which means you can't sleep. Not really. I sleep on her bed curled up at the end like a cat or along side of her on the opposite side of the vent hoses in the crack between her and the rail. Either way I have one eye open. I miss sleep so much!!!!! I got used to some sleep in the hospital. I think subconsciously I knew there were nurses so my body just collapsed everynight when we were there and now I am back to the grind. What is most upsetting is that it is dangerous. Nobody can be on call 24 hours. Something is bound to slip by. If she vomits she can aspirate or plug her trach. You can miss that and then it can be fatal. Social Security Disability cant help with the expenses because we have too many assets - more than $2,000 worth! Duh - hopefully people who are having kids have that. Medicaid has a program called CMS but that is income based also. I submitted our info to both. SSD denied already and CMS has not responded yet. United Health Care has denied nursing and our Dubable Medical Equipment limit for the YEAR is 2,500. Vent equipment alone costs apx. $1800 per month - so we met our 1,000 deductible already and we have already exhausted our DME limit. That does not account for all of the GTube, Feeding Pump, Trachs, and all of the supplies needed to care for all of that stuff or adaptive equipment that is necessary. Big bill for us. Nursing is about $35 per hour for us to private pay which equates to over $300,000 a year for what Meg requires. Not possible. I guess that we have to become indogent to qualify for any assistance and then when all five of us are being supported by the government that will make more sense???? Then the government can come up with more programs to help people to get off of the system which my boys will need. If we could just get some assistance now then we can all remain productive and continue to plan for their future and our future, take part in the workforce, pay taxes, etc. Pat feels like we work and pay taxes to help everyone else and we cant get help. The system needs serious reform. Even if you have private insurance like we do it excludes so many things that you need at the most crucial times that are unexpected and unplanned for. Then you get caught in the gap of having exclusions on your private insurance but being overincome for any assistance on care that can and will deplete everything. If we were at a qualifying level we would have EVERYTHING Megan needs with no questions. They call it being "less forutunate". I would love for whoever deemed someone less fortunate to come here and tell me who is less fortunate than Megan. She did not create her situation, nor did we. It is not a generational thing with our family to need assistance as it is with so many others. We have acted responsibly when having children and have taken care of them and still are. I could go on and on forever. Pat sent information to our representatives in hopes of getting somewhere. Not only for us but for other families like us. We can not be the only ones caught in this gray area. And sadly you would never know it existed unless you have a medically complex child that requires extensive amounts of care. You dont see very many children with special needs in comparison to normal kids. Why would they not help the small percent of families with children like this instead of letting it get to be detremental to an entire family.
In lieu of all of these challenges Megan is doing good as far as getting stronger. She is having seizures again and Tuesday morning we are going to have an EEG to see what is going on. I am scared that the spasms are back. I cried amost all night on Wednesday night thinking of all the complications that can still come from them. She is really looking better and using her hands to explore toys which she has not done in sooooo long - since last summer. She is smiling and interacting a lot more and cries a whole lot less. Her lungs are strong and we are making her muscles stronger to work towards getting off this vent soon.
I have to go look at minivans to make transport easier with Meg. The Expedition is too high and hard to get her in and out of it and lifting the wheelchair in and out. Lower minivan should make it easier. I said I would never have a minivan, but once again life has proved to never say never! We looked into the converted minivans with the ramp and the lowered floor to make transport easy but they are so insanely priced. A used one is about 40,000. A new one is over 50,000. That is crazy!!!! And you lose so much seating... where are our other kids supposed to fit???? It is not only Megans vehicle, it has to transport a family!
It has been a long time since I have written so I am sure I am blabbering and am all over the place. Too many thoughts to write them all at once. I am started to confuse myself.
We have had great meals delivered every Monday and Wednesday night from families in our community which have helped out a lot. It has made it so we can have dinner together at least 2 nights a week. Little things like that help a lot and we have really appreciated it.
Our friends and moms have been great as usual. Thank God for them. I dont think we could make it without them - I know we couldn't. My mom went to help her boyfriend get through his chemo and radiation and I miss her a lot. It has only been 4 days and she will be gone about a month. Wow - going to be a long month for me. She helps my house run these days and is good company for me. She also tolerates me with all of the emotional ups and downs and understands why I am having them. Nobody knows you like your mommy even when you are a grown up. I hope I am as good a mom to my kids as she has been and still is to me.

Busy day

Yesterday we had our first check ups since we left the hospital. GI and Neurology. GI was necessary because her belly has been upside down since United Health Care decided that they dont cover Prevacid anymore for her - I can get it but at $300 a month. We tried Zegerid which is supposed to be equivalent to it. Not working. She has been throwing up her feeds periodically and I am having to run her feeding pump so slow - thankfully she has some "extra weight" from the steroids that still is shedding but she needs more nutrition. The GI Doctor told me that health plan will cover the compounded form of Prevacid, which is so silly because it costs more to do that than just give the solutabs!!! Whatever - they make no sense. Today I will hunt for a local compounding pharmacy and get it done. Neurology appt proved to be reassuring to me. Another sign that we did the right thing. Her normal neuro did not see her @ the hospital - it was an associate. Her MRI did not look good - the brain looked smaller - the space between the skull and the brain was larger than a year ago and it showed that her white matter had shrunken. As it was told to me by one of the internists - her brain looked like an 80 something year old brain - her brain reached its 80's. Another Dr. said she could have possible had a few weeks - 6 months from looking at the MRI - another said her brain did not know what to do anymore in terms of controlling basic instinctive functions. Well, her Dr. said that the MRI is just a picture - we need to look at her and what she can do and that steroids can make the brain seem smaller and shrunken - she was still ON steroids at the time of the MRI. I know he said can, but that is a huge factor in making life decisions. I felt very positive about doing the trach/vent once again. She still is doing awesome. Has not required oxygen once - setting it off because she is redirecting the air and is breathing through her nose which the trach is supposed to bypass that part. She is learning how to make all kinds of noises too. They are quite interesting - a little scary maybe - LOL!!!! We have vent clinic next Wednesday and I expect they will ween some settings so she can do more on her own. If we keep going at that rate, we can get off this thing.

Did I mention that I got all her records from this past stay and the one before when we were there in January and I almost fell off the chair when I read the reports from January. The ER did an XRay on her chest for her heart it showed that she had pulmonary edema, pneumonia in both lungs and called for pulmonary care. I had kept saying I heard her gurgling and she would not drink her bottle or take her pacifier (it is in the reports). The resident told me that the chest x ray was clear and maybe we should do a swallow study to see if she is unable to swallow. I refused the swallow study because she was still eating her meals by mouth at that time. Apparently she had pneumonia in January along with the complications from the ACTH and the focus was so much on neurology and cardiology that somehow the chest and the ER report did not get taken into account. So basically Megan's ordeal was avoidable if she would have been treated in January. Untreated pneumonia - uh anyone would have problems, dont you think. I thought to myself I cant imagine if we would have decided to not trach her and let her go peacefully in the garden(one doc suggestion) and then I would have read those reports. I would have felt like I killed my daughter. I could not imagine how I would be able to live with myself for not reading reports first. Confirmation to follow my gut - always. And read everything and ask to see EVERYTHING even more than we did no matter who you might piss off.

Today we are having a birthday party for Ryan. He will be 7 on Thursday. Can't believe how big he is. He was just my little baby too. He is still the best snuggle buddy ever and we make that part of our day every day. We are just having his best little friends that he plays with on a regular basis - none of the big party where you invite the whole class. It is 90 degrees out so we are having a little pool party. Meg might have to sport a bathing suit!!!

True Words

Our cousin forwarded this and Pat thought it perfect, as I did too:

Being happy doesn't mean everything's perfect. It means you've decided to see beyond the imperfections! God didn't promise days without pain, l laughter without sorrow, sun without rain, but HE did promise strength for the day, comfort for the tears & light for the way.

We have been home two weeks tomorrow and Megan is really doing well. She looks good and has been acting more like "Megan". Getting lots of flirty little smiles and she has been giving Daddy those special little fluttery eyes that she does. I dont think Megan suffered any setbacks that she cant overcome at this point now that I am seeing her healing. I think if we can get her weaned off the vent she will be able to make some positive strides forward and live a little bit. Seizure activity has been non-existent from what we can visually see. Her belly is giving her some challenges, but I think we can manage that too!!

Discharge plans

So it has been 12 days since Megan got her trach. The surgery went well and she is healing up nicely. Six days after the procedure they did the first trach change which was last Monday and from that point on it has been learning and adapting for us. It is not half as scary as I thought, although it is not ideal of course. She was taken off of the hospital ventilator last week also and put onto the home ventilator and she adapted great. She has actually been on room air since last week and has not required any additional oxygen, just the ventilator which is something I really did not even know you could do. It does not mean she will not require oxygen, but it can fluctuate according to her needs. The first step is to adapt her to this and then hopefully we can get her to be off all equipment during the day and just use the ventilator/oxygen at night and from there maybe get off all of it. Shoot for the stars!!! She is looking better and is having periods of waking and interacting but she has been sleeping a lot. I think she is in hospital mode right now and we will see more of Meg once we get home. It is amazing how the hospital itself affects people. Today is Easter and it was definitely different. I made a ham and a pound cake and the boys and I packed it up and took it to the hospital and the five of us had Easter dinner together in Meg;s room. It did not matter where we had it as long as we did it together. That is the important part. We are planned for discharge on Tuesday as long as everything goes according to schedule. United Healthcare has to approve the 30 days of overnight nursing and the DME has to get us all of our equipment. They called me Friday am to tell me that I only have a 2,500 DME limit per year on the policy and the trach/vent/oxygen and supplies are going to eat that up in a couple of months. It was like they were checking to see if I wanted to get the stuff. How stupid - of course I do. We are taking Megan home and the rest will work out and we will take it day by day. I go to SSI on Monday the 20th to see if we qualify for any medical benefits secondary to our private insurance due to the medical requirements and additional care the vent takes. I am told that we do and it does not matter about assets and income and that it is based on medical necessity and care now rather than those things. We will see......I hope so because Megan will not be able to be left with anyone unless they have experience with trach/vent care. I also can not drive alone with her anymore in case of the vent. Two people from now on so unless I have someone I cant go anywhere that requires driving. Big changes, but I am not complaining. Having Megan is worth all of the additional changes and adaptations. She kissed me back tonight when I was bathing her and was getting pretty feisty about her spa treatment and it was the best feeling. She tired quickly, but there was a glimpse of my little girl!!!! Looking forward to going home on Tuesday but I really am going to miss some of the nurses and respiratory therapists here. This is our 8th week here and I am attached to them. It is the first time I've ever experienced that I am going to miss anyone from a hospital stay. Having such great people here has made this so much easier to do. As far as hospitals go I would give this a five star rating - I wish I did not have the experience to know the difference, but since I do I would recommend coming here with your children for anything serious.

Toes and stuff

Rachelle had a great idea on Friday - to polish Meg's toenails. She had never had her toes done before. Here is the finished product. Sexy stuff, huh??? Good idea Rachelle. Mommy loves to polish toenails.

The Wait

So it is Monday - and we still dont have the trach in, but we are scheduled for Wednesday. The attending doctor that came on last week wanted to be sure that all her vitals were in check, which I understand, and waiting for that meant the next surgery day was this Wednesday. Surgery does not happen every day - a few days a week unless it is an emergency procedure. He also wanted to make sure we understood what a trach was and that we were on the same page. While I do and we are I really did not need to go down the same path I just agonized over the entire last week. I was a complete disaster again last Wednesday and felt like I was hungover once again. I am more reassured every day that we made the right choice though because Megans vitals are PERFECT - meaning her brain is controlling these things. Breathing not yet, but she has overall general weakness that we have to overcome. Slow and steady wins the race! There have also been a couple of people who have told me some things that have really meant a lot to me in terms of putting this into more perspective too. The pastor here told me that in reading the blog he thought of the shephard who had 100 sheep and one got lost so he left the flock to find the one - leaving the other 99 behind for this one lost sheep. That is Megan - my lost sheep. It makes sense. Also, Maria, a friend who is in Orlando had one of her associates stop by to visit us and simply put she said that time is a luxury for us and why not take that luxury. Those were not her exact words, but they make sense also. We can never have enough time with out kids and sadly we dont always realize it until you think time might be out and then it truly is a luxury, not a given. And Megan is entitled to more time - after all - who has fought harder than her to be here? She has done all the work - I have just been the coach. This is one luxury I will not deny our family. We all love her so much and each and every one of us is willing to sacrifice ourselves for her. Isnt that what family is all about? Unconditional, selfless love. As a mother I have always known I have this in me but to KNOW that James and Ryan have it also is something to be proud of. They are great little men already and like I have said before - will be the best husbands and fathers because of this. They also have an awesome role model - Pat is a great daddy and husband.

Moving Forward

Friday and Saturday night with Megan. I woke up in Ryan's bed with a headache like I had been out on the town all night. We know that did not happen! Ryan was crying on Saturday afternoon about his ear and I spent a couple of hours at the doctor with him for inner ear infection - yes, the doctors office because I dont see enough to get my fill!!! Saturday evening was cuddling Ryan, which I love anyway. James was busy doing things with his friends - they went to a wrestling match. He had fun which is good and he needs to do that, but I wish he would have been home a little more, but it is okay. Pat came home on Sunday around 11 from spending Friday and Sat night with Megan. I had spoken with Maria, a friend of mine who is a physician and got her perspective as a friend, mother and doctor who also knows the dynamics of my family up close and personal. It really helped me too. It confirmed my gut to go ahead and get the trach done. I told Pat that is what I want to do because I will NEVER live with myself if I am questioning the decision not to. He was supportive and understood that a decision like that could literally destroy me, us, our family as I would not be able to get over it. He also did not cross that line either. I have regrouped and have a plan to go on - how well it works time will tell but right now the plan is to get the trach, after a week ENT will change it for the first time and then we will remain inpatient in ICU and learn it all from A-Z - alarms,suction, vent settings, collars, bagging her (sounds funny) - I am not afraid of any of this technical stuff. I feel like it will become part of the routine just like everything elso has. If all goes well after surgery and "training" then we can come home on a portable vent and start therapies at home. I am going to get some sort of housekeeping set up for like 3x weekly to just do general straighten up, vacuuming, etc and deep clean every 2 weeks so that I dont spend my time cleaning when I do have extra time. I want to spend it with the kids and Pat. I dont know what type of nursing assistance I will go home with other than short check up visits, but I am going to hire private duty nursing for overnight in any event so that I can sleep and be rested to do what has to be done during the day. I am not going to worry about the rest of it. Nothing is more important than living every day as happily as possible for all of us. I dont know how much time Megan does or does not have, but whatever she has I want to enjoy with her, James, Ryan, Pat and Sugar and the rest of our family and friends. We dont need to travel to fancy places or go on big vacations - we can do it all pretty much where we are. No pressure. I also am going to set boundaries for myself for what I can physically accomplish in a day as well as for the rest of us. Life wont end if something does not happen, well, in most cases it wont! As it sits right now Megan is scheduled for tomorrow or Thursday to get the surgery. I cant wait to kiss her all up on her face where it has been blocked for over a month. I feel good about our decision and choices for all of us and think it is the best way to know what is what. Her blood pressure and glucose have normalized and her heart rate is only slightly elevated along with her temp, but I mean slightly. So her body is working its own stuff - I knew it could!!!! She is much stronger and moving her hands and arms and starting to move those little feet too!

Is this really happening?

This past Tuesday-the 17th-they actually extubated Megan and within minutes her Co2 was too high and she was turning gray so they immediately reintubated. The doctor talked to us about our two options - a tracheostomy or extubating and letting her go. I have never cried so much as I have over the last 5 days. I came home to see the boys last night & as much as I miss them I really did not want to come home. I pulled up in the driveway and cried so hard because I am here without Megan. I cried on her bed in her room for the longest time while holding her little dress that she wore in my hand to smell her. Looking at her pictures in her room is too hard. I am so afraid and dont know how I would survive without her. I cant even explain how deeply my love and attachment for her goes. Her MRI showed decreased white matter in the brain and there is a space between her brain and the actual skull. The neuro says it is most likely atrophy/wasting which would be consistent with her disease and IF it is she PROBABLY only has weeks or months at this point. But nobody can tell me it definitely is or anything for certain. How do I know who she is yet when she still has a tube down her throat keeping her flat on her back and has gotten three infections in a row and is still on methadone wean and steroid weans. I am not ready for Megan to leave me and go to heaven. It probably sounds selfish of me, but I dont know that she is ready to leave or if she is just still so wacked out from meds and sickness. A normal child would need a long recovery and she takes longer than a normal child. I know this. My gut and my heart say to keep her here and see what she can do. If it truly is nearing the end for her then surely there will be nothing for her to gain, but I would always question what if??? Maybe I am being selfish but I cant help it. It hurts so much to think about not having her. I am in such a bad place with what has happened in a month. Werent we supposed to get the tube out in a day or two and then come home in a week? What happened to that? They also did an EEG overnight on Thursday until Friday morning. Thursday she was running 102-103 fevers and at 2:30 am she actually chewed a hole through her tube and had to get sedated so they could extubate and reintubate a new tube. The neurologist said that she saw "decreased activity" from the EEG a few weeks ago in the cortical region. I am not a dr., but isnt the point of sedatives to alter your mind? And activity level? Would that not affect the EEG. She says no, but I have had another neuro tell me yes. Also we have known for over a year Megans brain is not normal and she has less white matter to it. I was not expecting a normal MRI by any means but to hear that she MIGHT be having disease progression. How do I even look at the option of letting her go with the words, if, maybe, probably. Pat wants her to come home breathing on her own. That is impossible. The choices are to not bring her home at all (not really a choice for me right now) or get the trach and work on getting her weaned down from that. They are all not permanent. The doctors think it might be her brain not talking to her body to breathe - that the thermostat is breaking. Or she is too weak to breathe deeply enough - she has been laying down since about the middle of January now mostly and definitely for over a month now. She got pneumonia that caused respiratory failure - where did the brain thing pop in? Her breathing was fine until the pneumonia. I am so confused. Anyone who may read this who has any knowledge or experience in this area, please fill me in!!!!
Megan did smile and cry yesterday - both signs of a person being in there to me. Could have done w/out the crying, but I will take it - it is an emotion that she was feeling. I hate feeling so sad and helpless. Sad for Megan, sad for the boys, sad for Pat, sad for the grandparents and sad, sad, sad for me too. My heart really does hurt. When I cry I feel like hyperventilating and vomiting at the same time. A pastor told me that parents know when it is time to let go, they just know. Well I dont think it is time, because I dont know. I wish Megan understood how I felt about her. I know she used to, but I am doubting it now and it makes me cry to think about that too. I am her mommy!!!! It is so abnormal to question whether she knows who I am????? Have to get that tube out and get her out of that bed. Need to talk to Pat and get on the same page. He is sad, sad, sad too.

Still here

Today is Monday and we have started another week. Every day has brought new medical trials for Megan. If it is not her heart and blood pressure is is her metabolic acids, potassium or ph levels. On Saturday her glucose went out of control and on Sunday morning it was in the 700's. Yes - the 700's. Why? That was the mystery over the weekend. She has been pumped full of insulin to get it down and it might be due to one of the particular steroids she is on - she is on at least 4 I can think of . Apparently she was supposed to get weaned from it last week and it did not happen. The resident misunderstood the orders and actually increased it. Big mistake - apparently the attending physician made the order that the resident screwed up and there is no system to make sure this does not happen until something like this or worse happens. She is also on high blood pressure meds now and heart meds. She currently has 3 IV's and some have multiple ports attached to them to dose many meds at one time. These are in addition to the meds going through the GTube all day long. Her fevers are still way out of control and infectious disease took more cultures from the lungs and nose this morning that are getting sent somewhere accross the country to look for rarer virus' that they cant run here. So far we only have positive yeast in the lungs and positive C-Diff bacteria in the stool, but nothing to link directly to the high fevers. She looks really bad today. Her eyelids are swollen and her skin is so pasty.

I downloaded a bunch of baby songs and lullabies onto the MP3 player and brought her little headphones from home and have been playing music for her. We have to turn it up to the loudest volume for her, but she hears it and you can tell she likes it. Her eyes started to move and she was really relaxed. It is one thing she likes that we can do. We have her massager here too. I am going to give her a in the bed duck bath and massage her tonight. Every girl loves to be pampered - even with more wires and tubes than you know what to do with.

Going into her bedroom to get some things is the strangest feeling. I lost it yesterday morning in there. James said he hates the house with us gone and he just wants to hear Megan cry and make some noise. I know how he feels. I just want to take her home and go back to living our life even as up and down as it has been. This place really wears on you. I feel a little clostrophobic. I think Megan looks uncomforatble - even if she is not, lying in bed for weeks on end.

We have had lots of friends and families visit us. Margie, Allison and Bonnie and Rachelle have been on daytime rotations while Kerstin and Arlene are weekend and evening shifts. It has and is great support for me and has helped with time passing for sure. I know that it is really hard for some people to do hospitals in general and I understand that. They are not my favorite places either. I know that everyone is thinking of us in one way or another and if I needed something for any of us I could reach out and ask them. That is special to have that and I am grateful for it.

Dont think we are going to get to try anything this week as far as extubation. I hope and pray it happens, but we just have to wait and see.