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!!!