Long Overdue Update

Since September it has been extremely busy - Megan did have her tonsils out on October 7th. Procedure went great - recovery was rough. Two weeks of being up to suction Megan almost did me in. I was so tired I was crying on her bed and moaning ' I just want to sleep'..... very glad they are out though. They were so infected for so long. Within days Megan looked healthier and more like her old self. By the time her third birthday rolled around on October 17th she was almost all the way healed up. On Oct. 25th there was an awesome birthday party for Megan that raised about 8,000 towards the irrevocable trust fund in her name to help with all of the extra expenses that go with a medically fragile child. Once you turn three the Early Steps/Early Intervention services like therapy are discontinued as they refer you to the public schools for services wile attending an appropriate school to meet your childs needs. In our case, Megan was denied services by the county schools due to her medical needs and the educational relevance of it at this time. I am not surprised, however, it leaves us with the cost for all of ther physical, occupational, speech/oral motor therapy as we have also maxed out our therapy limits under our private insurance. Independent Living arranged for Megan's PT and OT to continue for her with us private paying at the employee rate - I think like $37 hour for OT and $48 hour for PT. She sees both PT and OT 1-2x per week each so this discount is incredible. If it were not for them doing this we simply could not continue with therapy as she needs it even with the fundraiser. We would exhasut it too quickly and then it would defeat the purpose to run out.

It was quite an undertaking but it went off without a hitch. Alison Fernandez spearheaded getting it together and Margie and Joe Ferrantegennaro collected all kinds of goodies and supplies for the event and helped to sponsor it as well. Jimmy Ciacco supplied the beer, Doug Elliott hooked up the shrimp and Jeff Lupton provided hamburgers, hotdogs, sides, condiments, servers, and everything else you can think of that was needed to go along with all of it. Girl Scouts held a bake sale and had the big slide and bounce house donated by a family member. Bay Area Neuro clinic did massages and the proceeds also went to Megan. Merlin Entertainment brought the music and the Rhino. Everyone volunteered and cooked. Cant say thank you enough to everyone. We are very lucky to have such great friends and family behind us.

Megan got her first congestion in her chest since she got the trach. She is still fighting it and it is scary. Congestion can not go to her nose like it does on us anymore since her airway is no longer her mouth and nose - it goes to the chest. Back to breathing treatments through the day and chest pysiotherapy thumping - suctioning. May take her for a chest x ray since bronchitis is going around - pneumonia has crossed my mind several times. It started 10 days ago. No fever, but she never had a fever when she had viral pneumonia in January. Hoping that being on top of it so early it does not or has not turned into more. Her chest is a little tight to me. We started Zithromax yesterday since she had not cleared up as much as she should have.

And in the middle of the chest cold we finally started the Ketogenic Diet. She is responding well to the formula and feeds. Her blood sugar and ketones are good(checking each 2x daily). Seizure activity is dramatically reduced. We started on Sunday at 10pm by fasting. Arrived at the hospital Monday afternoon and Tuesday around noon she started feeds at 1/3 strength. On Tuesday we only had 4 seizures that I saw, 10 on Wednesday, 5 Thursday, 4 Friday and 4 today so far at 9 p.m. I almost feel like it is too good to be true because she has blown through so many meds and is currently on Keppra, Banzel, Clonopan and recently weaned off Topomax after two years and was having uncountable seizures - some days all day every 5-10 minutes and all through the night too. The mix of her seizures is also out of control. Absence, Tonic, Nystagmus, Myclonic Jerks and or Infantile Spasms, Complex Partial - those are what I can see and identify - there are things that I am not sure about altogether - could be or maybe something else? She has such mixed tone - floppy in the head and trunk, stiff in the extremities - stiff as a board when she wants to be. Like she will crack in half if you try to loosen her up. I am hopeful we will see good things with this for Meg. If I can just get all of her crying figured out - maybe it is from the seizures - it started about a month ago and is really bad. Mostly all day and her dystonia/writhing movements are constant when she is crying. Seems painful to move all that much with no purpose. Heartbreaking. This is the stuff that breaks me down and gets me depressed. I dont know what to do or how to help her. It makes me so sad, angry, disgusted -hopeless - feelings I dont have room to feel and do a good job taking care of her. I dont want the boys to see that either and it is hard to conceal. It eats me up. It is hard to balance the rest of my life when I feel like that and it is unfair to Ryan & James especially. I feel detached in some strange way like I am shut off somewhere and I dont want to be. I keep thinking that God has to hear her cry and me cry, and Pat and James and Ryan's issues too and help Megan most of all which obviously will help all of us. Hate to sound so down when the seizures appear to be improving but her discomfort has been really bad and hard to see. How can she be weaned from the ventilator and looking at getting the trach out by summer, having less seizures, have her infected tonsils out and be crying and in distress all the time now? How can this be? Something has to give. I wish I could, but how.

The boys are hunting until Wednesday which is giving me a lot of quiet time. They will come home for Thanksgiving and hopefully I will have some answer about what hurts her so much and how to help her so it will be a good day for us.

The good, the bad and the ugly...

The good:

James and Ryan are doing good. Posted some pics of them - James after football practice - dirty but I think he looks grown up - and cute. Ryan after his shower - showing off his muscles. Ryan and Meg snuggling together - my snugglebuddy and my snugglebunny. That is their nicknames. I am usually in the middle.....

Meg in therapy with Cindy- her OT - I love the way she is looking at her like "Of course I can do this - did you expect less??"

Megan has continued to spend more time off the vent than on. It is really nice. Makes Meg much more accessible to hold and love. Being off the vent means lots of open suctioning of the trach which has not made travel any easier, but it is a start. I am really proud of her and amazed at how strong she really is.

The bad and the ugly:

Infantile spasms - they are back - and just three days after I postponed the keto diet for her tonsils. They could reverse everything good that has started to happen. I am a mental wreck and can't even think straight. I am at a loss to describe the desperation I feel this weekend. What is next? Next med please... Sent an email out to see about HBOT's effect on IS. I am ready to take her in to the chamber - cant make her seizures worse - they are worse now.

I will call Dr. C tomorrow about vigabatrin and starting it - or clobazam - whichever he thinks is best. We are weaning the Keppra so at least we can get rid of one and then add one. A balance I guess.

Feeling Better

Okay - I am back in the saddle again. Had two great happenings. The first was on Wednesday night - the one shift of nursing we get a week is on Wednesday nights so I can get a nights sleep. Betty, a nurse of 50+ years comes and she is the sweetest, most tender woman with a WHOLE lot of experience and knowledge. I have much respect for her and what she has done and learned in her lifetime. Anyway, I have been thinking that Megan bubbling out of her nose and mouth like a dog is because she is pushing the secretions from her chest out that way (which she is not supposed to be able to d0....). I notice when she is off the vent it stops happening so it only makes sense. I was sharing with Betty and she agreed that this very well could be. Megan would not settle down for anything - racing heart, agitation, the whole thing. I took her off the vent and it was magical how calm she became. Her 02 sat rate was at 98 and her heart rate a nice even 100. She fell asleep and we left her just this way - off the vent, suctioning as needed - about every 10-15 minutes. She stayed that way the whole night and slept like an angel. Betty was delighted to do this all night, which she could have said no to. She sat at her bedside all night long. She said to me the next morning - why does she have a vent?? Why does she have a trach? I told her she got the trach for the vent because the Dr.'s said she could not breathe on her own and the chances of her ever again were slim. She told me of how in her experience kids that can do this and go all night which is the most vulnerable time, are certainly not vent dependent.



It was a reassurance of Meg being strong in her lungs that I needed. The best part is she stayed off the vent for a total of 22 hours and did great. I had to put her back on last night to sleep because I could not keep my eyes open to watch her. It was a safety issue. I need to be able to respond and suction and I certainly could not do that with toothpicks in my eyelids.



We went to see a new ENT during this and he was awesome. Wish I would have seen him 2 1/2 years ago. So smart!!!!! Worries about the whole child and knows so much about diseases, diet, allergies - you name it. He was kind and very willing to spend as much time as he or we needed to figure things out. He assessed Meg's tonsils and said that it is viral, HSV virus living in the tonsils most likely and they need to come out. The tonsils started July 17th - it is September already. October 7th is the day and I cant wait. I have thought this since she was less than a year old getting tonsil infections every month to the day - exactly. As far as the vent/trach stuff he said he thinks she does not need either for much longer and he told me that she was fighting the vent with her natural breathing pattern and pushing the mucous out the nose and mouth. Another way that I was reassured.



I thanked God for giving me the signs I was so desperately in need of.



Alas, everything cant end good - just g0t a phone call with some more denial for nursing. Although we were approached by Hospice Palliative Care from the article in the paper about offering some nursing overnight shifts for Megan, they assessed her this morning for about 3 hours here and had a meeting about it after and it was decided that she does not qualify after all because of the vent. A vent is a life prolonging device and hospice is geared to comfort care and quality of life for life limiting diseases, not for qualify of life if any machinery is used other than feeding tubes, BIPAP ,CPAP - even if she is weaning off and the future looks to hold no vent for her. When the vent is gone, we can reapply. Good effort...another crack we fall into. We must be the CRACK family!!!!



Am I disappointed to know sleep is not in the future? Yes, but there is nothing I can do about it today.

Bad Days

I am having a hard time the past couple of days with how things are for Megan. There were a bunch of videos that had become damaged in my laptop and I could not recover. I had searched for ways to recover them and could not. I spent hours on the phone with Flip support - you name it. They were gone. Somehow they amazingly reappeared and I sat and viewed them. It was so painful to watch video of Megan up to Jan 09 and then look at her now - how could this have happened? When did she deteriorate to this point. It happened in front of my eyes and somehow it slipped right past me, or I have been too consumed to fully see it. I dont know but it hurts. I want her to hug me and cuddle me and she cant even do that anymore - not with this monstrosity coming out of her throat with all the tubes. I am not big on the boo-hoo card but sometimes reality smacks you right between the eyes and it is a jolt to the system. I guess that is what I feel. I am also so worn out from all the people looking for information from me - I barely have time to shower each day. How do I explain that to people without them thinking I am being over-dramatic or looking for sympathy? I want to stop answering the phone.

Loss of a child with Mito

This is straight off the blog from another parent that has two kids, one with Mito Encephelopathy and one with Autism. This literally took the breath out of my body when I read it. The pain I felt for this family was unreal. I am still crying. Please pray for this family. Thanks for posting this Colleen.

Today my heart is breaking for one of the familys that I have been following the past year. They had two little girls and expecting a third. Their little one Marie had a type of mito, called Leighs disease. I have been following their joys and struggles. Yesterday I witnessed both of these. Thursday they welcomed a new baby girl into their family, Sarah. Sarah met her big sisters that night. Sadly Friday morning, Marie made her journey home, carried by Jesus. She passed away in her sleep. My heart is just aching for them. Please send some prayers for their family!
created with love by Colleen at 8/29/2009 07:58:00 AM

Health Care

This is an email that Pat sent in response to something he received. I thought it was something worth sharing. Feel free to do the same if you like.

The health care issues at hand have gotten convoluted. We should not get so bogged down in the finger pointing, but focus on simplicity. Just as this country was founded and has evolved into the greatest in the world everyone has actually gotten too far ahead of themselves. Earning, accountability, repercussions and risk have been left to the way side as merely expected actions. In turn, those that take these actions, abide by the rules, and are productive in our society carry this burden everyday to provide for those that are less fortunate and those that do nothing. It is horrible that there are individuals that know someone will provide for them and they think it is their right of passage to get a hand out. I am all for helping those that have fallen on hard times, disabled, retired, etc., but to keep enabling our society is a crime in itself. This is exactly where this health care reform is headed. It’s just down right scary. In my specific situation with my daughter it is perplexing that my government thinks it’s okay for my wife to loose sleep, be a full-time caregiver & nurse, surrender time with her other children, become sequestered to the house, socially reclusive with our other children’s education and activities, a shower and brushing her teeth before noon is a luxury, pay a private caregiver to make doctor visits, and that a visit to the emergency room with Megan is considered a date for us. This is all because my income doesn’t make my daughter quality for the benefits I work so hard to provide others. Why are those that qualify for benefits any better than my wife and I? It’s not okay for them to loose sleep (so give them a nurse), miss spending time with their other children (so give them a nurse), go shopping (so give them a nurse), need to be hospitalized (so provide them insurance, no payment necessary, no haggling with the insurance company) or quit their job (so provide them funding and they don’t have to work), but it is expected of us? It is absolutely wrong that we are being treated like this when we are working to support these other folks that “qualify”. It’s been an adage within our society for many years that it’s more financially rewarding to stay home and collect a check than to get a job. It’s time for the party to be over. Our founding fathers would turn over in their grave. If I am correct the “us” makes up about 90% of the population. It’s pretty simple. When we colonized and built this country everyone worked in some capacity. If they didn’t work, then they starved. No one starved, because they knew they had to work; either with everyone or on their own. There were no hand outs and it was frowned upon not to be a productive individual. Why is today any different? I have a problem with giving, providing and rewarding those that do not contribute and penalizing those that do contribute everyday, every hour and every minute. My particular situation is plainly a text book example of why our system does not work. My government has failed me. My daughter is broken. It is not her fault, nor mine. If she could choose I guarantee she would like to be able to walk, talk, hear, see and be totally cognitive of her surroundings to enable her to excel in society. Instead, she will never run on a playground, drink from a cup, eat at the dinner table, say a prayer, ride a bike, be a cheerleader, read a book, graduate, drive a car, work, or walk down the aisle with me by her side. This is the question, “If we cannot provide the necessities to the producers of this country and we cannot adequately administer our current government programs (SS and Medicare), then why should we GIVE anyone anything when we cannot afford what we already have?” It sounds like the housing crisis, when everyone took out equity lines and lived beyond their means. I know you understand all of this, but it is unconscionable that our nation continues down this path. We have to correct the current system first. Feel free to pass it on

Tampa Trib Article

I just added the Tampa Trib/TBO article that ran yesterday. While it is okay, it is inaccurate in some of the items - such as overnight nursing only being needed and the cost @ 300,000. The need is 24 hrs and @ 24 hours/365 days a year it is 300,000 + and for 12 hours per day/365 days a year it is 150,000 +. Some people were brutal in posting comments but I do realize that this is an article, not the whole story and not all that Megan is. Megan has not always been like this and if not for medical side effects, some screw ups she would not be in this position. On the other hand, these devices have also saved her life from dying from the medical mishaps. Yes - she has a genetic metabolic, nuerological disease. Her seizures are bad - there have been too many physcians who are much too passive and ALLOWED her seizures to escalate while experimenting with medications to try and fix them. Most write these kids off and dont try hard enough. Parents with children like Megan understand that there are some things that can help and unless you scratch and fight it does not happen. Our point was to be that there are children less severely affected than Megan, who receive "free nursing" because they qualify financially. Because we are not indogent we dont qualify. Our private insurance does not cover. I cant buy the coverage, or else I would!!! Believe me, I would! Why does the child from the family that is indogent deserve a better quality than my daughter - the daughter of a family who helps to provide for the indogent family. They get to sleep because they have a nurse. Then in the morning they get to get up and do whatever - because a new nurse comes. I do not want someone else to "take care" of my child. I am on it - but I do need to sleep so that I am able to . I also need to be able to wean her from this ventilator which will require supervision so she can have a better quality of life. That is the goal here - it is not to torture her. And she does know she is loved, and she does love us.

Giving all for Megan

Giving all for Megan

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Overdue update

Another month has gone by and a lot has happened. Meg has been sick for the entire month of August with a throat infection that will not go away. The omnicef started to work and then the puss returned within three days of the last dose. She then had Rocephin shots three days in a row which cleared up the tonsils again - for one week exactly and then it was raging again. We then started cleomycin which once again cleared up the tonsils until the 9th day of treatment(10 total) which was this past Monday. We stopped that one and the Dr. switched her to Ciproflaxin and Diflucan thinking that it is fungal or yeast and/or a very resistant bacteria combo and we should try to get it with these two. Maybe psuedomonas? Commin in kids with trachs. It responds to the antibiotics and then resists it. I hope that we dont have to go inpatient to treat this one. Being sick is a big setback for her. All that rolling has come to a halt. We also started her on a new seizure med - rufinamide which was approved in the U.S. in November of 08 and it just being prescribed to patients this past spring. I have seen less seizures since she has gotten to full strength. I could not count the number in a day anymore and today I have seen about 8. She will have more when her body is fighting and illness too, so maybe it is working better than I see right now. The ketogenic diet is also planned for September still. Pat and I have met with Senator Victor Crist last week to talk about the gaps in health care for Megan and the devastating effects it has on everyone and how Megan deserves the same medical attention that someone who does not have insurance or cant afford insurance gets. Why does she not qualify - it should be a quality of life issue.



Rachelle also left for grad school - we miss her a lot. She became a normal fixture and part of every day around here. Meg sure does love her too. We will be happy to see her when she visits us - RIGHT RACHELLE? WHEN YOU VISIT US???????



Kaela(Rachelle's old roommate) started helping out this past Monday and she is training on all Meg's stuff. So far so good.



Going to go eat dinner right now - blog later.



Article in Tampa Tribune today - will post it in a little while

July has gone by very quickly. Cant believe it is the 29th already. Still working on many of the same issues but making a little headway which feels pretty good. My mountain of paperwork has been reduced to just a laundry basket full. James is getting ready to start football next week so that really takes a big committment from us as there is practice 3 nights a week and games on Saturday at different places. It is a lot of fun to watch them play and I am planning on trying to take some of the games this year. I found these cooling cloths called Frogg Toggs that you wet and then they keep you cool for a couple of hours that I think will really help her to be outside. Heat intolerance is part of her condition and she just shuts down so if these work it will give her a lot more freedom. We do live in Florida so getting away from the heat is not an option.

We received some information from a geneticist in Atlanta that we have been working with and she is running some additional studies on Megan. Seems that her mitochondria are damaged but her thoughts were that it did not start there and the mitochondrial dysfunction is from a gene with a transport or processing issue, better known in the medical world as diseases that are inborn errors of metabolism. She has them pretty much narrowed down to a few. The prognosis is not better or different than it being the mitochondrial dysfunction primarily. The ones with testing being run are also not curable and are progressive and degenerative. Her presentation of symptoms is classic for the ones the geneticist discussed with me and I actually had them printed in my notebook of "stuff" that I think is relative. Still like a punch in the face though. Always holding out for the one Dr. to say "Good news - it is not what we thought and it is this and we have a cure." That would be part of the Miracle that I pray God will grant Megan. I dont care how it comes about - a scenario like that or any other - we'll take it!!!

Of the few I am hoping that if it is any of them it is the Pyruvate Dehydrogenase Deficiency. The others are leukodystrophy and liposomal storage diseases. All of them are metabolic diseases and a couple of them actually are classified under the United Mitochondrial Disease Umbrella. I was familiar with them when she spoke with me about them because I have read and researched them so many times. She was able to tell me that it was autosomal recessive meaning that Pat and I both carry a defective copy of the same gene and that the chances of any of our children inheriting the disease had only a 25% chance. The chances of us both having the same bad copy were incredibly low. We had a better chance at winning the lottery. The boys can both be carriers but they would have to meet someone with the same bad copy and then would have the same odds.

Meg was doing good the past couple of weeks and actually rolled over about 6 times by herself - in one day! She was showing off. She was so happy and smiling that she did it. Both her therapist and me were so excited when she did it!!! We have great therapists. They really love Meg.

She is on Diflucan right now for yeast overgrowth in her gut and mouth which is another little setback as it is killing her stomach. I have not slept in 2 nights (neither has Meg) and am really tired. Think I have to cancel therapy for today. She is not up for it and neither am I. My eyes are crossing right now as I am fighting to hold them open. Ryan has been awake since the crack of dawn and Pat left for Atlanta for business around 5 am so the day has been started for a while here already. James is sleeping - seems like this summer the sleep monster invaded his body!

Last thing - still waiting on the Ketogenic Diet. Another Mom told me about the Modified Atkins for seizures too. Contacted the Dr. at Johns Hopkins who is the brains behind them and they are having a study coming up that I might put Meg into for the seizures - if we can help with those more it could help to slow down the progression of her disease and give her a better quality of life overall.

Posts

Wow. I just figured out that there are a bunch of posts in the blog that I could not see(I think I have mentioned before that I am an idiot with this kind of stuff sometimes). I have read each one and am speechless with the love and compassion in each one of them. Thank you to everyone for all of your thoughts, wishes and prayers. I know they have helped.

My gratitude is endless! I know if Megan understood, hers would be too.

Happy 4th of July

Can't believe it is July 1st already. I love the 4th of July. I think it is my favorite holiday besides Christmas. Aunt Wendy sent Meg a 4th of July dress in January that I cant wait for her to wear. When we were deciding if we should proceed with the Trach for Megan I remember being home in her room and holding her dress and thinking - she has to wear this dress on the 4th of July. As strange as it sounds it was a turning point for me in the decision process because I could not imagine her not being with us on the 4th. So the dress is more than just a dress for me at this point and so is the 4th of July.

Megan had her central broviak line removed over this past weekend slightly ahead of the scheduled date of July 2nd. She developed infection in the lines that had to be treated right away and removal right away so it would not turn into sepsis. Those lines are scary things. They dont belong in our bodies. I was so careful with it and she still managed to get infected. I think she did it on purpose so she could go in the pool again. It is a little bit more freedom for us. They got in the way A LOT. Her chest looks so bare now too.

Going back to the PICU was scary. I was afraid Megan would get a secondary infection and would get sick. It was nice that we had a private room so we did not have to share germs and it was really good to see some of the nurses that I became so bonded too. I have to make time to be able to stay in touch.

Summer is rolling by and we are still just taking it day by day. I am sad that we are not going away with Jimmy and Wendy this year, but we did not know how or what was going to be going on this summer. Still dont really!

Megan has ongoing seizure issues and it sounds like she is going to start the Ketogenic Diet. It can be helpful and certainly should have less side effects than ACTH. Have to go do some reading on it now.

Happy 4th of July!!

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.

Still in PICU

It is March 3 now and Megan is still in the ICU and is STILL on the vent. We are now 12 days on this thing and it is really driving me crazy. Have had lots of time to think - ponder - whatever you want to call it. I have accepted that I can not make anything happen faster or the way I think or want it. Megan can come off when she is ready and that is it. Pat called Pastor Jerry and he and his wife Susan came up to the hospital to talk with us and to see Megan. It really gave Pat and I some much needed perspective. I realized that I had become petrified that god wanted to take Megan and had been begging when I prayed that he would leave her here with me to care for her and often wondered why He made her like this and if it was because a lesson was to be taught or punishment for something in our past??? It was often on my mind and was really upsetting to me. Hearing that God does not want to rip her from me and that this was not His plan for her was definitely an awakening for me. I was like ' that's right, God is good - he does not punish us and does not want us to be sick - any of us. It really put it back into perspective for me and made me feel good about those things. Strange how things can get out of perspective even though you know the right way to think.

All Childrens nurses are really great and I feel really comforatble here - even though my bed is a chair. A very hard ugly chair, but better than nothing. The doctor was just in and the pain medication is going to be weaned starting today and she will get methadone to help with it. The goal is to get her off sedation and strong enough to be extubated. Not tomorrow, maybe the next day.... as long as everything stays good.

Another hospital stay

We are back in the hospital!!! After daily trips to the doctors for "pneumonia", rocepherin shots, oral antibiotics, breathing treaments and one trip to the ER earlier in the week. Thursday evening Meg's breathing became even more strained and I was really worried. I was going back and forth with myself about going to the ER and kept thinking that I was being hysterical and getting worked up and then next thinking no I am not, she is really doing worse. I felt crazy. Around 11 pm I gave her another breathing treatment and she was so stressed during it. About 45 minutes later we had greyish lips. Pat called 911 while I ran Meg into our bedroom and put an oxygen mask over her face and started running the oxygen concentrator. Her lips looked a little better pretty quickly but her hands and feet were also turning blue. EMT's came and her oxygen level was in the 50's!!! That is really critical. Anything under 90 is not good. She was rushed into nearest ER (not a ped ER) and they started doing their thing. They contacted All Childrens and gave them her stats - her carbon dioxide level was at 85 - also really bad. Normal is around 35-40. It was probably one of the worst nights of my life so far. Megan was intubated and put on a vent. It has been her saving grace that she has not had any respiratory issues. I felt like the world was closing in on and I was not sure that I could handle it. I felt like all the strength I have been able to muster all along was just gone and like I just wanted to scream at the top of my voice and run away. Obviously this was not an option so here we are. This morning Megans IV became blocked and her pain meds went in to the tissue in her arm instead of the vein. Aside from looking like Popeye in one arm and it hurting her, she had not been receiving anything to keep her calm. So this morning when she had tears streaming down her face and was looking at me, all the while her arms strapped down so she does not accidentally extubate the tube down her throat, and there was not a sound that was able to come out - it quickly topped Thursday night for me. I am unable to hold her to comfort her. She is staring at me and crying and gagging on this tube and her wrists are tied down at her sides and Mommy is not picking her up and holding her. Before she could feel better the bad IV had to come out and a new vein had to be found for the new IV and pain meds to start. She is bruised everywhere from failed attempts andthere is one place left on her right foot to try which takes quite some time to get right. She is still crying silently. Needless to say, right after the ordeal was over I left the room and went to the end of the hall and cried on the bench. My whole body felt like it was going to collapse from watching her like this. I dont understand any of this anymore. It is just cruel. I am amazed time and time again at how tough Megan is and what a fighter she is. A normal child would have thrown the towel in by now. God sure does make them out of different cloth altogether. And she is happy just to be loved and held - and manages to smile at us and tries to laugh and play. It also amazes me at how uncomplicated she is and how freely she loves even though she does not understand why Mommy does not rescue her from things like this and I have to stand and watch and tell her it is okay while I rub her head or hold her little bruised bloody hand. It hurts me so bad inside to think that she may be thinking that I neglect her when she is needing me. Today the boys came up. They came in and saw Megan and we pretty quickly went to the cafeteria and ate. No need to stand here and stare at her. I was so happy to see them. I miss them. I miss them even when I am home because I am so busy with everything with Megan. After lunch we went to the playroom and played air hockey, checkers, the piano, dominoes - you name it. Pat and I just hung out with them while Grandma hung out with Megan in the room. I am sure she wanted some time to spend with her granddaughter without having to put on a strong front if I were in the room so I don't get upset. Everybody needs time to cry and I know that being able to touch the person you are crying for can give me more relief sometimes. I am not sure any of this happened, but I am sure that Grandma was sad and that she did shed tears. Later in the day I know my mom did the same. I walked in on it.

I am hoping that tomorrow they might try to exubate the tube so she can get back to breathing on her own. We had to get the " sometimes kids like this go on a vent for support and then become dependent and can not come off.....and then you have to decide if this is the choice you want for your child - artificial breathing or "not". I dont want that, but I dont think I could make that call. I am selfish and I want her to stay with me forever, but I know in my heart that living on a vent is not what I would want for myself and that I dont think it would give her any better quality of life. Actually I think it would make the quality of her life worse. Worse???? I cant imagine. It is far from great now.

Dr here thinks that the underlying cause of the pneumonia is the disease and her muscle weakness affecting proper breathing and building secretions that got infected and too thick for her to clear. Praying we have a successful removal and recovery and can go home sometime next week. We have three more weeks until we are done with the ACTH at this point(which was the cause of the infection to the secretions by the way). I think the devil made ACTH!!! It is bad news.

Triathalon Benefit for Megan

Hello everyone. This email is about a Triathalon(Lance Armstrong Live Strong) that the Girl Scout Troop #758 is involved with to do two things - earn their bronze award and donate proceeds to Megans Trust for her needs. They need everything from sponsors (dont have to be local), volunteers and participants. It is for ages 5-99 so it is a great event for a family also. If you know of anyone who you think might help in any of the three areas I mentioned above, please contact myself or Al Latina listed in the email below. His grandaughter is in the troop working on this event. PLEASE forward this on to anyone in your email contacts that you think could make a difference for both the girl scouts and for Megan. I have attached the flyers for more info and sponsor forms. I know most of you know Megans story, but for anyone who doesn't or for anyone you forward to who does not the web page is www.miracleformegan.com Thanks for all of your help and support.

Home from the hospital

Okay - we are home from the hospital. Went in to the ER on Jan 22 because something was not right - good thing we went. Appears that Megans body could not keep up with the tapering of the ACTH at the recommended rate. Her body did not appear to be making its own adrenal hormone to replaced what we were taking away as it should have been and she was exhibiting heart, respiratory and blood pressure problems. Her heart rate was at 50 - blood pressure and pulse were low too. We also discovered a viral infection through infectious disease doctor that was treated with IV. The neurologists immediately did a CT scan on her looking for a stroke - thankfully it was negative. I am so glad I went with my instincts to take her in to All Childrens. Her normal neuro, the pharmacuetical company and other resources all were dismissive as to what I was explaining to them and acting like it was not heard of - that you could not have withdrawal from the ACTH. I was dead on. Of course you can if your body does not start to make its own - it is the same thing like if a person has the disease where your body does not make its own adrenal hormone. The team @ All Childrens listened to what I thought and confirmed it seemed that way also. Cardiology, infectious disease, nutrition and neurology were all over her. The neuro there started her on Clonopan - 1/2 tablet 2x day in combo with her Topomax and Keppra for better seizure control. We will see. She is definitely in less pain. It is amazing that she is not SCREAMING all day anymore and is not completely contracted and spastic anymore. Actually she is very floppy. I am thinking the Clonopan is having this effect. I wish she had some tone, but better not to be in pain. We were there 8 days and have been home almost a week. I feel like she is safe here at home again. I did not for a long time which was terrible. We have nursing visits 3 x's weekly to check her heart, blood pressure, vitals, etc. I now check her glucose every day and her blood pressure too. She is actually having blood pressure spikes now which is probably another ACTH reaction. I know that it was the only option and if in the position again I would have to do it. Anyway, she is recovering. Slowly. Hopefully after this is all over she will improve. I am just thankful she is still with us. I sat in the hospital and cried at the thought of coming home without her. It was unbearable.

Less seizures - less ACTH

We are now at .05 of ACTH every morning and tomorrow we drop to .04 every day. Each week we can go down .01 - the countdown is on. 4 weeks until Megan is off this stuff. Last week the Dr. increased her topomax to 50 MG twice a day and I am recording about 4 seizures a day. Of course that is what I can see. By her facial movements and stuff I know there are lots of things going on in there that are some type of seizure activity. Right now she is sitting here and her eyes just rolled up in her head, but no other body involvement. On Friday night we almost went to the E.R. This steroid is killer. Her cheeks were both flush red and her lips were bright red. We physically could not touch her without her screaming - anywhere on her body. She had no fever, but was hot to the touch and looked like she wanted to explode. The Dr. said he had no idea about these symptoms and I could go to ER. Nurse on 24 care line said these were extreme/severe reactions as I was describing and I should contact her Dr, and you heard what he said. Pat was of course ready to do whatever I thought best but voiced the ER is a germ filled nightmare with people who use the ER as a primary care Dr for general sickness, it was 11:00 pm, a Friday night and waking Megan up after she finally past out from screaming to sit in an ER until the AM hours might be counterproductive in the end. I agreed that we do not need her sick and decided that we would wait it out until the morning unless things got worse. Saturday morning brought about better things. She was less puffy, not bright red and I could actually touch her, not a lot, but she was not screaming every time.

Pat was like, what was the Dr. thinking wanting to send us to sit in an ER - if anything if she needs testing for ACTH levels, metabolic functions, etc he should admit us in and let Megan & us avoid all that additional stress and drama. That is what they would end up doing in the ER anyway after the 3 or 4 hour wait - they always do. It is a CYA thing. She has way too much going on. He is right - that is crazy. I am just glad that is subsided.

This drug has been out since 2007 and I am sure the side effects of weaning off are not recorded with all effects. What I am seeing is that Fridays are the third day after we are decreasing dosage, which is 1/2 way through. I think it is almost like a withdrawal. The past 2 Fridays have been the worst days. I am going to send this in to ACTHAR.com and see if they have heard this and maybe it can go on their web as a side effect when weaning off. I googled it, but nothing specific came up.

Lowering the dose has allowed me to see TINY glimpses of Megan coming back - a little smile here or there or just a look of contentment for a few minutes. I am hopeful that we will see improvements as we come off of this. She was in such a bad state before we started and it got worse and worse the longer she was on the ACTH - especially after the dose was increased, I was afraid of what we would or wouldn't see. Another thing I pointed out to the Dr. - the 6 week treatment at .05 wound of being 5 weeks of .05, 1 week at .07, 1 week at .06, and another week at .05 - so 6 weeks at .05, 1 @ .06 and 1 @ .07 - that is 8 weeks - longer than normal and severe reactions????? They just dont think about it like we do and they can't imagine how bad it is. I cant believe how horrible this ACTH has made her and life in general. Weighing the potential outcome vs. the side effects is not something you can imagine until your child has been on this. Not to say I would not try again if it was all that we had left to help her, but enough emphasis can not be placed on how drastic of a measure this drug is.

Going to go give Meg her meds - be free in about 45 minutes from that job!

Numbness

We started to wean Megan off of the ACTH as it is not working anymore. It should take about 6 weeks to get her completely off as it has to be done slowly so her body starts making the hormone again on its own. Just lowering it a little bit (.01) has made her look less swollen and she is not getting red like a tomato anymore. I started to see that and thought hypertension? It is a side affect. We see the neurologist on Monday again. When we spoke last week I told him how my chest hurt and there has to be something else. He was silent and said the ACTH was the pull all the stops out treatment. I left it at that until our appt so maybe he can reach for something for her. I think he was really beside himself with the news too - I could hear it in his voice. Today the boys were invited to a birthday party at a friends house and it was a paintball war - there are woods on their property and they have made it specifically for paintball. Pat plays too - all the dads and boys play. I was debating on taking Meg and decided not to. I felt like it would do me good to go and talk to some friends I never see and try to relax and have a good time. It was the wierdest feeling to be there. I felt like I really had nothing to talk to anyone about and I was so distracted and I COULD not enjoy it. I got dropped off before it was over and felt better back here with Megan doing what I do.I can leave and go out but I cant run away from my own thoughts - I am crying out of frustration and hopelessness which is something I dont want to have. I wonder what is going on inside of Megans head. Are there words that she wants to get out but cant? Does she imagine things like other kids or is it just quiet inside her head. Last night I had a dream that she was repeating words after me - like cat and mom for the first time. It seemed so real and we were both so happy in my dream. Of course when I woke up I remembered that it was not real. I have been scanning the web for cures again - looked up vagus nerve implants, but you have to be 12 - why not 2 if it will save her brain from more damage? Medicine and science sucks more times than it is good it seems to me. It is 2009 and the same things from 25 years ago are still wrecking our children. Wrecking my baby. She is so pretty and so loving - to look at her lying there you would never know anything was wrong, but it is - unfixably wrong

More Seizures

Okay - I am scared to death. We increased the dosage of the ACTH as of last Tuesday, had one day with no seizures and they are climbing. Yesterday (Saturday) I have 10 seizured recorded for yesterday and some of them were bad. Her body did the jerk and froze, her muscles got stiff as usual but then her hands and feet got all twisted and stuck and her eyes were flickering up and down during the seizure and when it was over she was crying like they hurt. Why is this happening? What is next - what if there is nothing to stop them. I feel sooooooo helpless and I have this heavy feeling in my chest about this. The crying Meg is doing is intolerable. Nothing makes her happy or comforatble. We were supposed to get to church this morning with the boys but we are too tired to make that happen. Next week....