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.