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.