I can look at Megan and see that she has gained a little weight! This thing is working. My scale is possessed I think so I can not get her real weight but we moved up a size in diapers. Her butt cheeks were sticking out. I am so inspired by the success so far and can not wait to see the surgeon at the end of the month for the real results on the actual scale she weighed in on the day before the surgery. He said we would do a couple of trials before permanenty implaning but i am hoping that he will see the immediate benefits and pull the trigger so we can move ahead to a permanent fix. This is actually the first treatment that has been really successful for Megan out of any! At first her seizures increased a lot but I think it was because her brain was getting nutrition and everything was firing - something new for her. They seem to have eased up some now that we are 3 1/2 weeks in. I am not certain of that theory but it seems that way. She is much more alert and her skin pallor looks beautiful. No rings around her eyes and sickly pale face. She seems to have a glow in her complexion. Nutrition is an amazing thing. Not a disease cure but certainly helpful.
On the flip side this is something I had to express to someone regarding Megan's disease and the dynamics that go along with it that we dont like to think about. Hard to write this but in summary it says something of where we are now and where we have been to....
The face of her disease has always been this severe and we do not know what tomorrow will bring for her. Since her official diagnosis right before her 1st birthday we have known this and have had a few very close calls when she somehow rallied back - each time the disease taking some more of her though. It is hard to have to explain that to kids. its hard to tell an adult. Definitely hurts but we have to deal with the hand we were dealt. We dont spend our time anticipating when it will happen because then we will be wasting the time she has on sorrow that will rear its ugly head eventually. James and Ryan know that every day she is here is a gift and when she is tired and God is ready to take her home - he will. And we will be sad but she will not hurt anymore and will finally be free to run and play with all the other angels and will be with family there that will love her until we see her again. It was awful to have to make them realize this - devastating actually. ...she is the best thing that ever happened to me. As Ryan puts it we are lucky God picked us to have Megan instead of a family that would not care for her the way she needs. In that respect she is very fortunate! She has shown me the true meaning of unconditional love in its purest most innocent form. She does not have a bad bone in her whole body - she knows how to give love and to receive love and she gets and gives plenty of both. I think so much of it that it has kept her here long past her time. A psychic who does not know me or anything about me just blurted that out to my sister at a business function they both attended....she did not know my sister either.
She told her "your niece has been ready to cross over several times and was at the bridge but did not - because of the love her mother has for her she is staying." I realized then that I had to tell Megan that when she was tired she could go and I would be okay - we all would. I dont know what she understands but I told her in case...
Thursday, March 15, 2012
Thursday, February 16, 2012
Hoping for success
February has been a whirwind of a month. With all of the appointments, tests, procedures and consultations Megan had there is surely going to be some good outcomes. Hopefully anyway.
Monday we had a emergency consult with the GI Dr. at Shands due to her progressive gastroparesis and weight loss. I went to discuss a GI Stimulator as the options presented by local GI team were not options for Megan. GJ Tube is not possible due to all of her allergies and that there is not a single enteral formula that meets her needs for the J tube. Home prepared blenderized diet can not be used which is what I have had to come up with to be able to give her anything. The other is TPN which is the insertion of a port so she can be fed through IV. Not going to happen. You dont put ports in patients with immune system deficiencies or with increased risk of infection. Last April we started the immunoglobulin therapy for Megan and did not get a port for that. Instead of monthly IV infusion we do weekly sub Q at home because of the risk the port posed to her. Put it in so she can deteriorate from infections and most likely pass away. We still are on the weekly infusion and will continue to be for a while.
I was very pleased that the Dr. was thinking the same way that I was. That this is our option. While new for ped patients - very new - it gives us hope that she can get some nutrition in as the stimulator will serve like a pacemaker does for the heart, only in the stomach muscles. It will send electric impulses to the muscles that move the food through to digest He was so on it that we are already scheduled for pre-op on the 23rd and insertion on the 24th up in Gainesville. It will be amazing to see what her body will do - and her brain if she is absorbing nutrients, vitamins and SEIZURE medications!!!!
We also had the urodynamics study done at the crack of dawn on Tuesday morning. Another procedure off the list....I am not scheduling the follow up until after the GI implant because I am not up for anything else this week. Worn out. Megan and I both.
I feel very guilty that I will be gone Thursday through whenever they say Meg is okay to come home. Minimum of 2 days - depending on what happens. I know this story well though. Have lived it out too many times. My guilt is for Ryan. It is really hard on him. All that went on when he was 5 and 6 with Megan really affected him and his anxiety - separation and in general - is severe. I hate to have to stir it up. He wont realize it but it will come out and I am certain there will be some regressive behaviors.
Have been reading a great book. Not an interesting topic for most but I am getting a lot out of it. It is called Families Living With Chronic Illness and Disability. It is so on for a family like mine with the kids, marriage, normal life, the disability world and the lack of knowledge the rest of the world has or cares not to have when it comes to what supports are needed for the family to survive. It will also be a great tool when it comes to advocating for Megan and our family. I realize even more that I should not disregard the needs that still exist outside of Megan or feel weak to need more.
Monday we had a emergency consult with the GI Dr. at Shands due to her progressive gastroparesis and weight loss. I went to discuss a GI Stimulator as the options presented by local GI team were not options for Megan. GJ Tube is not possible due to all of her allergies and that there is not a single enteral formula that meets her needs for the J tube. Home prepared blenderized diet can not be used which is what I have had to come up with to be able to give her anything. The other is TPN which is the insertion of a port so she can be fed through IV. Not going to happen. You dont put ports in patients with immune system deficiencies or with increased risk of infection. Last April we started the immunoglobulin therapy for Megan and did not get a port for that. Instead of monthly IV infusion we do weekly sub Q at home because of the risk the port posed to her. Put it in so she can deteriorate from infections and most likely pass away. We still are on the weekly infusion and will continue to be for a while.
I was very pleased that the Dr. was thinking the same way that I was. That this is our option. While new for ped patients - very new - it gives us hope that she can get some nutrition in as the stimulator will serve like a pacemaker does for the heart, only in the stomach muscles. It will send electric impulses to the muscles that move the food through to digest He was so on it that we are already scheduled for pre-op on the 23rd and insertion on the 24th up in Gainesville. It will be amazing to see what her body will do - and her brain if she is absorbing nutrients, vitamins and SEIZURE medications!!!!
We also had the urodynamics study done at the crack of dawn on Tuesday morning. Another procedure off the list....I am not scheduling the follow up until after the GI implant because I am not up for anything else this week. Worn out. Megan and I both.
I feel very guilty that I will be gone Thursday through whenever they say Meg is okay to come home. Minimum of 2 days - depending on what happens. I know this story well though. Have lived it out too many times. My guilt is for Ryan. It is really hard on him. All that went on when he was 5 and 6 with Megan really affected him and his anxiety - separation and in general - is severe. I hate to have to stir it up. He wont realize it but it will come out and I am certain there will be some regressive behaviors.
Have been reading a great book. Not an interesting topic for most but I am getting a lot out of it. It is called Families Living With Chronic Illness and Disability. It is so on for a family like mine with the kids, marriage, normal life, the disability world and the lack of knowledge the rest of the world has or cares not to have when it comes to what supports are needed for the family to survive. It will also be a great tool when it comes to advocating for Megan and our family. I realize even more that I should not disregard the needs that still exist outside of Megan or feel weak to need more.
Wednesday, February 1, 2012
OMG
Venting here. I hate doctors offices!!!! I am so sick of being in them. And I hate the stupid medical assistants who cant get anything right...........espeially when they are working in an office that is taking care of chronic and disabled children. Pay attention and follow through on what you were supposed to do so it gets done and I dont have to chase may tail in circles to make sure you do your job. This is the best. I am at St. Joes at the Medical Arts Building. The 3rd floor is all pediatrics and specialists. Nutrition, mobility, movement disorders, GI, metabolic disorders - basically all the kids being seen there have issues - big ones. So I am waiting for the Dr. that does the botox injections for spasticity and movement disorders and Megan's feeding pump clogs and I can not get it to work. She is sick with a fever - but we could not miss this appt or else we would be 6 months down the road for a reschedule. So I make sure we are there. With her fever I need to make sure she is hydrated and fed - also she has lost 2 more pounds due to more GI complications that we are waiting on the GI Dr.s Med assistant to refer us into Shands on an urgent basis for a GI stimulator so she can digest - which she screwed up - per my comments above. Anyway the nutrition is really important. I go out to the front desk and ask the receptionist for a cup so I can at least get the food out of the feeding bag and give her bolus feeds to keep her hydrated. She tells me there arent any. I ask - is there a kitchen that you all use maybe? A water cooler? Then I say wait the ped lab is right here - they have to have a sterile specimen cup. She tells me no. I tell her why I need it - to feed my daughter and her feeding pump broke(the 60cc syringe I have does not fit into the top of the bag to extract the food and the 10 cc syringe is too short to get in there to get any food. Besides the fact that it is really hard to do that with a sick crying spastic child with flailing arms without spilling it before being able to get it out and get it into the gtube. She tells me I cant go to the lab and ask. I ask her if she is able to....she says no. She also knew exactly who Megan was because she saw us come in - everyone saw and heard us come in. She was arching up out of her wheel chair and her arms were extended out cojpletely straight while she was crying and choking on phlem.. I almost killed this woman.....I did not say anything...I just looked at her and walked away in shock. Can you imagine? I felt like telling her I would not pee on her if she was on fire in front of me. What is wrong with people?????????????????
Saturday, December 31, 2011
Saturday, November 26, 2011
Friday, October 28, 2011
Too much information at one time
Holter monitoring results back. - abnormal. Bladder ultrasound report - bladder not emptying fully. Both of these within the past 3 days. BTW - urologist was an ahole. He should have been a proctologist instead. Monday Meg sees pulmonology to discuss a cough assist due to her decrease in swallowing and excessive upper airway congestion from saliva and reflux, Tuesday is GI follow up to talk about a possible JG Tube - one in stomach and one in small intestine. Monday is also labs at home with special PIC Line pedi nurse. Wednesday hopefully we can get annual mito labs/screening drawn with the use of ultrasound equipment to find vein at hospital outpatient lab through radiology. All I can think is poor Megan. My sweet little girl put through so much. Why her? Why not me? Why???????????????????????????????????????
Yesterday morning I snuggled with her on my lap in our huge Jax Sac bean bag (bought especially for the princess and the pea) and she looked at me the way she does like she knows exactly what I am saying while I asked her what she knows that I don't and if she knows how much time we have left together??? Does she wonder that?
The highlight of our day was getting to go to Ryan's school for his classroom fall festival. There were 5 stations set up with cookie decorating, crafts, lollipop ghosts, etc. that the kids got to rotate around at. Ryan wanted me to bring Megan so he could make her a scary popcorn hand. He kissed her and told her to please feel good enough to come to my class. He was so excited that I was coming AND bringing Megan. He said it was important since she wouldnt ever get to have her own fall festival at school like he does. She did like it. She was mezmerized with all the activity and kids. So much that it took all of her energy and she fell asleep after 30 minutes and slept for the last 30 minutes of it. I am glad I got to bring her with her big Halloween bow in her hair and her spookly shirt on - for her, for Ryan and for me. For the memories. My stinkerella, stinkerbell, tinky - we have so many names for her. Flopsy Mopsy, Drooscilla(duh - cause she drools). Little Mama, Baby Girl. MayMay, Meggy, Mean G. I heard that the more nicknames a person has it means the more they are loved. I believe it is true!!!!
Yesterday morning I snuggled with her on my lap in our huge Jax Sac bean bag (bought especially for the princess and the pea) and she looked at me the way she does like she knows exactly what I am saying while I asked her what she knows that I don't and if she knows how much time we have left together??? Does she wonder that?
The highlight of our day was getting to go to Ryan's school for his classroom fall festival. There were 5 stations set up with cookie decorating, crafts, lollipop ghosts, etc. that the kids got to rotate around at. Ryan wanted me to bring Megan so he could make her a scary popcorn hand. He kissed her and told her to please feel good enough to come to my class. He was so excited that I was coming AND bringing Megan. He said it was important since she wouldnt ever get to have her own fall festival at school like he does. She did like it. She was mezmerized with all the activity and kids. So much that it took all of her energy and she fell asleep after 30 minutes and slept for the last 30 minutes of it. I am glad I got to bring her with her big Halloween bow in her hair and her spookly shirt on - for her, for Ryan and for me. For the memories. My stinkerella, stinkerbell, tinky - we have so many names for her. Flopsy Mopsy, Drooscilla(duh - cause she drools). Little Mama, Baby Girl. MayMay, Meggy, Mean G. I heard that the more nicknames a person has it means the more they are loved. I believe it is true!!!!
Wednesday, October 19, 2011
Thursday, October 13, 2011
Another round
This week has been full of more Dr. visits with the specialists. Thankfully we saw Dr. P who has been able to solve the mystery of Megan's swallowing issues. Has nothing to do with decreased muscle tone - it is her allergies that have triggered her reflux and her esophagus is completely raw and red. Go figure - the ENT figured it out. Not the GI or the allergist/immunologist. It all stems back to medicine - what else. Since coming off the Ketogenic Diet some of the doctors have been wanting to prescribe liquid meds again even though I prefer the tablets and caplets. The sugar in the liquids are allergens - corn syrups, sugar alcohols, etc - feel like such an idiot for not realizing this. I printed every hidden name for sugar that exists and cant believe that some of them are names I would pass by. Even on labels that say sugar free!!!! or no added sugar. So we are back on track to heal that up. Poor baby. I cant imagine - like having strep throat or tonsilits and being ignored.
Saw the immunologist too. Good news is her immunoglobulin levels have doubled since starting the IVIG 6 months ago. Bad news is her liver enzymes are elevated - that could mean a multitude of things - from disease progression on the next "victim" organ, or affects of medicines - or a bad batch of immunoglobulin - there is another kid testing the same way as Megan on the same product. In that case it would be hepatitis which would suck! Going to wait and see though. Not going to try and figure this out. Just going to get the labs drawn and see what they show.
Tomorrow we are going to the pulmonologist for a follow up. I am so over the doctor appointments already. At least tomorrow is Friday and then there will be 2 days without a doctors office. yay!!!
Saturday night is going to be the start of the next chapter in James' life. He is going to homecoming with a date- in a limo -!!!! It is a bunch of couples but here we go. I hope he enjoys himself and realizes what great times these are for him. I always wanted to be done with high school and onto bigger and better things. Of course I knew everything so noone could tell me to slow down. Wish I would have though. I missed out on a lot. I never went to a homecoming or prom!! I thought they were stupid.
Like Tim McGraw says:
I cant remember who I was back then
you do what you do and you pay for your sins
and theres no such thing as what might have been
its a waste of time
drive you out of your mind
This part of his song has always had a deep effect on me and made me think. More so than most other things I have heard in my life so far. It is very.......................real and true.
Saw the immunologist too. Good news is her immunoglobulin levels have doubled since starting the IVIG 6 months ago. Bad news is her liver enzymes are elevated - that could mean a multitude of things - from disease progression on the next "victim" organ, or affects of medicines - or a bad batch of immunoglobulin - there is another kid testing the same way as Megan on the same product. In that case it would be hepatitis which would suck! Going to wait and see though. Not going to try and figure this out. Just going to get the labs drawn and see what they show.
Tomorrow we are going to the pulmonologist for a follow up. I am so over the doctor appointments already. At least tomorrow is Friday and then there will be 2 days without a doctors office. yay!!!
Saturday night is going to be the start of the next chapter in James' life. He is going to homecoming with a date- in a limo -!!!! It is a bunch of couples but here we go. I hope he enjoys himself and realizes what great times these are for him. I always wanted to be done with high school and onto bigger and better things. Of course I knew everything so noone could tell me to slow down. Wish I would have though. I missed out on a lot. I never went to a homecoming or prom!! I thought they were stupid.
Like Tim McGraw says:
I cant remember who I was back then
you do what you do and you pay for your sins
and theres no such thing as what might have been
its a waste of time
drive you out of your mind
This part of his song has always had a deep effect on me and made me think. More so than most other things I have heard in my life so far. It is very.......................real and true.
Sunday, October 9, 2011
Should be trying to sleep but I can't. I left the bedroom crying. I am afraid. Afraid that Megan's not going to be here much longer and afraid to be without her. I picture her in my mind and can't imagine that someday I won't be able to touch her. It is selfish for me to be worry about that but i dont know how not to. My chest feels like it hurts so bad just thinking about it. I don't know why I have had this terrible feeling lately but I have cried every day lately. In the shower, when I have a little quiet time it just comes out. I need to find peace with these feelings because I have no say in how things will go. It is in God's hands...and somehow I think Megan's too. I just love her so much. I love to see her smile at me and to kiss her little cheeks and when she talks to me with her own little language of sounds that are so playful. I can feel how much she loves me - she doesnt have to know how to talk to convey it. I have to find someone to talk to that knows what to tell me so I can stay strong and come through this for Pat, James and Ryan. And me. I just can't see MY life or my heart being repairable...it seems impossible.
Saturday, October 8, 2011
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