Teach me your ways, OH LORD, and I will walk in your truth; give me an undivided heart, that I will fear your name.

Psalm 86:11

I will be your God throughout your lifetime until your hair is white in age. I made you, and I will care for you. I willI will be your God throughout your lifetime until your hair carry you along and save you.

Isaiah 46:4




Blessed is the man whose quiver is full.... Psalm 127:5


Trust in the Lord with all your heart, and lean not on your own understanding. In all thy ways acknowledge Him and He shall direct thy paths.


Proverbs 3:5-6




Friday, September 14, 2012

Failure

i have been intending to write about the last three weeks events for about... well three weeks. Truth? I have so many emotions about everything right now i wasn't sure how i would say it all, or what it would leave with you after you read it. So right now, i am saying up front, i am raw. No flowery words or long thought out presentations. Just me.

Yesterday I posted a quote from Hitler on FB. Not because i am a fan of Hitler--I come from a long line of Germans and my grandfather would be disappointed to say the least-- but because the quote stuck out to me. 

"Anyone can handle victory. Only the mighty can handle defeat" -- Adolf Hitler

As i type this, and the reason that today is any different that the days that passed the calendar for the three weeks prior to my typing this, I feel defeated. 24 hours ago i was claiming that i had Almighty power in my midst and this was just going to be a recollection for me. This wasn't lasting...IT couldn't really be lasting...

Rewinding to the Wednesday that we decided to do the hospital admittance for Logan. August 15th. It was my sisters birthday. *side note: Lexi was born on Joel's grandfathers birthday, Lorelei was born on Joel's dad's birthday, Luke almost drowned on my dad's birthday, and Logan was hospital bound on Katie's birthday. Just so you know i am no vetoing my family's aging. I can't have more babies so it seems just negative is coming of it* Logan, Luke and i sat in the room with the Barbie like PA and went thru the symptoms, yet again. Same symptoms, no weight gain, just another day. As she began to tell me that we would just begin the enema series again and I jumped in and said NO. I cant do that to him again. SO she sends us off to xray.... yep this is when we learned that the clump had now become a mass that was base ball sized.

The PA, Logan, Luke, and i sat down in her office to discuss her New Plan. Dr Rittmeyer happened to be rounding the corner and she called to get him to join us. She explained that i had done every thing that had asked me to do and the mass did nothing but grow. With no haste he said "OK lets admit him." when i gathered my shock from the floor and asked to have a day to make arrangements for my other kids. Then i called all of our parents and cried during each moment of every conversation. Joel took the day off of work- i was super grateful because i wasn't sure with such short notice that was going to work. We wrote notes to teachers and carefully put the girls on the bus, the dropped Luke off with Stacy, and we were off.... to what we weren't quite sure but we were off.

Arrived, checked-in and waited. A nurse came in about thirty minutes later with tubes, tape and extra hands. They wrapped Logan in a big blanket to keep his hands still and then they ran a tube up his nose that continued into his belly. They started the fluid and then we waited. It took a good while to get anything and then we got a "good movement" and we were so excited! Then Nothing... then more nothing. Nana came up to relieve us for a quick lunch then we went back to waiting.

About 4am on Saturday morning, Logan woke up soaked. His linens were wet, his shirt was wet, Joel was wet because he was a little to close when the explosion came. The liquid came without ceasing for about two hours. J and I were expecting actual poop.... this was not what we got. In my mind i continued to compare it to a mountain. You see the beauty of the stream running down but you don't see the slow erosion of the mountain underneath. Well i was praying the erosion was steady even if slow.

We were released about 7pm Saturday night. Exhausted but apparently cleaned out.

we had a follow up appointment on the up coming Thursday where we hoped to discover what was next. At this appointment we decided to change the mirilax routine and to do a "gluten challenge" on the 6th of September.

We changed the mirilax routine and challenged the gluten to prove... that his belly swells full of gas when he eats gluten and he gets cranky and clearly uncomfortable. His bowel schedule is still not what he needs it to be and that is beyond frustrating.

Lorelei needed to see Dr Stone our pediatrician on Wednesday because of what i suspected to be an ear infection... it was an ear infection but a way more painful nasty one. She has Bullous Myringitis, aka a blister on her ear drum.  Although it was a pretty clear diagnosis it gave me a chance to pick Dr. Stones brain about what is going on with Logan. We chatted and looked at Logan's growth curve and He wanted to know what supplements Logan was on to increase his weight.... WHAT??? WE AREN'T ON ANYTHING!!

So on the way home i prayed about how to chose my words for the appointment with Dr. Rittmeyer the next day. I asked for God to give me the right questions and to help me ask them in a way that would not be offensive but get me the answers i need for my kid.

Appointment day comes. still no weight gain. The PA says she probably wouldn't have done the gluten challenge just yet because his body wasn't ready. WHAT?? then she notes that he hasn't gained weight, and we discuss his current movement schedule. which right now is two or three movements one day, then nothing the next day, then one, then three... its inconsistent, and nowhere near where it needs to be. So she suggested enemas again... know what i said?? Yep! No. We are doing a mirilax clean out instead so that we can be sure that the super stretched bowl doesn't fill back up again. Then i ask her about the growth

She goes back to her office and plots his "progress" then comes back and says..." I hate this term but he is 'failure to thrive" Please know that at this point i had totally prepared for this diagnosis. I knew that my son has not grown in 11 months. The label isn't what concerns me at this point in the game... its the solution or lack there of.

We then discussed pediasure and how much and what it was for etc. What i didn't mention about my initial return after the hospital visit is that despite the drain that took place in his little body, there was a 3 ounce weight gain. I asked if it was possible bloat and they promised me that it was gain. That 3 ounce weight gain did not stick. Bloat or not bloat its gone. Dr Rittmeyer projected a ONE POUND weight gain before i returned in three weeks. No WEIGHT GAIN.

We left with growth chart, a poop schedule to track, a script for more mirilax, and a pediasure plan of action.

i spent $50 on pediasure and began giving it to him yesterday afternoon. The diahrea began shortly after. During the last few months that is nothing far from normal, but after another pediasure this morning and the runs continued i did more review... My dairy free child has been drink milk based pediasure. I trusted that the recommendation was what he needed--- i should have read the bottle more carefully.

I have called and spoken to a nurse that has never seen us and knows nothing about our case and "cant access his chart at this moment", then called the on call PA that is not the PA that i have dealt with either... and they decide that i need to for go the pedia sure all together until Monday. I continue with the clean out as discussed and they will leave a note for me to be contacted on MONDAY.  During our conversation we talked about a dairy free version of pediasure and she informed me that it was really expensive. When we began this journey with Logan, Joel's parents told us cost was no deterrent... So i inquired about the cost and asked if i could just pay out of pocket while we fought insurance...."well lets just wait for now, but if he poops again call me and ill get ahold of DR Rittmeyer"..... Do you mean that you called the on call PA that doesn't know us when the Dr was across the street at the hospital doing rounds??!!!!! Absolutely not OK. We are flushing this weekend... every reason why we would need to be in taking more calories.

Dr Rittmeyer sat down and played cars on the floor with Logan when we were doing the hospital clean out. I really liked how kind he was when i cried uncontrollably during the biopsies while my husband was in France. Today however... i feel like i failed my child because i didn't comb through the Dr office instructions. i am angry. I feel very defeated.

Ironically Hitler committed suicide when faced with defeat. Apparently it is only the "mighty" or the Almighty rather that can handle defeat.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

"come to me when you are weak and weary. Rest snugly in My everlasting arms. I do not despise your weakness, My Child. Actually it draws me closer to you because your weakness stirs up My compassion- My yearning to help. Accept yourself in weariness, knowing how difficult your journey has been. Do not compare yourself with others , who seem to skip along their life paths with ease. Their journeys have been different from yours, and i have gifted them with abundant energy. I have gifted you with fragility, providing opportunities for your spirit to blossom in my presence. Accept this gift as a sacred treasure: delicate yet glowing with brilliant light. Rather than struggling to disguise or deny your weakness, allow Me to bless you richly through it." --Sent to me by a friend Reference unknown.