AAAHHHH!!!

AAAHHH!!!! That’s how I have to start and where I have seem to have been now for the last couple weeks. There have been countless moments I wish I had a soundproof padded room to have yelled and screamed, but instead my body has resorted to falling apart in tears. Proof would be falling apart in front of a group of doctors and strangers yesterday morning after they rounded on her to tell me what they know of as the plan. So I will back up a few days, or maybe it’s been a week now since they all seem to mold together with an event that may make me remember what day it is, or was.
The biggest thing and frustration has basically come down to her dialysis machine...the cycler. They have been messing with it now for two weeks. One day they mess with the volume and try that a day or two, then they try messing with the settings and try that for another day, then they switched the machine and tried doing a different kind of cycling setting. All this went on and on and on. It has been a fight for me to hold it together because of all of this. It is just so hard for me to think it is the ONE thing keeping us here. I have been having a really tough time now for about two weeks now because it has been now 9 weeks and 1 day that I have been living in a hospital room away from home and my family. The thing is, is I put in a descent and not farfetched hope about a month ago that I would be home by Easter or before. Well Easter came and went, no Easter egg hunt, no Easter dresses and pictures, no Easter service at church, but at least we had Easter dinner brought to us which would be the first homemade meal we have had in two months. By far was the hardest Easter to date for me, but I will have next year to make up for this year, and at least I am have all my kids instead of mourning the one I lost. This is where counting your blessings, is what I had to do to get through the day, but still is completely frustrating.
It was about three days prior that I was in her room doing her last feed before she was put on her tube feedings for the night that I broke down for the first time in front of the nurses. The thing is, is I have been holding my feelings in pretty good till recently for a few reasons, one that I was going to not be home for Easter, that she was healthy and able to be home with us except for “the machine”, and my kids were taking it really hard now. I had just gotten off the phone with them, which they now have been crying every time asking me to come home, which makes me holding my feelings in that much harder.
I sat there with them talking about how they were going to do something else and I lost it, but not tears this time, but anger and frustration. It is one thing when I am wanting and missing home, but when the kids are crying for me to be there, crying in school, grades being affected, and making comments that they don’t think I am ever coming home, I can’t hold it together anymore. I asked what the plan is, and why can’t I go home and do this manual dialysis till she is big enough for the cycler to work if that is the only reason? Now that has changed now, but at that time it was the first time that they had even thought of that! Really?! This is why I am getting to my wits end because it doesn’t seem like getting us home is their main goal each day or any day for that fact. So instead she has become more of their guinea pig from day to day on what they are going to try.
It seemed like there was maybe a hope for that until Saturday when we came back to the hospital after Tristan’s first baseball game. When we walked in the room her arms and hands had lost all of any color that she had. Her skin was as white as the bunny that lay next to her. I asked the nurse about it and they hadn’t even checked why. Really?? They ran the blood counts but all came back ok, but as her mom I know something was up and it was killing me along with an unknown kind of rash all over her. We luckily had one of the two doctors that actually have the family’s interest in hand on that weekend so he made them run the tests. Then he told us what may be going on and what he wanted to do to try to fix it and go forward not just stand still for days or weeks. First would be the dye study on Easter morning and then depending on what that showed they would do a TPA to try to clear the catheter and run heparin in her dialysate. (Which I said weeks ago to do).

Sunday morning came and we packed our little peanut up and took a walk to radiology. It was the best thing carrying her there. She was so wide eyed in amazement of the ceiling and things changing around her, since she was so used to the same thing her whole life. And for me to be able to carry and walk with her felt just, awesome to put into a word. It made me imagine being able to take her in public and outside some day, maybe soon, to smell the fresh air and see things, anything but the inside of her hospital room.

Mel had called the night prior to ask if it was ok to come see me after church, which how could I say no? I would never ever turn down the chance to have time to see my family or visit with someone beside hospital staff to make me feel almost normal for a minute. When I walked out to hug them I fell into Mel’s arms in tears. It would be the second time that day that I broke down since earlier that morning in the shower realizing I wasn’t there waking up with my kids excited for Easter egg hunts and what the day would hold. No excitement was in store for my day, just the longing to be anywhere but here. As I looked up over her shoulder I saw my Mom, Dad, and brother who came along with her too. It eased a pain in me knowing I would for a moment that day I would be with part of my family. Of course they couldn’t stay all day but before they left we sang ‘Because he lives’. Now if you want to make me cry play that song, and listen to the words. I have sang that song so many times in church and even when we baptized her too, but we only sung the chorus, so I will write the words out and see why everyone, yes even me, were in tears by the end….

Because He Lives
________________________________________
God sent His son, they called Him Jesus
He came to love, heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.


Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.
How sweet to hold a newborn baby,
And feel the pride and joy she gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.


Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because he lives


So Sunday came and went and nothing was really done. Then Monday came and they did the TPA, the first time it didn’t do much so they did another dose with the hopes that it would work or surgery was a for sure fact. Well as the second dose went in I prayed and prayed that it would work, and it did. Now it wasn’t flowing as well as it used to but it was a lot better and they said it would get better as time went on. They were right and Monday and Tuesday morning went really well and she was pulling a ton of fluid. I had to take off in the afternoon to go to Vanna's dance class. Now this is when I began to lose all patience again during and after rounds because they were not going to do anything, yet again. So another day would come and go before they would even try to get her going in the direction of home. As I left they were arguing with the nephrology attending for us, on why not to try the cycler today so we can see if it works. The thing is 24 hours to them in nothing, but for us it is 24 hours away from our life, our kids, our home, our family, and any sense of normalcy. Dan text me later that evening saying that they had got them to turn the cycler on. He kept in touch telling me it was running good and pulling fluid off, but I couldn’t get my hopes up since we have not had a good track record with it. And I couldn’t tell the kids and get there hopes up because I didn’t know if this was the real thing that was bringing us home.

When I got back that evening it was still working but Dan had to move her all over the place to get it to do what it needed. So to say the least it was not ideal, but I would take having to do this if it meant we could go home and it would be getting better. I stayed for a while after to try to feed her but she was so tired from being messed with that I headed back to get some sleep. I have been feeding her nonstop during the days and as of today they decided to turn off her tube feeds and rely solely on me or bottles during the night now too. This was a very happy moment for me besides all this dialysis stuff.

The next morning was an early one for me since I do her feeding once the daytime nurse comes on which ends up being between seven and eight. Now for normal people it may not seem so early but when you don’t go to bed till after 11 and don’t sleep because you can’t turn your brain off or can’t get comfortable (for the record HATE sleep number beds, even if I finally found my number). So I was dragging when I got up there and just having a low day feeling sorry for myself I guess since Dan was going to be leaving that day to go clean up the house and spend the night with the kids at home to try to get them on some sort of happy note. Now I was happy that he was going to do that, but then the other part of me was hurting and breaking knowing I couldn’t do it. So it just set me off on a mess to start.

When I got up to her room I fed her and she was getting reconnected to the cycler because the bags ran out and needed to be reset. The nurse got it all running and we sat and watched the numbers. The story of our life with her. First it was watching her SAT numbers and now it was her drain UF numbers. For a couple cycles I sat there moving, pulling, stretching, and manipulating her trying to get her to drain. Soon after I couldn’t take it anymore and put her back in bed. The nurse called and got the go ahead to disconnect her so that they would start her back on manual??? I sat there just staring at the nurse not knowing how to react or feel but just frustrated. I asked a simple question, will it get better? Is the catheter going to work as she grows, or is this just going to be like this forever? As her mom I want what s best for her and I don’t in any way want her to go to surgery but if that is what needs to happen for my baby girl to come home, then I will be ok with it. The nurse of course couldn’t say anything and I looked out the window and wept. I began to then pray that God would give me the wisdom and words to tell the doctors how I felt. At that moment the nurse came in to tell me they had rounded but wanted to talk to me.
Well I am now at the point I was in the beginning. I sat there as they told me the nephrologists would talk to the surgeon and let me know what the plan would be. The plan? I of course asked what they knew and of course nothing, then I asked when I would hear from the doctor and when she was planning on talking to the surgeon. And again they didn’t know. That is when I couldn’t contain it anymore and I fell apart. I couldn’t even catch my breath; it was as if all my voice and ability to hold it in was gone. All I could think about was what would I tell my kids, when would I ever be home with them. I got enough of a breath to say sorry and went into Faiths room. It was in that moment one by one each doctor and nurse came in and said sorry and explained what they were going to do to get a plan made.

It is not so funny to me how God has used me as his guinea to learn patience, faith, and love when I feel I have none to give. In that moment he gave me the tears to be the voice I prayed for. Who knew tears spoke louder than words.
SO here I sit writing this out for the second time, since the first time I erased it all after venting for two hours. Again I say patience. I am praying for peace and a calmness of knowing he has a plan and will hopefully have it shown, and soon. Because as of 6 am his coming morning I have to give the ok to go ahead with surgery to find out and fix her catheter issue. It could be as little as a 45 minute surgery, but as much as a new catheter placement, which means putting in a hemo marker till the other catheter is healed and ready to use. And as those knowing her, know that she does not handle the hemo dialysis well and requires blood products to sustain her.

So I will fall asleep tonight praying, and begging for peace over and over and over again. Cause I would be lying if I said I wasn’t so scared and so so uncertain. Here’s to another day of being Gods guinea pig, and not my daughter being theirs.