3 am

It's 3am, and here I am laying in bed crying. It seems like thats all I do these days, I'm always on the verge of tears. Going on about a month now. You see, my whole life, I can probably count on both hands how many times I've really cried. Until this past month that is. It comes out of nowhere usually. I can be watching tv, or read a poem, or even just talking to my mom and she asks me if I'm ok and I just lose it. I've always been one to keep all my feelings inside, bottled up until i finally burst. It's different now, I'm different now. Is it because of all that's happened with Willow, with my son Corey, maybe my hormones are changing, maybe I've just had more than I can handle and this is how my feeble mind is responding? Maybe all of the above, no way to know for sure I guess. Then after I cry in think to myself, why am I so upset? Things could be much worse, one of my children could be terminally ill, *I* could be terminally ill, we have a beautiful home, my husband has a job, we have health insurance, then why, WHY do I always cry now? It's so foreign to me, and I'm not sure if it really makes me feel any better. Maybe I'm just finally growing up at 36 years old. Maybe I am just not as strong as I once was with all I've been through in my life. Then I feel guilty. I should be bursting with joy that my child is thriving. While I am, I am still devastated that she may have to live her entire life dependant on something, whether it be a feeding tube, medication, doctors, having to adamantly read labels on EVERYTHING she eats, or us, her parents to be her caregivers. Her GI doctor made it sound like her gastroparesis was a temporary issue, but you all know me, and know that I immediately researched it in depth. From what I've found it is a life long condition, with no cure. That in fact many people with GP actually have 2 feeding tubes. One in the stomach and one directly into the intestines since the stomach is basically paralyzed and unable to digest food. With the second tube the food, or formula, is able to be absorbed by the body. Part of me is SO angry that they didn't do more testing such as a gastric emptying study before they placed the gtube. As it stands now she very well may also need that second tube, that they could have placed at the same time! Now she may need another surgery, and that infuriates me. All I can do now is pray, and continue to be her advocate and trust my instincts. Maybe I just need to cry and cry and cry until this is all over, or until I just can't cry anymore and decide to just leave it in God's hands and know that I am not alone in my despair...that He is holding my hand and helping me through this. Maybe I need to lean on my husband more, but I honestly don't know how. Tonight I will pray for strength, and guidance, and the courage to be able to turn to Les and ask him to help carry me through, because I know he would do anything in his power for me, for us. For him, I am eternally grateful. I apologize to all of you reading for the depressing post, but I promised myself when I started this blog to be open truthful and write exactly how I am feeling so I can look back and remember it all, so here it is, the ugly, honest truth.

3 weeks post surgery...

     The past 3 weeks have been both exhausting, and rewarding. After only about a week after surgery, the tegaderm over her g-tube site started collecting all kinds of gunk, drainage from her stomach, gross. The surgeon had us come in (after I emailed her a picture of said funk) and she took it off 2 days early because it was so nasty. Thank goodness for today's technology. That's when she was able to take her first bath in 12 days! She stayed in there for 2 hours, happily splashing around.

     She wasn't able to tolerate her bolus feeds after a few days, she starting vomiting after each one, so *I* put her on continuous feeds. I told the dr's in the hospital that I felt that was what she needed to be on, my gut told me so, but they dismissed my concerns. Guess what...she's kept everything down since we switched. Her little digestive system just doesn't work the way it should, something I've been saying since she was 3 months old.  I also learned that every time she has any real food, she LOSES weight. Pretty ridiculous, huh? As of now she is on 100% formula until the dr's (or me in my super sleuth-like research skills) can figure out why food does this to her. Why she doesn't absorb the nutrients she should if it isn't already predigested formula.

    We are starting to get into a routine now, I think. I decided that I am going to take a new picture of Willow every day, so we can see the progress. I wish I'd have thought of this 3 weeks ago, but when you're brain is already on overdrive, the best ideas are far from the front of your mind. She is up to 25 lbs 11 oz today, which is almost 3 pounds in only 3 weeks. Astonishing. Everyone told me how happy I would be after the tube was in, and while I definitely didn't believe them at the time, now I see why they were trying to reassure me. I was {this} close to rushing in and stopping the doctor from doing the procedure, now I thank God that I didn't. It was the right thing to do, the right decision to make. Within just a few days of being on the formula we could see a difference in her, in her personality. She has become so much happier, and nearly ALL of her autistic traits have disappeared. They return if she has had an allergen unfortunately, but after the last episode (and the weight loss) that is when I decided NO MORE FOOD, and it has done wonders for her. For whatever reason, food seems to be her enemy, both physically and emotionally. I am praying that her doctors can figure out why this is, until then we will continue on, take everything day by day, and know that God has special plans for this little girl. She is meant to change lives with her story, I just know it.

Look at those cheeks!!

Blessings

  I know I haven't talked much about the rest of the family, including my husband. I'd like to do that now. He has been my rock through this, sitting back, letting me process and absorb everything I needed to learn, while also being there the second I need anything. He is in the middle of switching jobs, and has been under incredible stress from that, too. He's handled it all with such grace and composure, a lot more than I have had. I don't know what  I ever did to deserve such an amazing man, but I am undeniably grateful and don't take a second of it for granted. I know how blessed I am.
   As for the other little people that live here, they are such great helpers as well. They want to help in any way they can. K is always right by Willow to hold her hand when she gets scared, or just to let her know she's there even when she's brave. I can't imagine being a child and watching my baby sister go through something like this, their strength amazes me, too. My family, (including those far away) and my wonderful children, Chelsea, Corey, Kailee, Ellen, and of course Willow, are my blessings from God, and I treasure them more than anything else in the world. ❤

Home

So after a roller coaster of a ride at the hospital, we are home. We've had some bumps, but I think we are finally settling into a routine. The first night at the hospital when they started her feeds, she wasn't tolerating them, so we had to start over. She seems to be tolerating them all now though, which I am so very excited about. Her little tummy just wasn't used to being so full, and having to actually digest so much. I'm still a little concerned though as its day 4 after surgery and she still hasn't had a bowel movement. She had one the day of the surgery, but she was a bit constipated. Tmi, I know, sorry about that. Yesterday I gave her 2 tablespoons of coconut oil, then finally about 2 oz of prune juice right through her g-tube. She wouldn't drink it for me, so now I have an advantage and can put things right through that magical little tube, even medicine! Boy will that make life easier sometimes. We have a home health nurse that will come by once or twice a week, or anytime I need her really. I am actually quite proud of myself for figuring the feeding pump out, and the way the tube works virtually by myself. The only thing the guy from the medical supply company taught me about the pump was basically how to set the rate, and how to power it off. I watched the nurses very intently anytime they would do anything with her tube, and I absorbed it all. I'm like a sponge that way, thankfully. We even had a clog in the line on our first night and I handled it like a pro! I didn't freak out, stayed calm, and worked it out all by myself, not once even thinking I may need to call the nurse. Yes, I am very proud of myself for that, too.
  I am proudest though, of my amazing, beautiful, perfect, princess Willow. She is handling all of this with so much bravery and strength that I don't think I've ever admired another human being more than I do her. Her courageous little soul makes me so incredibly humbled. Every time she looks at me I can just see the way our Heavenly Father is working through her, she touches peoples hearts, really touches them all the way to their souls. I thank Him every day for giving me the privilege and honor to be her mother. I also pray that He gives *me* the strength and direction I need to help her get through this, although she doesn't seem to need much of my help, she is the strongest girl I know.

After surgery

  Yesterday after surgery was unfortunately a very eventful day. Usually after surgeries, everyone is hoping for exactly the opposite. That wasn't to be for Willow it seems. It started out after the first dose of morphine at 10am. Her face flushed, and we were concerned it was an allergic reaction. Thankfully it didn't spread to the rest of her body, but the nurse had already paged the resident dr and he discontinued the morphine (I didn't find this out until MUCH later, I'll get to that in a minute) Then her temp started rising. Up to 99.4, then 99.6, 100, then finally 100.4. This was around 2 pm. Nurse finally gave her TYLENOL, no codeine, nothing else fancy for pain, plain old tylenol. Then the resident comes in, and I ask him why she was only given tylenol, he says that he got a call that *I* thought she was having an allergic reaction to the morphine. I said yes, that was how her reaction to the amoxicillan started, with a red face that moved onto her whole body, and that the redness from the morphine never spread. I asked him what he was going to do about managing her pain when she woke up, he said, well it seems to be managed fine because she is able to sleep. He said he would make sure she had something for the pain, then left.
    5pm, she wakes up, telling me she has to go to the bathroom. I knew if i tried to move her it would be much too painful for her as she hadn't had anything for 6 hours besides Tylenol. I asked about pain meds and that's when the nurse told me that the dr had discontinued the morphine and put TYLENOL in its place, NOTHING ELSE (hence only the Tylenol given at 2pm) Willow kept crying she had to go potty, so I tried to gently lift her and she screamed, begging me not to pick her up again. By the grace of God this is when her GI dr walks in the room. She asked what was going on, and I told her that she hadn't had any pain meds since 10am that morning. She demanded to know why, and said she should have constant meds for 24 hours following the surgery. She went out into the hallway demanding to know why the patient in room 44 was in pain and that it had not been addressed. Apparently when the nurse paged the idiot resident again asking about meds when the potty incident happened, he called in something else with TYLENOL in it, well she had just had Tylenol a few hours before and couldn't have it again so soon. Eventually after about 20 minutes of Willow crying, telling me how bad she had to go potty (she refused to go in her diaper or a bedpan, believe me I tried to get her to) and with the GI dr handling it, in comes the nurse with the morphine, hallelujah! Within 10 minutes she was smiling and we were finally able to take her to the bathroom. This girl is so stubborn, she held it in for so long, that she peed for probably 2 minutes straight. No lie. This isnt where the the events would end.
   The nurses come in, and say wow, she's like a different child! She is smiling, talking, pointing out funny commercials to me, and is pain free. Then at around 9pm she starts to tell me her belly is hurting again. I call the nurse, who tells me the (idiot) resident dr called her in Norco. It's hydrocodone and Tylenol combined (this is what he called in during the potty incident) While I'm wondering, again, what happened to the morphine. The nurse tells me this is a strong narcotic that will help her pain, so I say ok. She gives her the norco, and within about 15 minutes Willow starts crying about wanting to go home, wanting to not play in here, wanting me to move my head on the pillow a different way. Basically acting exactly how she does when she's had an allergen, crying about things that make no sense. I press the nurse call button. The assistant comes in, I ask her, is there any corn or soy in the Norco, as Willow is allergic to both. She says oh no, it's listed in her chart that she's allergic, and if the was any in there, dr would not have given it to her. I ask her to find me the ingredient list, she says absolutely and goes to try and find it. I log onto Facebook, and post in my corn allergy group, asking if in fact the norco has corn in it. Within 2 minutes someone posts the ingredients, and surprise surprise, 2 of the inactive ingredients are corn derivatives. Nurse comes back, I show her the list, she pages dr for Benadryl and to cancel the norco because she is ALLERGIC to it. Willow finally cries herself to sleep. I am waiting, and waiting, and waiting. I go into the hallway, the nurse says I paged him over and HOUR ago, no response. She pages him again and plainly says (she told me as she was typing) I need Benadryl and morphine. 5 minutes later she comes in with both. Willow sleeps peacefully all night.
   This morning, I call nurse and ask for her meds since I know she will need them when she wakes up, and she's in here within 5 minutes administering them to her. Idiot comes in and presses her tummy, ask how she's doing and I literally don't say a word to him. He says she shouldnt need narcotics much longer, asks if can she have nsaids, like ibuprofen, I say mm-hmmm. I already know that her GI dr will make sure she has morphine, and oral morphine to go home on, she promised me she would take care of that. It took a LOT for me to bite my tongue, because at this point I am going way over his head to the attending, and higher if I have to. This man should not be practicing medicine, period.
  She is still sleeping peacefully, and today I will learn all about how to use the pump and the feeding tube. I'll be praying today is a very uneventful day, as well as the next days to come.

Out of surgery

     Surgery took about an hour, and another half hour for her to wake up so we could go in and see her. Of course she was screaming for me. As soon as the nurse handed her to me she started to calm down. Then she cried telling me her belly hurt and wanted to take her belly button off :( Nurse gave her more pain meds then she fell asleep. That's when I cried, and cried, and cried some more, waiting until she was asleep so she wouldn't see ME hurting. They wanted me to put her in the crib to transport her upstairs, and I told them no, that would make her extremely upset and that I would carry her while they pushed me in a wheelchair. They grudgingly obliged. She was calm and awake the whole ride up.
     Once we got upstairs I sat in the chair still holding her, she complained of pain again, so they gave her morphine, which seemed to help. Then her face started to flush and her body temp started rising. Nurse took her temp and it was 99.7. We put a cool rag on her head. She said that made it feel better. Then she asked me to lay down with her. I told the nurse that I would be climbing up in the crib to lay with her, that I was not going to let her lay by herself, because again, that would have made Willow super upset. She always wants her mommy next to her, and she knows I always will be. Apparently the hospital has a policy for any child under 3 to be in a crib, and not a regular bed. They do however, have a waiver that's available for a parent to sign if the parents want their children under 3 in a bed. Obviously the reason for us would be so its more comfortable for me to sleep right next her. I would have gladly slept in the crib if there was no other option, I've done it before. Thankfully now she has a nice big bed that we both can fit in. She is resting now, her face seems less flushed, so I will let her sleep. My absolutely, perfect, amazing, courageous, princess ❤
 

In surgery now..

It's 8:03am, she just went back to surgery about 20 minutes ago. The second I walked into the waiting room I burst out I tears, wondering if this is a huge mistake. All the doctors kept saying "she looks fine" when they asked why she was getting the tube. My husband said to me that I could go stop them, there was still time. While part of me wanted to, another part wonders if I would just be delaying the inevitable. Better to just get it done and over with so we can move on. I figure worse case scenario, we realize later we made a mistake, we just take the button out and it will close on its own. I know this is just the panicked mama bear in me talking right now, but I want remember exactly how I felt, truly felt. Here we are just before surgery.