Wednesday, April 3, 2013

Hitting a Wall

I have so many updates it's hard to decide where to begin.  To say the last month has been tough would be an understatement.  There are so many obstacles and emotions right now, and at this moment, I have silent tears streaming down my face. 

Last week, I was changing Gavin's ostomy bag and noticed that his stoma was about twice the size it usually is.  I took a picture and sent it to our pediatrician, who called me immediately and instructed me to stop feeding him and take Gavin to the ER.  I tried to focus and stay as calm as I could while getting both Lorelai and Gavin dressed and getting a diaper bag and snacks ready for Lorelai.  Going back to the ER with both kids and no idea what to expect was unnerving and overwhelming, but it was my only choice so off we went.  In the ER, a doctor from general surgery came and looked at Gavin's ostomy and said that Gavin had a hernia and a prolapsed ostomy, and that he may need to go into surgery fairly quickly.  She took some pictures and sent them to the attending surgeon on call, and the attending felt we could wait until our surgeon saw Gavin later during the week.  So from Sunday through Thursday of that week, I thought Gavin would be going back into surgery, and of course, figured Chris would not be able to come home for it.  The surgery to close Gavin's ostomy ideally will happen when he reaches 20lbs and it will be a very physically demanding surgery for him.  Not that any of them haven't been, but this will fall near the realm of his open heart surgery as far as the strain and pressure it puts on his body.

I tried getting in touch with Chris to let him know that Gavin was in the ER and they were talking of possible surgery.  I couldn't get in touch with him for about two days, and when I finally heard from him, he told me that he had gone into surgery because he broke his hand during PT.  You may have felt the earth rumble that day.  I was mad at him for not telling me,but apparently he was sent to the hospital and within about an hour of being there he was in surgery.  I was LIVID that his command knew that he has a critically ill son and didn't feel the need to notify anyone.  Had Gavin actually gone into surgery that night, or if I needed Chris's input on a big medical question/decision for our son, I wouldn't have been able to have that conversation, because again, the people in this chain of command have no moral compass or professional due diligence.

A few days after the ER visit, we went to see the chief of surgery, who did Gavin's operation in January.  He said that Gavin's intestines were prolapsing, or coming out of the ostomy, because he was so severely swollen during surgery that the ostomy was not able to be made small enough to keep everything in.  Gavin has a cold, so when he coughs really hard, he basically coughs some of his intestines out.  There were 3cm of Gavin's intestines out at that point, and the surgeon just reached over and pushed them back in.  I was certainly not ready for that.  He would like to hold off surgery as long as possible, because the bigger Gavin is, the longer his repair will last.  That being said, if he needs to go sooner then we have to do what's best for Gavin.  One issue with more of Gavin's intestines out, is that it is much harder to get an ostomy bag over everything.  That process is hard enough with only one set of hands, but you add more insides on the outside and a bulge under the skin as he pushes them out and the process becomes nearly impossible.

Yesterday, I took Gavin back to the doctor because a lot more of his intestines came out. 11cm to be exact.  This time our pediatrician offered to help out to save us a trip to the ER.   She said that she would help push them back in, but that she would try to mimic what I would need to do since I'm by myself and would only have my one set of hands.  (For the record, how to push your child's intestines back into his body was not mentioned in What to Expect When You're Expecting).  She used her forearm to hold down Gavin's legs, while her left hand held the sides of the stoma and her right hand slowly pushed the intestines back in.  Then I took over putting the bag on, but it had to be a fast transition because some intestines came back out.  What wasn't taken into account was the nurse holding Gavin's arms and me holding his bottle while the doctor pushed the intestines back in with her two hands.  That's three sets of hands, not one.

The whole process and concept freaks me out, but again, I have no choice but to learn how to do this and figure it out on my own.  The whole way home I thought about how the Marine Corps has decided that we don't have a hardship or emergency situation.  I would really like to ask those people when they last pushed any human being's intestines back into their themselves.  I guarantee the majority of those people making decisions that affect the well being of my family could not walk a single day in my shoes.  That same night, I had to push Gavin's intestines back in twice on my own.  That's tough.  It is certainly uncomfortable for Gavin, whether they are coming out or getting pushed in and to see his pain is heartbreaking.

Today I got an email from someone at Chris's command citing the Privacy Act and PII as a reason they didn't tell anyone that he was in surgery.  There is an exception to the Privacy Act when it comes to health or safety issues, and a MARADMIN that allows for notification of next of kin in the event a Marine is hospitalized or goes into surgery.  I was livid after reading this email.  For one, the command assumes I am not educated and would actually believe that PII is a reason to not disclose a surgical status.  PII involves information like a social security number, date of birth, address, etc.  So I replied back with some MARADMINs and Marine Corps Orders of my own and stated that insulting my intelligence or outright lying to me was not going to excuse their behavior.  After all they have put us through, they have the audacity to try to talk policy, procedures and acronyms as if it would confuse me and shut me up.  Man, did they assess me wrong.  I don't know that I will ever be able to excuse what they have put us through.  I think back to all the feeding tubes that I've put in on my own.  All of the ostomy bags I've changed on my own.  All of the nights at the hospital, ER visits and doctor's appointments I've done on my own.  And now putting Gavin's intestines back into his stomach on my own.  And the best this command can attempt to do is hide behind policies and procedures as though no exceptions exist and assume that I will accept what they say as truth.  My anger at this situation grows exponentially every day.  Had anyone in the Marine Corps been looking out for Chris, he would have been here with us through all of these trying times per the policies and procedures that Marine Corps has put in place for situations like ours.

So on to the tears for tonight.  I got a message from our babysitter today that Gavin's bag was leaking and that a lot more of intestines seemed to be out.  So when I got home from work, I started to prep everything for pushing Gavin's intestines back in and replacing his bag.  The poor kid was so uncomfortable.  I spent about 45 minutes holding Gavin's intestines and trying to slowly put them back in as he screamed and tried to push them back out.  During this, Lorelai is crying because she doesn't feel well and she keeps saying her tummy hurts and asking me to hold her.  I obviously can't hold her and Gavin's intestines at the same time.  She calms down and gets her foot stool so she can climb up and hold Gavin's bottle for him.  I hate that my two year old has to help me with these things, but she does her best and is a great little helper.  Of course, Dora wins out on the help so she went off to watch Dora.  I tried forever to get Gavin's intestines in.  He was squirming and crying, poop was coming out and going everywhere and when I tried to put a bag on, the intestines came out a little bit again and I couldn't seal it so the process had to start again.  Right now, his bag still isn't sealed right, but after 45 minutes we both needed a break.

As I was walking downstairs with him, he coughed and  that same 11cm came out again.  I just broke down.  Halfway down the stairs with Gavin in my arms, I just sat down on a step and held him close to my chest sobbing.  I was sobbing that I couldn't help him.  That I couldn't figure it out.  That I was hurting him and that he has to go through this.  That I couldn't soothe him and care for his wounds at the same time.  While I was crying, Lorelai came and sat beside me on the stairs and started crying because her tummy still hurt.  Gavin was still crying in discomfort from having just pushed his intestines out again.  The three of us were a hot mess having our breakdowns together on the stairs.

Then, Gavin's ostomy started bleeding so I called the on-call surgeon and spoke to him for about ten minutes.  The bleeding is normal with so much prolapse, but he said we need to come in tomorrow to have Gavin re-evaluated now that he has so much intestines coming out.  It's significantly more than when we went to see our surgeon last week, so now the surgery talk is back on the table.  Gavin is almost six months old, but he's still the size of a newborn so he needs all the blood he can keep.  Especially since he usually requires a blood transfusion prior to surgery anyways.

There are many days I somehow stumble and make it through ok.  But today isn't one of those days.  Today things just seem like too much.  The hot water heater broke this week, both kids are sick, having to put Gavin's intestines in on a fairly regular basis combined with working full time, doing laundry, cooking dinner and attempting to keep the house somewhat clean is just more than a one person battle.  I have tried so hard to be strong and just keep pushing through the days these past six months.  But today was a breaking point.  And we're only halfway through this deployment.

I know I will wake up tomorrow and start a new day.  That means that I will have survived today's challenges and hardships.  Of course, tomorrow will have the same obstacles, but I will just have to take a deep breath and remind myself of the other impossible days I have made it through.  But for the rest of the night, I will continue to hold my little miracle as he sleeps and whisper my apologies for hurting him and tell him over and over how much I love him.  At some point the tears will stop, but for now the immense love I have for my kids, combined with the frustration and overwhelming nature of our lives right now will have a much needed release.  It feels like I have hit an emotional wall.  But, I will kiss them both goodnight and wake in the morning to my two amazing blessings, take a deep breath, and fight through another day. 

Gavin has fought enormous battles through fatigue, weakness and a battered body.  He will get no less from me.  I'm exhausted, broken and dejected at times, but I will fight through it all as Gavin has.  We fight for each other and gain strength from each other.  We cry together and survive together.  And tomorrow we will laugh together and thank God that we have made it another day to walk our path together.


  1. OMG, Mary Beth. You are such an awesome mother! I can't even imagine what your going through and I won't pretend to feel your pain because there is no way I could even try to put myself in your shoes. But I do know that God has a purpose and reason for everything he does, I can only pray that he continues to strengthen you and Gavin daily. Your story, Gavin's story, is so inspiring. From now on, you and your family will be in my prayers and I now that god can and will move on your behalf. Just keep the faith and don't give up for a second. I love the strong, determined, loving person you are and I thank god that Gavin has a mother as strong and patient and loving as you.

    Love you MaryBeth,

    Sylvia M. Anderson
    Former Cheer Dynamic Rocket team mate

  2. Marybeth..... I'm crying for u right now. There is a very very special place waiting for u in heaven. I have never met a woman as strong and committed as u. Keep Ur head up. God will take care of u. Have faith. U are a model for woman and men everywhere. If u need anything please don't hesitate to call and ask. Don't matter if its just another ear to cry to. I'm here. 9106385738


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