Friday, April 12, 2013

Filling the Gaps

During Gavin's last hospital stay at CHKD,  I met another mom with a son who had some of the same health issues Gavin has.  She told me that God does give us more than we can handle sometimes, but during those times he fills the gaps with others who will help us through.  This takes me back to the force of guardian angels surrounding Gavin and our family.

It wasn't even two weeks ago that I broke down on my stairs at being so overwhelmed and feeling like I couldn't make this journey on my own anymore.  I sat there holding Gavin with Lorelai sitting beside me, and broke at the reality of not being able to do this on my own.  And then the most amazing thing happened.

I literally saw a jaw dropping force of guardian angels rise up to fill those gaps for us.  Within hours, there were phone calls of "Tell me what to do." "We want to help." "What do you need?"  There was a site set up for people to bring meals during the week to make our nightly schedule a little easier.  There were people from out of town asking how to help.  There were friends of friends who said, "I'm here for whatever you need."  Not that people haven't offered to help before, but this was the first time I had a spirit to be able to accept that help.  I don't even know the vast majority of these angels who have come to help us.  But I do know, that every single person has been hand picked to come into our lives and help us in times when we are not strong enough on our own.

The sweetest couple came over to deliver dinner one night, and mentioned that Gavin was on their church's prayer list.  I always love hearing stuff like that.  Gavin is a very special little boy.  He has churches all over the country praying for him!  An old family friend who happens to live in the area, came over to help with a bag change AND some much needed adult conversation!  To just have a moment that wasn't about work or the kids was a rejuvenating.  Last night, I was just beginning to have trouble with a bag change when my doorbell rang with an angel bringing dinner, and an extra set of hands to help with a bag change.

One morning this past week, I opened the door and there was the sweetest card and two stuffed animals on the front porch.  The note said it was "something to brighten Lorelai and Gavin's day."  As a mom, seeing love and consideration like that for your children makes your day too.  Lorelai put Gavin's gift in his carseat, and she did so for the rest of the week every morning we were getting ready to head out for daycare.  She has taken her toy to daycare every day too.  I asked her if she knew who brought her the present, and she said, "the Easter bunny rabbit."  I had to laugh.  I told her no, that an angel came by our house and left us a little piece of love that day.  Now everytime she holds that toy, or points to Gavin's, she says that it's from the angel.  Just tonight, I got a message that two sweet boys wanted to mail us a picture to make us smile since we were having such a hard time.  That is so heart warming. 

I cannot express enough how comforting this has all been.  I hope that everyone knows how much this means to our family, and how grateful we are for this powerful force of guardian angels.  Things have gotten to a point where I cannot physically do it all on my own.  But as soon as I fell down, our family was surrounded by an army that picked us up and are carrying us until we become stronger and learn to handle the weight of these new challenges.  There is darkness and apathy that makes our journey more difficult.  But I have to say, that those darkeset times are no comparison for the light and grace that floods our path and brings us through the harder days.  For the hard times, tears really only come on the days that I feel like I cannot do what is best for my children on my own.  If my life is harder, oh well.  But when it seems as though my kids are suffering, that is heart wrenching.  But I can never control the tears that come from someone's kindness and generosity.  You may think you just cooked a meal.  Or dropped off a stuffed animal.  Or wrote something encouraging.  Or mailed a picture.  But those actions have so much impact on our lives that I could never appropriately thank everyone for exactly what you have provided.  More time to spend with my kids.  More smiles on their faces.  One less item on the to do list.  Hope.  Love.  The beauty of humanity.  Kindness.  So to all of our guardian angels, to all of you who have followed our story and given us strength, thank you for filling the gaps when our burden was too heavy to carry on our own.  Thank you for surrounding us in love.

Friday, April 5, 2013

"The New Normal"

I took Gavin into the Pediatric Surgery office yesterday to have his ostomy looked at again.  I was still pretty overwhelmed from the night before, so as soon as I went to check in the tears just started flowing.  For those of you who have not spent time in a children's hospital, the MINUTE you start losing it you are surrounded by staff members and other parents giving you tissues, hugs and words of encouragement to keep hope and faith and stay strong for your kid.  It was the same way at Duke.  When you are surrounded by staff and parents who see kids struggle every day and share the commonality of having a "children's hospital" child, there is unspoken empathy and understanding that surrounds you.

This is hard.  Really hard.  It would still be hard if Chris were here, but certainly more bearable.  The surgeon came in and looked at Gavin and said that having that 11cm out was "normal."  And that his intestines bleeding into his ostomy bag was "normal."  He gave me some different methods and tips for pushing Gavin's intestines back in, and mentioned how "normal" it was for them to come out and get pushed back in.  It may be normal for a surgeon who is looking inside the human body on a near daily basis, but for me, as a  mom, it is NOT normal.  Gavin's intestines are still pink and the surgeon felt that most of Gavin's appearance of discomfort is because he is sick, because he has this bad cough where he coughs so hard he pushes everything out.  I'm always learning new things.  The surgeon said that we have thousands and thousands of nerves in our hands, but only one in the intestines.  So Gavin doesn't really feel me touching them, he probably just feels the pressure of me pushing on his stomach.  That helps some....but only if I repeat it in a way that equates to brainwashing.

Gavin could go into surgery to make his ostomy smaller, but without a life or death situation requiring it, they don't want to put him under anesthesia with his heart condition until they absolutely have to.  As long as his intestines are healthy, inside or outside of his body, they don't want to go to surgery.  So our new normal is a LOT of intestines visible on the outside of Gavin's body.  I was going to post a picture, but then I thought against it for those who may feel queasy seeing it.  The surgeon also said that I could put sugar on the intestines and they may go in some on their own.  That gives me a mental picture of a slug and salt, therefore I do not think I will be putting sugar on Gavin's intestines.

As I was getting Gavin dressed to leave and the tears of being so overwhelmed and alone during this kept flowing, the surgeon patted me on the shoulder and said, "Hey Mom, you realize that you are probably over qualified for this right?" I corrected him with under qualified and he said, "No, you're really over qualified to care for this.  If you can place feeding tubes and go through the past six months as essentially a single parent with all this kid has been through, then this is nothing.  No sharp objects around the intestines.  Push them right back into the opening.  You're just going through a rough patch.  It will get easier.  It has before, and it will again."  I still say I'm under qualified for this, but I will take the motivation from his words!

People often ask how they can help.  As a naturally independent person, it is hard to ask for help.  Near impossible to accept it.  I can't even articulate what I need most days, besides "another parent?"  I really do feel like I get through most days just fine.  The hard ones are the darkest of days, but I get through those too.  I feel ashamed when people talk about how strong or positive I appear to be.  I don't want it to seem like there is always strength and good energy.  Some days there is immense anger.  Some days heart breaking tears.  Some days indescribable fatigue.  Some days all consuming negativity.  Most days, though, simply waking up to his face and holding my 10lb (ALMOST 11 lb) miracle is all the strength and optimism I need.  I may feel like I fail sometimes, but I know without a doubt that he knows that I love him and I am always there for him.  And there are always people fighting bigger, tougher battles than we are.  I am grateful that we aren't in the hospital right now and that, although this current challenge is unnerving,  Gavin is as healthy as he can be.  I am grateful that we are able to put food on the table for our kids and a roof over their heads.  I am grateful for an every growing support network and love for my son, even from people I may never meet.  I am grateful for every message of encouragement that people take time to send our way.  I am grateful that we have so many lifting us in prayer.  I am grateful for those who have travelled a difficult journey before me and are able to offer words of wisdom and evidence of surviving it all.  I am grateful for every breath that Gavin breathes and that he has a big sister who will always watch out for him.  When Gavin cries, Lorelai will go over to hold his hand and say "It's ok Gavin" before giving him a kiss. 

Gavin's story is one of real struggle.  Highs and lows.  Triumps and defeats.  Medical miracles and nights sobbing on the stairs.   But his story, his life, is beautiful, amazing and inspiring.  To have beat the odds he has and to be so strong through days when his intestines are hanging out of his body is nothing short of incredible.  When he was born, he couldn't eat or breathe on his own.  When part of his colon died, he couldn't eat or expel waste.  Well, today, THIS day, he eats just fine, his oxygen levels are great and his ostomy is working. 

I am simply adapting to a new normal for our lives, and I know that at some point, I will look back on these days and they will be more we have conquered and moved beyond successfully.  This ostomy will not last forever.  One day his intestines will be secured back into his body and there will only be a scar to remind us of this battle.  It obviously won't be today, but I'm sure something during this journey is meant to greatly bless our lives or that of someone else who comes across our story. 

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.