Written on APRIL 15, 2015
excerpt from my journal October 1, 2014.
“Doctor’s meeting today! God’s Plan. His WILL. Matthew is still fighting on C-PAP. He is so swollen, it’s hard for him to breathe. But he’s a strong little boy. Doctor’s meeting was with Pediatric surgeon, Nephrologist, NICU Doctor, and two case workers. No one has hope. I gave them my speech on FAITH and HOPE. I told them that we weren’t giving up on him. And we weren’t going to let any of them give up on him either.”
In the pages following this entry, are words. At the time I don’t think I was able to fully express in complete sentences what I was thinking. I couldn’t verbalize what I really wanted to say…. or write. And I wrote words. Words like hope…faith… my son… memorize him… breathe him in… remember his face… I remember this day like it was two minutes ago. It is engraved in my mind.
Matt and I sat at the head of the large rectangular table. He sat to my left. On the right side of this table sat the pediatric nephrologist. Immediately to Matt’s left was the pediatric surgeon. Then the NICU Doctor, then the two case workers. All females except the nephrologist. (For sake of this entry, we will call pediatric surgeon Dr. B and nephrologist Dr. C)
The meeting started out with small talk with the case workers while we waited for all the doctors to show up. The first to arrive was Dr. C and then the NICU doc. Matt and I entertained them all and chit-chatted with them about Matthew’s twin… about his 4 other sisters… we would glance at each other during the awkward silence, knowing what was about to come.
Our amazing primary nurses prepped us for this meeting. A couple of other NICU friends prepared us for what a “meeting” usually means. Every single person told us TO FIGHT. Fight for our son. Don’t let them persuade us in making “decisions” that we don’t want. No matter what they say… don’t give in!
So we were ready. We had a family prayer before leaving the house… we were in constant prayer on the ride to the hospital.. we prayed while we were bedside with Matthew… and we had as many people as we could have, praying and fasting with us! Needless to say, Matthew was well prayed for.
Dr. B, the surgeon, finally shows up and sits next to Matt. Her eyes looked exhausted. She was coming from a surgery. She looked tired and as if this meeting was NOT where she wanted to be. The case worker started the meeting saying that they believed it was time that we all meet and all get on the same page as far as care for Matthew. NICU doc. begins talking about the problems Matthew was born with… she was talking about all the problems he has developed and was telling us about how he is now. And none of it was good! It was like she made up a list of all the bad things… and that was that.
Then Dr. B continued by saying that this last surgery was it for Matthew. Unfortunately due to poor planning on the NICU’s part, Matthew had two surgeries in less than one week. Being intubated, extubated, intubated, extubated… his scar tissue… his fragile little body… it was all too much for him. He was retaining more and more fluid because his kidneys weren’t working. And because he had surgery, they couldn’t start dialysis. The one night they did, all that came through the tube, was blood. Dialysis couldn’t continue until he was healed… and from what they see… he was never going to be healed… he was never going to get better.
One of case workers began to talk about Palliative care. Basically take Matthew home with us… give him large doses of medications so he doesn’t feel pain… and let him die. My head was spinning throughout this meeting. I got dizzy a few times and my head was in such a haze. I looked at Matt a couple of times and he had his elbows on the table… hands balled into a fist… covering his mouth. It was obvious he was angry! It is not often he gets angry…. but this day, he was angry.
Out of respect, I let them all talk. I made eye contact as if I were listening. I nodded my head as if I were in agreement. But I wasn’t. My brain was about to explode and my heart, so heavy, was praying for myself. Praying that I don’t yell. Praying that I don’t get angry. Praying I don’t say something that I will regret. Usually it’s the brain that does this… but at this moment, my heart was holding me back.
After about ten minutes of everyone talking to each other about the best way to make Matthew “comfortable”… I had had it!!! I was done listening to these people tell me what was going to be the best way to let my son die. I was done listening to them tell me Matthew was NOT going to pull through this. I was done listening to them say that there was no hope for him. I couldn’t take it anymore.
I slapped my hand on the table and said “NO!” The room was silenced. I took a deep breath and held my tears in because I wanted them to see that I was serious… I wasn’t going to get emotional!!! Now was the time for me to STOP CRYING and (for lack of better words) MAN UP!
“I am NOT going to give up on my son!” I said, “I prayed for a son! I was blessed with a son. And I am NOT going to let him go that easily. And I will be damned if I let any of you give up on him either!” (yes, i said it.) I was angry. I was hurt. I was mad. I was insulted. I was devastated. But I was determined. I was hopeful and I was faithful.
I began to give them some of what I initially told my maternity doctors when I was pregnant and I was begging… BEGGING… for them to do something to save him… I said, “GOD IS IN CONTROL! NOT YOU! Our faith… our family… our kids… everything we have is in God’s hands. You can’t tell me what is going to happen tomorrow. You can’t predict the future. But God has our life pre-planned already for us. Everyone told us at that first ultrasound that there was a huge chance that Matthew wasn’t going to make it much longer in my belly. Then they said he wouldn’t survive any kind of intervention. Then he couldn’t survive the first surgery in utero…or the second surgery in utero… Then they said he wouldn’t survive birth… he wouldn’t survive the first few hours.. the first day.. the second day.. the third day.. fourth.. fifth.. sixth.. first week!!!! It was not until his seventh day of life when doctors finally said…. ummm ok. well I guess he plans on sticking around some… we are going to start a care plan for him.” (YES!! THEY SAID THAT!!!)
For being a faith-based hospital, there wasn’t much of it around there. And I get it. I get the sickness and the disease.. and especially the sad and untimely deaths of a lot of babeis… I get it! That’s real. That’s real life… I have seen it. I have been in the room when other babies have taken their last breath. I have seen parents cry out to God… WHY?!?! WHY MY BABY?!?!?! I WAS THERE!!! I heard their cries. I have seen being escorted out of the room. I have seen a photographer come into the NICU room and take a baby’s last photos before she was buried. I have heard the nurses talk about this baby and say that the parents were so distraught they couldn’t be here to be a part of these ‘last’ photos. I know what they are thinking when it comes to Matthew… no hope.
But I continued…. “not Matthew!! Matthew is going to make it. God promised me a son. And although He never promised me time… I know in my heart, it is much longer than this. I am his mother… I AM NOT GIVING UP ON MY SON. AND I WILL NOT ALLOW YOU TO EITHER. If ya’ll need to send us to another hospital, by all means.. let’s go! Because I will NOT let you…you..you.. or you give up on my son.” I said, “THANK YOU!!! Thank you for helping him and caring for him this far!! Thank you for doing everything in your power to help him live this long! But I can’t let you give up on him.”
I sat down… and Dr. C, the nephrologist, said… “Let’s take one day at a time.” Then Dr. B. says “There just doesn’t seem to be any hope for him. This is his second surgery in one week and nothing seems to be working. And if he were to need another surgery, I won’t do it. And I know no one on my team will do it either.” We all kind of looked at her all crazy… and she kind of just shrugged it off and said, “Well, you can ask them, but then they’ll be asking me about it and I just know they wouldn’t do it.”
Dr. C said again… “We will just have to take it one day at a time.” I said, “Yes. Thank you. That’s all we want. HOPE. Let him be. Let him fight. Let him heal. Let him get better. Give him a chance and give us some kind of hope.”
And then thats when Dr. B started talking about Matthew’s brain bleeds and kidney transplant and how because we don’t know how he will be neurologically, that Matthew wouldn’t even be a good candidate for a kidney transplant. So what was the point? (YES! She went there!!)
And that’s when Dr. C (being the Kidney doctor) said, “How can you say that?! We give kidneys to down syndrome kids… to kids with other disabilites… you can’t say that he wouldn’t be a good candidate because of brain bleeds that we don’t know what kind of affect it will have on him in the future!”
(This is where I think Dr. B struck a nerve with Dr. C, because they went back and forth about kidney transplants and who gets them. Dr. B just kept saying.. Matthew wouldn’t get one. And Dr. C said that he was on “The Board” and that, in his experience, Matthew would be a good candidate.)
SO… I took a deep breath and I finally started crying. I couldn’t hold it in any longer. I lost it… but it was a fed up cry… a frustrated cry… an angry cry… and I think everyone felt it. The room was silent again and the case worker asked if Matt wanted to say anything.. and he said no, that I had said everything that needed to be said. Dr. C ended the meeting with saying, “I think we can all come to an agreement in saying that we will take one day at a time and we will let Matthew lead the way. And everyday we will have hope.”
Dr. B jumped out of her chair and walked out. Very unprofessional. We took it as if she was just tired and cranky. She lost this fight. Dr. C and the NICU doctor gave us hugs and reassured us that they were going to continue to do whatever necessary for Matthew. The NICU doc surprised me when she said that she will be praying for Matthew. Maybe I made a believer out of her… I like to think so. I like to think we made a believer out of the social workers and case workers as well.
After that meeting, Dr. B came down bedside a few times to “check on him” and see how he was doing. I felt as if she was checking on him to see if he had died yet. So I actually told my nurse that I do NOT want her to come bedside anymore. She has no hope for him anyway and she clearly stated that she wouldn’t do anything to help save him from here on out… so why come down? So our nurse, brave as she was, one afternoon told her that we did not want her bedside to check on Matthew any further. And from what I heard, they got into a little heated argument over it. But i the end, we are his parents, and we don’t want her near him… we KNEW Matthew wasn’t going to need any more surgeries while in the NICU…we KNEW he was going to start getting better… we just KNEW. WE HAD FAITH!
And now here he is. Praise God. If there is anything I can tell the world about… it is that God is in control. All you need is FAITH and to never give up HOPE!
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