Grief Series

I am doing a series so to speak on grief at my other blog

http://siscaboo.wordpress.com/


I have never shared the day that JT passed away so, I am doing it over there. If you would like to read the whole story about JT you can go here: http://www.caringbridge.org/visit/johnathanpoling

I am just having a hard time putting the rest of his story up, because well, it is hard, that is a bad excuse but, it is the truth.

Thanks,

Bobbie

Recovery Part 2

His incision was again leaking stool and his kidneys were trying to shut down. He was having one blood transfusion a day sometimes twice.

The surgeon interns where checking on him and realized that there looked as though there was fluid under his incision. They ended up opening it up and it drained a lot of dark blood. Dr. L. Who was a resident in the NICU told me all about it. They put in a penrose drain which basically looks like a little paper tube and it just drains to gravity. JT also had pressure dressings and a wet to dry dressing on his incision because now the incision was open and they wanted him to heal from the inside out.

Ok, I am not going to lie. It was gross. Stacy looked at it. I didn’t. They would have had to of scraped me up off of the ground. But, I did when I could, hold his hand with my eyes closed.
After the blood was drained, he was so much more comfortable. JT was still on the vent but, getting much more better. He was still having problems with his kidneys and not hardly urinating. So, they inserted a catheter to collect it and were testing it.
He had one bad night were his blood pressure kept dropping so, they gave him some dopamine to regulate it, this would also help with his pee issues. His kidneys were trying to shut down but, with the dopamine, it helped regulate his blood pressure and urine output.

Here is an excerpt from my CaringBridge Journal at that time.

Ok, here is what is going on. They decided not to do surgery. They are going to watch and wait.
He had a rough night. His blood pressure dropped and he is on dopamine to bring it up. He isn't giving any urine output and that is unusual because of the lasix they gave him. He should be peeing like a champ right now and he isn't. His potassium is high and sodium is low. So, they gave him some kind of enema that will help with that. Plus, they gave him a saline bolus to see if that will make him pee. They also inserted a catheder (my goodness how do you spell that?)
The surgeon is up there right now looking at him and the dr and the intern and the kidney doctor and they are all working on a plan let's pray they fine one that works.
He is not in any pain. They upped that too.
I can't think right now of what else they did. He is just really sick right now.
Vicky was his nurse last night and she said she loved on him and gave him a pep talk and talked him through everything she had to do to him and that it was to help him not hurt him. I really love that lady. She is awesome. Well, that is all for now.
All?? Really that is alot.


TUESDAY, JANUARY 23, 2007 08:36 PM, CST
Johnathan's incision opened up and the surgeon took out all of the stitches and now they have wet to dry dressing on it. They are going to put a wound vac on tomorrow.
But, he is peeing buckets and his blood pressure is stablizing.

WEDNESDAY, JANUARY 24, 2007 07:03 AM, CST
Johnathan had a relatively quiet night. They turned his oxygen down to 21% that is room air. They had to give him 2 extra doses of fentanyl and a dose of versil. He was in alot of pain. He is right now zonked out and not caring at the moment which is good. That is the way I want him. I don't want him to be in pain and panicky like. The wound vac goes on today and hopefully this will help him heal.

More on the Wound Vac later.

I think I am getting to the point where I can post some more of this up. I just sometimes get to where I am reliving it and it is a hard process. I prayed about it and I felt the Lord was telling me to take a break from it and I did. So, hopefully I am back at it.

Recovery part 1

When I got in to see him it was a relief. He was really sedated. The ventilator was doing all the work for him and I just whispered I loved him and that everything would be fine and he did great!!! I held his hand for a little while and just sat with him. I was really afraid to touch him because I didn’t want to hurt him. This surgery scared me that much. I was told he will probably be on the ventilator for a few days this time and they had a fentynal drip going for pain and it was at a high dosage because they wanted to keep him sedated. They didn’t want him to move at all.

The evening Stacy and I went up there to see him it was really scary because he was puffed up to twice his normal size which meant that he was retaining a lot of water. I mean to the point when they repositioned him you could see it move. And his eyes were bruised looking. He was in a lot of pain when they touched him to do his care, I seen him raise up off of the bed. He was trying to cry and pull out his vent. They gave him an extra shot of his fentanyl and it took a good 20 minutes for him to finally calm down.

I just wanted my baby back. The one that would just look at me like I was crazy. That I could cuddle and hold and make crazy conversation with. I am sure I mentioned this, but, people probably thought we were crazy. We talked and talked and talked to JT. I mean we held conversations with him about everything under the sun. I remember this one couple beside us. They always had a lot of family visit. I mean a lot like a family reunion up there. Which is great that means that they had wonderful family support. But, the baby would just sit in the crib and they would sit there and talk and hardly ever acknowledge the baby. We never stopped talking to JT. He was our world, our attention was all him. Unless he was asleep but, then that really didn’t stop us, we would wake him up. And 9 times out of 10 he wouldn’t care. I had to tell him about our day and what every one had been doing. Even when we were talking to doctor’s and such, we always included him. Talk and touch that was our motto. That was basically all that I had.

Back to JT. We took some pics while we were up there because even in the sedated state he was still hilarious. He was sleeping with his hand up to his face one finger on his lip as if to say….”wonder what they are gonna do this time?”

The surgery

Johnathan ended up going back to surgery at 11:00. I remember waiting and calling everyone because it was taking a long time. All of his other surgeries were quick. Well, relatively, an hour and a half tops this one took 4 ½ hours. I kept having the lady at the desk call back to make sure everything was ok and then the surgeons kept calling out to let me know that everything was ok. It was terrible. I had no one waiting with me and I just felt so alone. I wasn’t expecting that because well, I have really never had anyone go with me to my children’s doctor appointments before. My next to youngest had surgery and I did that on my own also. But, I felt alone. Believe me there were a lot of people in there they all had family with them and I just looked at them and just started feeling sorry for myself. Yes, I know make it all about me I know, but, sometimes yes, I am selfish like that. When the hours drug on, all I could think about was what if he dies in there and there is no one here with me? I don’t think I can handle that. I prayed for a while, you know when you hand it over to God, it really does lift a burden off of your shoulders. I just kept praying, asking him to watch over him and help him and give him the strength and the doctors the wisdom and skillful hands. I called Stacy next and we talked for a while. She comforted me a lot during this time. She kept a calm and cool head. Don’t know how she did it but, she did.

Finally, at 3:25 that wonderful pager started buzzing and I freaked out. I was afraid of what they were going to tell me. I had to pray to make my feet move. Otherwise I think I would have just sat there for the next 5 years. I handed the pager to the secretary and she said that he just came out and he is doing good. She told me they would be bringing him out in a little bit and if I would sit over there I could see him come out. Dr. Goodwin would be a few minutes and then he would come out to talk to me.

You don’t know the inexplicable joy and relief that went over me when I seen him in his incubator wheeled down that hall with all the beeping and the flashing lights.

The report from the Doctor was well, let’s just say weird, and unsettling. He said when he opened JT up he seen things he had never seen before. And this man has been a surgeon for over 30 years. They also found evidence that he suffered from NEC again and a lot of adhesions. Adhesions are scar material that is very painful. So, he cut him in 3 places and reconnected. And he did a tuck and flip and put fluid through 3 times to make sure that everything flowed and there were no leaks. (sometimes I tell you when he talked to me I felt like I was talking to an auto mechanic.)

So, it was after that, I made a mad dash to the elevator to go watch them get JT all settled and so that I could go see him for my own eyes. I just sat there on the little toddler table just watching a praying. I got a few waves here and there and smiles and a couple of thumbs up. Even if you know that there are going to be at least 10 people around your baby working on him to get him settled it is still a scary sight. I was mixed with apprehension, nervousness, and joy that he made it through but, still scared for the days that lay ahead. Recovery for JT was never nice on him. He got complication after complication and this time would be no different.

Just a note

JT's one year anniversary just passed on May 17th. We let balloons go at 5:15 the time that he left this world to go dance on clouds and play with the angels and most importantly to meet Jesus.

We also let a balloon go for a friend whose daughter is in Heaven with JT. I just know they enjoyed it and were having a grand time watching us.

I know I haven't blogged anymore of the story and for that I am really sorry. I meant to put a part of the story up everyday and by the time the one year anniversary was upon us, his story would be written down. But, well, emotions and life have gotten in the way. I am sort of a perfectionist when it comes to my writing and especially about this. I want it to be perfect. I want it to tell the story of my son in a way that he would be proud of. That probably makes absolutely no sense but, sometimes I don't, lol.

I also would like to show that we would have never made it as far as we did without our faith. God was walking with us. We also had some great prayer warriors on our side and their prayers helped JT pull through everything. Even his death. He left us with a smile on his face and he left us calmly. He was at peace and in my heart of hearts I was too because it was what I had prayed for. If he had to go I wanted it with dignity, love, and peace. Surrounded by family and friends. That was all answered for us. I remember holding him and just telling how much I loved him and it was ok to not fight. I am going to include my letter to him that I wrote on my other blog. Then starting next week I am going to be writing the rest of the story. As Paul Harvey would say.



Dear Johnathan,
You left us for a better place a year ago today. I remember holding you and telling you I love you so much and that it was ok you could go. I wouldn’t be mad at you. I was excited for you. You would get to meet Jesus today. I told you don’t hang on don’t fight for us anymore. There is no reason to. You are tired you fought a great fight and I am proud of you.
You enriched my life far more than you will know. Because of you I met people and became friends with someone who loved you as much as I did. Who fought with you as much as I did and to this day we still love and miss you.
I miss so much about you. I sometimes wish I could just have one more moment with you. Where I could tickle your fat rolls and just stare at your face and shower you with kisses. I miss sitting with you and just laying my head on the bed and watching you sleep or the times when you would just play with my fingers. You were so amazed with fingers. After you came out of your heart catherization and I came back to see you that night. I came up to you fighting your vent and you pulled it out you wanted that no more. I can’t blame you. But, as soon as Jenny gave you her fingers you were just content as can be. She only had you that night and you played with her fingers for hours. And she enjoyed every minute of it. We just sat there all night and watched you and played with you and talked and we were just amazed as you were about your amazement with fingers.
You was a great son. You were all I ever would have wanted in a son and I got it. I was always amazed at your ability to be so calm and so content even when your body was failing you and you were going through so much. I know that was Jesus, he was walking beside you. He was holding your hand and comforting you and keeping you calm. He was tickling your fat rolls from Heaven to keep you content and happy I just know it.
You built up my faith and let me see a loving God who gently walks us through the forest who is there to lift us up when we have no strength left to do it ourselves. And believe me this last year there have been many days where I couldn’t with out his help.
When we found out that you wouldn’t make it home with us, I used to think how am I going to live with out you? I don’t think I can. God might as well take me with you because I won’t be able to live with my bubbas. My heart is still broken but, I am managing to put some of the pieces back together. I am beginning to see the blessing in my life that was all made possible because you came into my life and showed me that blessing can come in the smallest packages. It isn’t always the big things. It is the little things. Like being able to get out of bed in the morning with a smile on my face because I know in a few minutes Mikayla will be running to me telling me I awake Mommy, I love you. She has a wonderful way of making me feel so loved.
We were watching your video and she said hey that’s my Donthan. I said no, that is my Johnathan. She took my face in her hands and said NO Mommy that is Desus’s Donathan. I said you know what sweety? You my dear are right!
You my son, are in Heaven with Jesus. God gave you to me for a short while and back to Heaven you went. But, you will always be on my mind and in my heart. You are my son, you always will be but, you are Jesus’ too. I am so thankful you are being so well taken care of. I Know you are gloriously happy. Worshipping the Lord, dancing on clouds playing amongst the angels and eating chocolate pudding. Free of all the wires and procedures that you were encumbered with in this world. Oh how awesome it must be to be whole and healed like never before. I am thankful and excited for you.
So, until we meet again, my sweetness, I will be down here living, living a life that you have taught me that I need to live. No more hiding or running away from life. I will live it to the fullest because that is what you did while you were here. And I can’t see doing it any different than you did.
I love you!!!!!
Johnathan Thomas Michael Poling !!!!!!!!

Mommy got sick and JT met someone new.

I think I also caught some of JT’s pneumonia, I remember not feeling really well and not being able to go up there for a few days. I was always really cautious about germs and such. And with him just having pneumonia, I didn’t want to test the fates. I felt so bad when I couldn’t go see him. I really just wish that he had grandparents that were able to go see him. That would help with this load but, he didn’t and the rest of the family didn’t seem too interested either. But, that is another story for another part of this book.

Stacy my friend well, we pretended we were sister and she was his aunt. Ok, everyone knew she wasn’t and Vicky just laughed at us. But, Stacy was approved to go up there and hold him and spend time with him so that he didn’t feel neglected. And let me tell you something, the neglected part was all in my head. He always had someone talking to him loving on him, holding him. The NICU has wonderful volunteers that go in to hold the babies. They know the parents can’t be there all the time. And JT had all the same nurses and they loved him to pieces so, he was not being neglected in no way shape or form.
JT got to meet someone new also, Stacy’s husband Shaun. I betcha he was scared to death. Most men they just are. Sorry, I like to mess with him it is fun.

We found out a few days later that Dr. Goodwin would be attempting another surgery. Something wasn’t right and they needed to find out what. All the tests that they ran seemed normal.

When I had gotten up there that night it was the first time I had seen JT in about 5 days. The first thing he did was spit up all over me. Ok, I deserve that one. I got him cleaned up and then we were sitting and talking and I was tickling his chin and he smiled at me. A real honest to goodness smile. It made up for not being able to be there like he was telling me, Mommy it’s ok, I understand. And I still love you.

JT’s surgery was to be the next Thursday at 9:00 in the morning. I was scared, I was slightly relieved they were taking steps to find out what was wrong but, still scared. Bowel surgery is one of the hardest to recover from. And this would be his third one.

Pnemonia and another funny.

His cold turned into pneumonia and his right lung collapsed. So, they put him on C-pap which is just high flow oxygen. It helped to keep his lung inflated. And they also positioned him so that his lungs would be able to open up more so that they wouldn’t be constricted. He gave us scare after scare. His pulse ox would drop to about 37 then go back up again and the cough was horrible. He would no sooner get to sleep when he would have another attack and get woke back up again. This is one of the few times that I seen him crabby. As in he cried all the time. And there was nothing that I could do to help him. I couldn’t really hold him that much because he needed to be laying so he could breath better. We had many many talks about fighting this thing. He would just look at me as if to say I got this just give me a few days. They suctioned him a lot and oh man the stuff that came out of him. They deep suctioned him and got all of the secrections out and he was better for a little while till they built back up again. Let me say that Johnathan also had chronic lung disease because he was on the ventilator for so long. So, when he got hit with a cold he got hit bad that is why it turned into pneumonia. I remember being very upset because well, he was in a hospital and you aren’t supposed to catch anything in the hospital. You were in there to get better not get sick. But, you know, the hospital is where all the germs are and with his lying and not moving too much didn’t help either. We just prayed and knew God would see him through it.

God and prayers from many prayer warriors helped him heal and get through pneumonia. The cough lingered for a while longer, but, soon that was gone also.

During this time they were talking about surgery again for his bowels. He wasn’t digesting, his fistula was still leaking and they couldn’t figure out what was going on. They figured a better way to find out what was going on was to go straight to the source and have a look at it. I really didn’t want him to have surgery again, but, I was all for figuring out what was going on, and it did seem that that was the best solution, because if they go in and look maybe they can fix it while they are in there.

I remember one of my grossest memories. But, really funny. His fistula was covered by an ostomy bag. Well, I was holding JT and we were just a talking away when I felt like my shirt was soaked. I figured he peed on me. Oh no! His ostomy bag had came off. Let me tell ya, that stuff doesn’t smell too great. I thought I had broke something on him I was so scared. But, nope, he pooped on me. He finally pooped on me. Ok, it was out of the ostomy bag but, hey I got that memory too. We were all about making memories and that was one.

The ride home, now, that wasn’t so funny, but, me and Stacey laughed so hard with the windows down every now and then until we got home.