Off we go...

Well he ate very well today. He had a ton of food and his enema went very well. I am pretty excited about it. We will head home tomorrow morning after his enema and I couldn't be more stoked!! He is so ready to be home to play tennis with papa and gigi is what he told me this morning. I am also ready to be home. Ready for non medical communication. I miss my fiance and my family...I want to watch a movie that isn't a cartoon...CALGON TAKE ME AWAY!! type of moment you know what I mean!!


Thank you all once again for all of your prayers and support while we have been gone. I can't wait to come home and let him show everyone what a big trooper he is and how God has really touched him on the trip. He's my big strong boy and all of the nurses have fallen in love with him and don't want him to leave. Dr. Levitt even told him today that Hunter is his favorite and that he will miss not seeing him everyday. Hunter has such a sweet gentle spirit!! That's the way that God made him!!


See you all soon,
Danielle and Hunter

Today is the big day

No not to come home, but to eat normal food. I am super excited about that. I know that he is too. I am feeling much better and am sure that everything was just hormonal. I have been very on edge and crying about everything and being insecure about my relationships and that is not who I am. I am almost positive that when Sister Flo comes to visit, that is it actually Satan in disguise!! I turn into this horrible, accusing person and anyone who knows me knows that I am actually an angel!!! You know that I have the ability to make people laugh!!

Will post this evening about the day unless something awesome happens while I am at the hospital!

Love ya'll,
D

Join with me

One of the woman that I used to work with just sent me a text. Her daughter is pregnant and she just found out today that she is having a boy and that he is going to be born with part of his brain missing, the cerebelum. She is obviously devestated. Her name is Jamie Keys and her husbands name is Nick. This is there first child and she is 27. Please join with me in prayer that the same God that has shown His power through Hunter would show his power for little Parker. I am believing that by the time that he is born, he will have a full brain and be perfect in every way shape and form. Thanks for standing with me for this. I have known Jamie and Nick since highschool and know the fear of your child having health problems. Pray that God would give them peace. If anyone can raise a child with special needs, it's Jamie. She is so loving and compassionate and gentle.
Thank you all once again,Danielle

Look at Jesus...again

Well the nurse just came in and said that the doctors conversed and decided that it was time for Hunter to start on some clear liquids...which wasn't supposed to happen until tomorrow, so I am totally excited and so is he!! It might mean we can come home a day earlier...I'm not getting my hopes up for that, but I will pack tonight just in case!! LOOK AT JESUS!!

I am feeling like crap, but he's not!!

I had just given him a bath and found a new shirt for him to wear and this is the one that I found. He was so excited. His first comment was...this is shirt is like Isaiah's...my cousins son in Fort Wayne. He loves and is now acting like he throwing webs all the time. He is doing very well. He gets to eat tomorrow and I haven't told him that yet, cuz I would hear it all day...When can I eat mommy, so I will tell him in the morning. He looks great as you can tell and we will hopefully be heading home on Friday, so we will be at church on Sunday. He is amazing...God that is!! I can't wait for everyone to see what God has done through his life. I have been thinking about when this whole thing is done, writing a book about my experience with VACTERL(the "syndrome" that he has) and the way that God has Hunter to touch so many lives and all the lives that have touched ours. I haven't really told anyone this until now. I don't know that it would sell, but I know that if I would have had something like this to read when Hunter was born, I might not have been so stressed out and maybe, just maybe, it can help another young mother who doesn't have a clue what to expect or what is going on. I still need to pray about it and talk it over with Rich and mom and dad, but that is the thought right now.

So, I have been pretty sick since yesterday afternoon. I have had a migraine since about 2:30 yesterday and when I got back to the room, I threw up 5 times and when I got up this morning, I tried to eat a piece of toast to settle my stomach and within 10 minutes, I threw up again. I am pretty sure that it is hormonal or if I have picked up something here at the hospital, but I feel like a big pile of crap. It sucks cuz I don't feel comfortable being near Hunter and when I gave him his bath this morning, I had to wear a mask, so I didn't breathe on him. I took 2 Excedrin, but it hasn't started working yet and my stomach is more upset than it was. I am NEVER sick, but when I get sick, I am sick. Please pray for me that I feel better by the time that we get home so that I can take care of him.

Thanks again for all of your prayers,
Danielle and Hunter

Today

I got here today and Hunter did very good during the night. He hadn't been doing very good with going to bed, but last night he did. We just took out his IV, the one that he got when we got here and he wasn't using it any longer. The nurse he has today is the nurse he had when we got here and I love her. She is just like me in her phylosophy of nursing...even if it hurts, it has to be done. I love her.


He is doing great today. Ready to go home, but he is doing well.


More later when there is something to talk about...OHHHHHHHHH! When Dr. Levitt was here yesterday, well let me start off by giving the background. Initially, when we go home he was going to be taking laxatives to keep him cleaned out, but he has decided to just let me give him small enimas everyday. I am so excited about that. I wasn't very excited about never knowing when he was going to need a diaper change. While we have been here, he has had bowel movements by himself which hasn't happened alot in the past unless he has had a blockage, so I am very excited about that and hope that is a sign of what is going to be in the future!! Please continue to pray that God will shift his bowels around so that he can do it by himself!!


Thanks again,
Danielle and Hunte

Ok, so I was just told that since I feel like I am totally out of the loop with everyone, that I am to ask the people whos blogs I once looked at, so send me an invite, so that I may look at them again. My email address is thecumminsclan05@gmail.com I would really like to know what is going on with everyone...tara, manda, stacey, mandy...so please send me an invite!!


Lata,
D

I just emailed his surgeon and asked him a few questions and am so encouraged. He is going to let him eat on Thursday with a discharge on Friday if all goes well. I was afraid that we were going to have to be here for another weekend, but God is still working and isn't done yet!!

HUNTER IS THE MAN

Well, Hunter wanted to take a picture to "show da people mommy", so here it is. He is doing VERY WELL!!

Dad stayed at the hospital with him last night because he was having a pretty rough time with being scared.

Dad said the surgical team came in and said that he looks good, but I am pretty confused about some stuff, so I will be emailing his surgeon this morning and finding out what is going on.

This pic is for all of you who yell at me to put pics on here, so here you go. I didn't know how to do it, but now that I do, I will add them when I can!

Love you all,
danielle

Yesterday

Well, mom and dad are leaving today and Rich and Chloe were gone by 4:30 yesterday. The visit with everyone was way to short, but awesome. Mom and dad were a great help to me as I am starting to go a little stir crazy being here. I feel like I am across the country...don't know why. There really isn't anything around where I am staying and the hospital is in a TERRIBLE neighborhood, so I can't walk around there to do anything.

Well, Hunter's spirits picked up major this weekend when he got to see his "sister". He was in such a good mood all weekend while they were here. Dr. Levitt wanted him to get up and walk around on Friday and he said that he didn't want to, so I told him that he had to on Sunday if he wasn't that day and he said ok, so yesterday...I unhooked him and the 6 of us went for a walk. Ok, now I am going to be honest! I was scared with how he was going to do, but he did AWESOME! I think sometimes I push him too hard, but yesterday, I think I could have pushed him harder. He would have kept on walking, but my dad suggested that we turn around, so Hunter turned around. He did an amazing job and I told him that if it was ok with his nurses that today we would go for a walk outside, and his face lit up!!

On Saturday, Dr. Levitt came in and I asked him when Hunter's 7 days of not eating were up and he said that the 7 days started on Wednesday...so I did the math last night at if I am correct, the 7 days will be up tomorrow, but we will see. I am not getting my hopes up, but all Hunter has to do when he starts eating is tolerate half of his diet before we can come home...so...if that is the case...we might be able to get out of here by Thursday...and if that is the case...I am going to be so excited!! Please bind with me in prayer as I would love to come home and start this whole thing.

We are only 3 1\2 months from the wedding and so much to do. I got the invitations, just waiting on the rest of the addresses. We have to register in about a month and find a photographer. Still have to get all the little things. My cousin Rachel is home, so she is going to be a great help and my cousin Beth has offered to do things, so thank you!

Well, I will continue to keep you all up to date on what is going on. Thank you once again for all of your prayers. They are very felt and I know that is the only reason that he is doing so well!

Love you all,
Danielle and hunter

not much today. I am forcing him to become more active and try and sit up more in bed. It hurts his belly to cough, so I thought if I forced him to sit up, then it might help his lungs not get congested. Mom, dad, Rich, and Chloe are coming down today and I am super excited. I am getting pretty bored.

I don't know that I will blog tomorrow unless something major happens. Thank you still for your prayers!!

We love you,
Danielle and hunter

Today

I got to the hospital and Hunter smiled when I walked in and his first question was,"mommy? what did you bring me to eat?" That's my boy! They started his TPN this evening which will curb his hunger pains and he will be on it for 7 days...in the past this has caused him to gain weight, so I am pretty glad for that. I hope that it sticks this time and he doesn't lose it all. All of his incisions look excellent. He was asking for pain meds today which I believe is a first, and that means that he is alot of pain cuz he has a very high pain tolerance. All he really asked for all day was his Thomas Train and Percy. He didn't want to play with them just hold them. It is familiar to him and makes him feel safe.

Thank you all for your prayers. Gin and Tonya, if you would like to come down, I am not going to tell you no. I feel bad that you have offered over and over again. If God leads you, you are more than welcome. Pastor, thank you for your phone call. Mark, thanks for the emails. Beth, Ben, and everyone else who have left posts on here, thank you for your love and prayers. By the way Beth, I have 4 french vanilla cappachino's after you told me to go have a latte.

Love you all,
Danielle and Hunter

here's what happened

So they took him in at noon and put him under. At about 4:15 they called and said that Dr. Levitt was finished and wanted to talk to me, so talked we did. He had almost no blood loss and all of the procedures went very well. As you all know, the PICC line didn't go in yesterday, so after his surgery was over and he was still under, they started the PICC line. There were some complications, but everything is fine now. I am very glad that this is over, now we just have a long recovery. He won't be able to eat for 7 days, but he will be getting TPN(nutrition) through his PICC line and in the past has meant that he will gain weight which he needs badly!

I am very glad with the way that God worked things out. He is doing well...very drugged...but well!! We love you all very much!! Thank you all for your prayers and support!! I will still update everyday, so keep looking and pray for a speedy recovery!


Danielle and Hunter

Surgery day

Well, the start time for his surgery was 12:48 and could take anywhere from 3-8 hours. I don't really have anything to write about until after his surgery, so I will update tonight!

Here's the day

Well it was a very eventful day and Hunter is exhausted. We got the hospital about 9:20 and got admitted very quickly. Once we got upstairs, his nurse came in and started the admitting paperwork and I had to let her know right away that no matter what happens today, I am nice person and not as mean as I might sound later. She asked what was wrong, so I proceded to tell her what I posted in the last blog. Well to make a long story short, they gave him some oral versed and we went done to PICC to start the line, but they didn't give it long enough to work and they tried both veins in the right arm, but they couldn't get it to thread in, so they stopped and asked me if it woul be ok if they waited until he was under anesthesia to start it the next time. I wanted to look at her and say "WELL DUH!!", but I didn't!

As for the NG tube, Dr. Pena, the head of the colorectal center, came in and explained to me why they used the NG tube and I agreed to it, and he hasn't messed with it which surprises me.

His surgery time for tomorrow is at noon and at the least it will be 4 hours and at the most, 8 hours. I really am praying that we can be out in 7 days and not 14, so please bond with me in prayer for this. Money is very tight right now, and it would show me the wonderful hand of God if I could check out early.

Thank you all for your prayers this morning and the afternoon. I never once felt anxiety and that was my fear!!

love you all,
Danielle

Pray for me

Well today I will take him in to get admitted and today could test my character a little bit. He has to be admitted by 10 and the want to start at PI CC line at 11 and that is basically an IV that lasts longer and will be placed to provide nutrients since he won't be able to eat for about 10 days. Well the PI CC like is very painful and as of last week, I was told that it will be place without any type of anesthesia and if that is still the case, I will not allow them to place it today. It would be way to traumatic for him. My deal will be that either they orally sedate him or they wait until surgery to place it, but I will not the sign the consent until they at the least orally sedate him. He then has to start a bowel prep to clean out his bowels for surgery and as of yesterday I was told that it would be done through an NG tube which goes down his nose into his stomach and I won't have that either. He still has his cecostomy and they can give him the bowel prep that way. So, please pray for me as, like I said, today may be a test of character for me. I have to look at it like this...he doesn't know what is going to happen or what is going to be done and I do and I am his parent and advocate. It is my job to make sure that he is comfortable and not scared. He has been put through so much already and I will do everything in my power to make sure that he isn't scared and that he is comfortable, so please pray for my mouth to be guarded and that I remain calm, but firm.

Love to you all,
Danielle


I will post this evening what happens today with everything!!

We will be leaving shortly to go to Cincy and I will be blogging everyday what happens. Don't feel like you have to post a comment, but know that you can. We could possibly be there for 2 weeks, so check it as often as you like. I don't know what time during the day that I will get to update it, but it will be there.

Love you all,
Danielle and Hunter