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We thought we were in the clear

post #1 of 20
Thread Starter 
So everything seemed to be going great today. Like my previous post said, Merrick has been doing better and better with his blood sugar and breastfeeding. Oh, and he got his catheter out. Well, the pediatric urologist called us this evening to let us know that he just got out of surgery and that he was going to stop by and look at Merrick's scans today and then come visitin with us. When he came in, he let us know that yes, Merrick has Posterior Urethryl Valves as well as Reflux. So we thought okay, this isn't too bad. It's not something that is hard to fix. Well then he drew a diagram of what is really going on with Merrick's bladder and ureturs. His bladder is bigger than normal b/c of all the fluid and he has an extra "sac" that extends from the side b/c of the strain (think of an over stretched balloon and how if you squeeze it, another bubble comes out). And his right uretur is dialated as well as the left...but the left is the size of the bladder itself. Plus there is a blockage at the base of the bladder and urethra. So b/c of all of these things, Merrick can't pee very well and all the urine is getting backed up and causing the inflamation in the bladder, which in turn, causes the ureturs to reflux. And he also said that his kidneys have some damage, but he doesn't know to what degree right now. So the game plan is to have Merrick transferred over to the children's hospital either this weekend or Monday and they are going to stick a tiny scope up his urethra and cut the blockage out (but they have to wait until he's a couple of more weeks old). Hopefully that will allow his bladder to drain. If they a) can't get the scope up his urethra, or B) it doesn't work, they are going to have to go in and do a couple of other things, that include bigger surgeries and basically cutting and attaching part of his bladder to his tummy so it will drain into his diaper. This is just a temporary thing and will be fixed w/in 6 months to a year. And another thing they may have to do is go in surgically and cut a hole in his ureturs and attach them to his tummy and he will have to have a colastomy bag for six months to a year. No matter what, he is going to have to have surgery, we just don't know how invasive it will be. But until then, they had to put his catheter back in, poor baby.

Also, he has a sacral dimple on his butt that goes extremely deep, so deep that they couldn't see the end of it during the sonogram they did on it today. So a neonatal surgeon is coming tomorrow to look at it and see if we need to have an MRI and possibly surgery on that as well, b/c it looks like it's attached to the spinal colum.

Oh, and we found out that we will be in the hospital for at least another 2-4 weeks, most likely 4 weeks.

This has been a very stressful evening. We told the doctor about DF going out of town for work on the 11th and asked about accomedations for rooming over at the children's hospital, since we have no car and I am breastfeeding Merrick. He says that they to have rooming for parents there are the hospital and we will work everything out.

I am calling the social worker tomorrow to talk to her about all of this, b/c I broke down yet again tonight as did DF. It's so hard to see your son laying there with all of these wires and knowing that he is going to have to go through all of this stuff. I am REALLy worried that I will get PPD and my milk flow will stop due to stress, especially once DF leaves. He told me tonight that he didn't want to go and that he was going to walk off this gig so he could be with us. I told him he had to go, b/c that is how we are paying bills and if he didn't go work, then we would loose our apartment and we would loose everything. I am going to call my mother tomorrow and let her know what is going on and see if maybe there is a way for her to come down and stay with me, as well as my SIL. I need my family right now and it's very difficult to have them so far away. We are very grateful to have wonderful friends here in Austin with us, but no one can commit the time to staying with me.

We are trying to take it one day at a time, and if we have to, one hour at a time...but it's difficult. DF went into the chapel tonight and started yelling and throwing chairs and stuff. He's agnostic, but is really starting to doubt even that. He used to be very spiritual, but has lost a lot of his faith over the past couple of years. I am spiritual, and am trying to be strong, but it's hard.

(They need to make a face that is bawling with face in hands....that's how I feel now!!!)
post #2 of 20
Wow, Gina...that is a huge amount of stress and information for you to process! I hope and pray that everything will go better and easier than expected. Oftentimes children's hospitals can be much more family oriented and supportive, so I hope that the atmosphere there helps to make your stay as smooth as possible. *HUGS* I know I can't say much to comfort, but I'm thinking of you, mama!
post #3 of 20
Oh Gina, that is just awful. I am so sorry for what you guys are going through. I don't know what to say... just sending you and your baby love.
post #4 of 20
Gina, I am so sorry that you have to go through this hard time. I can't imagine how hard it must be. Please know that I am praying for you, that the simplest options solve the problem for you and that a few years from now, this will all be a distant memory and that you will be able to look back and remember being surrounded by people who love you and that Merrick was such a champ who came through it all so well.
post #5 of 20
I'm praying for you guys.
post #6 of 20
. I'm crying for you right now and sending you guys lots of love.

While I'm so glad to know, as I know you are, that it sounds like your little guy is going to be ok in the long run, what an unfair start to things. And to have your DF have to leave in the middle of everything...ugh. After my DS's birth, my DH just had to leave the house for 11 hours every day for a bit for work and that was hard enough for us both, I can only imagine.

Take care of yourself, mama. Keeping you all in my thoughts.
post #7 of 20
I'm so sorry mama, that you have to go through all of this. All of you are in my prayers!
post #8 of 20
This is so much and you are being so strong. Utilize any outside resources that will help you, and keep on keeping on, mama.

Sending you love, strength & mending vibes. xo
post #9 of 20
mama, I'm so sorry he has to go through all this. Reach out and get as much help as you can.
post #10 of 20
DDC to say that I spent 5 months in the hospital with my first, and it sucks big time even when you have fabulous care providers.

If there's no rooming in, check to see if there's a Ronald McDonald house near the hospital. I think you have to be a certain distance from the hospital to qualify.

DEFINITELY see the social workers. They are great for emotional support, but depending on how long term you are going to be there, they were able to find us some financial support as well.

If you are going to be at either hospital long-term, ask about regular nurses. We chose about 5 nurses, and if one of them was on duty he/she was our nurse. It was so nice because they got to know us and our daughter. They fought for us if we needed it, warned us of problems that could occur, and they helped us get information that we needed. (We had to take a CPR course before we could take dd home, so one of our nurses lined it up for us even before the doctors mentioned it).

Finally, accept any and all support. Ask for what you need. I'm sure you have friends and family who don't know what to do, but would be happy to help once you asked.

I hope this doesn't come off as rude as I'm sure a lot of this is common sense. I just know how traumatizing the whole hospital experience can be.
post #11 of 20
mama I am so sorry you are going through this, Take care of yourself. I am thinking of you and your family.
post #12 of 20
I wish you lots of strength to deal with everything, I can imagine how scared I would be if I had to go through something like that, even knowing that it will ultimately work out okay
post #13 of 20
I'm so so sorry for you and your family are going through, my thoughts and prayers are with you!
post #14 of 20
Dear Gina,

I'm so very sorry for everything you, your family and little Merrick are going through... I can't imagine the physical and emotional strain you must be under. Having no experience of these things, I can only offer my deepest sympathy and prayers that things improve from here on out. I hope your family is able to rally around you, I hope there are social services available to support you through this tough time and more than anything I hope you and Merrick will be home soon.
post #15 of 20
Gina, I am really feeling for you and your partner. It is so hard to see your children in any sort of pain -- especially when they are too young to understand why. Not that knowing the "whys" makes it any easier for you. I hope that your family is able to give you the support you need. I'll be thinking strong thoughts for you.
post #16 of 20

DDCC but have been following your story... I suspected PUV as I read this just after reading about PUV because of a friend's DS's condition. As perhaps a bit of encouragement, my friend's DS is now 6 years old, and to any casual observer is a very sweet, funny, and healthy little boy. He does have ongoing issues, but my understanding is that most of that is NOT directly related to the PUV. From what I've heard of her story, the fact that they diagnosed the PUV so quickly in Merrick is a very GOOD thing. Now, they'll know what they're treating, so they can do it right.

Do make all the arrangements for help and care that you can. You will need it! Don't refuse anything that can help you. I hope and pray the road is smooth and straight for Merrick.

post #17 of 20
DDCC - couldn't read without posting s
post #18 of 20
Oh no, I am so sorry. I totally agree talking to a social worker is a GOOD idea. I'm a social worker, and the SW's I went to school with who work in the hospital are pretty awesome. If you don't feel like you connect with the first one for whatever reason, look for another.

I wish we could all come help.
post #19 of 20
Big and I hope your little guy stays strong and recovers quickly. Blessings~~
post #20 of 20
My son is the one Heather mentioned above. He is doing well now, but my heart aches for you hearing your story. I will send you a PM and my email.

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