Monday, November 14, 2011

Still at CMH

I talked to the nurse this morning. She mentioned that Chase's wound looks great and that the neurosurgeon want's him to be there until his antibiotics are finished which will be 11/18 and that she wants his wound to be monitored for a couple days after that. I'm guessing the earliest he will come home will be on 11/21, and that's the best case scenario. We will have to do wound care at home which we should be learning about tonight. This will leave 13 days until I go back to work. Not a lot of time.

I feel so shafted with the whole experience. I worried the second half of my pregnancy. I was induced. It took 27 hours for me to deliver. The myelomeningocele was never found on any of the multiple studies I had done. Now, Chase has spent 25 of his 26 days of life in a hospital in Chicago, and I haven't been able to really experience life as a mom. It all defiantly turns me off to the idea of having another child.

As bad as it sounds, I can't spend all day there with him. If I take the train in I get to the hospital around 830am, by the time B gets there it's already around 7pm. That's roughly 11 hours later. By that time, I'm spent, both physically and emotionally. We usually spend about 3 more hours together with Chase, so B gets a chance to visit. This totals to about 14 hours. So by the time we leave and get home it's 1130pm, and then I have to pump, so I'm going to be sometime after midnight, to wake up and be ready by 6 for B to take me to the train's exhausting. I can't do it and it's in Chase's and my best interest not to do things this way, as I become an angry, sad, emotional, crying mess.

On top of long days as I described, I can only stare at him for so long. It's not like I can hold him normally, dress him, bathe him, sit him in a boppy, etc. He has to lay, tummy down, on a sponge mat. He's hooked up to a monitor and when his sensors fall off (as they always do)the alarm goes off. It's quite a hassle and it's quite frustrating. I just can't do it all day long. (Plus, the cafeteria food sucks and I am SO sick of eating McDonald's)

I'm about ready to just go back to work. This is where I know I could never be a stay at home wife/mom. Part time, yes. Full time, I would pull my hair out.

Well. I'm thinking I'm done with the pity party post for now. Here is where I leave you with my favorite pic I have (so far):


Friday, November 11, 2011

Number 4

As I was getting ready to leave for the hospital last night, the hospital called. They said Chase's wound was leaking spinal fluid and they needed to take him to surgery to explore the wound to find out where the fluid was coming from. They had also mentioned that he may need a drain in his back or the possibility of needing his internal drain shut off and an external drain placed again. Above all, he was not coming home.

On our way to the hospital, the neurosurgeon called and said it was best to take him now since there was an opening and she didn't feel comfortable waiting. So, like the first time he had surgery, I didn't get to see him before he went.

When we got to the hospital, we went to the surgical waiting room. We were only there for about 10 minutes when the surgeon came to talk to us. She said that it was old spinal fluid that was retained in the wound and not leaking from the dura mater, which was very good news. He did not require any drains, but they left the wound open, which will have wet to dry dressing changes and will need 7-10 days of antibiotics. The downside is that he will have to stay in the hospital until the round of antibiotics is done (insert sad face with tears).

So, this is where we are at with things. As always I will update if/when things change.

Like last time, I will leave you with this:


Thursday, November 10, 2011

22 Days

Chase is 22 days old today. He has 3 surgeries so far. He now has an internal shunt to regulate his ventricles and the flow of his spinal fluid. The shunt is programmable from the outside of his head. We brought him home Monday night but he went back on Tuesday night/Wednesday morning for some wound complications. We're expecting to bring him home tonight as long as things are ok with his wound.

The neurosurgery team is very pleased with the movement in his legs and he was sent home with out having to catheterize him every 6 hours. He will have some bladder tests on Tuesday along with an MRI.

That's all I have for now. I will leave you with this picture: