First jab

We only have two more days to wait until Jacob comes home. We still need more training from St Mary's though. Today we practiced more with the syringe and hypodermic. They gave us an orange and some needles with a vial of saline. We turned that poor orange into a pincushion we practiced some much. Christina then was asked to prove her competence by giving Jacob a shot of Lovenox. She was brave and a good study as it went well with little crying from Jacob (and myself). She said it was totally different from the orange as there was a lot more resistance with skin; something I will, no doubt, have to find out for myself. I don't relish the thought of jabbing my son every twelve hours, but it has to get done.
I would like to thank you, the reader, for following this blog. I can see from the Feedjit app at the right of the articles that I know many of you; Kris from Pennsylvania, Kathy from Alabama, Jeanmarie from Maine, Mom from Kings Park, Kelly from Tampa (well, close anyway) and so many others that I have gotten to know over the years. There are others, however, that I do not know. I have had visitors from Canada, England, Poland and even India. Though I do not know you, you have my thanks, for this blog would be pointless if it were not read. If you have any questions, please feel free to contact me through this site. I will be happy to answer them. No one has to go through this alone. It would make me very happy if I could help others going through a similar situation.

Sticker shock!

One million three hundred eighty four thousand two hundred dollars and sixty three cents.  This was the final amount that was printed on the 56 page invoice we received from New York Presbyterian Hospital. The invoice was so long that the printer started to run out of toner on the last few pages. Although this is a lot of money, money that would take more than a decade to earn, I still cannot put a price on the smile Jacob had when I last held him. We last saw him on Tuesday at St Mary's Hospital when we went for more training. He is showing more and more personality every time we see him. I can't wait to get him home again; which has been delayed once again. Today was supposed to be the big day but the staff at the hospital and the home nursing service were not on the se page yet.  Tuesday is the next scheduled day for his homecoming. I can't wait to see Jacob and Corinne playing together for the first time in their lives. I can't wait to see the interaction between Jacob and John Paul. JP absolutely loves his sister and cannot wait until he gets to see Jacob again. We all cannot wait any longer. Will it be more Work? Yes. Will there be more reward? Absolutely! We adore the gift of Jacobs life. Whatever he goes through, he will have his loving family by his side every step of the way.

Special training

This weekend we went to St Mary's for more training. We did more training on the G-tube; cleaning the tube, removing and inserting it, etc. We also found out that he was still receiving Lovenox. Unfortunately, it is injection only. Jacob requires two shots daily. We were given an option of sticking him every twelve hours or only once each week. We chose the latter. The option we chose was to it in a hypodermic catheter into his leg once a week. It works like this:
It is kind of like an IV but the needle does not remain in the skin. There is a thin sheath that covers the needle and the sheath remains in place. After the needle is pulled, the body of the catheter is like a butterfly used in collecting blood. The butterfly is taped down exposing the port. The port is where the medicine is injected into. One painful jab per week is a lot better than doing it twice a day. The poor kid's legs look like a junkies arm. God, give me the strength to do this...please!
We are still on for a Thursday release.

Oops...my bad.

I got it wrong. Jacob will be coming home on Thursday the 27th and not the 24th as I stated in my previous post.

Second homcoming

Its official, Jacob will be coming home on the 24th of October! Christina and I are ecstatic. Jacob and Corinne were recently reunited at St Mary's last Sunday. They actually seemed to remember each other. OK, maybe not, but it was great to see them together again.

The best news

Jacob has been transferred to St Mary's Children's Hospital. He will receive two weeks of PT and OT for his stroke and then he will be home. His mother and I are over the moon with joy. He was in great hands in the hospital, but nothing can compare to the natural benefits of home and family.  Home in time for Halloween - I didn't think it was possible; a true early Christmas gift.

Good news is great news!

Today we found out some great news. Jacob will be discharged on Monday. He will be going back to St Mary's to complete his physical therapy. This is a huge step on his journey home. This 96 day stay cost $993,600. This is just for the room and does not include the three procedures, MRI, medicine and various ultrasounds. I only hope that you other hypoplastic parents reading this have good insurance and better luck with all of the complications. It is the complications that have really extended his stay. I couldn't imagine paying for all of this without insurance. In total, we are just over the two million dollar mark.
That being said, I am really looking forward to next week and the hope of an early Christmas present.

No-news is good news

There is not really a whole helluva lot to say this week on Jacob's condition. Things are pretty much status quo. One small thing though. Jacob was supposed to get an MRI today to finally determine the exact extent of the stroke damage - he got bumped. We will have to wait until tomorrow for that. Otherwise, he seems to be on the road to discharge. He will be discharged back to St Mary's Children's Hospital so he can continue his physical therapy, but that is one giant leap on the journey back home.