Saturday, July 3, 2010

Weeks, not days....

Happy long weekend!

We are camped out at hotel hospital once again....I was warned by one of the Drs. that we will likely be here weeks rather than days. Thankfully, Noah is back on formula. What a relief as he is now 0% for weight and even his height is falling down the chart. This time the formula of choice is Neocate, a cow's milk protein free formula that you cannot purchase in the store. The thought is the retching is caused by an allergy? The theories just keep coming. Praise God, he hasn't retched since we drained his g-tube and began feeds again. Noah is receiving 20ml of formula per hour on a continuous basis. So do lots of cuddling, looking out the window and playing with toys. I gave him a bath this morning and I know he would have loved to have a big tub full of water....but the g-tube site isn't yet healed so we settled for a few inches of water to enjoy.

The other little wrinkle is that there is a norwalk virus outbreak on our unit. That means no visitors to the unit. However, I can meet people (and Noah too is he isn't napping) in the cafeteria. That is easier for me in the weekends since the week brings Drs. in and out and I don't want to miss them to discuss Noah's plan and progress. Noah's plan has already changed about 5 times in a day so I have to keep up!

Noah has been all smiles. He loves visiting with the nurses, volunteers and his special friends, the cleaning staff. They all seem to come by just to say "hi" and get a little smile. Teresa, one of the caretakers, even does a dance with her mop for him. He is having some trouble sleeping well at night so he tends to play for an hour in the day, followed by a short snooze. He is often interrupted in his napping attempts by Drs. etc. But we do the best we can.

Since we are going to be here a while, we would appreciate some meals and snacks, for those who are able and around. If you can contact my sister or mom to arrange same, that would be terrific. Thankfully, I was able to negotiate with the charge nurse so that my mom can visit the unit! Calling our cell phone, using Facebook or sending an email works great to keep in contact. In the daytime, email or Facebook is best as Jared will keep the phone for the daytime.

Here are three blessings of being in the hospital I will leave you with:

1. NOAH'S MUSCLE TISSUE they took out on the 15th of June, and the unofficial result came back NORMAL!!!!!!!!!!!! Without being in the hospital, we wouldn't have found that out until September.
2. The Drs are working hard to really make sure all avenues are explored for Noah - we can quickly get tests done as an in-patient. That is a huge blessing.
3. With my depression well managed, I am able to be with Noah 24/7. I like chatting with the all the staff and other parents, there is cable tv for the evenings, and free internet (thank you Jared for buying a laptop for me a few months back). Mostly, I love spending time with Noah.

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