May, 2005

Monday, May 2nd... You vomited during the night and now your sodium levels are not consistent. They are holding feeds and monitoring your potassium, sodium levels.

Dr. Dunn is your Endocrinologist, he specializes in body fluids, sugars and diabetes.

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Wednesday, May 4th... You are having a busy day. You are discharging from your left eye and your ears are filled with puss. They called in Dr. Meir, the ENT, for a consult. Dr. Reisman, the gastro Dr. filling in for Dr. Medina, is changing your G tube to what they call a J tube. This will allow feed to go in a different direction and hopefully you will not vomit. You are losing a lot of weight, you have gone from 150 to 125. Your face is so thin and you are so pale.
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Linda, your occupational therapist, comes to visit and she is devastated. All of the therapists come from time to time-Tara, Aubree and friends from BTU. Aubree brought you a beautiful angel and I hung it on the wall by your bedside.*******************
Thursday, May 5th... Dr. Steineke ordered a cat scan and is scheduling surgery for May 6th. They are inserting a shunt which is a permanent drain to keep fluid from building up.

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Friday, May 6th... They scheduled you for 9:30 to have the shunt put in. They took you to the holding area at 7:30 and at 9 took you to the OR. We waited until noon before we got word it was over and you were back in ICU. You had a rough couple of hours coming out of the anesthesia. Once you were beyond the initial trauma they gave you Tylenol and you slept for the rest of the afternoon.

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Monday, May 9th... You are now stable enough to be moved to a different floor. We spent 4 weeks in ICU and now we are going to 3 Central. Mom is a little nervous because you were so well taken care of in ICU and now things will be so different. The Doctor said you are coming along nicely, you are more awake and becoming stronger everyday. The Doctors still have no way of knowing the outcome of your illness, only time will tell.

The next week we spent in 3 Central and you were still having some problems with your feeds and pictlines. They were sitting you up in a chair which was nice for you and much more comfortable than being in bed all the time.

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May 17th... They are making plans for your discharge but they are not sure because there are still issues to resolve.

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Wednesday, May 18th... The day has finally arrived and you are being discharged. They need to put a new pictline in before we go and then we will leave JFK. Carmen is with me and she has been such a good friend to me. She helped me pack up your belongings and we waited for transport.

It is now 7:30 p.m. and we arrived at Hartwyck. David your roommate is screaming and hollering because he does not want you back in his room. The Doctor explained to him that you need special attention and the door has to stay open at night. He enjoys the room by himself and the door can be shut at night. You on the other hand cannot communicate if something is wrong and they need to get to you if something happens. He was absolutely off the wall and out of control. His Mom was there and she apologized and Dave said Aaron did not deserve him as a roommate.

The next day it was decided we were going to be moved to Rm. 225 and share a room with Sean Reilly. Susan and I had become friends and we were very happy about the idea because you and Sean are close in age. Susan and I have gotten to know each other and several times she would come visit you in the hospital. We watch out for each other and our boys.

The next several days and through the Memorial weekend you continue to get stronger. You are still having problems with your feeding tubes but otherwise you have been getting a lot of rest and seem to be very comfortable.

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Tuesday, May 24th... Your speech therapist came in to evaluate you. She was trying to feed you and see if you responded to commands. She was quite pleased and was going to recommend 3x a week for speech therapy.

For the remainder of the week you were seen by your therapists and evaluated for further therapy. There goal is to hopefully get you back to where you were before you got sick. We have been spending time outside because it has been great weather and the fresh air is good for you.

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It is now the end of May and the responses have been great. Susan your teacher is noticing you are tracking with your eyes and you are in such great spirits. I pray you will continue to move forward and be able to do all the things you did before and then some.