Alex and Maddy

Alex and Maddy

Friday, April 10, 2009

Ok, Where to begin?

We were discharged around 2:45 on Tuesday afternoon. Alex was so excited all day on Tuesday. He was bouncing off the walls telling everyone he was going home. After a tearful goodbye we were on our way. Let me explain, while we were ecstatic to be leaving, Dr. Koenig, LaKeesha, the child life girls and several of the nurses have become so much more then employees at the hospital. After the many months there they are like family. On top of being sad to say goodbye, I am so appreciativ​e for everything they do for us. The all work extremely hard to take care of Alex and make both of us more comfortable. So while we can't wait to see everyone again, we hope it is for a visit when we are outpatient in Houston!

We got home around 7:30 on Tuesday and I began the massive job of trying to unpack! We were barely starting when Alex got sick and had diarrhea all over the rug. So packing was stopped and cleaning began. Needless to say at midnight I had barely made a dent in the unpacking. So my plans to have everything done before Dad got here did not materialize. Regardless, Alex was SO happy to be home and I couldn't wait to climb into a bed!!!!

Wedn​esday brought Grandpa. This is by far the most excited Alex has been to see Grandpa. He was a nut in the airport. He had the other families hysterical because he was so excited. He has been talking Grandpa's ears off and holding his hand everywhere we go. He has also had us all cracking up. He is so joyful right now. He will just start laughing. he is also keeping us going will all his funny "Alexisms". Here are two from yesterday... Dad was at the ATM. Alex asked me to roll down the window. When I did he yells, "Hurry up, Gramps". The second was a little while later when we were in the grocery store. We were checking out and Dad dropped a box. Alex says, "Good thing that wasn't your wine". He is so smart and has such a grown up sense of humor. It is so funny to hear it coming out of this little body.

The only problem we are having right now is Alex is extremely nauseaous. He is retching and vomiting several times each day. It breaks my heart when he starts crying and looks at me. I know that look so well right now. He is so scared to throw up again. We think it is just his body adjusting to feeds again, but we are keeping a close eye on it.

Let me back up for a minute...We almost didn't get to leave the hospital Tuesday. Alex's labs were not good at all. His Triglycerid​es were VERY high (515) and his phosphorus was also very high (10.1). The Doctors really wanted to keep us, but didn't have the heart to make us stay. So we had to run labs yesterday. They were much better. His Triglycerid​es were still high (292, they should be under 200) but his phosphorus was back to normal! Also his blood counts are holding strong which gives me hope that the procrit shot we are giving may work.

This afternoon we are going on a train ride with the Easter Bunny! I will try and post some pictures tonight.

The plan is to run labs once a week. Assuming they continue to look good we will see Dr. Koenig outpatient in a month.

I have so much to be thankful for this holy week. One, God has blessed us with the most beautiful weather. Two, Alex is healthy and happy to be home. And three, Theresa, our nurse, has graciously been working nights so she can give Alex his midnight dose of antibiotics so I can get some much needed sleep before I have to get up at six and give the next dose.

Prayer​s...for Alex to continue doing well, for his nausea to get better, for his infection to not come back when we stop antibiotics on Sunday, and for us to continue to enjoy this time at home.

Ali

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