Update and LOTS of pictures!

We were discharged on Wednesday afternoon. We are so happy to be home. No matter how many times we have been hospitalized I forget the sheer exhaustion that follows! Add to that the fact I have been under the weather and Alex's care is more extensive right now and I am pretty tired.  We have so much to be grateful for. Most important being Alex being okay despite two really nasty bugs growing in his line, bloodstream and heart. We had such incredible care from multiple doctors who worked together to ensure Alex's safety. While the doctors cared for Alex's physical health, so many others cared for us emotionally. We were showered with love and blessings beyond what we could have imagined. During the hardest of times the love and caring of others kept us going. There are so many who deserve thanks and you know who you are, but I have to say a special Thank you to my mom who is always there for us. As soon as we realized how sick Alex was she jumped on a plane to help in whatever way she could. The selflessness and love that she shows on a regular basis mean everything. I know that she loves my babies more then anything, but knowing that you ahve someone you can count on is priceless.

Alex still has a ways to go towards recovery. He is still struggling with pancreatitis which means he can't handle anything through his tube right now. Having to rely on everything IV is a little rough on all of us. He is also still on both antibiotics and antifungals. He has lost ten pounds since Feruary (which he cannot afford) He is struggling with high blood pressures and is just overall still weak. Please continue to pray for him to feel better!

Shortly before Alex got sick the kids had two photo shoots. One was for the hospital to be used for their Children's Miracle Network Marketing. The other was our annual bluebonnet session. (Thank you Tina W. for always capturing the kids personalities) I have a host of other pictures as well, but some of those may have to wait!

Thanks for all of the love and prayers.
Ali

Heading Home...for Now!

I am so happy to announce that we are heading home tomorrow!!! After the meeting of the minds yesterday they all came to a consensus. We know the port cannot be replaced right now. We also know our length of treatment will depend on whether the yeast is actually present in his heart. But for right now it doesn't change anything. We will head home tomorrow and continue the same treatment we were following here. Because Alex still has Pancreatitis and cannot feed he will be on IV fluids/TPN around the clock He will get his IV antibiotic 3 times a day and his IV antifungal once a day. Then we will come back on May 22nd for his port placement and the Transesophageal Echo. At that point we will determine how much longer we will need to treat. They told me depending on the echo it could be months.There is also the possibility that we will need to do a heart cath at some point to try and remove the yeast.

13 years ago, I walked into a meeting of the Keller-West Moms club, desperate to meet people before Alex was born. I made some of the greatest friends who have been a rock for Alex and I for so many years. 3 1/2 years ago I rejoined the same group so Maddy could also make lifelong friends. It has been harder for me to make it to activities and meetings, but I have watched this group of ladies give selflessly over and over. Today we were the recipient of the love they give so willingly. I am so lucky to call these women my friends and astounded about the way they have been there for us. Twice we have been forever changed by this group of moms who come together for fellowship.

I cannot begin to express how grateful we are. The kindness and love that has been showered on us has been amazing. We feel so blessed to how so many incredible people in our lives!

Ali

Working on a Plan

Sorry for the lack of updates. It is hard to know what to say when so much is still up in the air.

I will start with Mom...She was discharged this morning and is doing MUCH better. She still isn't eating a ton, but is close to back to normal.We decided that it would be easier for her and Maddy to be home and in their own space so I took them home this afternoon. I ran to the grocery store and got them what they needed for a few days.

Alex had his repeat echo this morning. He was a little mad at me at first that I hadn't told him what was going on, but he got over it pretty quickly.  I haven't seen the official report, but the tech did not feel like she got any views that were going to be definite that what they are seeing is not yeast.

We saw both our hospitalist and Infectious disease doctors. Everyone has agreed it is not safe to replace the port right now. So we know we will be going home with the PICC line (in his arm) for some time. We have already been told that we will most likely be treating for 6 weeks with the antifungals. (We also still have another week on the antibiotic).  The main question at this point is if we need to sedate him to do the trans esophageal echo or just treat for now and look at his heart when we go to replace the port. The Infectious Disease Doctor was going to call the hospitalist, a cardiologist and our immunologist from Houston and get everyone's thoughts before making a final decision. She hopes to have a plan for me by tomorrow. Regardless, it looks like we should be going home by the end of the week as long as Alex behaves!

Because he has a mild case of Pancreatitis we are not doing feeds so he will go home on TPN/IV fluids pretty much around the clock. We are hopeful we start to see some improvement as we have 33 days till we leave on our big trip!

Thank you to everyone for you thoughts and prayers.
Ali