Alex and Maddy

Alex and Maddy

Monday, May 22, 2017

Surgery Update

I will keep this short as I am really tired. It has been a long day.

I'll start with the positives: Alex's new port went in with absolutely no problems and is working beautifully. The PICC line was pulled and Alex is so happy to have his left arm back to normal! The Echo looked good. They saw no signs of endocarditis (infection in the lining of the heart).  They want to review everything one more time, but we are really close to stopping our IV anti-fungal treatment.

The GI stuff was not quite as positive. His colon is HUGE. Dr. O said it over and over again. He has been so full of gas for so many years that his colon is completely dilated. It is without a doubt a big contributor into our feeding intolerance. Dr. O took biopsies to look at the whole colon, but especially the rectum. He needs to rule out Hirschprung's Disease. The biggest shock of the day though was that Dr. O found a growth outside of Alex's colon (pushing into his colon).  It could be a cyst or a tumor. Both Dr. O and Dr. I (surgeon) feel like it is benign, but it will require more testing and likely surgery to remove it regardless of what it is. We have made the choice not to share this with Alex right now. He is emotionally exhausted from worry over the past month. He needs/deserves to go on our trip and be a kid and have fun. We will address whatever we need to when we get home!

Thank you to everyone who lifted us up today. We felt the love and prayers.

Ali

Sunday, May 21, 2017

A Rough Few Days

The beginning of last week was pretty quiet. We are keeping everyone pretty low key so no one gets sick before our big trip to Orlando!

Maddy had therapy. Alex had Violin. But we also had lots of down time at home. Thursday we headed to the hospital for Maddy Moo to have labs drawn and her sweat test to rule out Cystic Fibrosis. It was a long morning, but Maddy did really well. We have not received any results from that testing yet.  Friday was really rough. Alex had a test called Anorectal manometry. I will spare you the details, but it tests the nerves and muscles in your rectum. It was painful, but worse emotionally then anything. I did get a call Friday afternoon letting me know that it was abnormal and that Dr. O will be ordering some more testing/procedures.

Maddy working hard at Therapy. She always keeps Suzan and Nicole on their toes!


Maddy doing her sweat test

Last night, I was lucky enough to get to have a girl's night out with some awesome ladies who have been so supportive to me and our family over the past few years. It was a nice break and we had some much needed conversation and laughs.

We had/have some really exciting news about our Maddy this week. One is she is really trying to potty train. She REALLY wants a big girl bed and knows she will get one if she can consistently use the potty. She has been wearing panties most of the time since Thursday and is really trying hard. We also found out that Maddy will be attending the preschool at our church two days a week starting in the fall. We are so excited for her to get this opportunity and so grateful to our church who is always willing to work with us regarding accommodations for the kids.

Tomorrow will be a rough day. Alex and I will head to the hospital first thing in the morning. He has multiple things happening while in surgery. Our surgeon will start and place a new port-a-cath and remove the PICC line in his arm that we have been using over the past month. The Dr. O will get his turn. he will repeat the test they did on Friday, he will do a colonoscopy and take biopsies and he will manually remove the air that has been causing the pseudo-obstruction is his intestine since January. After they are both done in the OR, he will be transferred to the new Heart Center to complete the Trans-Esophageal Echo. They are hoping everything will be between 2-3 hours. Please pray for us tomorrow, especially Alex who is so nervous about he surgery. He hates getting a new port because he knows it is painful for a bit after especially when needing to access it.

Yesterday, Alex auditioned to take part in the Summer Theater Workshop put on by our church. They spend three weeks preparing a show and then have three performances at the end.

Through all the struggles we see so many blessings. We see kindness and love. I think one of my very favorite things to watch is to see my babies encourage and love one another. Alex is always Maddy's biggest cheerleader. He loves her so much and always lets her know. Maddy has become quite the nurturer and is so sweet when Alex is going through anxiety or hard testing. She wipes his tears, brings him tissues and tells him over and over, "It's okay Bubba. I will always be here with you". Their bond is amazing and I am so glad they are so close despite their 10 year age difference.


It has been really fun over the past few weeks to get so many messages from friends who have seen Maddy and Alex in local Kroger's. They are Champion's For Cook Children's Hospital and Children's Miracle Network. Alex just thinks it is cool that he is "famous"!









Thanks to everyone who has been with us and helped us over the past month. We are so excited to get tomorrow over with and turn our focus back to some fun times!

Ali

Saturday, May 13, 2017

Trying to get back to Normal

This week has been all about trying to get back to normal. It has been really hard for all of us to get into our routine! Maddy was back to therapy this week and we had a few Doctor's appointments. On Tuesday, Alex had an appointment with Infectious Disease. She was happy with how he is doing and decided we are experienced enough at doing IV antibiotics that they don't need to see us weekly as previously planned. That was a nice surprise!

On Friday we saw GI with both kiddos. I was pleased that he had a plan on trying to sort out both. For Alex we are slowing restarting feeds at half strength. Dr. O is also going to increase his calories quite a bit in his TPN as he has lost 10 lbs since January. On Friday Alex will have some unpleasant testing to see if we can find a cause for some of his lower GI issues. Then Dr. O will piggyback on his surgery next Monday to try and manually remove some of the huge amounts of air in his colon. He may also perform another procedure depending on the results of Friday's testing.

Maddy has only gained 1 pound in the past nine months. She has also started vomiting at night. Dr. O wants to look at her with fresh eyes and make sure we are not missing something before assuming she has the same issues as Alex. He ordered a ton of labs, urine and stool tests. She will also have a sweat test to rule out cystic fibrosis and a gastric emptying scan. Based on those results he will determine the next steps.

Please continue to pray for us as we are all drained after the past month and have another tough week with the testing on the kids this week.

Ali

PS- Sorry for the short, boring update!