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!

Saturday, May 6, 2017

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























Tuesday, May 2, 2017

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

Monday, May 1, 2017

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