Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.
There has been a little set back.. Gator is holding onto a lot of fluid.. Everything is swollen "down there" so he can't peep it off.. He moved to the recovery floor for a couple of hours but needed more and more oxygen. He got to 12 liters and they needed to move him back to intensive care..
You can see in his little hand how swollen he is. We have put his folly catheter back in so it will come off better..
Once we get the fluid off him he should breathe and feel much better..
We really needed full face scuba gear. Now he looks really cool for his Navy Seal costume.
Gator had a good night, he is having a little bit of blood pressure issues. Those are related to the pain he is feeling. He is trying to be stoic and not push his green button. We are trying to gently remind him that staying on top of the pain will help him heal faster.
Our plan today is to let his tummy rest from food.. To let him sleep as much as possible.. And to make it a very quiet day.
He was able to have his folly cath removed and worried all morning that he was without "drawers". He told everyone at least a couple of times he wasn't wearing any. I brought up a bunch and pj pants, so he is back in business..
Our sweet friends the Dixons and the Kiesewetter's for your thoughtfulness.. It sure makes things better to have you in our lives.
Waiting is not something I am very good at. I have learned it is necessary, but I dislike it. Especially waiting to hear how things are going. I know most people might feel this same way. So I am doing a quick update so we can all sleep.
Gator boy did great. Doctor Meyers (who reminded me of my Auntie Mary in her manner and kindness) was amazing. Also, our anesthesiologist was fantastic. He said while he was taking care of Alex he would be his best friend, stuck to him and ready to do all that was necessary to keep him safe.
Doctor Meyer explained that the liver is in 8 quadrants. They removed the entire #2 quadrant. Or the size of an orange. The liver was between hard and soft, bleeding was controlled and when we saw our boy he was even extubated.
Recovery will be a long road, but we are so thrilled that he CAN recover.
We are going to adjust our plans for our family trip. But I am so absolutely thankful he will be with us.
I want to share that as trying as this has all been and as emotional as this has been. We still feel the love of our Savior. We are also comforted by the messages of love and prayer we receive.
I am also thankful to everyone who help with the other children. My dad stepped in tonight and took Ry to activity days.
Papa and Grandma Homer took some Chick-fil-a up to Gator last night.
These brothers hung out yesterday.. Gator can't wait for Asher to be big enough for Legos and race cars..
Alex went back for his liver surgery a while ago and we just got our first update that they started about 20 minutes ago and everything is going good.
Our next update won't be for an hour to hour and a half...
Here's what we learned...
This is and has the potential to be a very large and dangerous surgery. They will be monitoring Alex very closely and as always take such great care of him.
They will be cutting a line from side to side and then from the center up toward his sternum. This gives them access and visual of the major arteries going and coming from the liver. This organ acts as a blood filter so imagine how close they are working to his amazing new heart. Normally they like to give these types of patients an epidural to control pain after surgery, but because of bleeding risks they will only be able to help manage his pain with a pump thing.. It's going to be ugly to wake up from.
The surgery itself will be to remove the infected portion. Unfortunately they need to feel the liver to see if it is hard as a rock or soft. Inflammation can cause it to go very hard. If it is hard trying to cut a rock is not going to go super smooth. They would most likely need to remove enough of his liver to including the inflamed portion. That is a total wait and see thing.
He will still need his drain, PICC line, big art lines(neck) and we are planning on seeing him come out intubated.
It all sort of socked us in the stomach. I just assumed we would be going in real quick to take this sucker out.. It's way bigger than that.
Alex had a pretty good night. He has needed a little oxygen at night to help his sats stay up. He overall feels like he has flu like symptoms. Tummy ache, fever, fatigue. This illness is really kicking his bum. I should note that this is not just the Aspergillus(fungus) but the rhino and noro viruses. We have been careful to protect his kidneys because they can get unhappy pretty fast on the two antibiotics. To further protect them, one of his antibiotics was changed to Voricanazole but then he stayed on caspofungin.
His CT showed no fungi in his brain or nasal cavity. They did see something in his lungs but at this point believe it to be related to rhino.
So far they have been able to remove about 148 mls of infection. I had someone explain to me in regular lady terms so I could understand how much that really is.. So 30mls (or CC's) is equal to 1oz. That is close to 5 oz of fluid infection. A cup is 8oz so a little more than half cup. Eeeewww right? For a little guy, that's a lot of infection.
Alex will be having the surgery to remove the infected portion of his liver on Tuesday by Doctor Rebecka Meyers. She is THE BEST in the country.. Right here at our very hospital. Another blessing for our family.
One question that keeps coming up; how in the heck did he get this mega fungus?
Well, this is an environmental fungus that is in dirt, he could have breathed it in by being outside or inside (or upside down) it just is there. They say we can actually have these crazy fungi in our bodies, a immunocompetant person is able to keep it under control. Alex has such a weak immune system things like this can easily get out of control. So nobody "gave" it to him. We can't live in a bubble and we can't expect everyone to treat him this way. So we will do what is necessary to get better and keep living to the best of our ability. Every now and then get a serving of humble pie.
Thanks for every prayer, text, call, email, visit, child care.. It seems we ask a lot of you all so much. Just know that we love you and are thankful to have you in our lives.
Alex had sort of a rough night. He had an upset stomach this morning, but seemed to perk up after emptying his stomach. Daddy did the SOJO bike ride without his Gator boy, this was supposed to be their ride.
today was also supposed to be Lagoon day for Gator who worked hard in spelling.
*sigh* he can do it next year.
After talking to his doctors it sounds like we need to move forward with having to surgically remove the infected portion of of his liver. Also with this specific fungus it spreads to other organs and parts of the body. Most worrisome is his nasal cavity, brain, and lungs. If the infection is in these places we will also need to take out or scrape out the infection. To help us see where the infection is Alex went down for a CT.
I know what you are thinking.. They are saying everything points to NOT having it in his brain.
We don't have the results back yet.
He had a nice big lunch and is watching a movie and taking it easy. He has been sleeping a bunch. This has really been a drainer.
But, the beginning is muddled so here is my best recollection..
Alex has been having fevers in the evening for a while.. Well, since September. We have been watching him closely and going in for regular testing and checks.. Nothing has ever come up and we just couldn't figure out what the heck it was. On Sunday he started to feel so yucky that we just weren't feeling confident in our home care. We were able to get a squeeze into clinic. I love that his team will just go with it and will lay their eyes on him. Eden went to our friends the Bates and I brought May and Asher along for the.... Eeeeerrrr.... Fun????
Because we were an add in, our appointment was kind of squished in here and there. Before that sounds like I am complaining, I am absolutely not. Because during our wait he started having chest pain, which set off all kinds of red flags.. What a blessing to be there at the hospital when that was happening and not in the car on the way home.
Now we needed an EKG and echo... His amazing new heart looked fantastic... The tech who was performing the echo did notice something lower down. She confessed that she is not a liver gal and went to grab another set of eyes. This person saw the same thing but also only works with hearts. They decided to pull in Doctor Molina, who also sees this weird thing and is not a liver doctor. Alex is then admitted and an ultrasound is ordered for his belly. It is clear on the ultrasound that Alex has a mass. Now we need a better picture. He had and MRI...
The white part is the "concern". It's an abscess causing all the tummy trouble and yellow coloring. Things sort of went downhill. Alex's body is trying very hard to fight what we found out is a nasty fungus called Aspergillus. eeeeeewwwww..... this is a nasty nasty fungus.
-He got a PICC line to start the crazy antibiotics
-He is currently being watched in the CICU
-He has a drain in his liver to get out all that fluid.
We just keep adding things to his "street cred"
-Lasr, we have discussed the likelihood of a surgery to remove the infected area of his liver.
We haven't made any final decisions because these discussions happened with me, and I would like daddy to hear all the information and we can make a decision together.
In the mean time...
The girls have been off to play with the Drummonds, Bensons, Chenney's, Bates, Petersons, G&G Homer and Clawson. My little Ashy can't go into the ICU.. More for his protection since he won't be fully vaccinated for a few more months. So in the meantime he spent the day today with the Chenney's. You are all so fantastic.. Thank you for helping out in my crisis.. By far the hardest thing for this mommy is getting my little peeps to helpers and activities.
This sweet friend is Craig. He has been to visit and help Gator get his mind off of being where he is. Today he helped Gator forget his hungry tummy before going down for his PICC line. He is so understanding and fun to visit.
Asher and I tried from home to make Gator giggle..
Don't worry everyone.. I laughed and laughed until Asher got me "back".
And we got a couple of Gator and mommy selfies..
Notice his amazing butter cream coloring.. Oh wait.. His totally yellow yucky color..
Looking forward to a nice pink boy again.
Keeping this updated is super hard because of baby, girls and taking care of Gator sooooooo. I might be slow at getting this accomplished. But I am not trying to ignore you if I am slow at calling or texting/Facebooking you back..
My Eden turned five. She is completely into having fun with friends, going to preschool, and is a great helper at home. She plays well with May (almost all the time, unless they both want the exact same thing) she just finished up her first season of soccer, she scored two goals at her very last game. She is doing a fantastic job at dance class. She taps and tumbles and does ballet. She can unload the dishwasher in about five minutes and scrub a potty like nobody's bad business. She is doing great at writing her name and can read every stop sign we see. Plus also, she informed me that my name starts with a B. I just love her so much.
She has a couple of friends who celebrate birthdays right around hers. This year was a family year so we didn't do a party with everyone, and no gifts.. We just got the girls all dressed up in their princess dresses for a Princess punch party! They made sandwiches and cut them out with cookie cutters..
We painted nails and did makeup.. And they decorated cupcakes.. They all had so much fun.
That evening we ate at Pizza Pie Cafe as Eden's choice and then went to Build a bear (you must sell your right arm to pay for it) did you know you can buy a closet for your pet? It's true..
She was so thrilled. She named her, Glitter. They share a birthday:)
Alex did a story with Hope Woodside about organ donation. We hope others will be inspired to become organ donors. How hard it must be to think of organ donor while you are in the midst of grief. We are thankful everyday for our donor family.
We are in the middle of red ribbon week. For Hero day Ry wanted to dress up like me.. I sure love that girl.. I told her to throw on some yoga pants and sling her shirt with baby barf..
Gator had about twenty people to dress up as, daddy being one of his, but settled on Doctor Su/Lal his cardiologists..
I think it's super funny when the babies can finally sit in this chair.. May calls this Asher's hippopotamonkey chair.