Home bound

Macsen seem to be feeling better today. He hasn’t complained about his tummy unless he was crying really hard. Last night was his first night without stomach or leg pain in a while and we celebrated with a donut ❤️
He started a 48 holter monitor - it is thankfully much smaller than the first monitor we got in the mail. He’s a tiny guy and to have to carry this monitor everywhere for 2 days - size matters!
With the fear of illness his school and I have decided to put him on a Home bound program for a while. He really misses his teachers and his friends so hopefully it won’t be for long ❤️

Rough days

Rough couple of nights for my MacMan. Stomach and knee pain Sunday night, and awful foot pain last night. We used all our tricks and nothing helped :( He is not eating well and he still has that blasted cough - he’s had it 4 weeks today. I’m so sad to see my boy feeling worse then he did before the cath in Philly

Some good news

Some good news this morning. While Mac’s BNP is still high at 900 (normal is 0-100) it’s come down significantly! His abdominal ultrasound was normal and his liver looks ok too. All good things. God is good ❤️

Abdominal ultrasound

Macsen has been complaining of stomach pain - sleeping with the heating pad on his tummy. It’s been going on for over a week so we don’t feel it is a bug and he’s not backed up. Getting an abdominal ultrasound to see what we see - he was so good. He also had to get more blood work which was super hard - maybe bc he already have blood this week

Pediatrician today

Macsen’s cough is not getting better. It’s been 3 weeks and it is just as wet and junky as ever. I brought him to his pediatrician to help me figure out what it is and if we should be worried. He got an X-ray today and another ekg. He also got some blood work done though he needs to get more done bc they didn’t do 1 of the tests his cardiologist wanted. The blood tests he did get look ok - no infection or virus. Waiting for results of the other tests. Some of the testing was at the hospital and with all the flu going around we aren’t taking any chances. He wore his little mask like a champ

Devastated

Today I got a notification Macsen’s visit summary was up on his MYCHART. Even though I know what the numbers from his cath mean and the words “decreased function” - seeing it in black and white, a new diagnosis after 5 relatively stable years ... I am shattered, just destroyed. Chronic combined systolic and diastolic heart failure. We could all use some prayers please

Pensacola appointment

Appointment is done. No blood draw this time bc she wants to give him more time to adjust to the changes they did to his heart and to the new meds. His O2 was 100. His heart function has not gotten better yet though - it has unfortunately gotten worse since his echo a month ago. His ejection fraction is also measurably worse - in the teens now.

Lightning McQueen always saves the day

So grateful to have found several of the Disney Cars Macsen loves on clearance at Walmart!!! Now I’m ready for his blood draws tomorrow and for a few others in the future. It takes at least 3 wrapped little cars to distract him enough from his fear during the blood draw. Otherwise he panics, turns blue from crying, his veins clamp closed somehow and his numbers get completely skewed. Being ready helps him and helps me as well - it gives us both something to do so we both don’t feel so helpless. Big post op cardiology appointment tomorrow. Little man is still coughing all the time - I’m worried it is related to his heart failure- and he’s pretty blue with activity :(

Still with the cough

BatMac doing a little construction work this morning ❤️ He’s been consistently satting higher since his procedure in Philly thank God! He’s taking his new medications like a champ. The effects of the diuretic are so strong we are having to go backwards to pre potty trained days which is disheartening to Macsen but he is getting used to it.
He has a post op appointment in Pensacola this week. I’ve had his records sent to Boston and to the Mayo Clinic as well.
He seems to have more stamina but he still has the wet junky cough he developed the day of his cath :(

Home!

We are home! Flight was great - Macsen was satting upper 80s low 90s (compared to to 60s and 70s 10 days ago.) I can tell he feels so much better!
Thank you so much everyone for your prayers, messages, pet sitting, childcare, chauffeuring, and guest room sharing. You made this time so much easier for our family. We love you all ❤️❤️❤️

snow days

Macsen had a blast today - we took advantage of our flight being cancelled bc of the snow hurricane that is going on here on the east coast. It was his first snow! We went to the thrift store and bought some snow pants and boots for him and his sisters. They stayed toasty warm while they threw snowballs and sledded. His stamina was surprising - better than it has been in months. Praying he continues to improve and has thousands of great days ahead

Overnight stay

Last night Macsen had to stay overnight in the CPRU because they did some surgical interventions during the cath. It was a really rough night with not 1 but 2 12 lead (12 tiny stickers and tiny clips) EKGs overnight. That meant twice a nurse came in and had to wake my exhausted sleeping boy and attach all those stickers, make him lie still then take all those stickers off.
It turns out I was right and the Digoxin was messing up Macsen's heart. It sent him into 1st degree heart block - it affects the way his heart is signaling and delaying the contraction of his atrium. My little man has been telling us for weeks that his heart was "beeping funny." I reached out, I asked his cards but it wasn't enough. I should have brought him in to get an EKG. Researching now and it looks like he should have been getting blood draws to check the levels in his blood and also me reporting what he described as his heart "beeping funny" should have raised some red flags that he might be suffering for arrhythmias - a known side effect of Digoxin and one that should have prompted his cards to investigate immediately. I am not happy. I am very concerned we may have really hurt his heart. More research reveals sometimes people need a pacemaker placed after Digoxin Toxicity.

Not good news

The cath and MRI revealed Macsen is in heart failure. The cath doctor closed his fenestration in his heart and coiled a collateral. His heart function is very stiff. His ejection fraction is in the 20s.
I've never been so sorry to be right. I am angry his team would not listen to me for months. That they tried to dismiss what I was seeing.

Cath and MRI today

We are in Philly. Macsen’s oxygen saturation’s have been dropping for hr past 2 months and we are here to figure out why. They have sedated him and taken him back.

Happy New Year!!!

We had such a fun New Year. We started it at 1 grandparents house.We couldn't stay long bc of the threat of illness so we moved on to my sisters house. We cooked all day, played games, had a dance party and got to see old friends, nieces and nephews. It was such a great way to close out the year. Today we leave for Philly. We have a very early surgery date tomorrow.