Love being home

We are loving being home and being able to do all the normal, happy, family things we missed. Mac lost his 2nd tooth this morning after church. He went to his sister’s birthday party at a trampoline park. I was so worried he wouldn’t be able to participate and would get upset but he jumped a little, rested a lot lol. He’s pretty good at listening to his body and stopping when his heart has had enough. I feel he is calming down emotionally. He still freaks out often but not as much and he calms down faster.. He’s sleeping a little better, eating a little better. His blood work came back and looks a little improved. Everything is baby steps with this new pacemaker - it will take time to see improvement which can be frustrating if we were expecting big changes right away like after his other surgeries. 

We are blessed in so many ways - every day with Macsen is a blessing. I don’t think any of his Boston doctors felt confident Macsen would survive this last surgery. They went back and forth on whether it was the right thing to put him through. There was such a solemness before they took him back - not the confidence we were used to seeing with his other scheduled surgeries. They visibly looked surprised, relieved and amazed he did as well as he did. That’s such a hard thing to recognize in your child’s doctors faces - disbelief that they have survived. We continue to pray his heart failure improves and that we won’t have put him on the transplant list.

Warrior Beads of Courage

Macsen is a Warrior.  I know this because I have seen him handle some of life’s most ridiculous challenges with grace and courage.  I have seen him shrug off what would bring some adults I know to their knees.  He is a warrior, and a survivor.  They are home now, trying to take it one day at a time, and redefine “normal.” They amaze me every day.


Recently, my sister posted this picture of Macsen with his string of beads from the organization, Beads of Courage.  My sister said, “Every one of these beads is something hard - a blood draw, an Iv placement, a surgery, a sedation, an echo, ekg, chest tube removal, getting up and walking for the first time after surgery, on and on. And these don’t even represent half of it - often one bead represents many of the same procedures.”

Post op appointment

Mac did great during his appointment today. His pacemaker interrogation went ok. The machines are still double sensing so sometimes it looks like his heart rate is super fast (tachycardia) but it’s not really. But the electrophysiology doctor was concerned. Apparently Boston and Birmingham arent talking to each other yet so I have some emails and phone calls to make. 

We are still waiting on lab results but some are back - his uric acid is still on the high side so we won’t be cutting out the med that helps with that. And his BNP is back already - it was over 3000 while we were in Boston and is now 1700. Still very high - normal is 0-100- but much better than 3000.
His doctor wants him to recover for 3 more weeks before going back to school.
This is his prize/bribe for being such a good boy today - a suction cup crossbow he loved at the hospital camp.

ses included!

Happier at home

Mac is happy to be home. He’s playing with all his toys he hasn’t seen in a month and is just happy to have some alone time in his room. 
He is not eating well - he says he’s hungry but nothing sounds appetizing and we make him several things he thinks he wants but then doesn’t eat. 

He’s still really struggling emotionally - he has breakdowns constantly over things that never used to bother him. He screams and can’t tolerate teasing of any kind or being reprimanded - he falls apart. He’s still having shoulder pain but it seems to be better. We haven’t had to give him Motrin in 3 days. But I wonder if his general crankiness is bc he is still in pain. We see his chiropractor Monday who I hope can help.
Tomorrow we have a post op appointment in Birmingham. They want all the usual stuff - blood draws and X-ray and echo and also check out his new pacemaker. It will be a big day. I hope they can give us a plan for when we should try to get him in school. He is not really better then before surgery - he’s still in extreme heart failure and he is very medically and emotionally fragile. But he also loves school and I want him to live his life, I want him to have these experiences like other kids.

Landed safely

Mac and I landed safe and sound in Dothan. Driving home ❤️❤️❤️

We can go home!!!

Mac did well during his appointment and we are now waiting for our flight home!!!!! Thank you so much Emma Jean for driving us to the airport and dragging both our 50 lb duffels to check in ❤️❤️ We are so excited to go home!!!!!

Mom and Mac's adventures in Boston

Mac and I had a fun day walking around and riding the “train” today. We went to Boston commons and fed pigeons and played in the water. We went to Chinatown and had delicious Chinese buns and dumplings. We walked to Fenway and ate ice cream by the stadium. We went to a wonderful toy store and played with his new train on the ramp at the Yawkey Inn. Last night he made a pillowcase with Marie at the Inn and took his first bath in a month. Tomorrow is his last appointment before we head home

Discharged!

Such a great day! Macsen was discharged after a month in the hospital! He went to the Hole in the Wall day camp at the hospital and did archery, batting practice, science experiments, artwork, made a T-shirt and got prizes. We got into the Yawkey Inn(like the Ronald McDonald House) for our last 2 nights in Boston!!! He and I went on a walk and got ice cream and a duffel bag (we are going home with more stuff then we brought lol.) It was such a nice walk - so great to finally be outside again ❤️ One more appointment Friday morning and then we get to go home!!!!

Alternative pain treatment

We had a visit from Dr.Lin - a pediatrician and also part of the alternative pain team. He put some acu pressure dot stickers in Mac’s ears and touched a place in his ear with a little zapper thing - no needle or really any sensation at all except the zapping sound. I think it helped a little - no pain meds needed this morning. We are still waiting for rounds to see what the plan is for today but his team was hinting at discharge soon! We’ll have to find a place to stay for a few days so we’re sure he’s stable enough to fly home.

Scared to say the D word

So there is a pretty good chance, barring any unexpected downturn, Mac will be discharged tomorrow! We have a 9 am Friday appointment but hope to come home soon after. We both can’t wait to be home but I am afraid to leave lol. Such a weird juxtaposition if feelings. Mac had some great moments today and some really low moments when he was very tired and said he wasn’t feeling good. It’s going to be a big adjustment off the monitors, no more daily labs to see his trends -he better? Worse? Is he getting fluid overloaded or too dehydrated? Does he need potassium and that’s why he’s so tired again? It’s wonderful and horrible being off the monitors when you worry constantly that he might be getting worse. We don’t know how much time - if any- this pacemaker will give Mac. It’s not like after his other surgeries where there was a lot of research showing the surgery would help him live a longer and better life. We just don’t have that reassurance this time. And after that emergency situation in Maryland I am just so afraid to leave

Busy day for Bubs

Mac has had a busy busy morning. Someone came to cut his hair, he met Miss Massachusetts, Miss New Hampshire and a slew of other beautiful ladies who were so very sweet and helped him make tons of stuff. He then had Reiki to help his shoulder pain - it really seemed to help him. He had his chest tube suture removed And he met with his therapist and Child life❤️Later he has his 3 D echo.

Aaron and the girls are home

Macsen hugging his nurse Julia goodbye tonight, They work 12 hour shifts which is great for continuity of care but it’s sad when we only get them for a few days before they need time off lol.
The kids and Aaron got home at like 2 am 😞 Poor guys are exhausted but they were happy to get to the last day of “At the Movies” at our awesome Church with U. I hope the girls have a wonderful first day of school - I’m so sad I won’t be there to walk them in and meet their teachers.

A day in the hospital life

Mac had a good night. They silenced most of the alarms in our room so we didn’t wake up every time he had PVCs or his heart rate dropped or rose beyond his set parameters (which is constant bw 6pm - 11 pm for some reason.)
Today we went for a big walk and I only had to carry him 1/2 the time. He ate a 6 in sub, 3 breakfast sausages and a popsicle. He’s only on 1 diuretic now - but a larger dose, a blood pressure med, enalipril, and a med to lower his uric acid. 

Tomorrow he is getting a 3D echo to try to see if he has had any visible improvement in his heart function. It is probably much too soon to see progress but I still pray we see some.
I also pray the doctors feel he is well enough to get discharged soon. He has been in the hospital for 26 days since the beginning of July. This is by far his longest hospitalization and it is not good for him or any of us actually. The thought of living in the hospital for a year, waiting for a heart transplant, sounds awful 😞 I pray this pacemaker gives us many more years before we have to start talking about transplant again.

Oh sugar sugar

King size ice cream cone for the little man ❤️ Tonight we are going to cover his Pic line and give this sticky little person a shower lol. He has wanted so much sugar today - goldfish dredged in syrup and or honey, juice, and now ice cream! He also ate 7 sausages and an adult size chicken noodle soup. He seems to be tolerating being off the milrinone so far!

Homemade biscuits?

We had a super special delivery of warm homemade biscuits from our new friend Emily Chapman❤️ They were delicious as were the berries she brought. Thank you Robyn for sharing your sweet friend