Super Macsen

Macsen's appointment went well today - chest X-ray was "beautiful," his breathing looks good, he's drinking milk again, his chest tube suture was removed and his O2 saturation was 90!! We get to lower his dose of his 2 diuretics and when we asked when we need to come up next his cardiologist said the most beautiful words "not for 3 more years (if he continues to do well)!" Say what? He will still need to see his Pensacola cardiologist in the next week or so and several times/year but that's easy. So excited. Post Fontan life already sounds amazing!

Discharged from the hospital!!!!

Macsen drank well all day in preparation for his 3 pm blood draw. They even let us leave the hospital while we waited for the results. We visited the beautiful koi pond we found 3 years ago when we first came to Philadelphia. 

Bloodwork came back perfect! So we are officially post Fontan! 11 days in the hospital this time - so much better than I ever imagined. I am so thankful for all the messages and prayers, the gifts to boost Macsen's spirit. So many people have been part of our journey and we are truly blessed by all of you.

 We have a follow up appointment on Monday so tonight we are enjoying some quiet time at the Ronald McDonald house.

Macsen tried to jump right in with the other kids in the playroom but quickly figured out he needs to take it easy. He tried to crawl but got stuck on all fours and I had to rescue him - oh yeah, my chest is held together with wires!  He'll get there and it will be tough to make him take it easy. 

Long night

Macsen had to be hooked up to an IV all night with more fluid. The consensus is he's very dehydrated. Duh - they have him on not 1, not 2, but THREE diuretics twice a day. The fact that he was only wetting like 2 diapers a day didn't alarm anyone - grrrr. So they cut his diuretics down to 1 twice a day, added in the IV fluids, cut out another med and they will do another blood draw at 3. He is noticeably puffy now and wetting tons of diapers. If all looks ok with this draw then hopefully we will get discharged today. 

He had a terrible night with lots of crying out, saying "ow."  Hoping it's just residual gi discomfort from the antibiotics he was on.we have stopped the ibuprofen as well in case that is hurting his stomach. 

He said he wanted to "eat!!" this morning and he chewed up (then spit out ) 2 pieces of bacon. 

Not getting out of here today

So, despite packing the car, picking up our home meds from the pharmacy and getting everything else done for discharge Macsen's bloodwork came back less than optimal. So we are here another night at least. I just want to cry. The resident tried to explain it to us - something about his electro lights being off and while his fluid in vs fluid out looked good on paper somehow theyissed he is probably very dehydrated. He has another hot pack on his good arm to get another IV put in and after he gets some fluids he will have another blood draw from a different site tomorrow to recheck. My poor bubs. He has very little real estate left on his hands and feet that isn't bruises from the pokes and Ivs. Please pray this saline fixes things and it's not an issue with his kidneys and pray for comfort for him. I just want to cry thinking about it :( 

24 hour difference

What a difference 24 hours,countless prayers,  3 rounds of IV antibiotics, and a ton of expelled gas bubbles can do! Macsen is like a new man! Walking, smiling, DANCING!!! If I hadn't witnessed it I wouldn't believe it. His bloodwork isn't final so we don't really know what happened but today his heart rate is 40 beats slower/min and no more fever. He's stil reluctant to drink any milk - I syringed in 4 ounces today while he watched a movie. So far he has lost 2 lbs which is frustrating. No one is saying the D  word yet but hopefully soon we can be released from the hospital. We can't head home right away bc his cardiologist thinks it safer to give him a little time before heading back to Alabama. So grateful he is better today - thank you so much everyone for all the prayers.

No answers yet

Fever was not caused by a UTI so now we are waiting to see if anything grows in his blood they took late last night. His white blood cells are really high and his CRP (measures inflammation in his body) is also elevated. But they are (what feels to me like) reaching for straws about what could be causing this fever and his increased pain. One theory is a bacterial infection from his chest tube. Other things they may look at as the day progresses is his gall bladder and his appendix but I feel that is a stretch. He is on IV antibiotics for 48 hours. So we aren't leaving today obviously. His IV he has had boarded up on his left hand, unused for days- kept in just in case he needed it- was bad when they went to use it for the antibiotics so now he has a hot pack on his right arm, waiting on the IV team to come stick and tape and board him up again. My sweet boy

Fever tonight

M felt bad all day - saying "ow" everytime we moved him, wanting to lie back down in his bed instead of playing, no walking. I kept telling everyone that he was worse than he was yesterday. At about 7 pm he said he wanted to go to bed - turned around right in the middle of his car ride/date with a pretty little toddler here visiting her infant brother and made snoring sounds while he pointed down the hall to our room. As soon as we laid him down he shivered and told me he was cold. His hands and feet were icy. His head was hot. He had a fever and kept pointing to his diaper all day saying ow. He's had blood and fluids tested now for different things so we should know soon what is going on. Hopefully it is an easy fix. I admit I am freaking out right now. 6 days post heart surgery + unexplained fever and pain = mama losing her mind with worry

Post surgery echo

Macsen was super chill during his echo. He did say "ow" when she got close to his incision but was very calm about it. Waiting to hear from Drs how they think it looks. 

Went for a walk to the Seashore house garden. It's a terrace with a great container garden. We sniffed basil and lavender but M was so groggy from the tiny dose of Oxy he got for the chest tube removal he didn't want to get down to play.

Chest tube out

Macsen's lungs look much better today and he didn't put much fluid out of his chest tube over the past 24 hours so they pulled his chest tube. It was traumatic but childlife did their best to minimize the stress by distracting him with Daniel tiger and a bubble machine. He did really well after he calmed down and his 2nd X-ray of the day looked mostly clear. He does seem to be in more pain today despite having Tylenol and a small dose of Oxy on board. The Oxy makes him so lethargic and seems to steal all the light from his eyes. We have gotten the ok to take him outside so maybe he can cheer up. He was super homesick this morning - he wanted his sister to take him on a tour of the house to see his cars and trains. He was so upset when she had to hang up to get ready for school. The D word (discharge) was mentioned today!!! Can't believe we may be leaving tomorrow.

Wagon ride # 4,567,000

M is a little sweaty and a lot cranky. Wagon rides are great until he sees someone else riding in another wagon or car. He points at them, shakes his finger no no no then points to myself emphatically like he's sayings"mine!!!!!!" He's not on O2 but sometimes his sats drop into mid 70s so we pop his oxygen headset back on him. His body is really working to get used to his new strange circulation

Day 5 post op

Little Man is looking a little shriveled this morning after all the diuretics . In my opinion his midnight X-ray looks better than it did (his nurse said so as well.) But his cardiac team hasn't confirmed any of that so I am still unable to give him anything to eat or drink. He is so desperate to drink he is asking me "Mama, blue? Mama, green?" Naming off all the water bottles he has. He is not keeping his sats up either. Same thing happened last night but as soon as he drank his milk they came back up. I think being so dehydrated is affecting his ability to get enough O2. 

The Oxy knocked him out the whole night - he barely moaned when he was lifted and put on the board for his bedside X-ray. But bc his O2 monitor kept going off and I kept getting up to readjust his O2 arm and mask I couldn't take advantage of his great sleep. I was up to witness this beautiful sunrise 

Update** 11:30 am. No chest tube surgery! M vomited all his morning meds but took his 1/2 dose of Oxy like a champ. He then walked all the way to the playroom. He played with trains and cars. I had to roll his O2 tank behind him and try to catch him by his hips when he teetered. Can't catch him under his arms or by his hands for 6 weeks. We went through 3 O2 tanks before he was ready to come back to the room. He fussed all during rounds so I didn't hear anything except that they want to see him off oxygen today! Yay! And are moving all his meds to oral - also a good step forward. He still has fluid on his lungs but with more movement maybe we can get it off. Thank you for the texts and messages yesterday. Thank you for all the prayers 

Midnight X-ray

M was totally knocked out by the Oxy. We woke him after 3.5 hr nap b/c he HAS to walk or he'll never move that fluid off his lungs. But he was so tired he was unbalanced and stumbled a lot and cried to go ride around. His eyes weren't focusing and he was rub, rub, rubbing his nose. :(

We got a few steps out of him then he wanted to go back to the room and wanted to get to bed where he closed his eyes and asked for milk. I hate what the pain meds do to him :( 

We are getting a midnight chest X-ray to see if we are in for surgery tomorrow to get another chest tube inserted. Please pray he won't need it. 

Feeling sad for my boy

Today M was so funny and sweet. Smiling and playing. Working hard to stand and walk in the playroom. He really enjoyed playing with his cousins, aunts and uncle (who had to go back home today - triple sad face.)  He was up all day but crashed in his stroller around 4:30. He was so cold and asked for more blankets - so unlike him. His feet are freezing again (they were so warm after surgery) and when I lay down beside him to keep him warm I could hear him grunt with every shallow breath. I called the nurse in and she said he's in pain. He's reacted to every big pain med so when they suggested Oxycodone I really didn't want to do it. I agreed to let them try 1/2 the dose earlier today and it didn't knock him flat or make him try to remove the skin from his face with his fingernails like the others did. To compound everything he vomited up his 3 o'clock dose of Tylenol. He played and played until he fell asleep. No naps today like he did all day yesterday but the grunting and shallow breathing have me afraid - is it the fluid, is it pain? So I asked for a higher dose. His heart rate isn't dropping lower than 118 in his sleep so that can be a real sign of pain. Tomorrow morning after his X-ray we will find out if he needs to go back in the OR to have another chest tube placed. In the back of my mind I am worrying that it's lymph caused by his extra lymphatics, that we've done the wrong thing getting this surgery and not pushing instead for transplant.

He just got another dose of the Oxy. He was so uncomfortable and I feel so overwhelmingly sad bc if i had just let them dose him like they pushed I could have spared him this pain. I pray this med  is the answer and doesn't hurt him, only helps him overcome the pain so he's not afraid to take deep breaths. He is so brave. I also have to step back and look at the big picture and tell myself it is going so much better than I imagined, so much better. 

And after my good ugly cry I am going to eat one of these delicious chocolate truffles made by a wonderful woman we met 3 years ago right here at CHOP. 

** update- he may be having a reaction to the Oxy. When he partially woke up he started itching his face and neck. And now, dead asleep his heart rate is still 118-122 😕 

** update 2. I and Macsen are both sound asleep. He is doing much better numbers-wise -- finally! Heart rate around 100 and our new oxygen saturation best-avg, upper 80s/low 90s. Huzzah! Thank you prayer warriors!

Bad IVs strike at 4 am

I don't know why Ivs always go bad in the middle of the night but it seems to be the case everytime we come. They caught it this time before it could do real damage but it meant another visit from the IV team at 4 am. Poor buddy tensed up as soon as they touched his arm.

It took half an hour to get him settled then X-ray came by. Um no. Turned them away and they can come back later. Now to try to get a couple hours of sleep.

Day 4

Cold legs but mom forgot to bring my baby legs leg warmers so the nurses made some from surgery socks. 

Today was overall a better day. It started rough with very little sleep for M, a 4 am X-ray and we had some tough patches - another allergic reaction, this time to delaudid with lots and lots of itching including in his mouth and ears, back and especially his nose and eyes. Thankfully he already had Benadryl on board so I can't image what the reaction would have been without it. He had an awesome nap bc of the meds but woke up crazy cranky and unable to open his eyes - coupled with the itching - it was not fun for him. We took him for a wagon ride though which distracted him enough that we didn't have to give him a second antihistamine. Those knock him out and we REALLY need him to stay awake, at least some of the time, so he can start moving, doing PT, using his arms, and eating, sleeping all day is not good for him. His X-rays looked cloudy on both sides now - more fluid- so we have to make him get up. He was still scared to get moved and would tense up and hold his breath but it was better- he wasn't shaking like he was in shock too which is what he did yesterday.

He also had tons of GI pain - pain meds back you up. And we tried several things ranging from minor to drastic but nothing worked. His sweet nurse, hearing he sometimes needed a relaxing soak filled a basin and we sat him in it. The pictures are hilarious / big baby in a tiny tub with his feet dangling out but too graphic with his newly exposed incision and chest tube still in. It didn't work SO we moved on to plan B, C, and D which all didn't work. We had a stomach X-ray and a bladder echo which showed some very little. Our nurse didn't want to go home bc she wanted to help him. Maybe 30 min after she left he found some trlief. After that he ate a few goldfish and we got some smiles and silly dancing to the Nubble Guppies theme song which gets stuck in my head "Bubble bubble bubble. Guppy guppy guppies." So that was the hilight of the day. That, and seeing my sisters, brother in law, a niece and 2 nephews who helped distract M.

Day 3 good night

Goodnight from Macsen. Glad we moved to step down - 1 step closer to going home - but today was not easy. Macsen is in quite a bit of pain that comes and goes. If he gets his Tylenol even 4 hrs to the minute he is ok. But sometimes the nurses get busy and it is 5 hrs, or 6 then he is in so much pain he needs something immediate and they give him IV delaudid to help him get his pain under control again. Delaudid  is a very potent, morphine like med. I think it is making his nose and eyes itchy like the morphine did too so we may need to start Benadryl to help with that reaction. 

He has had more happy silly moments today - I miss my sweet boy so much. 

But he looks at me like he is so done with me - smiles for everyone else but me :( I feel like he has lost trust in me, like I did this to him or I betrayed him by allowing these people to hurt him over and over again.  It's heartbreaking. He is now terrified of anyone touching him - if anyone looks like they are going to try to move him or they touch his body he starts to panic- shaking and breathing in strangled half gasps, his face purple, tears leaking down the sides of his face. His eyes searching but not for mine anymore -  for someone else to save him. I know time will erase most of this for him but not for me. 

Macsen had 3 Ivs and lines removed today - so much tape encasing his hands and feet holding the Ivs in place  had to be pulled off first. Then he had to have a new IV placed which took 2 attempts. Then, his night nurse thought his new IV was leaking so they had to pull off all the tape again - M was barely breathing he was so worked up :( it was awful.

On the great side, he finally drank same of his milk! And he ate some noodles and Italian lemon ice. He's asking for water again. And now, after more delaudid, he is sleeping.

Tomorrow he needs to poop. And play. He needs to try to walk. And we'll look for some puppies to play with. Big day. Good night everyone and thank you for your continued prayers and support - knowing you are all lifting Macsen and our family up has helped us so much. My sisters have been amazing - driving to PA , feeding us,  staying with M so we can step away for a few minutes, Washing our clothes, making us laugh, and just being here. And the kids grandmother Nana has done a great job distracting the girls and keeping up with their routines. We know they are in good hands.

Moving to step down

56 hrs post op and M got moved to step down!!! Rode out of the CICU in style. 

Day 2 Post Fontan

After a really rough night, Macsen's having a better day. Alex has successfully convinced them to give Macsen the supplements she knows are "tried and true" for his motility. Today's nurse has been awesome! So far he's been resting fairly well (staying ahead of the pain med schedule) and they were even able to go for a ride! Please continue to pray for pain management and rapid healing. Thanks!

Day 1 is almost over

There is talk of starting IV lasix - pretty standard and M is starting to look puffy bc of all the Iv fluids. Ironically, bc his blood pressure is getting too low there is also talk of pushing more fluids- crazy post surgery dance to find the right balance. Always feels too much like a guessing game. Also talking about starting Zofran bc post Fontan kiddos need time to adjust to the extra blood flow to their lower half/gut and vomit a lot. That really hurts when your chest is held together with twisted bits of wire. So trying to keep him from vomiting. He wants milk but we have only been able to give him 1 oz at a time / his O2 drops and his alarms go off. Strange that it is set to alRm at 85 when its always been 75. Post Fontan-land has higher expectations I guess. I have been trying to wait for the rounding Drs before I go to sleep but a really sick little one down the hall has set them back. Plus Aaton can't sleep bedside / despite the fact that there is s couch and sleep chair in here. Annoying rule. We will switch out sleeping tonight as neither of us wants to leave him to go sleep at the Ronald McDonald house. Too far away if something goes wrong. 

Resting fitfully

Macsen is now about 10 hours post op. His nurses are doing a great job keeping him comfortable for the most part but every half hour or so he has breakthrough pain. He whimpers, says "mama" "wawa" or "yaya" (what he calls his sisters.) he will open his eyes for a second but is so tired and still pretty drugged up on Dex and  delaudid. They started Iv Tylenol as well. He is on milrinone to help his heart - but "just a splash." And IV fluids. He has had only a tiny bit of water and ice chips bc they don't want to overload his stomach. With the second surgery the redirected blood flow causes headaches but with this 3rd surgery the new blood flow to the lower part of his body can cause GI issues - vomiting, nausea, bloating etc. he is asking me for milk - hasn't had anything to "eat" for 16 hrs now- but they want to wait. So hard. 

He is in recovery

My baby has pink feet. And pink hands. And pink lips! I am amazed! The surgeon said he had a little scar tissue adhered to his heart but it wasn't too bad. He was out of surgery in less than 3 hours!? We are now officially post Fontan! I feel like there should be confetti rockets or balloons or something. I am over the moon! 

Repair is done

The nurse just updated : Dr.Spray is finished with the repair and everything went well. They are closing him up now and we will meet with the surgeon within the hour to discuss everything

They brought him back

Macsen is back in the OR now. He vomited up his Versed, the medicine that makes him loopy so he's not anxious so I was worried he would be afraid. When I handed him over his eyes were a little unfocused so I think some of it must have been absorbed. He reached for me and said Mama but they distracted him as the walked around the corner. I hope he wasn't afraid. 

Nurse just came in and said he's all prepped and will be on bypass soon. Next update at 10

Tomorrow is Fontan Day

Tomorrow is Macsen's 3rd open heart - his Fontan. He will be getting the lateral tunnel - it's complicated to explain. I'll try to find a link later. He had s very long day of testing today but I was glad to have my sisters and nephew there to help him. We are first case tomorrow - F time is scheduled for 6 am. No mom milk after 4 am / that rule always changes. 4 isn't bad though, I'll set my arm to make sure I can top him off before the cut off. We rarely start these things on time. I am strangely calm - despite hearing all the complications that can happen to him, his heart, other organs and brain. I have faith that he will come through this. I know the prayers are holding me together. 

One more pic before his big day. He was so tired after 5 hours of testing today.

He had a good bath - or 3 before surgery. After his first bath he had an accident so needed a shower. Then he reacted to the presurgery wipes - itching all over- so we had to wash all the residue off. 

So thankful we got into the Ronald. McDonald house. It's been 2 years since we stayed here - we usually have to stay in hotels.

M's older cousin came to help him through the echo. His sisters usually help so it was great to have this guy here to step in.

Hanging out with his Aunts

Watching Big Hero 6 while we wait for our XRay

Nana has arrived

Tonight we picked up Nana from the airport. She flew in to care for the girls while we are in Philadelphia with Macsen. The girls were so excited to see her - talking faster and faster, louder and louder. Showing her the room she would sleep in, their favorite new movie. But as the night wore on K came to me - I could see she was worried. "Are you leaving tomorrow Mommy?" "No, baby. Day after tomorrow." At 6 she still has trouble with tomorrow, yesterday, day after tomorrow. She hugged me so hard and said she wanted to sleep with me. She is our honey badger - never getting worked up about anything - but she's worried tonight. Teary. Daddy cuddled with them while I put M to bed. I will miss them so much and pray everything goes smoothly so we aren't separated too long. 

Pilots for Christ

The pastor at our church recommended we look into a organization called Pilots for Christ. They are a wonderful organization that helps families get to their treatment centers. They have arranged and paid for our plane tickets to Philadelphia! We are feeling so blessed by them and all the prayers their FB followers have said for Macsen and our family. https://www.facebook.com/photo.php?fbid=805878302865753&set=a.110899489030308.13374.100003307727875&type=1