Merry Christmas!!!!

 

 

Check up and new Dr

We came to Pensacola for a 4 month post op check up with Macsen's cardiologist - everything is looking good on that front. She was very impressed with his bloodwork - said his albumin levels were amazing. She was surprised bc he is not eating at all and we have expected his bloodwork to reflect some nutritional deficiencies but I guess the supplements, 8 oz of breastmilk and 16 oz of fortified goats milk is enough for him? Not enough to grow or gain weight though - he's down to 28 lbs and 34 inches tall. 

He did so great during his echo. Even the part under his neck 

Then we saw a new GI. We had to wait FOREVER - kind of a pain but I know it's bc she is really listening and asking all kinds of questions which is good. She prescribed a new laxative - lactulous which I'm afraid M won't take. It's very sweet but we'll pick up the prescription and give it a shot. The magnesium we are giving him twice a day is obviously not working to help him go daily or even every other day. And she scheduled a procedure to take a look at his esophagus, stomach and intestines. It means another sedation but with him still not eating and now losing weight we need to figure out why. 

We are also going to see an orthopedic doctor to talk about M's leg and foot pain - he will need X-rays ... Again. Blood tests didn't reveal any deficiencies that might explain the nightly pains he has suffered for months - last night in the hotel room was especially awful complete  with a shower at 2 am and almost constant rocking to try to alleviate the pain. Never fun but especially frustrating with 2 other kids in the room trying to get some sleep. We are all exhausted today and after grabbing some lunch we are headed straight home instead of tooling around Pensacola like we normally do. Hopefully we will be home nice and early so we can all get to bed early. Macsen and I are also both recovering from a pretty intense cold. 

We are looking forward to 2 weeks of no traveling, sleeping in, baking, and Christmas!!!!!

Macsen catching bubbles in his mouth while we killed time in the exam room

Nothing new

Sorry I haven't posted in a while. We have been busy with end of the year activities. We are looking forward to Christmas break - Macsen loves having his sisters home. And of course looking forward to Christmas though I wish we could spend it up north with family. We are just traveled out for a while and will stick close to home. 

Not much news to report on Macsen. We are battling the same problems - lack of appetite, constipation, very slow growth and weight gain. We will be seeing s new gi at Children's in Pensacola. I foresee many tests in our near future. Right now M takes magnesium citrate 2x/ day to help him go #2 but he still only goes about 1x/week. Not enough. Yrsterday, I switched him to goat milk to mix with his meal replacement powder - hoping that cutting out cow milk will ease his bowel issues. I have tried so many things that just aren't working. None of the tried and true things seem to work or are impossible to implement with him bc of his inability to eat many solids. He only wants to drink water so suggestions to drink nectars, juices, smoothies just don't work with him.

Something has to give though - his growth and weight gain have completely flatlined. He doesn't sleep well at night - needing to be rocked and soothed though he never fully wakes - just cries in pain. 

On the bright side his oxygen levels look pretty good - 90 - and his heart rate has come down. 

Feeding struggles continue

Macsen is the strongest kid I know. Because my milk is drying up (Hello - 3 years pumping is enough!) I am having to give him more and more "chocolate milk" (at this point this consists of 3 scoops carnation instant breakfast and 1 scoop of IQ'd.) He is not going along with this plan and instead just holds out for his 1 bottle of breastmilk. He has cut down form 4-6 8 oz bottles to 1 of breastmilk and maybe 8 oz over the course of the ENTIRE day of the chocolate milk. We have played around with so many variations of mixes and nothing makes a difference - he is also refusing to drink it in his sleep which used to work. On the plus side he loves his speech therapist and asks me to "Eat!!!" several times a day. We sit down and go through several choices like he has at his feeding therapy but he still is only able to swallow the tiniest nibbles. Once he gets a teaspoon or 2 in, 1 nibble at a time, he's done and ready to get down. He can't go on like this. Something has to give. Watching him eat it is clear he likes to eat - likes the flavors- but he still gags on anything more than 1/8 of a teaspoon. If he would eat 1/8 of a teaspoon of yogurt consistently I would sit there for the hour it would take to eat 4 oz - but it doesn't work that way with him. A few bites in and he is done. I am very frustrated and worried and I know we need to keep pushing to find some answers. He has lost a whole pound - from his almost 30 lbs- in the past 5 days.
I am reading a lot about the vagus nerve - it can be damaged during heart surgery. If it is damaged it can cause all kinds of symptoms like nausea, vomiting, trouble swallowing, slow stomach emptying, constipation, pain. Sounds just like Macsen. There is a doctor out of Shands in Gainesville, Fl who uses a pacemaker to stimulate the stomach to contract since the nerve is not telling the stomach or intestines to contract enabling proper digestion. A friend's little boy is undergoing that surgery in a week. I am going to contact the doctor and will bring M to see him. Finding a GI that takes Macsen's unique circulation and possible side effects from the surgeries into account has been impossible for us so I hope this guy is "the one." His hospital is in Gainesville which is 6 hours away but he does have a satellite office that is a mere 2 hours. We need to also probably try to find a new endocrinologist as well bc little man is absolutely not growing. Today he was in 24 month pants and they were a little long.
In the meantime I think I will restart his Periactin - we stopped using it bc it no longer seemed effective for him. Maybe now, with such a big break, it will work again. Also his dose prescribed by his Atlanta GI is very low apparently and may be why it wasn't effective for him after the first month. He can't continue on 8-16 oz  of milk a day. He'll waste away. We would need to put in a feeding tube - and may still. If 2 years of feeding therapy can't help him learn to eat what can we do?
I think we are going to have to get some more specialists on board - doctors who don't say "He'll eat if he gets hungry." "Or my favorite "it's behavioral." Like an 8 month baby has learned if he gags on everything but milk he can manipulate his parents into doing what he wants. Right.
I am not looking forward to more getting to know you meetings with new doctors - I wish I could say "Here's my blog. Here's everything we have tried. Here's what's going on." Lol - if only. It's time though. Sadly, this last surgery wasn't the immediate, miraculous answer to Macsen's eating and growing problems despite my many prayers that it would fix those things.
He IS more pink and has better stamina. And he is talking up a storm which is the biggest, most drastic change from a month ago.  New Words - he can say many of his colors and he knows which family member likes which colors which is adorable and sweet. "Dadda - Boo-wa (blue.)" He points to himself and says "Waa (red)" and "Mama - bup-ple (purple.)" He says "He-whoa RoRo" for Hiro the dog. An improvement on just "roro" that he was saying last week. He says "Mummy (yummy.)" He says "Poo Poo Pee Pee" and can tell you which is which - "Whoa (no) PooPoo Mama - PeePee." And I've gotten him to say "MeMeMe" which is helpful bc he can't say his own name and never picked a sign like he did for each of his sisters so having a way for him to get across that he is talking about himself has been so helpful. I hope it starts helping him to cut out some of his frustrated screaming jags he goes on. He also is really responding to play therapy where he wasn't before - he now regularly mimics your sounds and attempts to sing songs where he never would before. The flip side of that is he is  rejecting the card based speech therapy aids that worked with him before. He completely shuts down when he sees them. He likes to keep us on our toes :)

Happy Halloween

Macsen had fun this Halloween. He would say "hee ho heet" (Trick or treat.) He was afraid of the scary houses and wouldn't get close to them but loved riding in the back of the truck, despite the sprinkle-y weather. His favorite candy is still the classic blue dumdum that turns his lips and tongue blue - yeesh! I hope everyone else had a wonderful time as well!

Was wop! Geen go!

"Wa wop! Geen go!" He says to his cars, sending them racing across the floor. Red stop, green go! So amazing to me when 2 months ago he couldn't string 2 words together. Now, I hear him trying to imitate our words and he picks up a new one almost every day.I attribute it to the increased oxygen he's getting and maybe the new supplements. In addition to the CoQ 10, multi vitamins, elderberry, magnesium, vitamins d/K2,  probiotics and iron I restarted his fermented cod liver oil and another food based powder to add to his milk called IQd. I have also been diffusing frankincense bc I read new studies have found it helps with recovery from brain injuries in addition to stimulating production of human growth hormone. Macsen is still not up to his presurgery weight of 30 lbs and hasn't grown taller either. I think another trip to the endocrinologist is in our near future.
He is still not eating food or sleeping more than 2 hours at night which is a big bummer. A really big one. I can't remember a time I wasn't functioning on a few hours of sleep. I long to be productive ... if he was waking to goof off I could put him in his own room to do that but bc he wakes crying - rubbing his legs, or feet, or bc he will finally drink some milk and take in some calories- last night he drank 3 bottles and needed 2 diaper changes in addition to sporadically crying that his legs hurt- I can't just let him cry himself to sleep in another room...

Slowly but surely

Macsen seems a little bit better every day. He chatters constantly now. On a 90 minute car trip he gabbled and chortled the whole way - seriously! The girls were all like "Macsen! Hush!" Giggling along with him. He has a few new words he uses consistently now - "whoa" for "no"- is one of his favorites. "Are you hungry Macsen?" "Whoa." "Do you want to go inside now?" "WHOA." "Are you ready for bed?" "WHOA!!!!!!"

1 month post op

Macsen's 1 month post op cardiology appointment went well. We got to stop the Lasix! Yay! No more giant wet diapers and we car seats. His function looks good too. and MAcsen was a champ - happily smiling the whole time. I was afraid he would be traumatized from surgery and experience PTSD like he did after his last open heart but he was calm and sweet as can be.

We had a great time camping at Gulf State park. they have wonderful biking trails and a huge pool that was a little too cool to use in October. Sadly, our "new" truck overheated on the way to his appointment and we had to wait on the side of I-10 for the truck to cool down. Not sure what the problem is but hopefully it is an easy fix.

New(ish) truck

Because this sight, although adorable, is getting too frequent on our old 2004 van.  Aaron's '99 Accord is sadly on it's last legs as well . We feel a little more confident making such a big purchase because  Macsen is finally POST FONTAN so we bit the bullet and got a new (to us) truck. We bought it locally at the large Chevrolet dealer - Enterprise Chevrolet. It should haul our camper well for all M's out of state appointments and Aaron just loves it. 

Macsen is 3

We had a small, family only 3rd birthday party for Macsen. He is still on sternal precautions so we thought it best to keep it small this year. He had a wonderful cake featuring his favorite character Baymax. It was made by a very special baker who donates her time and talent through a charity called Icing Smiles. I think Stephanie, from Tanta's Treats in /Ozark, Al went above and beyond - she even made a tiny Super Macsen. We loved the whole thing. He loved his new cars - our house resembles a giant Hot Wheels garage now. I gave him all his favorite foods to chew up and spit out and we played kick ball outside. It was a good day.

New member of the family

Meet our new dog! I found him on FB and after talking to his current owner (she kept him for a friend who moved overseas) we wanted to see if he and Macsen might make a good pair. He is so gentle and sweet and not super high energy. The kids are calling him "Hiro" today (he's had several names already) but this one suits him and is from one of M's favorite movies Big Hero 6. He's not house trained so that's the first thing we are working on but he sure has adorable, cuddly and sweet nailed. 

 Macsen has been doing really well. He is 3.5 weeks post op.  He is running all over the place. He has been enjoying all his cars and trains - mainly green ones this week. He says "Geen!" He is starting to play chase again and wants you to chase and tickle him. And he jibber jabbers all the time which I love to hear. 

He's still not eating and today started vomiting again,  not just retching. I was hoping that was over :( he has completely stopped eating any solids. I will probably restart his periactin that helped him a lot with vomiting and helped him gain weight. 

He's still in pain - especially at night and we have thankfully finally found a flavor of Tylenol he'll tolerate - bubblegum chewables we dissolve in a syringe. This is the 4th or 5th kind we e tried - he spits all others out, cries and fights. 

He cries and tosses a lot in his sleep - all night, every night . Tylenol definitely helps so I think it's pain vs night terrors or hunger, though he still drinks the majority of his calories overnight while he's asleep. He seems in less pain during the day though. He's playing harder and saying "ow" less. 

He turns 3 (!!!) 1 week from tomorrow!its surreal to me that we are here! With every milestone it's impossible for me to not remember the Drs giving us such poor odds for him, the suggestion to terminate our pregnancy or bring him home and let him pass away. His life so far may not have been all sunshine and rainbows but he has proven every second of his life that he deserves to be, and wants to be, here with us. No one deserves those rainbows more than him. I am excited to celebrate his little, yet mighty, miraculous self

Home!!!!!!!

Home!!!!!Feeling incredibly blessed, lucky, grateful, overwhelmed by the prayers, texts, calls, and thoughtful gifts. Pilots for Christ arranged for our flight home which is more than amazing. My sister took more time off work to bring us to the airport. Macsen was a sweet little cherub on both flights. And it is so, so, so good to see the girls. We have missed them like crazy. My house was beautiful and neat thanks to my sweet mother in law.

Macsen mostly played with his sisters (his YaYas) but did visit his train table too. He is sleeping soundly now in his own bed. I can't believe we are home and post Fontan. 

Now to get on with the rest of our lives.  Thank you everyone who helped us get here - we couldn't have made this journey alone 

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.