6 Weeks Post Op and Rocking it!

We are 6 weeks post Titus's Glenn operation now, and he is doing so great! He had his last post-op cardiology appointment today and we will not be going back for 3 MONTHS! We will continue to give him a half a low dose aspirin per day but otherwise just let him be a baby and do normal things...gosh what a miraculous thing!

Titus is now just over 7 months old, can sit up very well on his own, and has started to make his move to crawling. He has been drooling and gnawing like a dog on anything he can get his hands on. I can feel both bottom teeth ready to surface any day now. He also started grabbing at everything on our plates and smacking his lips together, so we tried to introduce banana, oatmeal, and sweet potato, but he just is not ready. He gags and chokes until red in the face. I am not too worried about it at this point, Evan was not ready for food until closer to 8.5 months either. However, I have to keep in mind that Titus's journey has been different and that many times heart kids develop scarring from intubation and we definitely want to be proactive in recognizing any special needs he may have in the coming months. We will keep trying foods for fun from time to time and if things do not improve by 9-10 months we will call on a therapist to see if anything was damaged from his 3 intubations.

Even though our next appointment is not for another 3 months, I will be updating the blog regularly! Now that things are settling down a bit, we hope to be more active in finding ways to help other heart families locally. If you know of another family facing these challenges that could use some extra support, please send them our way!

Titus at the Cardiologist office waiting for his last post-op appointment...He is such a social butterfly already, bringing so much happiness and light to all he meets with his larger than life smile....

 

Sorry to leave you hanging!!!

As most of you know, we were discharged and headed home the morning of March 28th! Yes, you read that correctly...4 DAYS!! Exactly 96 hours after after Titus's open heart surgery, Titus was at home chuckling away in his jumper! The entire floor was surprised with his speedy and rather uneventful recovery. God is so so GOOD!!!

 Leaving the Hospital

I apologize to anyone following us that is not also on Facebook and may have been hanging in suspense. Despite good intentions is it so difficult to remain faithful to completing this blog, even on just a weekly basis. Spring has been in full swing and with two under the age of two, time is so hard to find and so valuable! I find myself grabbing my pillow at night rather than the computer...nothing beats a good nights rest when you need endless energy to keep up with the daily demands of these two goofballs. But ya know, I wouldn't have it any other way. I wouldn't trade either one for a billion dollars...but I wouldn't give you a dime for another one right now either!

He can almost sit up alone like big brother...

Titus has been doing so well since coming home. He is red cheeked, alert, eating/sleeping great....all the things we were hoping for. He was sent home on 1/2 an aspirin a day and lasix (a diuretic to help him rid of excess fluid) which will continue for about 4-6 weeks. We had our two week post surgery follow up with the cardiologist as well. It was complete with ECHO and EKG and let me tell you, Titus didn't want anything to do with it. It seems he is confident with his repair and doesn't see the need for anymore snooping around!

Easter 2015

Enjoying the sunshine!

His surgery set him back a couple ounces but I have no doubt he will bounce right back. And relative to other heart babies, that is a drop in the bucket for him and we are so thankful for that God given cushion! His incision is also healing nicely. We are in week 4 of recovery and it looks great...no sign of infection and no raised areas like last time around. We will continue to pray for full healing and health for this little guy....thank you all for the prayers and patience in this update!

 

His incision after 3 weeks, when all the steri strips fell off.

We will be treating his scar with some essential oils once we reach the 6 week mark. I am excited to see what they can do for his scarring. We use them daily, even when we were in the hospital with Ty, but I have yet to use them for scarring like this! 

Psalm 150:6

Let everything that has breath praise the Lord.

Thursday 3/26

Today was a new day...Titus woke up bright eyed and bushy tailed at 4am! He even let out a few smiles despite still refusing to take the bottle. He can be a stubborn little guy!

Around 8:30am they removed his chest tubes and RA leads that were placed in his heart. This required 2 doses of morphine for pain relief, so he unfortunately went back to a less energetic state pretty quickly but this paved the way for him to be held and nursed. Yay! They quickly removed his IV from his arm as well, leaving just the one IV in his foot (he kicked the other one out last night) just in case they need to administer any meds or fluids later. Now that he has only heart rate and resp rate leads on and is off all meds, they wrote the orders for us to move to the step down unit as soon as the chest xray checks out. Whoohoo!

Titus quickly took to nursing and all looked to be going smoothly, until he spit up...pretty much everything he ate. This happened right after he received his daily dose of lasix (an oral diuretic he will go home on) so we figured maybe he just didn't like the lasix flavor much. It is very uncharacteristic for him as he never has had reflux or any spit up issues. But then he ate again later, and puked a good amount of that up too. No bueno.

His team stopped in and checked his belly out. They think that all the pain medicines he has been on the last two days essentially led to an Ileus, or extreme slow down of his intestinal track. Each feed was contributing to more distension and stomach pain. So for now, even though from a clinical stand point we do not need to be in the CICU they are going to keep us overnight and move us to step down in the morning sometime. Unfortunately since Ty isn't allowed to eat any longer he has to be put back on fluids. And of course Titus kicked his last good IV out and so they had to place a new one...he is such a booger.

Prayers that Titus just needs a bit more time and it is not a larger underlying issue...he is resting a lot today so hopefully that helps and he wakes up ready to go!

Wednesday 3/25

The nurses and doctors said it was a good night, but I could most definitely beg to differ! They had some challenges in managing his pain. It seemed like they would up dosages or frequency of morphine, toradol, and tylenol without much effect and we did not want to up the dosage of Dexmedetomidine since that is the anesthetic keeping him drowsy and lowering his heart rate and respiratory rate. Dex is a narcotic and so we want to wean that ASAP...its also keeping him so drowsy that he had no interest in eating overnight.

He is doing much better this morning (Wednesday). Its actually been 5 hours since his last morphine dose, which is a huge improvement over last nights hourly episodes requiring more doses. Praise! He also got to put some food in his belly and took 150ml of milk from the bottle. I was so relieved to see that. I was so worried he would not take the bottle and we would be left with a grumpy baby until the staff decided breast was okay. They wont let him go to breast until they monitor a couple ins and outs to make sure things are working okay. Unfortunately, we tried another bottle, and then another and he will not take anymore. We will see how long he goes (and how long my patience lasts!) before morning when he can go to breast!

Prayers for God to continue watching over Ty, keeping him comfortable and safe would be greatly appreciated!

Surgery Update 2

Titus's Glenn procedure went great! They did not need to put him on bypass, as Dr Manning had suspected would be the case, he was able to complete the entire procedure without it! And he was extubated in the OR, Praise the Lord!!! He is understandably grumpy, waking up and moaning a lot....it's heart wrenching but they say it is more from the anesthesia wearing off than anything pain associated at this point. The biggest hurdle is pain management right now. They have to find that perfect balance of pain medicine; they want him to remain sleepy enough to be calm and not pull lines, but awake enough to eat. This was one of the hardest parts of the recovery last time and is looking to be a battle this time too. One of the temporary side effects of the Glenn is that he will have major headaches until his body adjusts to the new pressures, thus the need to stay on top of his pain management. But I think he looks and is overall doing fantastic given his circumstances...Thank you all for the prayers! 

Titus 's lines:

1. Heparin--blood thinner until aspirin can be given on Thursday

2. Dexmedetomidine drip--anesthesia

3. Foley Catheter--to measure urine output

4. Heart rate leads

5. Respiratory rate leads

6. Chest tubes--to allow draining of any fluid around the heart

7. 2 IV lines-- for meds/blood/fluids

8. Peripheral line--Another safe access point for meds/blood/fluids

9. Nasal Cannula--carries extra oxygen until he is fully awake

The goal is to have only Heparin, heart rate leads, respiratory rate leads, and IV lines in tomorrow AND move out of CICU and down to a step down unit. PRAYERS and PRAISE! 

Surgery Day Update 1

6:30am  It poured heavy rain on the way to the hospital for Titus's surgery this morning. He wasn't allowed to eat since 2am so of course he was a bit unhappy about that! Jake and the same day surgery nurse were able to keep him busy with bubbles and pre-surgery checks. We had several nurses and staff stop in to see him before he went back, who can blame them with this face?!

Titus in his hospital gown watching the nurse blow bubbles

7:35am  I have to say, I have been anxiously and almost impatiently waiting for this day for quite some time. But now that it is here, I just want more time and cuddles with him. I feel like it just completely snuck up on me, and all the emotions, don't get me started. I cannot tell you how many time we have heard "the plan" for Titus, but the last time you know you are going to hear it, all the sudden your mind is racing with all the "what ifs", what does this mean, that mean? Risks all the sudden seem more pronounced. Its stomach aching. No one should have to hand their baby over....but we must. And we did with many tears. Not tears of fear or doubt, but tears of sadness that he has to endure this and of faith and joy that he will be in a better position once he recovers. 

8:00am  He is getting prepped now and we are anxiously waiting in a private family room, listening for the call that they are going to begin the surgery. Prayers. Many Prayers. 

Being confident of this, that he who began a good work in you will carry it on to completion...-Phillippians 1:6.

Ready for Surgery!

Here is the 3D printed model of Titus's heart! Doctors used his ECHO, cath procedure measurements, and MRI information to print this 3D model. Then they met in conference on 3/4/15 and put a plan together!

The purple is the right side of his heart & the pink is the left. The valves are white & aorta is red. 

The team decided unanimously that Titus is not a good candidate for the 2 ventricle repair and will undergo the Glenn operation. While we were hoping and praying for the 2 ventricle, this was not necessarily bad news; and we are certainly grateful to even have options and access to such great medical care! The main issue with Titus's anatomy is the location of the hole and his right valve. It almost straddles the hole and the valve "strings" attach to the tip of the VSD. Right now, the valve functions perfectly and for them to close the hole they would have to baffle through that valve, risking stress or damage to a perfectly good valve. Ultimately, its better to have a strong 3 chamber circulation than a potentially weak 4 ventricle that could worsen over time.

The Glenn is a fairly easy procedure, Dr. Manning (Ty's heart surgeon) has lots of experience with this procedure, recovery is fairly quick and it will last him until he is 3-6 years old. Undergoing the Glenn also does not mean that his next step is the Fontan procedure. They are hoping in time, with more developments in the field and with Titus's growth, that they may be able to make him a 2 ventricle by that time.

Glenn Procedure

1. The lower section of the pulmonary artery (with stenosis) that should carry oxygen-poor blood into the heart is removed.
2. Oxygen-poor blood coming back from the top half of the body is diverted directly into the lungs instead of flowing back into the heart before going to the lungs.

***We appreciate everyone praying for Titus and we graciously ask for continued prayer in the coming weeks during his surgery and recovery. The recovery stage will be particularly challenging this time since he is so active and will have restrictions he will surely oppose!

Cheese! 

Evan wanted to help feed Titus so we let him give him a bottle. Titus just chewed on it :) 

Great Grandpa Ellerman and Titus. I would say Ty takes after this side of my family!

Evan and Ty love playing together. I cannot imagine 6 months from now!