Moving on Up

Good morning everybody! Happy Sunday from the 8th Floor of Children's Medical Center. That's right! Kaleb is recovering so well physically, they kicked us out of the ICU. We are enjoying our new view, the ability to hold Kaleb a little bit easier, eat/drink in our room, and have a private bathroom. Yes! His recovery has far exceeded everyone's expectations, and mom and dad couldn't be more relieved to have the first surgery behind us without any major complications developing.

Now that his critical care is behind us, an unexpected(and unwelcome) complication has become obvious. Kaleb is experiencing withdrawal from the powerful medications used in the days following his surgery. Though we started noticing it in the ICU several days ago, it's been a bit hard to determine the cause with certainty until now. For the past 3 days, when Kaleb is awake, he's screaming and unable to be calmed in any way. This is HIGHLY unusual, as anyone who's met Kaleb knows, he's a really happy baby. We totally understand this is the first surgery. There's more pain. He's been weighed down by IVs, all variety of cords and lines, nasal cannula in his nose from oxygen-he even acquired a pressure sore on the back of his head from being in the same position for so long. He has every reason to be upset. We were prepared for many hours of crying. We have been shocked by the hours of relentless screaming that end with medication or passing out from sheer exhaustion. As you can imagine, Karl and I are doing the best we can, and mentally/physically exhausted from having to watch him go through this. Thankfully, we are meeting with a Pain Team today, that will assess his current condition, and create a plan for his recovery. Whatever the plan, we pray it starts helping soon!


Thank you for all the prayers, well wishes, emails/facebook messages, and visits! We are so blessed to have such wonderful friends and family. There is much more to post, but no time now. There's a sweet boy to comfort!

One day, one hour, one minute at a time,
Jenifer

Early post-op family picture

Recovering from open-heart surgery, he can still rock a faux-hawk!

Finally allowed to have a "bath", this shampoo-filled shower cap was soothing

Sleeping peacefully with his Bunny Lovey

Sometimes all you can do is tell him how much you love him...

Wednesday update

Everyone is doing great. Kaleb has had some pain to manage but cardiac wise he his making A+'s!!!!

Looks like our next surgery will be in a couple months instead of a couple of weeks. We're all happy about that! Right now it's possible that we could be home by this time next week.

All in all a very text book recovery. Jenifer is finally able to hold the boy!!! See how precious the moment is below!

T-Shirt Support

Want to re-post all the pictures of people wearing their shirts to support Kaleb. We are soo blessed to know so many wonderful people!!!
Karl

48hrs post surgery.

Our little man is doing extremely well! He is slowly starting to wake up. About an hour ago he really noticed our voices. It's hard to not talk to him, but we need to keep it low key so he can rest. Jenifer and I are outside enjoying the water feature while grandpa and nana watch the boy. It is nice to finally feel sun on the skin and get outside for a little bit.

As promised some detail information about what was all done and our future plans. There were two procedures that Forbess was planning on doing and those were the shunt and fix the pulmonary veins. The pulmonary veins all come together behind the heart and then go to another vein as one big vein. Forbess disconnected the big vein and connected that into the heart. The area where the big vein connected to the other vein was were the obstruction was. That should be removed now. Could grow back at the heart, but its not in our conversations. The shunt was the other procedure that was not done. In short when you go on bypass they have to clamp the stents to prevent blood from going into the lungs. Well if you clamp a stent, what happens? You break them, so that is why we were going to have to install the shunt. The stents are our shunt right now. Kinda ironic that due to a surgical procedure we were going to have to install something we already had. Well, that was not the case. Forbess was able to clamp between the stents and the lungs and keep the stents. Therefore very little time on heart lung bypass. Pretty special that Forbess made that decision on the fly when he got in there. 76 minutes total bypass time and his heart was stopped for 23 minutes.

So what's next? Now that Forbess got a good look inside it has been determined that we're not a good candidate for the 4 chamber heart. We'll have a 2 chamber heart. That is the circular system that I've explained and not the figure 8 circulatory system we have. There is still a chance we could have a 1.5 ventricle heart. I've never really explained this and judging on Forbess's mannerisms it's probably not going to happen, so no need to confuse everyone.. :). Therefore, our next heart procedure will be the Glenn.

When will we have the Glenn, I'm glad you asked.. :). Again, because Forbess was able to actually look into his heart he realized the veins were big enough now to do the Glenn. Where normally in Kaleb's case, he would need to be 8kg. He's 6.5 now which is about a 4.5lb difference. So it would be better to do the surgery now then later because there would be less scare tissue at his chest and Kaleb would not be at a high risk of infection. After the Glenn we would not be on the save at home program anymore and can take Kaleb with us to the store, restaurant, see family members, etc. no more quarantine. As usual there are steps to get there and that is where we are.

Kaleb needs to get stable enough to go back to the cath lab. They're talking that that would be next week. Amazing right!!! Currently we still have a breathing tube in and a drain line in his chest. We're looking like the other drain line will come out tonight or tomorrow and breathing tube out Sunday or Monday. So really not out of the question to go back to the cath lab at the end of next week. So the reason to go back to the cath lab is to check his pulmonary pressures. As you may remember prior to this surgery Kaleb's pressures were really high, about 200% more high than should. Everyone is hoping that by fixing the pulmonary veins (and obstruction) these pressures will decrease. Therefore, if the pressures are low enough we'll have surgery in two to three weeks. If the pressures are still to high, then Nugent will enlarge the stents or we'll let Kaleb grow and get bigger. Now, his oxygen levels play hand in hand with the pulmonary pressures. To high we wait, to low we go for the Glenn, etc. So we're in a waiting game at the moment. But in short we will have his next heart surgery in the next 3-6 weeks or 2-4 months pending his pulmonary pressures. And just to be thorough, his next surgery after the Glenn will be the Fontain when he's 3ish....

That's our life for the rest of this year. Yes we will have some GI surgeries soon as well, but everything is looking so so positive right now. We can't thank everyone enough for all the prayers and thoughts. We also revived a lot of pictures of people waring the shirts to support Kaleb. I'm hoping I can post all the pictures below. If not I'll have to do it later.
Karl

Morning update

Kaleb did very well during the night! Mom and dad got some sleep. Surgical rounds were great and the surgeon gave a little more information about the next surgery. All depends on his oxygen levels. I'll try to post in a couple days a more detailed blog on what's going on. Just know all this talk is very very great!!!

Have not had cardiology rounds yet but based on surgical rounds the plan today will be to ween him of the paralyzingly medicine and start removing some of the lines. Basically we're going to slowly wake him up. Still need to get another day under our belt before we can take a deep breathe on arrhythmia issues.

I'll try to keep updating everyone as the day progresses.
K

Post surgery update

Kaleb is holding well. So far no arrhythmia issues or pulmonary hypertension issues. He's pretty out of it but wakes up when he hears our voices, so it's quite time in our room! Mom just got a big nap and I stayed awake to listen to nightly rounds. We're both very tired but knew we would be. A lot of the reason why kaleb is doing so well is because the surgery was not that long. Our surgeon had planned on repairing two items. The placement of the stents were better than he thought when he opened up the heart. So he left them and did not install the shut. We did find out that kaleb will not be a candidate for a 2 ventricle repair (4 chamber heart). His anatomy just won't allow it. Still candidate for 1.5 ventricle but we'll talk about that later. The other part of the repair was the veins that come back from the lungs now go into the heart instead of a vein.

Some new news is that we may have our second surgery relatively quickly instead of 4-8 months. Maybe as soon as a month. This surgery we be the Glenn. You can read about it in kalebs heart condition on the upper right of the blog. However, we'll need to go to the cath lab first to remeasure the vein and artery flows and pressures. We'll keep you posted, but this was a new twist in the game plan. All in all today was a great day and so far kaleb as been behaving himself! We've received so many pictures of everyone wearing their shirts. Thank you all for your support. Tomorrow we'll try to post some of the pictures (little difficult on the iPhone).

We thank you all for your prayers and thoughts. It is the reason kaleb is doing so well!! Below is a picture if him post surgery.

Karl

Surgery post 6

Talked to surgeon and all is well. He did not do all the repair he said he was going to do. Which is great! We will be a single ventricle and not two ventricle but that's perfectly fine with us. Now all that we need to do is recover from this and get out of ICU. We got to kiss him and will get to see him in about an hour. Who oh!!!! B

Surgical update 6

Just told that we're done! They're closing him up and surgeon will be speaking to us soon! Yea yea yea!!!!

Surgery update 5

Kaleb's heart is pumping on his own!!!! They're making sure is blood is not too thin before they close him up! But it's possible that we may be able to see him in an hour for a quick kiss before he goes back to ICU.

Surgery update 4

Just got word that repair is finished and he will be coming off bypass shortly. All went really well!! They're going to bring him off to make sure no bleeding and forbess is happy with the way everything working. May have to go back on h/l bypass but hopefully not! Still hours from seeing him but so far everything is going well. Still long road ahead with his recovery that are more scary than the surgery.....

Surgery update 3

Kaleb went on heart lung bypass around 9:30am ish. So far everything is good and Forbess is working on the repair. They told us up to 2hrs on heart lung bypass. We'll keep you posted.

Surgery update 2

Got our first call. Kaleb went down with no trouble and they have started working on him. He's doing great.

Surgery update 1

We got to the hospital at 6:00am. Prep for surgery went really well. Kaleb was taken back a little after 7:00am. Mom and dad holding up best we can. Getting coffee right now at Starbucks. We're told this morning 6-8hrs for surgery and they'll update us every hour...