(Updated 6/30) One more virus & New Surgery Date 7/29

 Hello Everyone,

It's about time I updated you. We've had some excitement. It's been a while since I sent an e-mail. As you can see, we've had a some excitement. I've been trying to keep this blog updated even for my own records. I have a visual to get you up to speed. Lucas has just been struggling since the middle of April.

We've pushed back his surgery date 3 times. As of today he has been admitted to the hospital 8 times.

So the girls are done with the school year as of 6/13 and this last week we were doing well quarantining and staying at home. HOWEVER, Lucas had a cardiology appointment on Wednesday 6/18 and the next day he woke up with a mild fever.

NEW VIRUS - Human metapneumovirus (HMPV) 6/19-Current

So this new virus gave him a fever a couple times, but the biggest symptoms have been a super flemy cough, he has post nasal drip and stuffed up. All of this combined with his sleep apnea begins to take a toll over time with his breathing.

I took Lucas into the ER Sat 6/21 because he was breathing hard, we got admitted for one night, but he didn't need respiratory support at the time. When I got him home I was hoping to see the symptoms decrease, but they didn't and by Tuesday night he was breathing harder again.

I put him on the oximeter and his oxygen saturation was dipping so we used the back up oxygen we have at home and that helped his breathing overnight. We kept him on oxygen through the night. When he woke up the next day he was in good spirits and looked good, but once he went down for a nap he started breathing heavier again.

I took him into the ER on 6/25 (Wed) and here we are. Turns out he has pneumonia. Which I am weirdly grateful for because now he's taking antibiotics and he finally seems to be doing better. 

I DID just get a call that Lucas' surgery date is now 2 weeks later on 7/29. So please keep us in mind for prayers around that day and that we can keep him well until then!!

QUARANTINE PLANS:

I am in the hospital now, as Lucas recovers from this current virus he picked up. Fernando actually found a great (and inexpensive) golf camp right here in our neighborhood. Thank you Jesus! That goes from 10am-3:30pm and we'll be taking some pretty serious precautions to protect Lucas from now until the surgery date.

I'll be absolutely keeping the girls away from Lucas, so if anyone would like to do a play date with the girls to keep them busy on the weekends that will be sooooo helpful. Also, if anyone is well and will be open to watching Lucas so that I can get a break sometime, let me know! July 29th, here we come!

Love you all, Christine

Update: 6/27 (Noon) - Ok, so I would say that Thursday afternoon Lucas was looking better, but later in the afternoon and definitely at night, he started breathing heavier. So they have been suctioning him more and giving oxygen as he needs.

Now the cardiologist and pulmonologist are talking super closely and the pulmonologist came in and talked with me about how the heart and lungs work together and how his down syndrome changes that picture and how the whole system is getting overworked right now and every time he gets sick. It's actually problematic for the whole system for him to get oxygen when he needs it.

They are now proposing that he get a sleep apnea machine even though he hasn't had a formal sleep study yet. This would serve to open up his airways and optimize his lung function without the need for oxygen and not only help him recover from this virus he has now, but also help him in the long run and really allow him to be in the best shape for his surgery at the end of July.

We will need to be transferred to the ICU to have the sleep apnea machine fitted and get me educated on the machine for use at home and that could take a couple days so I will probably be in the hospital with Lucas through the weekend.

Lucas continues to be in good spirits when he is awake throughout the day, charming every doctor and nurse that come into our room with his smiles, chatter and waving. ☺ Thanks for your continued prayers and supporting us through all these hospital visits!

Love,

Christine

Update 6/28 morning: Lucas made it through 2 long naps yesterday and last night without needing oxygen. I think he is solidly recovering from his virus and he needs less suction too!

so we are just waiting to transfer to the ICU today and get fitted for the CPAP machine! 😊

Update 6/29 Evening: Last night they tried Lucas on the basic cpap machine apparatus around his head which was pretty involved. Lots of straps and adjustments through which he was not happy having something attached to his face.

I managed to get him to sleep and he slept a couple hours with it on. It definitely made a difference, but he woke up super unhappy around 1:30am. I was able to give up because he was so angry, but they showed me a couple other set ups that connect to the machine that might be slightly different and a better fit around his head or at least feel differently. We tried this yellow one and he seemed to at least tolerate it, and he would have slept the rest of the night is some un-named nurse who had a blood pressure cuff on his leg wouldn't have let it run. He woke up a little upset, but not angry like before so I soothed him back to sleep and I think we might have a winner.

The doctors came around at rounds and let me know that they want us to stay one more night to make sure he really is as comfortable as we can make him. They also mentioned that we would go back to the floor tomorrow if tonight went well for a few more days!??!? I need to clarify just how long they expect us to stay here. I was hoping to go home on Monday.

I have to really thank my friend Briana who happens to work at Children's in a different area for coming by to visit and also watch Lucas during this stay and Stacie for coming to watch Lucas today so Fernando could bring up the girls and we could all go to mass together.

My friend Jenni is watching the girls to give Fernando a break at home and really making a difference in our well being as we navigate these hospital stays. Thank you! Thank you to everyone who gets in touch some how some way. It means a lot to us and to me! 😊🩷

Update 6/30 evening: Well today was a big day and last night. Lucas did well last night with the cpap machine on. He's getting more used to it. He woke up several times, but wasn't too upset.

Talked to a lot of doctors throughout the day and got Lucas a new doctor. He's been diagnosed with Pulmonary Hypertension and Reactive airway disease (RAD). So there are cardiologists (heart doctors) and pulmonologists (lung doctors) and then there are pulmonary hypertension specialists and they fall under cardiology.

So today Lucas got his feeding tube pushed further down so that it goes directly into his intestines (called and ND tube) just until he recovers from the heart surgery so we can be sure that he's not aspirating at all into his lungs. With the feeding tube it is greatly reducing aspiration, but we think he is still aspirating a little bit from acid reflux and anytime any fluid gets in the lungs that isn't supposed to get there, it causes inflammation and we want him as healthy as possible for the surgery.

Lucas also got scheduled to receive a cpap machine to go home with and the training and the machine will be given to us on Thursday morning at 10am and he has to stay one night in the hospital to make sure the machine is properly calibrated to him and he looks good sleeping with it and then we can go home Friday.

We were in the ICU for the past couple nights getting introduced to the cpap machine and we got moved back to "the floor" where we were before so we're in a much more relaxed setting. I'm very grateful for that.

Lucas is mostly recovered now. We've been here so long that his last day of taking antibiotics is tomorrow. He still has a slight flemmy cough, and he still breaths kind of hard when he takes naps but with the cpap machine at night he's breathing much better. So he'll continue to get incrementally better while we hang out in the hospital for a few more days!

Our friend Caleb came to watch him from 6-10pm so I could go home, get a shower and re-pack for the upcoming week and see everyone. It was tremendously nice. This is going to turn into a 10 day stay at the hospital. Every little bit helps!

Thanks to everyone reaching out, we're entering the home stretch for this stay!