Lucas back in the Hospital

Dear Family and Friends,

Hello again! I am in a position of needing to ask for support and prayers again. What has started out as a common cold and a 5 day ICU stay to support Lucas' breathing has turned into a 2 week hospital stay and we have boomerang'd back into the ICU as of today. I'll put more details below for those interested, but basically I expected that he would be better after a week or so of hospital stay and now we are entering our 3rd week and it is clear I need to give up expectations and embrace this amazing opportunity to practice living in the present. Luckily it isn't hard to focus on holding little Lucas and bring my focus to gratitude for his little hands and feet and his soft head. I am also so humbled and grateful for those who have stepped up to help us with this current hospital stay!

So, in an attempt to be organized - I shall 

1. state why I called you all here
2. what we need in the upcoming week in case any of you are able and want to provide it
3. give a background of what happened

1. Why you are all here: we need prayers and support. I brought Lucas into the ER at Children's hospital in Seattle on May 4th because he seemed to have some labored breathing, they did a swab among a bunch of other tests, he tested positive for the common cold. They admitted him to the ICU, then moved him to the floor after he was over the worst of it and had recovered to enough to go to "the floor". He has been trending toward recovery somewhat awkwardly, and now is back in the ICU unexpectedly. I haven't asked my broad community for prayers because I kept expecting him to come home any day now, but now we are well past that point and we really need prayers and support.

2. What we need - feel free to text me if you can provide any of these things below

- Someone to come to the house or take the girls for a playdate to play for a few hours during the week in the evenings between 3:30pm-7pm. Fernando could use a break, so anyone willing to help entertain the girls would be so helpful.

- Someone to come watch/hold Lucas at the hospital: this is a bigger ask because traffic is pretty bad around Seattle, but if you are able then Mommy gets to spend time with her girls and Fernando and restock her supplies. The girls can't visit mommy in the ICU, so it's the most impactful for someone to watch Lucas at the ICU, however I have to ask for someone willing to stay for at least 4-6 hours because I burn 2 hours in traffic to make a trip home. And I would rather go home when I can see the girls, so watching Lucas between 2:30pm-9:30pm during the week would be great! And anytime on the weekends.

- Watching the girls on the weekend, any play dates or willing to watch the girls on the weekend would be super helpful too.

- Food: I know a lot of people have asked if we could use meals. It's been hard for me to answer this question because Fernando enjoys cooking, but if you would like to make a meal that would be helpful and give him one less thing to have to do. I would just ask that if you want to make a meal you text me directly, I'll have a list of suggestions for you, I know a lot of people are wondering what we like. We DO NOT NEED groceries delivered to the house. Fernando prefers to do our grocery shopping, the help would come from saving us the effort of preparing a meal so its easy to heat something up. Please don't give us TV dinners or lots of frozen food.

- Visiting Christine and messages of encouragement: It's really hard for me to have phone calls while I'm with Lucas cuz there is a lot going on, but leaving comments on the blog, sending me text messages, and if you can't come to sit with Lucas, but could come for a short time, feel free to come visit us in the ICU (don't bring flowers, not allowed) and bring me some yummy food and feel free to visit for 2 hours at a time.

3. Background of what happened: 

Saturday, May 4th - I brought him into the ER first thing in the morning because I noticed some heavy breathing in Lucas overnight. They did a bunch of tests and he came back positive for the common cold virus. They put him on "High Flow" which is a canula under his nose forcing air into his nose with humidity. If he is breathing fast then this makes sure that he's getting air into his lungs and also has him expel any CO2 out of his lungs as well (which a problem if he gets tired from breathing too hard) and the humidity in the High Flow works to break up the mucus building up in his system from the virus. They also began suctioning his airways with a suction machine and using saline to liquify the mucus. They took an x-ray of his lungs and there was mucus in his lungs which apparently is not concerning and should clear up naturally as he recovers, no additional fluid or pneumonia which was good. They also put him on an IV for fluids.

Sunday-Tuesday - got over the worst of the virus, Because he is on High Flow, they had to insert a special feeding tube that still goes through his nose, but they push it past his stomach so his food goes directly into his intestine. He can't have any food in his stomach which means no food by mouth because on the High Flow there is risk of him aspirating and getting fluid in his lungs. I've been able to pump breast milk and feed him that the entire time he's been in the hospital, no need to give him formula which is nice.

Wednesday, May 8th - he was looking well enough to turn down his High Flow to 6

Thursday, May 9th - they turned his High Flow down to 4 and moved us to "the Floor"

Friday, May 10th - they took the High Flow off for an hour or so and he started breathing harder so they put it back on at a 4.

Saturday & Sunday - they let him stay at his level, they've been continuing to suction his mucus every day and it's shifting from cloudy to more clear and there is less volume, they wanted to keep him on High Flow at 4. Fernando brought the girls to the hospital and stayed with Lucas in his room and I spent time with the girls around the hospital because no one under 10 can visit Lucas in his room.

Monday, May 13th - Lucas is 2 months old! Manage to get a picture of him for my records!

Tuesday, May 14th - They reduced his High Flow from 4 to 2. I had a personally hard time realizing he just isn't seeming to get closer to being discharged. Why isn't he getting better? Doctors could only say it is a combination of factors - he is an infant with small airways, his down syndrome has him have even smaller airways and also low tone has him not breathe as effectively, and just the virus taking time to get completely out of his system. 

I had a great talk with a friend about expectations and realized I was making myself miserable expecting him to go home soon and if I could just give up my expectations and be in the moment to discover what Lucas needs and cultivate gratitude in the mean time. There may be an opportunity to develop my patience, Trust in God and peace. Once I adjusted my perspective and really was able to begin infusing my thoughts and feelings with gratitude and curiosity, I began to actually call people and get Fernando support and find people to sit with Lucas so I could go home. I have no trouble finding things to be grateful for. 😊

I could leave Lucas in the hospital, but the nurses won't always hear him if he cries and the thought of that is too much so I've been sleeping and spending all my time in the hospital with him unless someone has offered to sit with Lucas which has been once, my sister Rachel who lives close to the hospital at this point.

Rachel (my sister) and my God Mother Sue graciously agreed to watch Lucas in the hospital and was able to go home. I also found some people able to help Fernando with the girls so he's not completely a single parent at home and got a chance to rest and recuperate, he wasn't sleeping well through some of this.

Wednesday, May 15th - we tried to take Lucas off High Flow, but he started breathing harder within the hour so they put him back on at a 2 and a couple hours later he was still breathing hard so they increased the Flow to 4.

Thursday, May 16th - Were able to reduce the Flow to 2

Friday, May 17th - Lucas looked so good all day and all night. They decided to try taking off the high flow for an hour 2 times and did one hour in the morning and one in the evening and he did well, didn't start breathing faster.

Saturday, May 18th (Today) - woke up and Lucas slept in a bit. Once he woke up he seemed uncomfortable for a bit and pooped, and was breathing kind of hard. On the whole for some reason he was fussy all today and breathing heavily on and off. By the time 5pm rolled around, some nurses came in and noticed his breathing was particularly harder than they'd like to see and they kept watching him for 30 minutes and after he didn't calm down, they called in some other nurses and doctors and decided to try to increase the High Flow to 4, then to 6, then to 8. For Lucas to stay on "the Floor" he needs to be on 5.75 for High Flow or less so they had to transfer him back to the ICU. And here we are!

I will say that I am grateful that none of this has been anywhere near life threatening. Lucas has just needed support and continues to need support until he doesn't anymore. The hard part is the girls can't come and just spend time with me here, in the room. So mostly Fernando stays home with them during the week and I stay at the hospital because it doesn't really make much sense for me to go home through traffic because it could take up to 1.5 hours especially during rush hour.

Anyway, I'm able to remain grateful that none of this is life threatening and we are just seeing what Lucas is telling us about what support he needs and overall he is definitely recovering and getting better. There's just so many factors, we are just along for the ride of how his recovery will look. It's amazing how much a virus can effect his poor little body. Fernando has resolved to find a machine that allows us to deliver High Flow of air comparable to the hospital to use at home and get him and me home. We're honestly not sure how long he'll need that specific High Flow support.

If you made it his far in the post, thanks for reading and thank you for the support! I hope this message finds you well and I will be sending all of you prayers and positive energy and intentions to be happy, joyful and grateful. We've been having some beautiful weather and I hope you've been able to take advantage. Please feel free to text me and reach out to let me know what you are up to, and if I can pray for anything for you or your family in this special time.

I intend to update this blog daily and then e-mail people only if there are significant updates so feel free to check the blog or save the link to your phone if you want to see my updates.

Much Love,

Christine