The signs of RSV were gone within the first week of being diagnosed. He had what appeared to be a common cold... congestion, low grade fevers off and on, and a little cough. The symptoms were gone the first week. I thought.. okay.. let's put him back on the list because he's fine. Right? Then I got the reality check when we were inpatient for IVIG and his sats didn't budge out of the 60s. Then I thought.. oh..they will pop back up to the mid 70s soon. I'm optimistic.
Then we had the weekend and he relaxed a lot. On Monday, his speech therapist mentioned that he sounded really winded and saw a noticeable change. Oh.. he's just kicking this RSV junk. She hadn't seen him since the end of Jan. I have been speaking with the transplant NPs at LPCH every few days and relayed how his weekend was. His sats were finally sitting at 70 consistently.. better.. but not great.
Our NP said they had been discussing Owen daily and are getting worried. He is in heart failure and has been for so long. He is being managed well at home, but at what point do we say that he needs more support and get him admitted for closer monitoring. What point do we begin Milrinone (IV meds). With single ventricle kiddos, they spiral down, they spiral fast. There is no Berlin Heart, VAD, or other options. As we saw with Kylie this week, they run out of time, and that has been so heavy on my heart.
I want to make the right decision, but it's a burden to bear. I silently pray for answers all day.. a big sign.. a clue.. something to tell me this is it! It's time.
This morning we went to Gymnastics for PT. His PT hadn't seen him in a few weeks and she said she saw a noticeable difference in his breathing and he was as blue as the mats. She was a little nervous and tried to STOP him from doing activities. He is just as happy as can be.. throwing the foam around, kicking the ball and felt good enough to keep on going. He's great at self limiting, but could he be so used to sats in the 50s (while at play) that it doesn't phase him? I would be flat on the ground. It hit me.. my boy is so sick.
I called LPCH to check in and relay how PT went. She said "ya know.. we are stepping back and looking at the BIG picture.. we don't want to miss anything.."
Owen has a cardio appointment tomorrow morning with his local transplant team. He has an echo scheduled and clinic visit. I will obviously relay all the info to them.
In speaking with his doctors.. this may just be the RSV wreaking havoc and his body needs more time to get over it! It could also be the RSV creating a ripple affect and his heart just can't keep up. It could also be that his heart is getting sicker and it's time to take further action. I don't know. I wish it was in my face loud and clear and maybe it is. Maybe I am missing the biggest sign right in front of my face.
So glad I have this sign to look at everyday to remind me that "Every Little (or not so little) Thing Is Gonna Be Alright!"
14 comments:
Andrea, I only know your family through your blog but my heart aches for you. Praying for peace,answers,decisions,for healing for your little man in the best way that can happen;a new heart asap if that's the right thing. Love to your whole family.
Did you get my email?
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Oh Andrea, I feel for you so much. You've all been in my thoughts and prayers such a lot. Hoping that this blip is just the tail end of his RSV bug and that he (and his sats) start to perk up a bit very soon. I'm always here if you want to let off steam. Sending love and big hugs to you and your little superhero. xxx
Oh I hope it is just the RSV. In my normal, no health issues, little girl, RSV made her a different kid for awhile when she was 18 months. In fact, she was diagnosed with asthma shortly after it and it was later thought to not be asthma but the RSV that wrecked her lungs for a bit. But I remember that it took her a good month to get her energy to 100%. The pediatrician did not seem surprised. I can still remember that for weeks afterward there were 3 hr naps and she always had to be woken up in the morning and this is a kiddo that still at age 5 can not sleep past 6 am, 5:30 is usually pushing it.
I will say some prays. Rest, some good veggies and fruits and proteins to officially get the bug out of him and then hopefully things might improve.
I so hope it is just the RSV
Andrea-I remember when Emery was in heart failure and the doctor's started to assess her for transplant. She was about 17 months old and had already had 2 OHS. However, after her first OHS, a few months later and before her 2nd surgery they diagnosed her weak RV function. They thought she would need a transplant before her second surgery (the glenn) and fortunately (I thought at the time) they were able to perform the Glenn. But it wasn't enough, ultimately she had to have a new heart. We dreaded transplant, we hoped something would change. The fear of the unknown was terrible. Once she received her heart I was AMAZED at how fast her health improved and it was only when she began to get healthier due to a whole heart that I could look back and see how sick she really was. Being almost 2 she coudn't tell us how she felt. All in all we thought she looked good and acted good. All things considered. But now I know how bad she really felt, how hard she fought daily with that heart and I was so relieved to see how much better she became with the new heart. Some minor things like teeth. Before transplant her teeth were not coming it. The minute she got that new heart and good blood flow her teeth erupted. She had a rash on her cheeks that went away with new heart. Cradle cap that she couldn't kick-gone with new heart. I am guessing once Owen has a new heart he won't need O2 daily. He will be so much healthier. I want to give you hope that this is the right decision and the right time. Of course you have to wait for the heart. we got so lucky but Emery did have to be treated for rejection at first. Her antibodies were very high. Now, almost 3 years later she is a normal kid. down to 3 med a day, playing, growing, eating and very few doctor's visit. I pray you get to that point soon. Feel free to reach out if you have questions, it's so good to have someone whose been there to talk to. Stay strong.
Hi Andrea,
You know I have read your blog since Owen was a baby. I marvel at how far he has come because of you.
I know for a fact that you know him best, better than anyone and I also know you will know when he needs help. A good Mother just does, trust your instincts and you will always make the right decision in his care.
He may just need a little more time and rest, he is much more active now that he is older and I know it is harder to compare how he really is doing, but I have faith in you and I never worry about him not getting the best of the best care.
{{big hugs for you both}}
I pray that Owen can kick this, even if it does just take his body a while to bounce back. Waiting at home for his heart is just such a better option!!!! I hope a week of snuggling and chilling at home can bring more energy and better sats!
Oh Andrea,
((Hugs))!!!
I am not a heart mom but adore you all.
Have watched Owen grow up through your blog; HE is a Superhero!!
I pray you continue to be guided on this precious pathway. You always do what is best for Owen; not what is obvious, or easy, but best.
I hope, hope, hope it is the RSV and he kicks it to the curb so he can go play kick the can!!!
My love to all of you<3
I'm not a heart mom either, so I feel uneducated. Why are Berlin or VAD not options until his heart comes? I'm sure you know the answer inside and out, so I'm just wondering. Praying for you sweet boy and your mama heart!
will say a prayer for all of you
Andrea,
I have followed your blog for several years now and wish I could just reach out and give you all a big hug and help you manage the stress the you are going through. Your boy (and girl) is so cute and I'm sure the docs will take the correct measures to get that cute Owen back to his great healthy self. Just know you have complete support and prayers coming from even unknown moms around the globe. That saying is one my favorites too! I hope all goes well for Owen and that you can get the positive answers you need. Hang in there!
I've been thinking about Owen lately. Praying praying praying his body kicks this bug and praying for wisdom and understanding concerning what to do for him and what steps to take. Hang in there Momma!!
Andrea you are all always in my thoughts. Hug!!!!!! Praying for Owen to kick this bug and be back to himself and if he is declining that the docs come up with a plan to keep him stable until he gets his new heart.
My heart goes out to you...the stress and worry that overcomes you must be so difficult at times. You are such an EXCELLENT mama and Owen has been able to thrive because of the care he's received at home. Trust yourself and continue to rely on Him...you'll know when the time is right for him to need further help. Praying he'll get that heart soon and in God's perfect timing!
Praying for your precious boy!
Brandie in KY
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