We are home and oh, how wonderful, it is to be in our own home! We are getting more used to the changes in our routine (well, most of them, with the exception of medication time..two thumbs down, ugh!). Carson has 4 tube feedings a day now because he doesn't want to eat or drink as much by mouth with the t tube in (it sits fairly high in his throat and makes swallowing more difficult). I am thickening liquids also for him because the aspiration risk is high and he coughs when drinking regular water. Thickening the liquids helps slow them down and allows him more time to manage and swallow them properly. Night time is also not quite as restful (at least for Preston and I) because Carson coughs more and needs to be suctioned sometimes in the middle of the night (& that's a 2 man job) but I can say it is easier now that Carson doesn't have to wear the neck brace. And hopefully it will also improve with time.
We got home Wednesday evening...Carson had the appointment in Cincinnati Wednesday morning and the doctors discontinued the neck brace and did a scope (while he was awake) in the office. The doctors said all looked good! While it seems simple enough...it took 4 adults to hold Carson down & still enough for the doctors to perform the procedure. They first scoped his t tube and then scoped through his nose and down to look from above. It was AWFUL! Carson fought hard for all 10 minutes (which may as well have been an hour). He was sweating and I was sweating by the end of it. (& we get to do all of it again, each month while the t tube is in : ( - in STL)
These past two weeks were hard for me...I thought I was prepared going into these surgeries and when plans, procedures, and care for Carson changed, it threw me for a loop. It was awful to watch Carson suffer day and night, it was hard to hold him down time and time again (and still now with medications), its not just surgeries and the immediate post op pain, but then knowing that Carson will only be able to whisper for the next three months, that we will be doing this irritating medication twice a day for the next three months, that simple things like getting a drink of water (on hot sunny days) will be harder for Carson is all very wearing on my heart. So even while the surgery was successful and things are going well overall, I've found myself missing some of that joy I usually have.
And while, it is easy enough to get caught up in all the awfulness...there are many blessings (great doctors, Carson's resilience & forgiving nature, he CAN at least whisper, we CAN feed him through a G tube, we only have to do the medication TWO times a day -not the 6x/day like in the hospital, we have a great support system...) and I am thankful for pictures to remind me of the smiles and fun times even in the midst of suffering. We will take one day at a time and while three MONTHS seems a bit overwhelming right now...I know it will end and will hopefully go by quickly. I've learned once again that it is a lot about shifting my focus, truly surrendering and trusting that God is in control, that he can use this suffering for good, that he will protect Carson's mental and emotional health despite the repeated unpleasantries, and then focusing on the positives, doing the next thing next, and enjoying the moments. (And realizing the potential of this surgery!) Thank you so much for your prayers..it got us through another round of surgeries. Please be praying for the medication times, that Carson can remain as calm as possible, for new ideas to help with distracting him, and that we can help him understand the reasoning and need for the medication -as much as a 4 yr old can.
Here are a bunch of pictures from the past two weeks.
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| May the FOURTH be with you (after Carson's first bronchoscopy May 4th) |
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| Zoo time..the COOLEST bubble inside the meerkat display! |
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| ZOO train... a highight for all of us! |
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| Graeter's - the BEST ice cream ever! |
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| One of the first medication times...many tears but Carson did it!! |
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| I don't really like sharing this picture but it is real. This was the first night...Carson wanted to be held and all I wanted to do was take any pain away possible...may have been the best therapy for me. |
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| Kellen was such a trooper...he hung out with Nana (& they found ways to have fun)! |
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| More smiles in the following days (at least between med times) |
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| You need 3 adults to help to kids paint in the hospital! So thankful Mimi & Papa were able to be there! |
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| Popsicles are always a highlight! |
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| The first afternoon when Carson FINALLY was able to tolerate capping his t tube! Just chillin' with his best buddy! |
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| OH, Ronald!! Carson loves this statue! |
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| Who says you can't play a little t ball with a neck brace on?!? |
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| Or ride a bike?!? |
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| At the Cinicinnati Children's Museum |
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| The coolest park in Blue Ash...turf hills to slide down |
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| Blowing dandelion seeds! (He's never been able to do this before but can now since he is breathing out his mouth and nose) |
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| Farewell Ronald! At least for now... (we will go back in August to have the t tube removed) |
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| Back at home!!! They tried every one of their toys out Wednesday evening. |
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| My superheroes!!! |
Elizabeth, you have been in my prayers for the past couple of weeks, but it wasn't until I read through your journey and saw the pictures--both heartbreaking & triumphant that the full weight of what you have been going through hit me. I lift up my every inconvenience, every sassy exchange with my eleven year old, every sniffle from allergies, every night of imperfect sleep, every unappreciated dinner... I lift it all up for you. I am happy to bear these minor burdens, these crosses like a splinter, with glory and praise to our God, and as a petition for Him to continue holding you up. I looked for your mom at mass this morning--thought she might be back home--but know that you ALL are close to my heart, including your folks as they travel to be with you. My kids still remember meeting you all at Holy Trinity last year; and we pray for Carson each night at bedtime. They would love to send a care package sometime this summer if you could pass on your address over this email address. With love & prayers--Amy Carroll
ReplyDeleteThank you so VERY very much Amy (& your kiddos for the continued prayers)! Words often fall short but we are so grateful for your prayers!! These hard times are always perspective changers for me.
Delete~Liz