Just a short update tonight so I can get dome sleep while Lilly is sleeping.
What amazing strides Lilly made today! Thank you for your prayers on her behalf--our God is mighty and strong and more than able! Today, Lilly moved from taking baby steps to taking giant leaps in her recovery. It has been exciting to see her progress, and put her spunk and strong will into action when required.
The short version--she now only has her 3 drains and a pulse ox monitor attached to her. She is eating and drinking more and staying awake most of the day now. She got out of bed today, took a few steps supporting her own weight, sat in a chair leaning on a little table while we did puzzles and played games in the playroom, and made it clear many times throughout the day that she wants to go home and be back in her comfy bed.
I need to sleep, but just had to say thanks for your prayers. And thanks for all the fun e-cards! They bring a smile to her face. Today, while reading the card from her "future husband" she even giggled. Music. It is so good to see glimpses of our happy girl after so much anxiety and pain.
I also have to give kudos to my mom, my big kids at home, and especiallyy man. I cannot imagine going through all of this without you all.
Thursday, February 10, 2011
One Step at a Time
So we made the big move from the PICU last night around 10pm downstairs to a regular room. In preparation for the move, they had to transfer Lilly to a different bed which was an adventure. Her new bed had an extender on it--making it suitable for someone as tall as Jared--so she looked extremely tiny in it. The extender had to go, however, when our nurses realized, on our way downstairs, that she would not fit into the elevator. It was comical to say the least as a nurse, an aide, and several housekeeping staff (along with Tom) tried to figure out how to shorten the bed. It wad a first for our nurse--so happy we got to be a part of CHOP history!
Our arrival on the floor was greeted with an unenthusiastic nurse who gave me a tour of the floor and warned me that things here would be different than upstairs--the nursing ratio is much lower and they respond to calls as they are able. So I was ready to be an ugly mama bear if I had to for my Lilly's sake.
Thankfully, that nurse went off duty shortly after our arrival and our night nurse, Kevin, was fabulous. No mama bear necessary. Last night we got a little more sleep than our night in the PICU. Fewer alarms and interventions--coupled with a much quieter roommate who sounds just like Lilly when she whimpers and talks--made for fewer external sleep interruptions. Lilly, however, did awaken periodically needing new meds or setting off her own alarms by pulling on the various tubes on her body and dislodging her EKG leads and/or her O2 when scratching her itchies that have resulted from the morphine.. Her overnight nurse was great and really responsive. And her bed is now big enough that I was able to crawl up next to her a few times when she needed me closer than the 3 ft separation between my cot and her bed.
They will begin to wean her from the morphine today and are switching her over to tylenol and oxycodone, which she can take orally. She woke up acting more like herself, watched some tv, and even ate a few bites of breakfast. A few moments ago, she asked to sit in my lap. We decided to start by seeing if she could simply sit upright in bed. It was painful, but she tolerated it for a few moments before wanting to lie back and falling soundly asleep.
Baby steps in the right direction. We'll take them, big or small.
Our arrival on the floor was greeted with an unenthusiastic nurse who gave me a tour of the floor and warned me that things here would be different than upstairs--the nursing ratio is much lower and they respond to calls as they are able. So I was ready to be an ugly mama bear if I had to for my Lilly's sake.
Thankfully, that nurse went off duty shortly after our arrival and our night nurse, Kevin, was fabulous. No mama bear necessary. Last night we got a little more sleep than our night in the PICU. Fewer alarms and interventions--coupled with a much quieter roommate who sounds just like Lilly when she whimpers and talks--made for fewer external sleep interruptions. Lilly, however, did awaken periodically needing new meds or setting off her own alarms by pulling on the various tubes on her body and dislodging her EKG leads and/or her O2 when scratching her itchies that have resulted from the morphine.. Her overnight nurse was great and really responsive. And her bed is now big enough that I was able to crawl up next to her a few times when she needed me closer than the 3 ft separation between my cot and her bed.
They will begin to wean her from the morphine today and are switching her over to tylenol and oxycodone, which she can take orally. She woke up acting more like herself, watched some tv, and even ate a few bites of breakfast. A few moments ago, she asked to sit in my lap. We decided to start by seeing if she could simply sit upright in bed. It was painful, but she tolerated it for a few moments before wanting to lie back and falling soundly asleep.
Baby steps in the right direction. We'll take them, big or small.
Wednesday, February 9, 2011
Slow Steady Road to Recovery
There has not been very much to report today. We continue to be grateful for God's healing hand, for his being the God who Hears, and for sustaining us all--Lilly in her post op recovery, Tom and me as we care for her and miss our big kids at home, and Jared, Anna, and Nana back at home. Please keep my mom in your prayers as she fights symptoms of the same virus that took Anna out of school for almost a week and kept Jared home from school Monday and Tuesday of this week.
Lilly and I had a fairly decent night's sleep--there are many noises and lights in the PICU that make sleeping difficult, and her pain levels also made sleep somewhat fitful when she was nearing time for her next "rescue" dose of morphine. I was able to stay bedside on a little chair that folded flat into a small cot so I was close by which gave her comfort. She was so sweet--at one point as I was checking on her whimpering, she looked at me and said "go night night, mom." Our roommate--a little guy about 18 months old--was having a very difficult time sleeping so his crying and his parents' efforts to care for him also made it tough for us to sleep. The little curtain between us offers only visual privacy, but no soundproofing. I probably slept for two or three 60-90 minute blocks between 10pm and 6am. By 6am, it was clear that the PICU was awakening for the morning--lights turning on, residents and attendings making rounds, nurses checking vitals, etc.
Lilly has spent today in and out of sleep, showing little interest in food or any other activities (even TV or books). Thankfully she is drinking lots of fluids, and we are hopeful that she will get a little bit of an appetitie when she feels less sleepy. She has had wonderful nurses who have been great about staying ahead of her pain curve by dosing her with "rescue" doses of morphine every 3 hours, supplementing a steady dose she is getting from a pump via IV. We are hoping that soon she will be able to manage pain via analgesics rather than sedatives so that she is more alert and more interested in eating and moving. It is hard to see her in so much pain and not be able to take it from her.
Forward steps today included removal of her arterial line in her right hand and removal of her foley catheter. Two tubes down, several to go. She still has an oxygen line in her nose, a dual IV in her left hand, 3 drains from her back to drain fluids and blood from the surgical site, a blood pressure cuff on her ankle, and a pulse ox monitor on her hand, so there are plenty of tubes and wires still criss-crossing her little body and throughout her bed. But each removal is a little victory in this road of recovery.
She gave a slight smile--the only emotion other than pain she has shown all day--when she received a few e-cards from friends back in Florida--thanks Amanda, Sarah, and Nicole! We have propped those notes up in her bed so she can see them when she opens her eyes.
The attending physicians are planning to move her to a regular room either later today or tomorrow morning, depending on how she's doing and where beds might open up. CHOP is absolutely full--so many sick little ones.
Dr. Campbell made his rounds earlier today and said that, at about the 24 hour mark, she is free to try to sit up and even stand and walk if she feels up to it. That would be later this afternoon/evening. Based on what we are seeing today, it may be another day or so before she is inclined to get out of bed--even though she claims she wants to "get up," even the slightest movements of her torso seem to cause her great amounts of pain. Not to mention that it might be difficult to do so with many tubes and drains hanging from her body. Dr. Campbell told us that muscle spasms are very common in VEPTR kids because the muscles are being stretched and recruited in new ways now. Not to mention that her bones and incisions are sore. So it will be a balance of encouraging her to move despite the pain, and allowing her to rest and treating the pain as needed.
I suspect that once she is able to manage pain without the sleepiness of the morphine, she'll start feeling more like herself and more inclined to eat and try moving.
Please continue to pray for her pain tolerance and pain levels, for her lungs to be protected from fluids, for her to begin to have an appetite again, for her digestive tract (likely slowed down due to the meds) to kick back in once she starts eating, and for her peace of mind. She is clearly agitated that we are here and wants to be done with this place.
We are thankful for the great staff and resources here. I am currently sitting at a computer in a family library where there are also some sleeping rooms, showers, and laundry facilities available for in-patient families. Earlier today, when Tom joined us after spending the night at the RMcD House, I slipped away for a short nap, a fast run on a treadmill, and a warm shower back at the house. I also picked up some of our favorite breakfast and snack items from the local "Fresh Grocer" to have on hand here at the hospital.
All for now. Thanks for reading.
Lilly and I had a fairly decent night's sleep--there are many noises and lights in the PICU that make sleeping difficult, and her pain levels also made sleep somewhat fitful when she was nearing time for her next "rescue" dose of morphine. I was able to stay bedside on a little chair that folded flat into a small cot so I was close by which gave her comfort. She was so sweet--at one point as I was checking on her whimpering, she looked at me and said "go night night, mom." Our roommate--a little guy about 18 months old--was having a very difficult time sleeping so his crying and his parents' efforts to care for him also made it tough for us to sleep. The little curtain between us offers only visual privacy, but no soundproofing. I probably slept for two or three 60-90 minute blocks between 10pm and 6am. By 6am, it was clear that the PICU was awakening for the morning--lights turning on, residents and attendings making rounds, nurses checking vitals, etc.
Lilly has spent today in and out of sleep, showing little interest in food or any other activities (even TV or books). Thankfully she is drinking lots of fluids, and we are hopeful that she will get a little bit of an appetitie when she feels less sleepy. She has had wonderful nurses who have been great about staying ahead of her pain curve by dosing her with "rescue" doses of morphine every 3 hours, supplementing a steady dose she is getting from a pump via IV. We are hoping that soon she will be able to manage pain via analgesics rather than sedatives so that she is more alert and more interested in eating and moving. It is hard to see her in so much pain and not be able to take it from her.
Forward steps today included removal of her arterial line in her right hand and removal of her foley catheter. Two tubes down, several to go. She still has an oxygen line in her nose, a dual IV in her left hand, 3 drains from her back to drain fluids and blood from the surgical site, a blood pressure cuff on her ankle, and a pulse ox monitor on her hand, so there are plenty of tubes and wires still criss-crossing her little body and throughout her bed. But each removal is a little victory in this road of recovery.
She gave a slight smile--the only emotion other than pain she has shown all day--when she received a few e-cards from friends back in Florida--thanks Amanda, Sarah, and Nicole! We have propped those notes up in her bed so she can see them when she opens her eyes.
The attending physicians are planning to move her to a regular room either later today or tomorrow morning, depending on how she's doing and where beds might open up. CHOP is absolutely full--so many sick little ones.
Dr. Campbell made his rounds earlier today and said that, at about the 24 hour mark, she is free to try to sit up and even stand and walk if she feels up to it. That would be later this afternoon/evening. Based on what we are seeing today, it may be another day or so before she is inclined to get out of bed--even though she claims she wants to "get up," even the slightest movements of her torso seem to cause her great amounts of pain. Not to mention that it might be difficult to do so with many tubes and drains hanging from her body. Dr. Campbell told us that muscle spasms are very common in VEPTR kids because the muscles are being stretched and recruited in new ways now. Not to mention that her bones and incisions are sore. So it will be a balance of encouraging her to move despite the pain, and allowing her to rest and treating the pain as needed.
I suspect that once she is able to manage pain without the sleepiness of the morphine, she'll start feeling more like herself and more inclined to eat and try moving.
Please continue to pray for her pain tolerance and pain levels, for her lungs to be protected from fluids, for her to begin to have an appetite again, for her digestive tract (likely slowed down due to the meds) to kick back in once she starts eating, and for her peace of mind. She is clearly agitated that we are here and wants to be done with this place.
We are thankful for the great staff and resources here. I am currently sitting at a computer in a family library where there are also some sleeping rooms, showers, and laundry facilities available for in-patient families. Earlier today, when Tom joined us after spending the night at the RMcD House, I slipped away for a short nap, a fast run on a treadmill, and a warm shower back at the house. I also picked up some of our favorite breakfast and snack items from the local "Fresh Grocer" to have on hand here at the hospital.
All for now. Thanks for reading.
Tuesday, February 8, 2011
What a Mighty God We Serve
It is now more than 12 hours since we arrived at CHOP for Lilly's surgical check in. Although it has been an incredibly. long day--we arrived here at 6am, waited in her pre op room for about 5 hours as they sorted out a bed shortage, then sat in the surgery waiting room with dozens of other families for about 6 1/2 hours, getting updates from a very nice nurse named Don every hour or so, and then waited to see her following recovery for about 30-45 minutes--the time has honestly gone very quickly. The wonders of modern technology and the many facebook messages, e-mails, and text messages from friends and loved ones helped to bolster our faith and our mood, and our strong and mighty God graciously gave us peace through every phase of the day.
For me, the hardest part of the day was when I suited up and went back with Lilly to the OR so I could be with her when they anesthetized her. They opted not to give her versed (commonly referred to as "happy juice" because it relaxes the patient and acts as an amnesiac, making separation from mom and dad easier and easing anxieties) because of her lingering cough and because we knew, based on our experience in Birmingham, that having mama by her side was much more effective against anxiety than any drug. She was indeed very anxious all morning as we waited (she fell asleep in my arms more as a defense mechanism than due to sleepiness or fatigue), and even more so as they administered the gas to put her under. She fought the anesthesia as long as she could, and then fell into her sleep. As I walked back to where Tom was waiting for me, my heart was pounding.
After our long wait, Dr. Campbell sat and reviewed with us how things went once has was finished. He inserted 3 separate VEPTRs, one on each side of her ribcage extending from rib to pelvis, and one between two ribs on her left (formerly concave) side. She now measure 3" taller, and her curvature was reduced from 130+ degrees to somewhere in the roughly 50-60 degree range. Her chest wall is no longer collapsed on the left side, so even lying in bed she looks different. She needed one unit of blood, but came off of the ventilator almost immediately post op. Dr. Campbell was really happy with the outcome and we are so grateful for his research and know-how that led to this device and this procedure.
So now we are here in her PICU room, where she is in and out of fitful sleep. She has morphine.and tylenol. for pain control, and her first words upon awakening were "I want to get up" and "I want to go home." Knowing this spunky girl, it won't be too long before we are doing both of those things.
I will spend the night by her side in the PICU, while Tom heads back to the RMcDH. I am so thankful that one of us gets to stay with her around the clock. I do not anticipate getting very much sleep, but for now that doesan't even matter.
Thanks to you, dear family and friends, for your prayers today and your continued prayers for her recovery.
For me, the hardest part of the day was when I suited up and went back with Lilly to the OR so I could be with her when they anesthetized her. They opted not to give her versed (commonly referred to as "happy juice" because it relaxes the patient and acts as an amnesiac, making separation from mom and dad easier and easing anxieties) because of her lingering cough and because we knew, based on our experience in Birmingham, that having mama by her side was much more effective against anxiety than any drug. She was indeed very anxious all morning as we waited (she fell asleep in my arms more as a defense mechanism than due to sleepiness or fatigue), and even more so as they administered the gas to put her under. She fought the anesthesia as long as she could, and then fell into her sleep. As I walked back to where Tom was waiting for me, my heart was pounding.
After our long wait, Dr. Campbell sat and reviewed with us how things went once has was finished. He inserted 3 separate VEPTRs, one on each side of her ribcage extending from rib to pelvis, and one between two ribs on her left (formerly concave) side. She now measure 3" taller, and her curvature was reduced from 130+ degrees to somewhere in the roughly 50-60 degree range. Her chest wall is no longer collapsed on the left side, so even lying in bed she looks different. She needed one unit of blood, but came off of the ventilator almost immediately post op. Dr. Campbell was really happy with the outcome and we are so grateful for his research and know-how that led to this device and this procedure.
So now we are here in her PICU room, where she is in and out of fitful sleep. She has morphine.and tylenol. for pain control, and her first words upon awakening were "I want to get up" and "I want to go home." Knowing this spunky girl, it won't be too long before we are doing both of those things.
I will spend the night by her side in the PICU, while Tom heads back to the RMcDH. I am so thankful that one of us gets to stay with her around the clock. I do not anticipate getting very much sleep, but for now that doesan't even matter.
Thanks to you, dear family and friends, for your prayers today and your continued prayers for her recovery.
Monday, February 7, 2011
6:15 am Show Time
Another full day at CHOP: X-rays, consult with Dr. Campbell, CT scan, and the final clearance from the anesthesia department to proceed tomorrow. We are winding down our night at the Ronald McDonald House and will be crawling unto bed soon. Lilly is scheduled to arrive at 6:15am; the surgery itself will take 5-6 hours.
My memory verse right now is a fitting way to end this evening: "I have trusted in your steadfast love, my heart will rejoice in your salvation. I will sing to the Lord for He has dealt bountifully with me." Psalm 13:5-6
My memory verse right now is a fitting way to end this evening: "I have trusted in your steadfast love, my heart will rejoice in your salvation. I will sing to the Lord for He has dealt bountifully with me." Psalm 13:5-6
On our Way Back to Philadelphia
We spent a relaxing weekend in New Jersey with Tom's family. Saturday Lilly and I joined Auntie Em and cousin Peter for "An Introduction to the Symphony for Kids.". It was a concert featuring several amazingly talented teen musicians, accompanied by the Hunterdon County Symphony Orchestra. Lilly found it quite relaxing and took a nice snooze. We enjoyed dinner at Uncle Doug and Aunt Judi and cousin Tanya's house. On Sunday, we worshipped with them and then spent a very quiet day at Grsmmy's house until everyone arrived for Sunday dinner and Superbowl viewing (good try, Steelers).
While it was fun to see everyone, the reason for our visit has been hanging over me...and, I suspect, over Lilly as well. As we say goodbye to each family member, extra tight squeezes and promises of prayer are both comforting and indicative of the seriousness of the next few days.
As we are now driving back to Philly to see Dr. Campbell--who will make the final call as to whether to proceed despite Lilly's cough--and undergo some new x-rays, Lilly is contemplative. We have used very basic terminology to explain why we are here: "your back is shaped like an "S", and it needs to be shaped like an "I." That has tended to satisfy her. But moments ago she asked "why does my S need to be an I?" Good question. So we tried to explain how it will allow her lungs and heart to work better as she grows. To which she replied, after some thought, "I wish I was born with an I."
I, too, wish she didn't have to go through this. This is really what it boils down to. How differently everything might be had Lilly been born with a straight spine. She might not even be ours, had that been the case. But God, in His sovereignty, has allowed all of these things---a crooked spine, an abandoned baby, an adoptive family, an amazing doctor, supportive family and friends--to work together for our good and His glory. May He get much glory from the things that are to take place in the days ahead.
While it was fun to see everyone, the reason for our visit has been hanging over me...and, I suspect, over Lilly as well. As we say goodbye to each family member, extra tight squeezes and promises of prayer are both comforting and indicative of the seriousness of the next few days.
As we are now driving back to Philly to see Dr. Campbell--who will make the final call as to whether to proceed despite Lilly's cough--and undergo some new x-rays, Lilly is contemplative. We have used very basic terminology to explain why we are here: "your back is shaped like an "S", and it needs to be shaped like an "I." That has tended to satisfy her. But moments ago she asked "why does my S need to be an I?" Good question. So we tried to explain how it will allow her lungs and heart to work better as she grows. To which she replied, after some thought, "I wish I was born with an I."
I, too, wish she didn't have to go through this. This is really what it boils down to. How differently everything might be had Lilly been born with a straight spine. She might not even be ours, had that been the case. But God, in His sovereignty, has allowed all of these things---a crooked spine, an abandoned baby, an adoptive family, an amazing doctor, supportive family and friends--to work together for our good and His glory. May He get much glory from the things that are to take place in the days ahead.
Saturday, February 5, 2011
Contact Info at CHOP
Several of you have asked for a mailing address to send cards to Lilly. If you would like to send her an e-card when she is an inpatient (from 3/8 until 7-10 days later), you can follow this link: http://www.chop.edu/ecards/ecards.cfm
For USPS mail:
Child's full name and room number (don't know room # yet...will let you know)
The Children's Hospital of Philadelphia
34th Street and Civic Center Blvd.
Philadelphia, PA 19104-4399
Tom's folks, who can deliver things as well:
Lilly Cantilina
c/o Stan and Helene Cantilina
21 John Lelo Ave
Milford, NJ 08848
For USPS mail:
Child's full name and room number (don't know room # yet...will let you know)
The Children's Hospital of Philadelphia
34th Street and Civic Center Blvd.
Philadelphia, PA 19104-4399
Tom's folks, who can deliver things as well:
Lilly Cantilina
c/o Stan and Helene Cantilina
21 John Lelo Ave
Milford, NJ 08848
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