Tuesday, January 29, 2013
Recovering!!!
Our Monday morning started early. We woke up, Lyla was happy. Dancing around, holding her picture of her Yaya and herself when she was in the NICU, saying " Hi Yaya, I love you" We loaded up the truck with all our stuff ready for our stay at Cooks, we got there at 6am. Lyla was a big nurses helper. Helping put on the bracelets on herself, me, Trevor, and even her Elmo. Talk with anasethgiologist, Dr. Iglesias, went through all the questions, and signed consents. Dr. Iglesias loves Lyla's Socks For Surgery socks that said "Alright Dr. Iglesias, but this is the last time" and her shirt that says "Dr. Iglesias is fixin my guts". Lyla got some giggle juice to help with separation and after is kicked in, she was talking silly. She said "I love you", and they took her back. Surgery lasted 2 hours. Dr. Iglesias came out and told us everything went good, he measured 90cm of small bowel, and her colon looked good. They did the liver biopsy, and gave her a fresh new g-button. The great news was she didn't need a blood transfusion. She was in recovery for about a hour before we could go see her, and it wasn't long after that, she went up stairs to her room. it was rough keeping her pain under control. Around 8pm she still hadn't peed since surgery, so they decided to do a quick in and out catheter to drain her bladder. Lyla had gotten a caudal epidural, so she was numb abs couldn't go on her own at first. They drained out a whopping 7+oz of urine, poor baby was full, after that and getting a dose of pain med, she slept for about 4 hours straight. She had labs this morning, her blood count was a little low, not bad, and is normal after surgery. Today was much better, pain was under control for the most part, just one time we were waiting a while for pharmacy to send up the med. We were able to remove the tube that was in her nose, sucking her stomach. She still has it draining out of her g-button, and will for a couple of days, before they start feeds. We got her up out of bed to stretch, it hurt, but we had to, she walked a few just a little bit. It was a good 2nd day!
Monday, January 21, 2013
Surgery Soon!
Hey everyone! First off, I want to say thanks everyone that follows Lyla's journey! Thanks for all your support & prayers.
Since we've been home from the feeding program, Lyla has been doing well with eating and drinking. Trevor, Lyla and I all caught the flu a few days before Christmas, but it really didn't phase Lyla that much and we were feeling much better by Christmas day. The day Lyla's daddy proposed to mommy 😍 6 1/2 years and a Lyla later 😉
I hope every one had just as great of a Christmas as we did. We were very fortunate to have Avery's Angels Gastroschisis Foundation sponsor Lyla's Christmas, and wonderful families donated gifts to her! We are very Thankful and Blessed!!! December and January have been very busy for us... heck we've been busy since September. Lyla had an Appointment with her surgeon, Dr. Iglesias, on Dec 10th and decided it was time to reconnect her bowels and get rid of her ileostomy bag. We scheduled a barium enema, to check for a narrowing or blockage in her colon before they hooked it back up. On Dec. 26th we saw Lyla's GI, Dr. Keng. She believes if the surgery is successful and Lyla continues to tolerate food as much she has been, then Lyla could be TPN free by her 2nd birthday. That would be a miracle. Seems how Lyla hasn't gained any weight since July, when they bumped her TPN down to 8 hrs.
Since she hasn't been gaining Dr. Keng changed Lyla's oral liquid intake to Pediasure Peptide, a high calorie/protein drink, in place of Elecare Jr. & Pedialyte. At first Lyla didn't tolerate and it was making her vomit up her meals as well. So I started mixing it with pedialyte to half strength, along with nectar to thicken it. She can tolerate half strength, so that's what she's been getting. She is continuing to get speech therapy 3 times a week, and occupational therapy, once a week. She had a follow up swallow function study done in Jan. 15, and she swallowing has improved but not great yet. In observation of 10sips of half nector thick (half less thickner than she's use too), she only had a small penetration once. And it was her very first sip. In observation of 10 sips of thin liquid (without any thickner) she had 5 deep penetrations, and no control over the liquid. So in results we have gone down to half nectar thick, will continuing oral motor skills, & have a follow up swallow study in 4 months. She did very good drinking the nasty chalky barium dye for the X-ray... She actually loves it 😝 and didn't want me to take her cup away! I was glad she wasn't traumatized from that radiology room, because just a week before that she had her barium enema. She was not happy at all while getting the BE. The results were good though, everything went through smoothly. Which means there's a chance the colon could still work. The radiologist estimated Lyla to have about 10cm of colon, just by looking at her BE video and the amount of dye that was used. An average child the same age would have triple that amount. She had another appointment with her surgeon after the barium enema, to talk about the results. He decided to go with Plan A, to reconnect her bowels, without removing the large bowel, only removing minimum off both ends for a clean connection. He said he will accurately measure both small an large bowel while he was in. I have been doing distal refeeds to Lyla (putting stool through her colon with a catheter) to keep her colon "happy" & so far the results of that haven't looked great to me. Its suppose to come out of her bottom, but rarely does, and when it does, it's bloody. The surgeon says the blood is just from no being used enough, it's not "happy". Another concern is the rash around Lylas stomas, it's been there since I can remember. Imagine horrible raw diaper rash, but on her tummy where her surgeon is suppose to make an incision, and a nice clean, straight/small as can be scar. The rash isn't huge, but he will have to remove that skin if it isn't healed by surgery day. It may sound easy, but if it were, the rash wouldnt be there for as I can remember. There isnt much you can put on a stoma rash without the bag falling off, just powder and spray, then no matter how almost healed it is, as soon as the bag leaks, the rash gets worse. She also will get a liver biopsy during surgery. For the biopsy, they will cut & remove a tiny piece liver, then insert a long needle to collect a sample from the inside. She needs this done to be able to really see how bad her lover damage is, her numbers have been elevated for a while now, so her doctors want to check it out. We had to reschedule surgery to 6 weeks after Lyla was diagnosed with the flu, because anesthesiologist will not put her under until then. So Jan 28th is the date, we just have to go one more week without getting sick.
Got a call from Lyla's GI with her weekly lab results. White blood cell count is low, so she's more prone to get sick... And of course she started to get a sinus infection, but I took her into the pedi's office the day she started to cough, they gave her antibiotics, and she has been fine eer since. Also got the lab result that her bleeding time was elevated to the 3rd week in a row. Bleeding time meaning, if Lyla's central line were to get ripped out, or if se were to get cut badly, then she would bleed out faster than someone else. With surgery right around the corner, we started vitamin k orally to try and get her levels back down, she already gets vitamin k in her tpn, because we have had bleeding time issues before. Dr. Keng contacted Dr. Iglesias to let him know about the bleeding time. I'm sure they will have Plenty of blood transfusions on standby, seems how Lyla always needs a transfusion or two during/after surgery anyways.
We have one more lab draw today to check levels before surgery. After being on oral vitamin K, I hope her levels have gone down. Just 7 more days and we will be living at Cooks once again. Theres no telling how long we will be there this time. Come visit us!!! We do not know yet what time surgery is, we will get a call in a few days with times and instructions. It's been a long wait, and we are so ready. Lyla has gotten quite a few goodies for this stay. Two custom hospital gowns, one turtle that was donated by Gracie's Gowns and one Elmo from Tubie Whoobies, also a Emo tubie whoobie g-button pad, She's gotten a sesame street pillow case, mommy made her sesame street bed bumpers, & blanket. & she's got her "Dr. Iglesias is fixin my guts" onesie & "Alright Dr. Iglesias, but this is the last time" socks for surgery. She is set!!! Now to just sit and listen to the clock tick!
Since we've been home from the feeding program, Lyla has been doing well with eating and drinking. Trevor, Lyla and I all caught the flu a few days before Christmas, but it really didn't phase Lyla that much and we were feeling much better by Christmas day. The day Lyla's daddy proposed to mommy 😍 6 1/2 years and a Lyla later 😉
I hope every one had just as great of a Christmas as we did. We were very fortunate to have Avery's Angels Gastroschisis Foundation sponsor Lyla's Christmas, and wonderful families donated gifts to her! We are very Thankful and Blessed!!! December and January have been very busy for us... heck we've been busy since September. Lyla had an Appointment with her surgeon, Dr. Iglesias, on Dec 10th and decided it was time to reconnect her bowels and get rid of her ileostomy bag. We scheduled a barium enema, to check for a narrowing or blockage in her colon before they hooked it back up. On Dec. 26th we saw Lyla's GI, Dr. Keng. She believes if the surgery is successful and Lyla continues to tolerate food as much she has been, then Lyla could be TPN free by her 2nd birthday. That would be a miracle. Seems how Lyla hasn't gained any weight since July, when they bumped her TPN down to 8 hrs.
Since she hasn't been gaining Dr. Keng changed Lyla's oral liquid intake to Pediasure Peptide, a high calorie/protein drink, in place of Elecare Jr. & Pedialyte. At first Lyla didn't tolerate and it was making her vomit up her meals as well. So I started mixing it with pedialyte to half strength, along with nectar to thicken it. She can tolerate half strength, so that's what she's been getting. She is continuing to get speech therapy 3 times a week, and occupational therapy, once a week. She had a follow up swallow function study done in Jan. 15, and she swallowing has improved but not great yet. In observation of 10sips of half nector thick (half less thickner than she's use too), she only had a small penetration once. And it was her very first sip. In observation of 10 sips of thin liquid (without any thickner) she had 5 deep penetrations, and no control over the liquid. So in results we have gone down to half nectar thick, will continuing oral motor skills, & have a follow up swallow study in 4 months. She did very good drinking the nasty chalky barium dye for the X-ray... She actually loves it 😝 and didn't want me to take her cup away! I was glad she wasn't traumatized from that radiology room, because just a week before that she had her barium enema. She was not happy at all while getting the BE. The results were good though, everything went through smoothly. Which means there's a chance the colon could still work. The radiologist estimated Lyla to have about 10cm of colon, just by looking at her BE video and the amount of dye that was used. An average child the same age would have triple that amount. She had another appointment with her surgeon after the barium enema, to talk about the results. He decided to go with Plan A, to reconnect her bowels, without removing the large bowel, only removing minimum off both ends for a clean connection. He said he will accurately measure both small an large bowel while he was in. I have been doing distal refeeds to Lyla (putting stool through her colon with a catheter) to keep her colon "happy" & so far the results of that haven't looked great to me. Its suppose to come out of her bottom, but rarely does, and when it does, it's bloody. The surgeon says the blood is just from no being used enough, it's not "happy". Another concern is the rash around Lylas stomas, it's been there since I can remember. Imagine horrible raw diaper rash, but on her tummy where her surgeon is suppose to make an incision, and a nice clean, straight/small as can be scar. The rash isn't huge, but he will have to remove that skin if it isn't healed by surgery day. It may sound easy, but if it were, the rash wouldnt be there for as I can remember. There isnt much you can put on a stoma rash without the bag falling off, just powder and spray, then no matter how almost healed it is, as soon as the bag leaks, the rash gets worse. She also will get a liver biopsy during surgery. For the biopsy, they will cut & remove a tiny piece liver, then insert a long needle to collect a sample from the inside. She needs this done to be able to really see how bad her lover damage is, her numbers have been elevated for a while now, so her doctors want to check it out. We had to reschedule surgery to 6 weeks after Lyla was diagnosed with the flu, because anesthesiologist will not put her under until then. So Jan 28th is the date, we just have to go one more week without getting sick.
Got a call from Lyla's GI with her weekly lab results. White blood cell count is low, so she's more prone to get sick... And of course she started to get a sinus infection, but I took her into the pedi's office the day she started to cough, they gave her antibiotics, and she has been fine eer since. Also got the lab result that her bleeding time was elevated to the 3rd week in a row. Bleeding time meaning, if Lyla's central line were to get ripped out, or if se were to get cut badly, then she would bleed out faster than someone else. With surgery right around the corner, we started vitamin k orally to try and get her levels back down, she already gets vitamin k in her tpn, because we have had bleeding time issues before. Dr. Keng contacted Dr. Iglesias to let him know about the bleeding time. I'm sure they will have Plenty of blood transfusions on standby, seems how Lyla always needs a transfusion or two during/after surgery anyways.
We have one more lab draw today to check levels before surgery. After being on oral vitamin K, I hope her levels have gone down. Just 7 more days and we will be living at Cooks once again. Theres no telling how long we will be there this time. Come visit us!!! We do not know yet what time surgery is, we will get a call in a few days with times and instructions. It's been a long wait, and we are so ready. Lyla has gotten quite a few goodies for this stay. Two custom hospital gowns, one turtle that was donated by Gracie's Gowns and one Elmo from Tubie Whoobies, also a Emo tubie whoobie g-button pad, She's gotten a sesame street pillow case, mommy made her sesame street bed bumpers, & blanket. & she's got her "Dr. Iglesias is fixin my guts" onesie & "Alright Dr. Iglesias, but this is the last time" socks for surgery. She is set!!! Now to just sit and listen to the clock tick!
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