Well I was right about Bentley’s surgery being a super long day! We did not get to see him for 5 hours after they took him back. When we got there he was not happy that he was at the hospital. The anesthesiologist wanted to give him Versed to calm him down and make things easier on him. Usually all of the doctors do not want to give him any more meds than they have to because his brain is really sensitive to them. I told them this, so they ended up giving him a half dose. I honestly think they would have had to intubate him if they would have given him the full dose because he would have stopped breathing. He was SO out of it. At first he was just laughing, but after a few minutes he was rolling his eyes around and his body was completely limp. I would rather have him out of it and not remember it than freaking out the whole time, but that was a bit much. If there is a next time, we will definitely only do a fourth of a dose.
Joe talked the anesthesiologist into letting me go back with Bentley while he was put to sleep. I actually went into the OR with him this time, so I had to get all doctored up. He thought that was pretty funny since he was already out of it. It really was so much easier on him though. He didn’t cry at all when I put him on the table, and they didn’t have to hold him down and be forceful with him like last time because he could have cared less what anyone was doing.
They took his eye stint out first. The procedure only had a 50% chance of working. The doctor said that when he flushed the tear duct it went right through with no problem 🙂 I was pretty excited! Now we just have to hope that it continues to work. Next, they cleaned his ears out. He had to get one new tube. Last was the repair of his cleft lip. The doctor said that it went fine, and he was on the way to the PACU when he was leaving. All great news!
Usually Bentley is in recovery for about an hour before they come to get us and either let us see him or take us up to his room to wait on him. It was taking much longer this time. Finally, the receptionist came to tell us that the anesthesiologist wanted to talk to us in the consultation room. Of course my heart dropped because they normally will just come and talk to you where you’re at. He said that Bentley was having trouble waking up because they had given him so much medication. I tried telling them before he went in that his brain is very sensitive to any type of sedative or narcotic. Obviously we are going to have to make this a big point in his chart from now on, because he should not have been given all of the meds that they gave him. I’m the one that is usually begging them to give him anything besides tylenol because they are the ones that don’t want him having anything stronger. I guess this anesthesiologist was a little med crazy. Anyways, he was in recovery for at least another hour before Joe and I got to go back and see him.
He was resting comfortably by the time we got back there. He looked SO different. That was the first time I’ve cried when I saw him for the first time after a surgery. I couldn’t believe how good it looked. Not only did they repair the lip to the point that you couldn’t tell it had been a cleft, but they lifted his nose up on the side where it was flat before, so it really changed his whole face. He was still on 2 liters of oxygen when we got back to him, so he was still having a little bit of trouble breathing on his own.
They didn’t have any rooms open on the neurology floor so we ended up staying on the 4h floor in the general care area. They did a good job taking care of him as well as putting up with me 😉 It took him a few hours to get off of the oxygen, but once he was off of it, he was fine. Pain control was the biggest problem. He HATES the hospital with a passion, so he is really never happy there. It was really hard to watch him cry so hard. Once he got to sleep for the night, he slept pretty well and was doing much better the next day. Dr. McDreamy came in to check him out, and he gave us the all clear to go home! The nurses loved us so much that they had us kicked out by 11am lol Definitely the fastest discharge process he’s ever had!
Bentley has had a pretty smooth recovery. The biggest problem was that the antibiotic and high dose of motrin they kept him on were upsetting his stomach. We have been able to keep him happy pretty easily though. If all else fails, we just turn the movie Rio on. The boy has a very serious addiction to Rio!
Everything was all good and smooth until yesterday. I was going to get a shower while he was napping and told Joe to listen for him while he was watching football. I turned the water off and heard him crying, but Joe was trying to get him calmed down. All of a sudden Joe starts freaking out saying that he needs help and he’s throwing up blood. When I got in the room he had thrown up blood all over himself and Joe and was still gagging and vomiting. There was tube backed up in his farrell bag which was hooked up to his stomach too. My first thought was that the meds were making him bleed because he had been acting so irritated with them, then I thought about his G/J tube, and thought that something could have dislodged or punctured something. I was going to take him to Chldren’s, but wasn’t really sure how big of an emergency it was, and he was still throwing up blood, so I called 911. He was still gagging and coughing when the paramedics arrived. They said the same thing, that they would not be comfortable having us drive him anywhere, and they would just take him by ambulance. So Bentley got to take his second ambulance ride! Needless to say, he has definitely mastered scaring his mommy and daddy.
If anyone has been to the Urbana ER, you know that it’s not exactly the best one around. I think it’s a problem when I’m having to explain every little thing about my son to them, but it was the same way the last time so I didn’t expect any less. Their verdict was that one of his sutures from the repair came out and he swallowed all of the blood from it. They did some xrays to check for “tube placement” just to be safe. They also did a chest xray to check for aspiration I’m guessing. To check for tube placement, contrast has to be inserted into the tube before the xray is taken. They never even touched his tube. Bentley was acting like his normal self though, so I was not about to say anything and have them mess something up with him or upset him by staying any longer than we had to. They came in and told us that the tube was in the right spot and the xrays looked fine and to follow up with his doctor.
Bentley’s craniofacial doctor who did his cleft repair is going to see him in the morning, so hopefully he didn’t mess anything up with his lip. He has been really grumpy today, but no more blood so that’s a good thing. He has also had food going through his gtube again for the past almost 4 hours. I really think he’s been bored sitting at home for the past week, and he just wants any way to get out of the house! Maybe we will go for a walk tonight so that he will be good for the next couple of days 🙂
Bentley’s GI doctor’s nurse ended up just giving us a call back about all of the issues he was having, and she prescribed erythromycin to help with his digesting troubles. It is an antibiotic that is given in small doses to help his stomach empty faster. He has to take it four times a day. He could only need it for a short amount of time, or it could end up being one of his regular meds for who knows how long. It seems to be helping him. He has had problems twice since then, so that’s a lot better then every night like it was. I really don’t want him being on another med, but if it works I’m all for it!
He was pretty full of himself last night and fought his sleep for 7 hours. I think his tooth that has been trying to come in for over 2 months has been bothering him…just great considering he won’t be able to have anything in his mouth for three weeks starting tomorrow.
We have to be at Children’s at 5:45 in the morning, and Bentley is set to go into surgery at 7:30. He will be getting his cleft lip repaired, his ears cleaned out and possibly a new set of tubes, and the stint that was put in his eye to create a tear duct will be removed. He will have to wear arm restraints for 3 weeks to keep his hands away from his mouth. They are going to hold off on the MRI for now. I really try not to think about surgery, but it’s always in the back of my mind. This one has all of the normal fears that go along with it, but it’s a lot more emotional for me because of his lip getting repaired. He had his cleft the first time I saw him, and it’s what I’ve looked at every day for the past 25 1/2 months. To us, it makes him Bentley. It is really not something that either Joe or I want to do, but we will do it in hopes that he will be able to speak and possibly eat easier. It’s going to be a very hard and long day, and an even longer 3 weeks of recovery!
Bentley has been keeping us on our toes lately :). Today we took him to Children’s to get some xrays to check for tube placement. He has been vomiting and gagging at night for the past week now. It has got to the point where he cannot tolerate any feeds at night or in the morning, even thru his jtube. Not good! He had been doing so well and had been on his last phase of his feeding transition for 8 days before all of it started. So I was hoping that maybe his tube was just out of place and it would be an easy fix. Of course that isn’t the case 😉 His GI dr. is supposed to give me a call back tomorrow, so we will see what she wants to do. She had talked about doing tests if he could not tolerate the changes. It is just so weird that he is fine during the day. All I can think is that he needs to be elevated upright and that’s why it’s happening when he’s in his crib, but then again it really doesn’t happen during his naps, so hopefully she will have some ideas of what is going on tomorrow.
Bentley has been doing amazing in all of his therapy! Well, minus sensory integration :). Loudness and weird places are definitely his biggest issue minus the feeding stuff right now, although he has made progress since beginning the therapy. Thursday will be his last session for 8 weeks. They have so many kids that they see them in 8 week intervals. It really works at well though because he will be recovering from surgery and not be in the mood anyways. His physical and occupational therapists have been so impressed with him lately. They say that he just learns more and more each week, so I really can’t ask for more than that! He makes me a pretty proud mommy 🙂
He has figured out when we are turning on the street to our house and he gets so excited. It’s so cute and shows how well he is doing cognitively. He’s also starting to pull himself up with a little help, especially to see his fishie. He wants to be very independent lately and is completely content playing by himself. He’s very expressive as I like to put it, and is letting his 2 year old personality shine through.
Bentley has a dentist appointment tomorrow morning at Children’s and then I’m hoping his GI dr. will just squeeze him in for an appointment, so we have a long day ahead of us! Fingers crossed for an easy fix!
Bentley’s surgery back in May didn’t go exactly as planned. His tear ducts were even more deformed than they had originally thought, so the chance of the stint working went from 90% to 50%. However, so far so good and we are very thankful for that! His MRI results were stable so that was good. He ended up spiking a little fever and getting a rash after surgery so they kept him over night, and it was cleared up by the next morning so we were able to go home. His circumcision, the most common thing he had done, was what went really wrong. A week later the ring they put on it to keep the skin back was still on it. It was supposed to fall off a few days after surgery. He was in a ridiculous amount of pain. It hurt him even having his diaper on. We took him to the ER and they had to pull and cut it off of there with just a little bit of numbing cream 😦 It was horrible, but he had immediate relief from the pain and everything has been okay since then.
Bentley had his 2nd birthday just a couple of weeks ago which was of course amazing!! We had an elmo party for him. He wasn’t too thrilled about having so many people around at once. He made it obvious that we still have a long way to go with his sensory integration therapy! It was really nice to share the special day with everyone who loves him though. Thank you to everyone for all of his gifts! He has been having so much fun with all of his new toys. The day after his party on his actual birthday we took him and Peyton to the zoo. Aunt Amber tagged along and we had a lot of fun. Bentley was much more into the animals than he was the year before when we went to the zoo. He loved it! I will post some pictures after I am able to get them off of my camera. It was a really special weekend, and we are so blessed to have spent Bentley’s 2nd birthday with him!
We have been keeping busy with therapy. He now has it 4 days a week. He gets occupational therapy for motor skills and eating, speech therapy, physical therapy, and occupational therapy for sensory integration. He also still has specialist appointments a couple of times a month. Overall, he has been in good health. The only problem he is having right now is drainage from his ear. It was bleeding a couple of weeks ago so he started some ear drops, and then it started up again last night even worse than last time. He is going to get a different kind of drop tomorrow, which will hopefully clear things up for good. He also had his liver function tested recently and it was mildly elevated. This could become a serious problem due to his CMV, so we are praying that it will resolve itself. On a positive note, he has been doing great with his new feeding schedule. In a couple of days, he was be COMPLETELY Gtube fed!!! (If he can tolerate it.) This will be the first time since he was a month and a half old that all of his food will be going to his belly. Very exciting!
Bentley continues to amaze us daily with all of his progress and accomplishments. Recently he has learned to put objects in and out of containers, scoot literally all around the house and get into anything that he feels like getting into, and he has even learned his fist sign! He can sign the word more. He uses it to say he wants to play with a toy more. We are now working on the phrase all done. I can’t express how happy I am with everything that he is doing. His neurologist was talking about what a miracle he is at his last appointment and how none of his doctors would have ever imagined he would be where he is today. I can honestly say that I did not expect him to do everything that he has done in such a short amount of time either. I’m just so proud of him! 🙂
So no joke, I am really going to try to keep this thing updated more often! There is just too much to say when I wait so long, and I know that everyone will get to know him better if I do so more often. I have always told his dad that I wish people could see more of who he really is because he is not usually himself in public or around people he does not see everyday due to his sensory problems. I’m really going to make the effort to let his personality shine through his blog 🙂
I am so sorry to all of Bentley’s faithful followers! I am horrible at keeping this blog updated as you can tell. The only good part of that is that no news usually means good news in Bentley’s case.
Bentley has been doing a lot of new things over the past two months. He has learned how to clap, say “gaga” for grandma, say “dada,” reach to be picked up, put his hands together when you say the word spider to sing the Itsy BItsy Spider, and he has been doing amazing with sitting. He can sit up to 40 minutes without support or help regaining his balance. I would still consider him a beginning sitter though because he will fall to the side or backwards. We’re starting to work on getting in and out of a sitting position in physical therapy. He just got a stander a couple of weeks ago to help him gain strength. He did well in it his first time, but has not liked it since then, so I think we are going to try something different for him. He started going to speech therapy that focuses on communication once every other week. He is becoming very expressive and carries on conversations whether they can be understood or not 😉
Our biggest change has been with GI. Bentley is finally getting food through his gtube and into his stomach again! Ever since he was a month old he has been fed via jtube which bypasses his stomach and goes straight to his intestines. Our goal is that he will get regular feedings throughout the day and be fed through the jtube all night. He would get 5 feedings a day and be on the pump for an hour for each feeding. Right now he is at 52 mL an hour for 23 hours a day, 11 hours through the G and 12 hours through the J. He has been doing great and has had no problems so far.
He has had a few other appointments the last couple months. The Ear Nose and Throat doctor said his tubes looked good, and he didn’t have to come back for 6 months. The audiologist said his hearing is perfect. He had the best hearing test results he has ever had. We just went and saw endocrinology today, and she said she didn’t need to see him back for a YEAR! I was pretty excited to hear that 🙂 He graduated from the neonatology clinic about a month ago because he is now too old to be going there. I was happy and sad at the same time. Dr. Neilin was an amazing doctor, and I am sad that we do not have her on his team anymore. Everyone in the clinic was sad to see him go. He went out with a bang though flirting and showing off for everyone who came to see him.
Yesterday we went and saw the physical medicine clinic for the first time. His doctor there is Dr. Klamir. He did fine at the appointment, but me not so much. They gave him a new diagnosis of Cerebral Palsy. Honestly, it’s not really a new diagnosis. It doesn’t describe anything that I didn’t already know about him, and a lot of kids with HPE are said to have CP because of their physical disabilities and the fact that more people are aware of what CP entails, and it makes it easier to get services. Even though I knew all of that, it was still so hard to hear a new diagnosis. Especially when he is now 20 1/2 months old and I thought I already had everything with him down pat. On his discharge papers the official diagnosis was “Quadriplegic Infantile Cerebral Palsy.” Seeing the words quadriplegic and cerebral palsy and him having surgery coming up in a couple days was just too much!! So yesterday was a hard day. It’s been awhile since I’ve had one though…I guess I was overdue 😉 The clinic also referred him to occupational therapy which he will be having at Children’s for sensory integration. That makes 3 OT’s, 3 SLP’s, and 1 PT. Busy little guy! They also want him to wear braces on his legs when he is working on standing, so he will be getting fitted for AFO’s next week and we should have them within two weeks of that.
I think I covered everything! Tomorrow Bentley is going in for surgery. We have to be there at 6 and surgery starts at 8. He is getting a tear duct created in his left eye, a MRI, a circumcision, and undescended testes correction. It is supposed to take about 3 1/2 hours. His longest surgery yet by an hour and a half. Please say a prayer for him!
Bentley’s sleep study ended up being just as horrible as I thought it would, at least as far as getting him all hooked up. He cried the entire time, and it ended up taking almost an hour. If you know my little man, you know that he never cries! He just did not want to be messed with. It breaks my heart to watch him cry so hard and not understand why he is getting things done to him. It makes me feel so mean. I know it is what is best for him though, and I do not put him through any tests that I do not feel are necessary. He actually ended up sleeping really well. He slept from 10:30 to 5:30. He didn’t cry at all for the finger stick, but he cried the whole time he got everything taken off. He didn’t stop crying until he realized he was about to go home, then he was all smiles.
I called Tammy, his complex care nurse, and asked her about the results. She said I needed to talk to someone who could interpret it better, but from what she understood he had NO apnea spells. (He had 9 apnea spells during his last study.) This means that repairing his cleft palate was the right decision for him. It was such a huge relief for me because that was a decision that I really struggled with. He did have some central apnea on the last study, so I’m not sure if that resolved itself, or if it just didn’t occur that night. I will have to talk to his neurologist more about it. The big thing is that no intervention is required at this time!
We have been working on eating pureed foods, which is mostly baby food mixed with rice or oatmeal cereal. Bentley started out doing pretty well, but now he is not swallowing anything. He pretty much just holds the food in his mouth. He hardly ever actively swallows. He will either spit it out, or it will happen to go down on its own. He did better the last time I fed him, but he hasn’t ate anything the past two days because he has been fussy. I know it will be a long process and we just have to keep working at it.
Along with Bentley being fussy the past couple of days, he has been running a fever on and off. It is a low fever – the highest it has been is 99.8. This is still pretty high for him though. His normal is in the 97 range. I’m praying it is just teething. He is not showing any other signs of illness, does not sound congested, and his gtube site looks good. The only other things that I can think of are a shunt malfunction or an underlying infection. If it gets to 101, I will take him to Children’s. I made an appointment with his pediatrician for Monday morning because that was the soonest opening that they had, so hopefully he will stay stable until then and we can get his thoughts on it. I will try to update sooner next time 🙂
This past Thursday was the big swallow study that Bentley has been preparing for. Prior to the study, he was getting speech therapy once a week to try tastes of pudding and work on oral motor skills. He has been focusing on oral motor skills during half of his weekly occupational therapy sessions as well. He has been doing great with putting toys in his mouth and chewing on his oral motor toys. We’ve also been doing tastes of baby food at home, which has been a lot of fun! (More so for me than Bentley 😉 ) He really doesn’t seem to like fruits at all. I think that maybe the sweetness is just too much for him since he is just starting to taste things. The only thing that he has not completely spit out everywhere for me so far is sweet potatoes. I’m going to try to find some vegetables for him tonight and see how he does with them. I will also probably try some yogurt because he has been doing okay with pudding and he really likes his vanilla and chocolate Pediasure when I dip his toys in it.
I felt like we were really prepared for the swallow study. That morning, I got a call from another speech therapist saying that his therapist was out sick that day. This made me really nervous because Bentley is very particular with who is allowed to be near him and work with him. He does NOT trust strangers. Luckily, we got another great speech and occupational therapist to work with. We did therapy in the room the swallow study would be in the week before, so he was already comfortable being in there. He really surprised me and did an amazing job. He was not scared and didn’t cry at all until the very end when he was just wore out. In order to see where the food is going when it is being swallowed, they have to mix it with barium. He was obviously not a fan of this, and he ended up having to eat straight barium because they couldn’t get enough mixed in with the pudding and Nesquick, but he still did great. I was so proud of him! I really did not expect him to do so well with it.
He completely got through the pureed part of the study, and they gave us the clear for him to continue eating pureed things at home. They only got a few swallows of the honey consistency, so we are to continue working on that consistency in therapy. Once he is able to tolerate more, we will do another study and hopefully work all the way down to a liquid.
I called his GI doctor after the study because the other huge issue with his eating is his reflux. Right now he is completely fed through a G/J tube, meaning that all of his food bypasses his stomach and goes straight to his intestines. I have not noticed any reflux since we’ve been trying bites of pureed things which is a really good sign. Even a couple of bites is a lot for him because he hasn’t had anything in his stomach since he was a month and a half old. The GI doctor, Dr. Mousa, had her nurse call me back late Friday with orders to continue doing pureed things over the weekend and call with an update Monday. I guess that I didn’t make it clear in my message that he was only doing tastes and small bites of food. So basically all of that was scratched, and they are going to get back with me Monday about any changes in his feeds and meds that they want to do. I’m hoping they will want to make some big changes so that we can keep the ball rolling. However, nothing will be changed until Tuesday because he has a sleep study Monday night, and I wouldn’t want anything to effect that.
So tomorrow we have occupational therapy in the morning and we have to be at Children’s for the sleep study at 6. His last sleep study was horrible for him, so I’m hoping this one won’t be as bad, but definitely not counting on it. I will write with an update on how everything goes on Tuesday 🙂