This past Friday we went for Jacob's first Botox treatment. Before the appointment we stopped to get his legs casted for his new leg braces. Currently He scissors his legs and his feet turn inwards. The leg braces will help keep his feet flexed, straight, and his legs apart. He did very well during the casting and didn't make a peep. He was a little trooper that day. We were able to pick out a pattern for the braces so we chose the planes, cars, and trucks. For anyone who knows our other son, he will be elated to see the pattern on Jacob's leg braces and will probably want a pair of his own. We should receive his braces, along with his hand splints, in a week or so.
We then went to Akron Children's for his Botox treatment. What we thought was going to be a quick and simple procedure, yet again, turned out to take a different direction. When they took Jacob back for sedation they did not like the way his lungs sounded. Ever since his hospital stay a few weeks back Jacob has not seemed to fully recover from his respiratory infection. They confirmed that back in the sedation room. They said he was very wheezy, even after suctioning his airways. The doctor than laid out two options. We could either wait and reschedule his injections for a later date, or we could go ahead with the procedure and just give him a pain medication with no sedation. As we talked out the options, rescheduling did not seem to be the best plan. Jacob on a normal day is raspy and wheezy with his breathing. It is just the nature of his diagnosis. If we waited three more weeks we most likely would land ourselves in the same situation.
On the other hand, the second option seemed so painful and inhumane at first. Jacob would receive a heavy pain killer, but would not be sedated and would be fully awake during the procedure. Jacob was due to receive 24 injections in his biceps, forearms, thighs, and calves. I hate taking our children to the doctor to get their immunizations, and now we were being asked to go ahead and stick Jacob 24 times while he is fully awake. As horrible as it sounded, our doctor informed us that this is how it was done not that long ago. He also mentioned that some of his partners still carry out this treatment on their patients with no sedatives. Our doctor stated that he chooses not to practice this way if he has the option to sedate. In some cases like Jacob, it is really the only option you have if you want to receive the Botox treatment. We also thought about how irritable and miserable Jacob can be on a daily basis and it may be best from the quality of life stand point to sacrifice 10 minutes of pain for 3-6 months of possible relief.
So, I hope Jacob won't hate us later in life for choosing to do the injections that day. Let's just say that was the longest 10 minutes I have ever been through. Shawn, myself, and the nurse had to hold down Jacob while the doctor injected him over and over again. To hear his cries and screams just broke my heart knowing there was nothing you could do to comfort him. I think it is safe to say after witnessing that I may not be cut out for the medical world. But at least it is over with and hopefully Jacob will be able to relax his body. They informed us it can take 3-7 days to see the effects from the Botox. We are on day two and have not seen any improvement as of yet. Fingers crossed it worked!
Next up is our appointment with the neurologist tomorrow. We shall see what that appointment brings. Stay tuned!
Sunday, February 22, 2015
Tuesday, February 3, 2015
Physiatrist.. And then the ER
This past Monday we had our appointment with the physiatrist at Akron Childrens. Of course that morning Jacob woke up like a floppy noodle. I had never seen him with muscle tone that low since he was born. Go figure the day we take him to see the doctor for his high tone, he has the lowest tone possible. Jacob loves to cooperate like that when it comes to our appointments 😉. Although the doctor was not able to assess Jacob's tone to the fullest, he did recommend a couple different options. The one he really pushed was Botox. Botox is used to treat high muscle tone because it essentially paralyzes the muscle and helps it to relax. Jacob would receive injections in his calves, thighs, biceps, and fingers. The injections in these areas should help with his therapies, along with his overall well being. Right now Jacob's legs are so tight that diaper changes, clothing changes, and other daily functions are a struggle. It is like trying to break a wooden board in half just to bend his leg, let alone try to pry his arms open. The Botox will last 3-6 months so we should hopefully see after the first treatment if this is something beneficial for him. We will set up this appointment once it clears insurance. I wonder if there is a way they can add a few more vials for me?!? I think mama needs it more than Jakey! Lol!
The doctor also asked what equipment we have for Jacob. Shawn and I both looked at eachother and kind of laughed. We said our arms. If Jacob is not laying on his play mat or on his oversized pillow, we are holding him. We have tried to ask for different types of positioners or chairs for Jacob to sit/stand in, but there really is nothing on the market for special needs babies it seems. The doctor wrote a script for a special needs stroller, stander, chair, leg braces, and neck brace. At that point reality kind of hit me again with the severe needs of Jacob. His poor little body cannot even sit up on his own or even hold his head up. At least these items should provide him with some comfort, mobility, and less stress on our bodies from holding him all the time. Overall, it was a good first appointment with his new physiatrist.
After Jacob's appointment we decided to stop up to see the team at Palliative Care. As the day progressed Jacob was looking worse and more lethargic. We wanted to see if one of the doctors in their office could take a quick look at him. The main doctor who normally visits with us was there when we arrived and wanted to take a listen to him. Once she did, she said she was not comfortable with how he was breathing and felt we should go to the ER. So, our little trip to the physiatrist turned out to be a trip to the ER now. We headed downstairs to the ER and were seen relatively quick. When they called Jacob back to do an initial assessment, his pulse ox was very low and they ended up rushing him to a trauma treatment room. In a blink of an eye nurses were rushing him off and the room filled with 7-8 different medical professionals all performing different tasks. They were asking us a slew of questions and working quickly on Jacob. He was a lot worse than we ever imagined. He was working hard to breathe and they ended up doing several treatments on him. They were running various tests and xrays to find a cause. Jacob tested positive for RSV and the beginning stages of pneumonia. He was placed on a Vapotherm oxygen machine to help maintain clearer airways. It all was a blur to be honest, but once they got Jacob to a stable point they moved him up to the PICU. He remained there for the next three days. Each day he slowly got better and they lowered his oxygen levels. On the third day they moved him out of the PICU to a regular children's inpatient unit to continue to monitor him and ween him completely off of the oxygen. On the fourth day they were comfortable enough to let us take Jacob home. They sent him home with a breathing treatment kit along with a suction machine for his excessive secretions.
Let's just say last week was a really close call for Jacob. You hate to think about what if we went home and never stopped up at Palliative Care? I try not to let my mind go there. It was a long, emotional week but we are all back at home again and doing well!
The doctor also asked what equipment we have for Jacob. Shawn and I both looked at eachother and kind of laughed. We said our arms. If Jacob is not laying on his play mat or on his oversized pillow, we are holding him. We have tried to ask for different types of positioners or chairs for Jacob to sit/stand in, but there really is nothing on the market for special needs babies it seems. The doctor wrote a script for a special needs stroller, stander, chair, leg braces, and neck brace. At that point reality kind of hit me again with the severe needs of Jacob. His poor little body cannot even sit up on his own or even hold his head up. At least these items should provide him with some comfort, mobility, and less stress on our bodies from holding him all the time. Overall, it was a good first appointment with his new physiatrist.
After Jacob's appointment we decided to stop up to see the team at Palliative Care. As the day progressed Jacob was looking worse and more lethargic. We wanted to see if one of the doctors in their office could take a quick look at him. The main doctor who normally visits with us was there when we arrived and wanted to take a listen to him. Once she did, she said she was not comfortable with how he was breathing and felt we should go to the ER. So, our little trip to the physiatrist turned out to be a trip to the ER now. We headed downstairs to the ER and were seen relatively quick. When they called Jacob back to do an initial assessment, his pulse ox was very low and they ended up rushing him to a trauma treatment room. In a blink of an eye nurses were rushing him off and the room filled with 7-8 different medical professionals all performing different tasks. They were asking us a slew of questions and working quickly on Jacob. He was a lot worse than we ever imagined. He was working hard to breathe and they ended up doing several treatments on him. They were running various tests and xrays to find a cause. Jacob tested positive for RSV and the beginning stages of pneumonia. He was placed on a Vapotherm oxygen machine to help maintain clearer airways. It all was a blur to be honest, but once they got Jacob to a stable point they moved him up to the PICU. He remained there for the next three days. Each day he slowly got better and they lowered his oxygen levels. On the third day they moved him out of the PICU to a regular children's inpatient unit to continue to monitor him and ween him completely off of the oxygen. On the fourth day they were comfortable enough to let us take Jacob home. They sent him home with a breathing treatment kit along with a suction machine for his excessive secretions.
Let's just say last week was a really close call for Jacob. You hate to think about what if we went home and never stopped up at Palliative Care? I try not to let my mind go there. It was a long, emotional week but we are all back at home again and doing well!
Sunday, January 25, 2015
Sick... AGAIN
For the past week now Jacob has been battling an illness of sorts. He has had an on again, off again temperature, along with being extremely fussy, tired, and overall lethargic. Jacob also has a bad cough and his breathing sounds miserable. It is hard on a daily basis hearing him wheezing with very deep, almost labored sounding, breaths. This unfortunately is to be expected when he gets sick though. As stated before in previous posts, he does not have the ability to effectively clear his airways so he struggles with respitory functions. We have been watching him go through a cycle of sleep, startle, scream, sleep, startle, cry, cough, sleep... Well, you get the point. I hate to see him look so miserable and in such pain, but there really is nothing we can do. And his sleep is horrific. I feel like he is a newborn again waking every hour or every other hour just screaming. We had to skip therapy for him this week too which I am sure does not help either. We hope that Jacob starts to turn it around here soon before he lands himself in the hospital again.
A couple other updates too. Palliative Care came out this week to do a home visit to see how Jacob was doing. We expressed our concerns how he is still very high toned and how he can be stiff as a board when you're holding him. They discussed some different options but really it sounds like more medicine is the key for now. The good news is Jacob's appointment with the physiatrist got bumped up to this Monday. A physiatrist is a rehabilitation and pain management doctor. They will hopefully help us figure out ways to keep him comfortable and not as stiff with his tone. Jacob also got a new bathing chair this week since he cannot sit up on his own and he has definitely outgrown his infant tub. We will try this out soon and hopefully it will make that time a lot easier and less stressful. I think Dominic likes to use it as a lounge chair in the living room more so then having Jacob use it in the bathtub. I found him on it the other day reading a book. Oh Dominic, never a dull moment with you!
Here's hoping this is a better week for Jacob!
A couple other updates too. Palliative Care came out this week to do a home visit to see how Jacob was doing. We expressed our concerns how he is still very high toned and how he can be stiff as a board when you're holding him. They discussed some different options but really it sounds like more medicine is the key for now. The good news is Jacob's appointment with the physiatrist got bumped up to this Monday. A physiatrist is a rehabilitation and pain management doctor. They will hopefully help us figure out ways to keep him comfortable and not as stiff with his tone. Jacob also got a new bathing chair this week since he cannot sit up on his own and he has definitely outgrown his infant tub. We will try this out soon and hopefully it will make that time a lot easier and less stressful. I think Dominic likes to use it as a lounge chair in the living room more so then having Jacob use it in the bathtub. I found him on it the other day reading a book. Oh Dominic, never a dull moment with you!
Here's hoping this is a better week for Jacob!
Wednesday, January 14, 2015
Some updates
Thought I would give some updates on Jacob. Nothing major, just little odds and ends updates. Jacob started with a new aquatic therapist last week. This is his third therapist in 5 months. To my surprise, the transition has gone very well. She has done great with him and is comfortable with Jacob in the water. She has only dunked him once.. So progress! Jacob's new therapist also has been doing pediatric therapy for 17 years so she is pretty established. We may even be able to have her come to the home to do some land therapy with him, which he struggles with. To date, he can not hold his head up, roll over, lift his head for long periods of time during tummy time, sit, or grab toys. So anything she can help us with for Jacob is a plus.
Speaking of milestones, Jacob has yet to eat any solids and he just turned 8 months. We have tried several times to feed him rice cereal but he struggles with 2 things: head control and understanding how to swallow food. So as it stands, he is going to remain on formula for awhile. Most of these types of babies never will fully learn how to eat on their own. The steps to eating solids is too complex for their thought process. One big plus is that we are starting to get some relief when it comes to paying for his ungodly pricey formula he has to be on. Jacob has been approved for additional insurance for medical handicapped kids and they assist with paying for the formula. This has been a tremendous gain especially since we are on one income right now.
Another update is Jacob has been fit for hand splints. He often has his hands fisted and is unable to reach for or grab objects. The splints will make it easier for Jacob to keep his hands open and the thought process is that he may be able to eventually attempt to reach and grab for objects. I am glad he will be receiving these because at times his little hands will begin to turn purple from clenching them so hard.
One other update is Jacob is back to sleeping inconsistently 😴. I think this is going to be a common theme for him unfortunately. Last night alone he was up three times throughout the night. Two times a night is the norm for him. The hard nights are when he wakes, you feed him, give him meds, and then he is up for the next hour arching and fussing. Jacob is now 18 pounds and it becomes hard to basically wobble around an 18 pound agitated baby for an hour. It is starting to do a number on my back to say the least, along with my soon to be gray hair! The neurologist did give another med to help him sleep better but we have seen no positive effect as of yet.
Besides all of that, we are set up to see the physiatrist at the end of February and the neurologist at the beginning of March. Until then we wait... And wait... And wait to see what is around the corner for Jacob.
Oh yes, and to top it off, we started Dominic in preschool this week. Although it is only 2.5 hours a day for 3 days a week, it nearly breaks my heart. He was a trooper on Monday and trudged through it. Today, for his second day, not so much. He did not want to go and did not want me to leave. I left him in big, sobbing tears there. I am not ready for all of this!! Ha..
Speaking of milestones, Jacob has yet to eat any solids and he just turned 8 months. We have tried several times to feed him rice cereal but he struggles with 2 things: head control and understanding how to swallow food. So as it stands, he is going to remain on formula for awhile. Most of these types of babies never will fully learn how to eat on their own. The steps to eating solids is too complex for their thought process. One big plus is that we are starting to get some relief when it comes to paying for his ungodly pricey formula he has to be on. Jacob has been approved for additional insurance for medical handicapped kids and they assist with paying for the formula. This has been a tremendous gain especially since we are on one income right now.
Another update is Jacob has been fit for hand splints. He often has his hands fisted and is unable to reach for or grab objects. The splints will make it easier for Jacob to keep his hands open and the thought process is that he may be able to eventually attempt to reach and grab for objects. I am glad he will be receiving these because at times his little hands will begin to turn purple from clenching them so hard.
One other update is Jacob is back to sleeping inconsistently 😴. I think this is going to be a common theme for him unfortunately. Last night alone he was up three times throughout the night. Two times a night is the norm for him. The hard nights are when he wakes, you feed him, give him meds, and then he is up for the next hour arching and fussing. Jacob is now 18 pounds and it becomes hard to basically wobble around an 18 pound agitated baby for an hour. It is starting to do a number on my back to say the least, along with my soon to be gray hair! The neurologist did give another med to help him sleep better but we have seen no positive effect as of yet.
Besides all of that, we are set up to see the physiatrist at the end of February and the neurologist at the beginning of March. Until then we wait... And wait... And wait to see what is around the corner for Jacob.
Oh yes, and to top it off, we started Dominic in preschool this week. Although it is only 2.5 hours a day for 3 days a week, it nearly breaks my heart. He was a trooper on Monday and trudged through it. Today, for his second day, not so much. He did not want to go and did not want me to leave. I left him in big, sobbing tears there. I am not ready for all of this!! Ha..
Sunday, January 4, 2015
Closing the book on 2014
I think it is safe to say this has been the longest, most emotional, and challenging year to date. It truly is overwhelming to think back to January and all that has occurred over the course of this year. We have been through so much but have also come so far with the birth of Jacob. We endured much heartbreak but also gained much love from this little man. We also have seen what a champ Dominic has been and what an awesome son and big brother he is. We are happy to finally close the book on 2014 and start over in the new year. It does get a little frightening though to think about what may come in the new year. With Jacob's diagnosis and prognosis, will it really get better in 2015? Stay the same? Or get worse? This holiday season was a bit harder than I would have expected. I often pondered the thought while celebrating Christmas with our family, could this be Jacob's one and only Christmas? Hard to believe that could be the reality of it all. I am glad we did have so much time together as a family and enjoyed each little moment. Although we don't know what is around the corner, here is hoping that 2015 is a bit calmer and quieter than this past year!
Sunday, December 21, 2014
Jacob can read!!!
He can read!! Okay, okay, not really... But Jacob sure could have fooled us. It seems as if after posting about sleep being overrated, he decided to be a good little baby and start sleeping more (except for last night). It was as if he read the blog and said "hmmm, maybe I'll cut my parents some slack." Or he is a fan of reverse psychology?!? Whatever it is, we will take it! After Jacob's hospital stay we decided to convert him finally to his crib. Due to his spasticity, laying on a harder flat surface is not comfortable for him. I found a baby memory foam pad for the crib and that did just the trick. Since we put him in his crib he is sleeping from 10:00 to 4:00-5:30. After we feed him he than sleeps to 8:00 most days. It is definitely a breath of fresh air to get him moved out of our room and sleeping a little more. Now if only I can re-wire myself to sleep straight through until 4 or 5:00.
Besides that, we did have an update with the neurologist last week. He still feels that seizures are due to arise any day for Jacob. Although I know it is most likely inevitable, it is still so hard to believe we will be facing multiple seizures daily with our little man. The neurologist also noted no appreciable change in development with Jacob, which always hurts to hear. Unfortunately it is the truth though. He decided to up his med dosages because his spasticity was getting pretty bad again. This could be a reason too I am sure why he might be sleeping better because his body can relax a little better. We do not go back to the neurologist until March now.
One last update is our aquatic therapy. Unfortunately Jacob's therapist decided to leave the practice due to 2 other jobs she already has. Jacob was starting to do pretty well with her and enjoyed his weekly pool time. We were just informed that the new therapist they brought in does not have experience with young pediatrics... GREAT! They are looking to possibly bring someone in on a contracting basis to work with Jacob and another little boy there. This is not a guaranteed agreement yet. If this does not work out then we are back to Akron and back to rushing around with long, drawn out days of appointments. I really hope we can stay close to home because life has been so much more calm and less stressful not running out to Akron every week. The downside of all of this is by the time we figure out what is going to happen, Jacob will be out of therapy for 3 weeks. That is never a good thing.
That's all I have for now...
Besides that, we did have an update with the neurologist last week. He still feels that seizures are due to arise any day for Jacob. Although I know it is most likely inevitable, it is still so hard to believe we will be facing multiple seizures daily with our little man. The neurologist also noted no appreciable change in development with Jacob, which always hurts to hear. Unfortunately it is the truth though. He decided to up his med dosages because his spasticity was getting pretty bad again. This could be a reason too I am sure why he might be sleeping better because his body can relax a little better. We do not go back to the neurologist until March now.
One last update is our aquatic therapy. Unfortunately Jacob's therapist decided to leave the practice due to 2 other jobs she already has. Jacob was starting to do pretty well with her and enjoyed his weekly pool time. We were just informed that the new therapist they brought in does not have experience with young pediatrics... GREAT! They are looking to possibly bring someone in on a contracting basis to work with Jacob and another little boy there. This is not a guaranteed agreement yet. If this does not work out then we are back to Akron and back to rushing around with long, drawn out days of appointments. I really hope we can stay close to home because life has been so much more calm and less stressful not running out to Akron every week. The downside of all of this is by the time we figure out what is going to happen, Jacob will be out of therapy for 3 weeks. That is never a good thing.
That's all I have for now...
Tuesday, December 9, 2014
A short hospital stay
This past weekend we ended up taking Jacob to the ER. He has had a horrible choking cough, very irritable, sleeping all day, and ate only 5-6 ounces in a 24 hour period. They ended up admitting him for a little over a day to give him fluids, monitor him, and check his eating. What they concluded is that Jacob probably had some type of viral infection creating all of these issues. The doctors there noted that kids with Jacob's type of condition are more susceptible to respiratory infections and it can hit them harder. It is unclear if this is solely from a virus or if it is also contributed to his neurological issue. The neurologist stated a little while back that at about the 6 or 7 month mark we could start to see some issues arise. Up to this point a baby's brain stem is running many functions of the brain. At around the 6 month mark, their brain starts to take over function. Since it is unclear the exact issues Jacob will face with his brain condition, he could face issues with swallowing, feeding, etc. when the main brain takes over. We are hoping this is not what we are seeing right now.
After about 24 hours of being admitted, they released Jacob and want us just to keep an eye out on his fluid intake. Although he is not eating what he was before, he is eating enough to stay awake longer and smile and giggle. I think he is on the up and up :)
After about 24 hours of being admitted, they released Jacob and want us just to keep an eye out on his fluid intake. Although he is not eating what he was before, he is eating enough to stay awake longer and smile and giggle. I think he is on the up and up :)
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