Teryn had surgery yesterday with the ENT. I was pretty surprised they did it yesterday being a Sunday. Our experience up until now is that most everything stops on the weekend. The pediatric team decided it would be in Teryns best interest to go ahead and remove her tonsils and adenoids since it will cause airway issues for her again if they become swollen. The doctor removed her tonsils and 75% of her adenoids. Only 75% in order to preserve her palate repair that was done this summer. The doctor and I discussed her PE tubes in her ears and decided to go and replace them since they were getting very clogged. This will save her a future surgery with ENT at home.
After the surgery was completed it was a while before they let us join her in recovery. She was having some breathing issues because of all the congestion from her pneumonia. Instead of returning to her room they moved her to ICU to recover. She was doing very well so we only had to stay there a few hours before they let us go back to our regular room. She was in some discomfort and had a low grade fever last night and this morning but the loritab has helped with that. (still seems crazy to give a toddler medicine like that)
Last night she did have several desats ( desaturation of oxygen) but they always came right before a big cough, she had mucus so thick that it wouldn't even fit through the suction catheter.
I also asked the team to look at her gtube site because she has been having some very dark drainage. Surgery team came over and decided it was most likely bleeding from some granulation tissue on the inside of her tube tract. They came by and burned some of it off and so far so good. Hopefully this will keep her skin from being so irritated and the skin breaking down.
She has been up playing and being very silly today. She has been using her bed as a gym. She has been practicing pushing up on her belly with full extension of her arms, she is getting so good at it and so strong, I think her motivation has been to spy on us over her bed rails to make sure more doctors aren't coming in. Now all she has to do is realize she has to push up and pull her knees under at the same time and she will be reedy to crawl. I am ready for the chase!!!!
Hello Family and Friends. The purpose of Teryn's page is two-fold. First, to keep all of you informed with our progress. Secondly as an outlet for all of the emotions, the great ones and the tough ones. Some entries may have more details than you were looking for...sorry...those are there for me. I believe that you are going to see why every struggle in this experience is worth it as you fall in love with our little girl as we have.
Monday, December 5, 2011
Friday, December 2, 2011
Pneumonia, tonsils, and adenoids, oh my!
Just a disclaimer for this post, I am having to post without a computer. I cannot go back wand edit so I hope that auto text doesn't make things too confusing for the read.
So sorry it has been so long since I have posted. I actually have several posts along with photos that are currently hanging in "cyber space" just waiting to be finished. However, this post needed to be done first. We are currently admitted to the hospital once again and here is the somewhat detailed explanation why......
After Teryn's palate repair she amazingly got much better about not occluding (blocking her airway) while she sleeps. I was pleasantly surprised because I was actually prepared for the opposite. Here over the past month it has gotten worse while she sleeps. She sleeps like a grown man with sleep apnea. Snoring, laboring pulling breaths, and then eventually gasping for air. Unfortunately her apnea monitor does not pick this up because it thinks she is breathing since her chest is moving when actually no air is coming through. Because of this she has not been getting very restful sleep despite the fact that she sleeps for 12 hours. She has been congested with a cold and therefor has resorted to strictly mouth breathing. I took her to her pediatrician a few weeks ago and he ruled her congestion as a virus,
As you know she has breath holding spells when she is tired and cranky. She holds her breath until she passes out and then wakes up within a few seconds when involuntary mechanisms kick in. Thanksgiving was a wonderful day for us but apparently a little too stimulating for Teryn. By the time we got home she was overly tired and refused to go to sleep. She instead fussed in her bed with James and I going in several times to change her music and calm her down, I had plans to meet my mom at 11 for black Friday madness, right be fire I was bout to leave james went in and calmed Teryn down again. She started fussing once again and witihin 30 seconds there was silence. I knew this was probably a breath holding spell. I ran into her room and found that is exactly what she was doing. However, she was a not coming out of it. I yelled for James to come in, he turned on the light and I could see that Teryn was trying to come out of the spell but each time she tried to wake up she couldnt catch her breath, at this point her monitor was alarming fir low heart rate. I told James to call 911 and I laid her on the floor to begin CPR. I was absolutely terrified as she had gone blue and was completely limp and non responsive. After 3 rounds of breaths and compressions she finally started waking up. I just held her, cried, and gave praise to God to thank him for not taking my baby and also for not letting me leave the house yet. 20 minutes later and I would not have been home. The paramedics came and we decided to go on to the hospital for chest X-rays. Everything checked out okay so we went home. The following day she had another breath holding spell that required me to give her a couple breaths but then she was okay.
Over the next dew days she just seemed extra tired and wanted to sleep most of the day. Tuesday morning as we getting ready to leave she was vomiting and running a low grade fever. By 10:00 mom called me at work and said that Teryn had been vomitting all morning. She was very listless and having a hard time breathing. what was most concerning was that they had to suction her several times and she never even opened her eyes or resisted. Usually she fights suctioning with a vengeance. I called the office and luckily they were able to get someone to cover my class pretty quickly, I called and arranged for Teryns doc to try and work her in around 1:45. By the time I got to mom and dads her color was not good at all and she was still fairly unresponsive. I decided she needed to go on straight into the er since that is where er would be sent anyway,
As soon as we got to the er they check on oxygen level and it was hanging out in the low to mid 80 s. Not very good. They hooked her up to some oxygen and within 30 minutes she was perking up and moving around. Blood work showed that her CO2 level in her blood was too high. Her pediatrician was not comfortable admitting her to the hospital there since we do not have a PICU. Therefore, we were transferred to a hospital 2 hours away that does have a PICU just in case problems arise. Luckily 2 of Teryns old NICU buddies were able to be her ransomed team for the ride. She slept the entire way.
The X-rays should pneumonia which has now been ruled as aspiration pneumonia meaning she choked on something that went into her lungs, most likely vomit. She continued on antibiotics, oxygen,, and respiratory therapy and was doing better until yesterday when it seemed like she was occluding more and more in her sleep and was having a hard time keeping her sats up even with oxygen. One of the residents luckily had the insight to get an X-ray of her neck. This showed that her tonsils and adenoids are both enlarged quite a bit. We were going to consult with ENT but wanted to wait until after she has a sleep study*. More on that in a. Minute, so, last night was very rough. She occluded pretty much the entire night and needed stimulation to get her to take deep breaths almost every couple minutes. James and I took shifts last night so that one of us was standing at her bed all night to keep her oxygen saturation up.
Today during rounds when they came they saw that her tonsils have now swollen to the point that they are almost touching. So she is breathing very hard to try and pull air through a very narrow opening that is already irregular due to her Pierre Robin Sequence, this explains why she has been occluding so much lately and why she has been so tired. She is working harder and harder and getting less and less oxygen. She has been given steroids today to open her airway some and we are going to go ahead and. Have ENT come today. We will only have temporary solutions until she has her tonsils and adenoids removed.
*the sleep study....Teryns neurologist has been wanting her to have a sleep study for a while. Since their lab is still new it has not been accepted within network for her insurance yet even though the neurologist and his practice are within network. We can pay a cash price and get a little discount but since it hasn't been a necessity we haven't done it yet. Over the past week we keep hearing from many professionals how much she would benefit from oxygen standby or cpap to use at night. Things that require a sleep study to prove the need because you know insurance companies can't just take the word of a doctor who knows your child and their needs. The social worker here has been exploring options and has found that in network sleep study providers will not accept children until they are 2 or 5 unless we travel down south. I spoke with the insurance company and Teryn has met all out of pocket deductibles for the year and therefore the ins company would reimburse 100 percent of the allowable amount for the sleep study, good right? No! I called to schedule the study asap before the calendar year starts over. They have had trouble getting any reimbursement from the ins company because they deny any payment saying it is an non allowable procedure...even though it is allowable in network. Whatever, we have to do what we have to do to get Teryn what she needs so I went ahead and made the appointment, we will work out a payment plan with them.
So here we are again wondering why our precious baby has to continually go through what she does. I cried myself to sleep last night while pouring my heart out to God. I wasn't angry or bitter even though I have been there many times if we are honest. Instead I was humbled and had to apologize for not coming to my heavenly father sooner. Who am I to think that mine or a doctors intellect can heal my baby. Where do we get it in the first place? From Him. He is our ultimate healer and physician. I apologized to my father for spending waaaaay more time explaining my worries and talking over plans with earthly doctors and neglecting to time I talk it over with the one who truly holds all the answers.
I may never understand the full extent of Gods plan or why all this happens. BUT I do know that I serve a God who loves me and loves Teryn and has mighty plans for us both, my job is to follow in faith and ask for guidance along the way, not so easy for someone who likes things planned out and organized. If everything was easy and predictable how many of you would still be following our precious girl on this blog? How may people would truly be pouring their heart out to God in petition for a little girl they have never even met? How many people who have never prayed are saying Teryns name in their first prayers to the Lord? (yes that is happening) you see, she is already fulfilling part of her purpose in life. Part of it is for you. My prayer is that you will turn your own petitions to the Lord today. You nor I can fix everything on our own dear friend.
So sorry it has been so long since I have posted. I actually have several posts along with photos that are currently hanging in "cyber space" just waiting to be finished. However, this post needed to be done first. We are currently admitted to the hospital once again and here is the somewhat detailed explanation why......
After Teryn's palate repair she amazingly got much better about not occluding (blocking her airway) while she sleeps. I was pleasantly surprised because I was actually prepared for the opposite. Here over the past month it has gotten worse while she sleeps. She sleeps like a grown man with sleep apnea. Snoring, laboring pulling breaths, and then eventually gasping for air. Unfortunately her apnea monitor does not pick this up because it thinks she is breathing since her chest is moving when actually no air is coming through. Because of this she has not been getting very restful sleep despite the fact that she sleeps for 12 hours. She has been congested with a cold and therefor has resorted to strictly mouth breathing. I took her to her pediatrician a few weeks ago and he ruled her congestion as a virus,
As you know she has breath holding spells when she is tired and cranky. She holds her breath until she passes out and then wakes up within a few seconds when involuntary mechanisms kick in. Thanksgiving was a wonderful day for us but apparently a little too stimulating for Teryn. By the time we got home she was overly tired and refused to go to sleep. She instead fussed in her bed with James and I going in several times to change her music and calm her down, I had plans to meet my mom at 11 for black Friday madness, right be fire I was bout to leave james went in and calmed Teryn down again. She started fussing once again and witihin 30 seconds there was silence. I knew this was probably a breath holding spell. I ran into her room and found that is exactly what she was doing. However, she was a not coming out of it. I yelled for James to come in, he turned on the light and I could see that Teryn was trying to come out of the spell but each time she tried to wake up she couldnt catch her breath, at this point her monitor was alarming fir low heart rate. I told James to call 911 and I laid her on the floor to begin CPR. I was absolutely terrified as she had gone blue and was completely limp and non responsive. After 3 rounds of breaths and compressions she finally started waking up. I just held her, cried, and gave praise to God to thank him for not taking my baby and also for not letting me leave the house yet. 20 minutes later and I would not have been home. The paramedics came and we decided to go on to the hospital for chest X-rays. Everything checked out okay so we went home. The following day she had another breath holding spell that required me to give her a couple breaths but then she was okay.
Over the next dew days she just seemed extra tired and wanted to sleep most of the day. Tuesday morning as we getting ready to leave she was vomiting and running a low grade fever. By 10:00 mom called me at work and said that Teryn had been vomitting all morning. She was very listless and having a hard time breathing. what was most concerning was that they had to suction her several times and she never even opened her eyes or resisted. Usually she fights suctioning with a vengeance. I called the office and luckily they were able to get someone to cover my class pretty quickly, I called and arranged for Teryns doc to try and work her in around 1:45. By the time I got to mom and dads her color was not good at all and she was still fairly unresponsive. I decided she needed to go on straight into the er since that is where er would be sent anyway,
As soon as we got to the er they check on oxygen level and it was hanging out in the low to mid 80 s. Not very good. They hooked her up to some oxygen and within 30 minutes she was perking up and moving around. Blood work showed that her CO2 level in her blood was too high. Her pediatrician was not comfortable admitting her to the hospital there since we do not have a PICU. Therefore, we were transferred to a hospital 2 hours away that does have a PICU just in case problems arise. Luckily 2 of Teryns old NICU buddies were able to be her ransomed team for the ride. She slept the entire way.
The X-rays should pneumonia which has now been ruled as aspiration pneumonia meaning she choked on something that went into her lungs, most likely vomit. She continued on antibiotics, oxygen,, and respiratory therapy and was doing better until yesterday when it seemed like she was occluding more and more in her sleep and was having a hard time keeping her sats up even with oxygen. One of the residents luckily had the insight to get an X-ray of her neck. This showed that her tonsils and adenoids are both enlarged quite a bit. We were going to consult with ENT but wanted to wait until after she has a sleep study*. More on that in a. Minute, so, last night was very rough. She occluded pretty much the entire night and needed stimulation to get her to take deep breaths almost every couple minutes. James and I took shifts last night so that one of us was standing at her bed all night to keep her oxygen saturation up.
Today during rounds when they came they saw that her tonsils have now swollen to the point that they are almost touching. So she is breathing very hard to try and pull air through a very narrow opening that is already irregular due to her Pierre Robin Sequence, this explains why she has been occluding so much lately and why she has been so tired. She is working harder and harder and getting less and less oxygen. She has been given steroids today to open her airway some and we are going to go ahead and. Have ENT come today. We will only have temporary solutions until she has her tonsils and adenoids removed.
*the sleep study....Teryns neurologist has been wanting her to have a sleep study for a while. Since their lab is still new it has not been accepted within network for her insurance yet even though the neurologist and his practice are within network. We can pay a cash price and get a little discount but since it hasn't been a necessity we haven't done it yet. Over the past week we keep hearing from many professionals how much she would benefit from oxygen standby or cpap to use at night. Things that require a sleep study to prove the need because you know insurance companies can't just take the word of a doctor who knows your child and their needs. The social worker here has been exploring options and has found that in network sleep study providers will not accept children until they are 2 or 5 unless we travel down south. I spoke with the insurance company and Teryn has met all out of pocket deductibles for the year and therefore the ins company would reimburse 100 percent of the allowable amount for the sleep study, good right? No! I called to schedule the study asap before the calendar year starts over. They have had trouble getting any reimbursement from the ins company because they deny any payment saying it is an non allowable procedure...even though it is allowable in network. Whatever, we have to do what we have to do to get Teryn what she needs so I went ahead and made the appointment, we will work out a payment plan with them.
So here we are again wondering why our precious baby has to continually go through what she does. I cried myself to sleep last night while pouring my heart out to God. I wasn't angry or bitter even though I have been there many times if we are honest. Instead I was humbled and had to apologize for not coming to my heavenly father sooner. Who am I to think that mine or a doctors intellect can heal my baby. Where do we get it in the first place? From Him. He is our ultimate healer and physician. I apologized to my father for spending waaaaay more time explaining my worries and talking over plans with earthly doctors and neglecting to time I talk it over with the one who truly holds all the answers.
I may never understand the full extent of Gods plan or why all this happens. BUT I do know that I serve a God who loves me and loves Teryn and has mighty plans for us both, my job is to follow in faith and ask for guidance along the way, not so easy for someone who likes things planned out and organized. If everything was easy and predictable how many of you would still be following our precious girl on this blog? How may people would truly be pouring their heart out to God in petition for a little girl they have never even met? How many people who have never prayed are saying Teryns name in their first prayers to the Lord? (yes that is happening) you see, she is already fulfilling part of her purpose in life. Part of it is for you. My prayer is that you will turn your own petitions to the Lord today. You nor I can fix everything on our own dear friend.