What can I say about tonsils? To start- thank goodness a person is only born with one set to ever need to be removed!
Last Wednesday, Hannah had her tonsils removed and botox injections into her two main salivary glands. This turned out to be the worst day in the hospital we've ever had. The tonsillectomy was fine, but when they were injecting the botox, a minimal amount leaked into the surrounding area. Unfortunately, we had to wait four days to find out whether or not there would be damage to the nerve that controls the lower lip on her right side. Thankfully, we've haven't seen any damage, and that means that the tissue immediately surrounding the leak absorbed enough that the botox did not touch the nerve.
After the surgery, Hannah's mouth started to swell. It was so swollen that steroid breathing treatments and steroid injections wouldn't work. Doctors discussed needing to put a breathing tube in, but with having just performed surgery on her throat, the team decided to place a tube down her nose that would curve forward and push down her tongue down to allow air flow. This helped, but wasn't quite enough. So, Hannah was also placed in an oxygen tent in her crib. Overnight was rough as well, with Hannah's oxygen levels dipping into the seventies and eighties, and little sleep for her with trying to regulate pain management.
Our last obstacle was constipation. Between a mixed up food schedule, surgery meds, and pain meds, Hannah's plumbing was just not moving. I've never been happier to clean up an up-the-back, all-over-the-crib blow out. Who knew the joy poop could bring in parenting.
Finally though, after LOTS of prayers (many from our prayer warriors- THANKS!) and a good poop, we are getting back on track. We have the best daycare lady, shout out to Betty, who always takes our Han even when her life would be much more peaceful without her some days.
Our next month will consist of- knock on wood- NO TRIPS TO THE HOSPITAL! We will spend the entire month of November in preparation to Thanksgiving, remembering how grateful we are for our family and friends who support us each step of this crazy life. We are especially excited for Justin to come home safe and sound! Can't come soon enough...
Monday, October 21, 2013
Thursday, September 12, 2013
09.12.13
Our Mayo update:
Glad to say that we are back home and only have one appointment left for this recent round of tests- a hearing test. We opted to have this done at Grant Wood to take advantage of their free hearing screens.
Preface: Over the last week, I have (sort of) successfully switched Hannah to a blenderized diet. She still has to have a bit of formula overnight to make up for calorie needs, but as I am getting a better handle on making our own blenderized food and increasing calories without increasing volume, we aren't too far off goal. Yes, it takes a lot more time than mixing formula, but is so worth it. Hannah has not down-cycled for a week now. That is huge progress. She is more happy, she's laughing, more active and she started with 'ba' and 'da' noises! We are thrilled, and very thankful to have this happy girl back.
As for Mayo test results...
Blood tests for the metabolic panel will not be back for a few days/weeks. These would show if a metabolic problem could be to blame for this down-cyclic business (I'm hoping not as there may not be a 'fix' for a deeper metabolic issue).
The GI team seems relatively happy with the blenderized diet results so far. They have a very relaxed approach to what I feed her so long as she continues to gain weight.
ENT, pulmonology and the sleep team have joined forces as of late to help with Hannah's lung issues. The results of her sedation this week showed that there is still lung damage happening. Weak muscles in the throat and airways can still be seen. The results of her sleep study showed that she is having apneas that are 4-6 seconds long. ENT still believes that Hannah's swallow is safe and the swelling and aspiration in Hannah's airways is not coming from swallowing. All together, that means that the most likely scenario is that while Hannah is sleeping, saliva pools in the back of her throat where muscles are weak. She will have an apnea for about 5 seconds, and then take a deep breath in, sucking all of the pooled saliva right down into her airways and lungs. There isn't really a good fix for this, but the damage will only continue to get worse if we don't do something. Options on the table include botox injections to the salivary glands, a CPAP machine, various medicines and lastly, a tracheostomy. Obviously, it will take a lot of convincing for me to agree to the last one.
Finally, the hearing screening today will be a good indicator of whether or not the fluid in Hannah's ears is causing problems, or just draining very slowly and is nothing to worry about.
Between this new diet and needing to make a few decisions for lung treatments, we've got a bit on our hands, but it sure seems more do-able with this happy girl we've gotten back. She is such a little blessing! Now, to get her to say 'ma, ma, ma'...
Glad to say that we are back home and only have one appointment left for this recent round of tests- a hearing test. We opted to have this done at Grant Wood to take advantage of their free hearing screens.
Preface: Over the last week, I have (sort of) successfully switched Hannah to a blenderized diet. She still has to have a bit of formula overnight to make up for calorie needs, but as I am getting a better handle on making our own blenderized food and increasing calories without increasing volume, we aren't too far off goal. Yes, it takes a lot more time than mixing formula, but is so worth it. Hannah has not down-cycled for a week now. That is huge progress. She is more happy, she's laughing, more active and she started with 'ba' and 'da' noises! We are thrilled, and very thankful to have this happy girl back.
As for Mayo test results...
Blood tests for the metabolic panel will not be back for a few days/weeks. These would show if a metabolic problem could be to blame for this down-cyclic business (I'm hoping not as there may not be a 'fix' for a deeper metabolic issue).
The GI team seems relatively happy with the blenderized diet results so far. They have a very relaxed approach to what I feed her so long as she continues to gain weight.
ENT, pulmonology and the sleep team have joined forces as of late to help with Hannah's lung issues. The results of her sedation this week showed that there is still lung damage happening. Weak muscles in the throat and airways can still be seen. The results of her sleep study showed that she is having apneas that are 4-6 seconds long. ENT still believes that Hannah's swallow is safe and the swelling and aspiration in Hannah's airways is not coming from swallowing. All together, that means that the most likely scenario is that while Hannah is sleeping, saliva pools in the back of her throat where muscles are weak. She will have an apnea for about 5 seconds, and then take a deep breath in, sucking all of the pooled saliva right down into her airways and lungs. There isn't really a good fix for this, but the damage will only continue to get worse if we don't do something. Options on the table include botox injections to the salivary glands, a CPAP machine, various medicines and lastly, a tracheostomy. Obviously, it will take a lot of convincing for me to agree to the last one.
Finally, the hearing screening today will be a good indicator of whether or not the fluid in Hannah's ears is causing problems, or just draining very slowly and is nothing to worry about.
Between this new diet and needing to make a few decisions for lung treatments, we've got a bit on our hands, but it sure seems more do-able with this happy girl we've gotten back. She is such a little blessing! Now, to get her to say 'ma, ma, ma'...
Thursday, September 5, 2013
09.05.13
Is it really September already!?
Once again, I've fallen behind on the updates, so here goes with a brief version of the last 2+ months...
Hannah is proving to be the teacher of all things 'patience'. She really has had a rough couple of months, beginning with a diagnosis of (and completely unrelated to her genetic conditions) cyclic vomiting syndrome. After about half of the summer in the hospital, doctors labeled Hannah's sleeping/retching/overall miserableness on cyclic vomiting- which basically meant that there was nothing we could do about it. When I asked about ways to treat this, the answer was to try an allergy med that is often used in conjunction with treating migraines (as cyclic vomiting is a migraine variant). When I asked about a timeline for the length of time we might be dealing with this, the answer was, 'Well it could last two years, it could last seven years.' Because of the risk of Hannah increasing the damage to her lung with vomiting, we decided to switch to a gj-tube. This tube allows us to completely bypass Hannah's belly and feed directly into her intestine.
At first, we thought, 'Ok. We can deal with this.' Initially, Hannah was down-cycling on schedule every 2- 2.5 weeks until July when everything got messy. Since then, we've not had much 'cycle' as to when Hannah will be good or bad, or a sign that bad is coming. And that means more tests.
Last week, Hannah and I made a day trip to Mayo for an MRI. The team did not want to wait for our routine follow-ups to rule out brain swelling or fluid build up that could have caused the most recent problems. Good news. They didn't find anything of the sort.
We continue to try different things, changing feeding times, using the j-tube side, a different allergy med, and most of all- lots of good prayers from our support system. This coming week we head back to Mayo for more tests and -hopefully- an answer or two.
For me, Hannah not feeling well has been the most trying piece we've dealt with. But, it just goes to show, that the Man upstairs is listening. Each time I have a down day, God steps in by using those around me to say 'Just hang in there.' I am continually blessed with a note from an old teacher reminding me to look for God's small miracles, by a card from a prayer group that reads, 'We know what you are going through,' and by the song on the radio that says I don't have to take this journey alone. I should not be surprised by this reassurance, but I am always in awe of His presence when I seem to need it most.
One last thing. A few weeks ago, my Grandpa passed away. This man was amazing. I wish that words could explain the love he had for his grandchildren and great-grandchildren. When I reflect on memories, I keep circling back to a picture of grandpa holding Hannah and crying over her. If you wonder what selfless love looks like, you need only to think of that image.
Once again, I've fallen behind on the updates, so here goes with a brief version of the last 2+ months...
Hannah is proving to be the teacher of all things 'patience'. She really has had a rough couple of months, beginning with a diagnosis of (and completely unrelated to her genetic conditions) cyclic vomiting syndrome. After about half of the summer in the hospital, doctors labeled Hannah's sleeping/retching/overall miserableness on cyclic vomiting- which basically meant that there was nothing we could do about it. When I asked about ways to treat this, the answer was to try an allergy med that is often used in conjunction with treating migraines (as cyclic vomiting is a migraine variant). When I asked about a timeline for the length of time we might be dealing with this, the answer was, 'Well it could last two years, it could last seven years.' Because of the risk of Hannah increasing the damage to her lung with vomiting, we decided to switch to a gj-tube. This tube allows us to completely bypass Hannah's belly and feed directly into her intestine.
At first, we thought, 'Ok. We can deal with this.' Initially, Hannah was down-cycling on schedule every 2- 2.5 weeks until July when everything got messy. Since then, we've not had much 'cycle' as to when Hannah will be good or bad, or a sign that bad is coming. And that means more tests.
Last week, Hannah and I made a day trip to Mayo for an MRI. The team did not want to wait for our routine follow-ups to rule out brain swelling or fluid build up that could have caused the most recent problems. Good news. They didn't find anything of the sort.
We continue to try different things, changing feeding times, using the j-tube side, a different allergy med, and most of all- lots of good prayers from our support system. This coming week we head back to Mayo for more tests and -hopefully- an answer or two.
For me, Hannah not feeling well has been the most trying piece we've dealt with. But, it just goes to show, that the Man upstairs is listening. Each time I have a down day, God steps in by using those around me to say 'Just hang in there.' I am continually blessed with a note from an old teacher reminding me to look for God's small miracles, by a card from a prayer group that reads, 'We know what you are going through,' and by the song on the radio that says I don't have to take this journey alone. I should not be surprised by this reassurance, but I am always in awe of His presence when I seem to need it most.
One last thing. A few weeks ago, my Grandpa passed away. This man was amazing. I wish that words could explain the love he had for his grandchildren and great-grandchildren. When I reflect on memories, I keep circling back to a picture of grandpa holding Hannah and crying over her. If you wonder what selfless love looks like, you need only to think of that image.
Friday, June 7, 2013
06.07.13
What a roller coaster the last couple of months have been!
April was our best month of therapy yet! Hannah is getting stronger and more vocal- she has open happy laughs that just melt my heart:)
May brought a bit of frustration for this mommy. An ER trip at the end of April revealed a wicked case of pneumonia- no fever, no fussing, just a sleepy little girl who didn't want to open her eyes for four days. Unfortunately, when Hannah sleeps like this, it's almost that her body slows down in all ways. She's lethargic to the point of not being able to hold up her head and even her food processing slows down, so much that she ends up not getting enough to eat. After a round of antibiotic for the pneumonia, Hannah's lungs were still a little crackly, so the doctor decided on a second round to clear everything out. Hannah's belly disagreed with that decision and as protest, she shut down again. After a second trip to the ER, we discontinued the antibiotic. Finally, things improved and we could get back on track with therapy and getting stronger!
Until Hannah got another cold. Her lack of ability to swallow secretions caused Hannah to choke and gag and do something that looked a lot like small seizures. Trip three to the ER was quick, but only because they sent us on to Mayo. Three days later, it seemed that what could have been seizures were probably (and hopefully) not neurological. Once Hannah was closer to normal, we got to go home just in time for my last day at school! And, then trip four to the ER. Hannah didn't feel good and as usual, decided to go to sleep. After three days, she was too dehydrated to stay at home and we took her back in for what ended up a four-day hospital stay. We got home yesterday, and Hannah smiled, laughed, and made lots of happy noises all night to let us know she was happy to be back home.
Yes, it's been a bit stressful in our house lately, but we've also got a lot to celebrate:
-Will is officially graduated! He's done, done, done with school! He's VERY happy.
-At the banquet for his graduation, Will was awarded with runner-up apprentice of the year! We are so proud of him!
-Eli is super excited about spending some time with Hannah and I this summer. Story time, walks, a blow-up pool, and loving on Hannah are all on his horizon. His favorite word is 'no'.
-Hannah got the go-ahead to start trying oral feeding. It is slow, but it's a start, and we will get there!
-I've been able to connect with another mom of a CDC daughter. Olivia is a beautiful little girl that inspires me and what we have to look forward to with Hannah. Her mom, Tiffany, is fantastic as well, and has been a great support in honesty and answering questions that I've had. What a blessing to have found her and her family's story!
-We have summer ahead of us, beginning with a trip to Milwaukee for a baseball game, a trip to the zoo, and some much needed relaxation at the hotel pool!
-Best of all: I slept in my own bed last night...Take that hospital window bench! :)
What a roller coaster the last couple of months have been!
April was our best month of therapy yet! Hannah is getting stronger and more vocal- she has open happy laughs that just melt my heart:)
May brought a bit of frustration for this mommy. An ER trip at the end of April revealed a wicked case of pneumonia- no fever, no fussing, just a sleepy little girl who didn't want to open her eyes for four days. Unfortunately, when Hannah sleeps like this, it's almost that her body slows down in all ways. She's lethargic to the point of not being able to hold up her head and even her food processing slows down, so much that she ends up not getting enough to eat. After a round of antibiotic for the pneumonia, Hannah's lungs were still a little crackly, so the doctor decided on a second round to clear everything out. Hannah's belly disagreed with that decision and as protest, she shut down again. After a second trip to the ER, we discontinued the antibiotic. Finally, things improved and we could get back on track with therapy and getting stronger!
Until Hannah got another cold. Her lack of ability to swallow secretions caused Hannah to choke and gag and do something that looked a lot like small seizures. Trip three to the ER was quick, but only because they sent us on to Mayo. Three days later, it seemed that what could have been seizures were probably (and hopefully) not neurological. Once Hannah was closer to normal, we got to go home just in time for my last day at school! And, then trip four to the ER. Hannah didn't feel good and as usual, decided to go to sleep. After three days, she was too dehydrated to stay at home and we took her back in for what ended up a four-day hospital stay. We got home yesterday, and Hannah smiled, laughed, and made lots of happy noises all night to let us know she was happy to be back home.
Yes, it's been a bit stressful in our house lately, but we've also got a lot to celebrate:
-Will is officially graduated! He's done, done, done with school! He's VERY happy.
-At the banquet for his graduation, Will was awarded with runner-up apprentice of the year! We are so proud of him!
-Eli is super excited about spending some time with Hannah and I this summer. Story time, walks, a blow-up pool, and loving on Hannah are all on his horizon. His favorite word is 'no'.
-Hannah got the go-ahead to start trying oral feeding. It is slow, but it's a start, and we will get there!
-I've been able to connect with another mom of a CDC daughter. Olivia is a beautiful little girl that inspires me and what we have to look forward to with Hannah. Her mom, Tiffany, is fantastic as well, and has been a great support in honesty and answering questions that I've had. What a blessing to have found her and her family's story!
-We have summer ahead of us, beginning with a trip to Milwaukee for a baseball game, a trip to the zoo, and some much needed relaxation at the hotel pool!
-Best of all: I slept in my own bed last night...Take that hospital window bench! :)
Saturday, April 13, 2013
04.13.13
We are so blessed! What an incredible outpouring of love at Hannah's benefit last night!
I find myself beginning to say thank you and realizing over and over again that I have no words to express the thanks that we have. (Will would argue that this is a miracle as he thinks I ALWAYS have words:) We have been humbled. We have been blessed. There truly are no words to explain just how thankful we are.
In addition to the financial support, we want to say how very much we appreciate the thoughts, prayers, anonymous notes of support, and encouragement that we've been shown in the past few months. Thank you.
When we had Hannah, I planned out a life in my head. A life of learning to crawl, walk, talk, school, rainy soccer tournaments, hoping she wouldn't really like soccer... I pictured awkward middle school growth spurts, the first broken heart, graduation, the man that would never break her heart... I hoped for normal, without ever realizing that there would be an alternative.
Now I cannot imagine anything other than what we have.
Each day I better understand the gift that God has given us. Hannah is exactly who she was meant to be. God does not make mistakes- I believe that Hannah was sent to inspire His love. I saw it last night, I see it in Hannah each day. She brings out the best in people. Every person who was able to attend the benefit can attest to the love and generosity that brought the community together over a little girl most have never met. What greater love is there- than to love your neighbors?
My heart overflows with gratitude for your kindness and love. We love you all. Thank you.
I find myself beginning to say thank you and realizing over and over again that I have no words to express the thanks that we have. (Will would argue that this is a miracle as he thinks I ALWAYS have words:) We have been humbled. We have been blessed. There truly are no words to explain just how thankful we are.
In addition to the financial support, we want to say how very much we appreciate the thoughts, prayers, anonymous notes of support, and encouragement that we've been shown in the past few months. Thank you.
When we had Hannah, I planned out a life in my head. A life of learning to crawl, walk, talk, school, rainy soccer tournaments, hoping she wouldn't really like soccer... I pictured awkward middle school growth spurts, the first broken heart, graduation, the man that would never break her heart... I hoped for normal, without ever realizing that there would be an alternative.
Now I cannot imagine anything other than what we have.
Each day I better understand the gift that God has given us. Hannah is exactly who she was meant to be. God does not make mistakes- I believe that Hannah was sent to inspire His love. I saw it last night, I see it in Hannah each day. She brings out the best in people. Every person who was able to attend the benefit can attest to the love and generosity that brought the community together over a little girl most have never met. What greater love is there- than to love your neighbors?
My heart overflows with gratitude for your kindness and love. We love you all. Thank you.
Tuesday, March 12, 2013
03.12.13
Short Update:
Hannah and I made the trek to Mayo early on Sunday due to the storm headed that way. It was a good choice, as Rochester got 10.5-12 inches overnight. Hannah's post-op check went well, I will be able to change the g-tube at home from now on. Her white blood count is still too high, but the surgeon believes it is related to inflammation in her belly rather than an infection. No more meds for the infection, but we need to keep a close eye and watch for fevers and pain, etc.
Hannah is doing well with her feeds and we are about ready to switch over to just bolus feeds! Soon we will sleep all night long!! YAY!
Hannah and I made the trek to Mayo early on Sunday due to the storm headed that way. It was a good choice, as Rochester got 10.5-12 inches overnight. Hannah's post-op check went well, I will be able to change the g-tube at home from now on. Her white blood count is still too high, but the surgeon believes it is related to inflammation in her belly rather than an infection. No more meds for the infection, but we need to keep a close eye and watch for fevers and pain, etc.
Hannah is doing well with her feeds and we are about ready to switch over to just bolus feeds! Soon we will sleep all night long!! YAY!
Tuesday, March 5, 2013
03.05.13
Thanks to a snow day, I now have some time to update our progress since settling back in at home.
Thanks to the feeding pump, Hannah is getting enough to eat each day, though it does mean having to run a slow flow overnight. I'm looking forward to working up to eating enough during the day in order to cut out those night feedings (and maybe get a little more sleep in this house?). We are still cautiously increasing daytime feeds to meet our goal.
The stomach bug that has hit hard this winter finally made its way to our house. Thankfully, Will and I escaped, but let's just say it was a 'poopy' last week around here:)
We head back to Mayo on the 11th for a post-op check and another blood draw- as of Feb. 28th, Hannah's white count was still high at 16. In the words of the surgical doctor team, 'We sure aren't moving mountains, are we?'. The lead surgery doctor did say that as long as it's slow and steady, we shouldn't have to make alternative antibiotic plans.
Now that we are home, I find myself thinking often of our friend Riley, who is still in the therapy unit at Mayo. She is an inspiration to me and I pray to keep the courage that she has. The only plus to making a trek back to Rochester this month is the hope of getting to see Riley! Riley brings out the best in Hannah- she's always willing to share a smile with her:)
The biggest news since we've been back is that my wonderful team of co-workers at Mount Vernon are planning a benefit for Hannah. I know I've said it before, but I'm blessed to work in an environment that treasures my children as their own- people with such big hearts and love for our family. The benefit will be held on April 12th, from 5-8pm. There will be dinner, a family dance (I'm so excited to see my students boogie down!), a photo booth, and a silent auction.
Thanks to the feeding pump, Hannah is getting enough to eat each day, though it does mean having to run a slow flow overnight. I'm looking forward to working up to eating enough during the day in order to cut out those night feedings (and maybe get a little more sleep in this house?). We are still cautiously increasing daytime feeds to meet our goal.
The stomach bug that has hit hard this winter finally made its way to our house. Thankfully, Will and I escaped, but let's just say it was a 'poopy' last week around here:)
We head back to Mayo on the 11th for a post-op check and another blood draw- as of Feb. 28th, Hannah's white count was still high at 16. In the words of the surgical doctor team, 'We sure aren't moving mountains, are we?'. The lead surgery doctor did say that as long as it's slow and steady, we shouldn't have to make alternative antibiotic plans.
Now that we are home, I find myself thinking often of our friend Riley, who is still in the therapy unit at Mayo. She is an inspiration to me and I pray to keep the courage that she has. The only plus to making a trek back to Rochester this month is the hope of getting to see Riley! Riley brings out the best in Hannah- she's always willing to share a smile with her:)
The biggest news since we've been back is that my wonderful team of co-workers at Mount Vernon are planning a benefit for Hannah. I know I've said it before, but I'm blessed to work in an environment that treasures my children as their own- people with such big hearts and love for our family. The benefit will be held on April 12th, from 5-8pm. There will be dinner, a family dance (I'm so excited to see my students boogie down!), a photo booth, and a silent auction.
Thursday, February 21, 2013
02.21.13
YAY! HOME! Hannah is settled in and doing well. Her white count is still too high, but oral antibiotics should take care of the infection that's left. She's on a continuous feed for now and we will slowly ween her into bolus feeds.
We are home just in time to be snowed in:) After being off work for two weeks, I've never wanted a snow day so badly. I'm after cuddle time with both of my babies.
We are home just in time to be snowed in:) After being off work for two weeks, I've never wanted a snow day so badly. I'm after cuddle time with both of my babies.
Tuesday, February 19, 2013
02.19.13
The plan- if weather allows- is still to make it home on Thursday. Hannah is about 8 hours into a slow continuous feed, and so far, so good. We will continue slowly increasing overnight and be at goal for a continuous feed by morning. While this is far from goal for a normal bolus feed, it is a step in the right direction, and it's enough for us to head home.
Tomorrow will be another blood test for a hopefully lower white count and then a probable switch from IV antibiotics to oral antibiotics. If all falls into place, the residents will prepare the discharge paperwork tomorrow night, have it ready for quick overnight updates from Wednesday into Thursday, and send us packing early Thursday.
Now, everyone just cross your fingers that the storm holds out for this mommy to take her baby home!
Tomorrow will be another blood test for a hopefully lower white count and then a probable switch from IV antibiotics to oral antibiotics. If all falls into place, the residents will prepare the discharge paperwork tomorrow night, have it ready for quick overnight updates from Wednesday into Thursday, and send us packing early Thursday.
Now, everyone just cross your fingers that the storm holds out for this mommy to take her baby home!
Monday, February 18, 2013
02.18.13
Good news! No large abscess was found, and Hannah handled the contrast well. Hopes for starting a very slow flow feed tomorrow afternoon. If she can handle it, we might again escape a PICC line and even transition to oral antibiotics. One step closer to home!
I was very lucky to run into a dad that we met from the Ronald McDonald House on our last visit. It's encouraging to hear of other struggles and now that we aren't alone in what sometimes seems an impossible journey. I am blessed to know Rylee and her dad, Larry, and be inspired by their story and motivated by Rylee's beautiful smiles. They are a true testament to seeing God work through people.
I was very lucky to run into a dad that we met from the Ronald McDonald House on our last visit. It's encouraging to hear of other struggles and now that we aren't alone in what sometimes seems an impossible journey. I am blessed to know Rylee and her dad, Larry, and be inspired by their story and motivated by Rylee's beautiful smiles. They are a true testament to seeing God work through people.
02.18.13
Early this morning Hannah was taken down for a picture of her intestines. From what I gather, the picture looks a lot better than it did on Saturday night. However, she's still draining from her stomach and very uncomfortable when the G-tube is clamped shut.
The doctor in charge of Hannah's team was in this morning to discuss the plan. I asked if these two issues- not processing food and her continued high white count (it is still double what it should be after labs this morning), are related. He thinks that they are directly related, and wants to take another CT of Hannah today. We will inject contrast into Hannah's G-tube so that the CT will show what it needs to. The problem here is that Hannah may not be able to handle that much contrast being poured into her belly. There is a back up option using ultrasound, but it wouldn't not provide a picture quite as accurate as is needed.
Once we can see if there is an abscess hiding somewhere, they may be able to remove it via needle, and not have to perform surgery. Until Hannah can eat though, we are back to inserting a PICC line. Probably tomorrow, we will have that placed and then she can lose the other IV that has been providing her nutrition since Saturday. It is not ideal, but if there is an abscess, if they can remove it, if Hannah can handle feeds over the next few days, and if I can administer IV antibiotics through her PICC line, we may be able to go home later this weekend. I think that it's the week of 'ifs'...
The doctor in charge of Hannah's team was in this morning to discuss the plan. I asked if these two issues- not processing food and her continued high white count (it is still double what it should be after labs this morning), are related. He thinks that they are directly related, and wants to take another CT of Hannah today. We will inject contrast into Hannah's G-tube so that the CT will show what it needs to. The problem here is that Hannah may not be able to handle that much contrast being poured into her belly. There is a back up option using ultrasound, but it wouldn't not provide a picture quite as accurate as is needed.
Once we can see if there is an abscess hiding somewhere, they may be able to remove it via needle, and not have to perform surgery. Until Hannah can eat though, we are back to inserting a PICC line. Probably tomorrow, we will have that placed and then she can lose the other IV that has been providing her nutrition since Saturday. It is not ideal, but if there is an abscess, if they can remove it, if Hannah can handle feeds over the next few days, and if I can administer IV antibiotics through her PICC line, we may be able to go home later this weekend. I think that it's the week of 'ifs'...
Sunday, February 17, 2013
02.17.13
We will be here a while. Unfortunately, while the spleen infection is out, we are now facing a bowel obstruction. On Friday night, Hannah began to be very uncomfortable. Her belly started to swell and wouldn't go down. By Saturday afternoon, we pulled 450 ml of fluid from inside Hannah's stomach. The good news is that it was not leaking to anywhere else in her body.
The worst case scenario is that we are looking at another surgery. Tomorrow morning there will be another blood draw to check the white count but we will also have a picture taken to view Hannah's intestinal tract and see where there is any movement happening. Right now, Hannah's tube is connected to vent constantly. Two attempts have been made to close the vent and see how she handles pressure build up- both did not last long. She gets pretty uncomfortable pretty fast. Until tomorrow, the tube will remain vented, the hope being that Hannah's bowels wake up and start to move the blockage through, or that the venting helps release the blockage. Either of these would be a better option that surgery.
There is no real reason for the blockage, but until Hannah's bowels start to move again, she can't eat regular food. Right now she's on IV fluids again and we are hoping that the vein for this IV continues to hold out. We are running out of viable veins for nutrition.
Right now, Eli is cuddling with Hannah in her crib and she is grabbing his arm and smiling. She's awake and flapping her arms and legs- let's get the poop flowing!
The worst case scenario is that we are looking at another surgery. Tomorrow morning there will be another blood draw to check the white count but we will also have a picture taken to view Hannah's intestinal tract and see where there is any movement happening. Right now, Hannah's tube is connected to vent constantly. Two attempts have been made to close the vent and see how she handles pressure build up- both did not last long. She gets pretty uncomfortable pretty fast. Until tomorrow, the tube will remain vented, the hope being that Hannah's bowels wake up and start to move the blockage through, or that the venting helps release the blockage. Either of these would be a better option that surgery.
There is no real reason for the blockage, but until Hannah's bowels start to move again, she can't eat regular food. Right now she's on IV fluids again and we are hoping that the vein for this IV continues to hold out. We are running out of viable veins for nutrition.
Right now, Eli is cuddling with Hannah in her crib and she is grabbing his arm and smiling. She's awake and flapping her arms and legs- let's get the poop flowing!
Thursday, February 14, 2013
02.14.13
-hannah's white counts came back even higher-now they are more than double what they should be.
-she ate well today and they ordered a feeding pump to our house for when we get back home.
-we were rushed into a CT scan tonight before everyone took off for the evening to try and figure out this nasty blood count.
-hannah does not have an abscess or fluid sac causing infection, rather a spleen infection.
-shouldn't require surgery, but doctors will conference in the morning to decide on plan of action from here. IV meds vs. oral (g-tube) and when we get to go home.
-hannah's snoring away and i'm not far behind her...
-she ate well today and they ordered a feeding pump to our house for when we get back home.
-we were rushed into a CT scan tonight before everyone took off for the evening to try and figure out this nasty blood count.
-hannah does not have an abscess or fluid sac causing infection, rather a spleen infection.
-shouldn't require surgery, but doctors will conference in the morning to decide on plan of action from here. IV meds vs. oral (g-tube) and when we get to go home.
-hannah's snoring away and i'm not far behind her...
02.14.13
Today the doctor sent Hannah's ultrasound off to a pediatric specialist for a second time to reaffirm that nothing is abnormal in her belly. We may have to head for a CT scan if there is still no explanation for her high white count. It's hard to measure this change in less than 24 hours, so there probably won't be a blood draw until tonight or tomorrow morning. The plan was still to head home tomorrow, although today's findings may prolong that.
In the meantime, Will and Eli have been taken care of at home. A HUGE thank you to my book club ladies who have been so giving in making meals for the boys this week. I am so grateful to know that they are eating well while I'm away! In fact- maybe too well as they have been spoiled with desserts:) Really, I'm thinking Eli is enjoying his cupcakes and daddy time!
No matter when it happens, we will be home soon. Each day Hannah is happier and more herself, making all of our time here much easier.
Wednesday, February 13, 2013
02.13.12
Hannah smiled today! I also got one of her almost laughs. This came back to bite me because I was so excited that I got her all wound up playing this evening and she didn't want to go to sleep:)
Hannah's white blood cell count did not go down today, but after an ultrasound this afternoon they did determine that it's not high because of extra fluid pockets still sitting in her belly. Good and bad- good there are no visible issues, bad there is nothing to explain the white counts. I think they will wait until tomorrow evening to try and draw blood again to give more time for this to change.
We started bolus feeds today and she's handling them beautifully. The last one was a bit too fast for the increased volume, but we will just back off from there and increase more slowly now that we've got a good gauge on what she can handle.
I did unhook all of Hannah's monitoring lines today and walk with her a bit and play with her out of the crib. I think she liked it almost as much as I did:)
Tuesday, February 12, 2013
02.12.13
No news is good news.
Thankfully, I have very little to share tonight. Today was a relatively quiet day- the only heartache being that we had to move another IV. The PTN and lipids are just so hard on veins that they do not last long after running nutrition through them. We were able to get enough formula through the G-tube today (and Hannah handled it well) that we cut off the nutrition and will supplement with fluids until she's up to enough through the G-tube to meet nutrition needs.
Tomorrow we will try a bolus feed (cut off the continuous feeds for three hours and try to do an all-at-one-time feed). If this goes well, we will just keep increasing until we think it's too much. If we can hit goal, we can ditch the IV all together! This morning the surgeon suggested that we try to do continuous feeds overnight at home until Hannah's stomach is big enough to handle larger amounts. When we went home with the new G-tube the first time, I was getting up 3 times a night. It took a bit of a toll, but this time would be even more often than that. I'm thinking that pump feeding at night might be the best option just until we would be back down to 2-3 feeds a night.
Tomorrow morning will be the last (fingers crossed) blood draw to check white blood cell levels. If it's gone down, that means that we won't have to worry as much about infection getting worse. We haven't had a fever since yesterday!
Things are getting better. Tonight should be our best night yet for sleep- with less lines hooked up, we will have fewer alarms dinging. Hannah has already crashed for the night- the first night in a long time that she has been comfortable enough that I could rock her to sleep. No sweet smiles yet today, but I have a good feeling about tomorrow:)
Thankfully, I have very little to share tonight. Today was a relatively quiet day- the only heartache being that we had to move another IV. The PTN and lipids are just so hard on veins that they do not last long after running nutrition through them. We were able to get enough formula through the G-tube today (and Hannah handled it well) that we cut off the nutrition and will supplement with fluids until she's up to enough through the G-tube to meet nutrition needs.
Tomorrow we will try a bolus feed (cut off the continuous feeds for three hours and try to do an all-at-one-time feed). If this goes well, we will just keep increasing until we think it's too much. If we can hit goal, we can ditch the IV all together! This morning the surgeon suggested that we try to do continuous feeds overnight at home until Hannah's stomach is big enough to handle larger amounts. When we went home with the new G-tube the first time, I was getting up 3 times a night. It took a bit of a toll, but this time would be even more often than that. I'm thinking that pump feeding at night might be the best option just until we would be back down to 2-3 feeds a night.
Tomorrow morning will be the last (fingers crossed) blood draw to check white blood cell levels. If it's gone down, that means that we won't have to worry as much about infection getting worse. We haven't had a fever since yesterday!
Things are getting better. Tonight should be our best night yet for sleep- with less lines hooked up, we will have fewer alarms dinging. Hannah has already crashed for the night- the first night in a long time that she has been comfortable enough that I could rock her to sleep. No sweet smiles yet today, but I have a good feeling about tomorrow:)
Monday, February 11, 2013
02.11.13
Bad News:
This afternoon I noticed that the IV in Hannah's hand was pulled out enough to see a bit of the white piece that should be in her hand. It was not working quite right, and a bit of her fluids had swelled into her hand. So, we got a new IV in one of her feet.
This evening, I also noticed that the IV in her arm was swollen above the gauze wrap. The nurse called up the IV team and while they were checking it, blood started to leak from the insertion sight. Because Hannah can now take food through the G-tube, we were able to pull that IV and not replace it. However, this IV was used for nutrition- lipids and TPN. This kind of nutrition is generally put through a PICC line, not an IV for an extended amount of time because it can be hard on veins. If leaked into musculature, it can deteriorate muscle. Because there is a chance that Hannah's vein leaked inside her arm, she has to have an antibiotic injected under her skin in a circle formation around the area where it might have leaked into her muscle. The antibiotic will draw out anything that leaked.
Good News:
Hannah is much happier. Almost. She has started a very low flow of pedialyte and was just switched to formula for overnight. It will continue to be a slow process, it's important not to overwhelm her sleepy bowels. We are though, headed in the right direction.
More Good News:
As long as the IV in her foot holds up, it should be the last one she'll need. We still have a few blood draws ahead, but no more IV insertions! We went from 6am to 8pm without morphine, and we are sticking with tylenol and motrin when needed:)
Even More Good News:
We are one day closer to coming home!
The Best News:
Psalm 23:1-4: The LORD is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the strength of my salvation, and my stronghold.
02.11.13
WE HAVE A POOP! Doctors are making rounds now, but we should not need a PICC line and may even be able to start a very low flow of food tonight or into tomorrow:) Hannah's weight this morning was not as bad as I thought it would be-we may even come out about the same as when we entered after ditching the rest of this extra fluid and starting some real food.
Hannah is getting back to her old self. Overnight we were able to go about 2.5 hours between each morphine dose and today we are up to about 3.5 hours. Her eyes have been open and attentive, and she is trying to get after her favorite toys. The next few days should be relaxing. Thanks to Libby I have a stack of chick flicks to watch, I've got a good book to finish, and most importantly, I've got a happy baby to play with:)
Hannah is getting back to her old self. Overnight we were able to go about 2.5 hours between each morphine dose and today we are up to about 3.5 hours. Her eyes have been open and attentive, and she is trying to get after her favorite toys. The next few days should be relaxing. Thanks to Libby I have a stack of chick flicks to watch, I've got a good book to finish, and most importantly, I've got a happy baby to play with:)
Sunday, February 10, 2013
02.10.13
Top three from today:
1. Hannah was having some erratic breathing that scared the pants off me. I didn't scream for a nurse, but was pretty close. I've seen her struggle some to take a breath after being sedated, but this was different as she was just not really trying to take a breath. Evidently, this is not uncommon with a constant narcotic drip like what Hannah has had the past day. We stopped the low flow drip and are now only doing larger morphine doses, but we have been able to spread these out to 1 and even 2.5 hours apart today. This is so hard to do because of the fine line between wanting Hannah to be comfortable and able to rest vs. a constant stream of narcotics. Tomorrow should be better pain wise, so I'm hoping to continue this lower dosing.
2. We are REALLY hoping for a bowel movement tonight/tomorrow morning. When you are sedated, your bowels sort of shut down and they have to wake up before it's able to process anything. Unfortunately, there's no way to jump start this process, it just has to happen on its own. Right now, Hannah is shut down. If she doesn't start to rumble a bit, we are looking at having a PICC line placed tomorrow evening. This would mean being able to ditch the other two IV lines she's got, but for the negative trade of a line running through an arm vein directly to a large vein just outside of her heart. This would be able to provide enough nutrition to keep her going until her bowels wake up.
3. Dustin, Libby, and Charlie came to visit and my mom came with Eli this weekend:) It's nice to have some outside in after a few days of bad news in a compact room. Hannah recognizes her brother's voice. It melts my heart.
Saturday, February 9, 2013
02.09.13
So, while the Nissen band surgery looked like it went really well, it in fact, did not. At some point, either during the replacement of the G-tube or in recovery, Hannah's G-tube was knocked crooked. On Thursday after surgery, nurses started a very slow continuous feed that lasted for the following 24 hours. Because the tube was crooked, everything (food and all of her pain meds) was dumping outside of her stomach into her belly cavity.
All of Thursday into Friday, Hannah was miserable. By Friday late afternoon, her belly began to swell and she was in even worse pain. The surgeon decided to sedate Hannah again and drain what they could out of her belly (about 17 oz. fluid). What they couldn't remove, they washed with saline solution and drained a final time.
Recovery was very long. Hannah woke up fine, but was in a lot of pain. Her heart rate continued at a high level and pain meds were not helping. After many doses of different narcotics, we were moved back upstairs for the night. Unfortunately, Hannah was not only in pain, but everything she should have been eating, she wasn't, and all of her post-surgery pain meds from the previous 24 hours had done nothing.
We did get an hour of sleep during the night and an hour this morning. Several attempts were made at pain management, and we have finally got a decent system in place. The every-hour morphine doses were too far apart so Hannah is now on a constant slow drip of morphine and she can have additional larger doses every ten minutes as needed. Tylenol and an antibiotic help too.
Our greatest issue now is the risk for infection. We will have regular blood draws to check white blood cells and we will keep a close eye on her temperature. She will probably continue to have a decent amount of pain from irritation in her belly. Right now, Hannah can only have IV nutrition, but if things go well, we may be able to start a very slow continuous feed tomorrow evening. IV fluids help her feel nourished, but she's not fooled into thinking its the real thing (I wouldn't either after not eating real food since Wednesday!). We will have to stay probably through Friday for monitoring before an escape home can be planned.
Hannah is now resting. My fingers (and toes) are crossed for a non-eventful night. I may look like a million bucks with two hours rest and no makeup, but Will really needs his beauty sleep:)
All of Thursday into Friday, Hannah was miserable. By Friday late afternoon, her belly began to swell and she was in even worse pain. The surgeon decided to sedate Hannah again and drain what they could out of her belly (about 17 oz. fluid). What they couldn't remove, they washed with saline solution and drained a final time.
Recovery was very long. Hannah woke up fine, but was in a lot of pain. Her heart rate continued at a high level and pain meds were not helping. After many doses of different narcotics, we were moved back upstairs for the night. Unfortunately, Hannah was not only in pain, but everything she should have been eating, she wasn't, and all of her post-surgery pain meds from the previous 24 hours had done nothing.
We did get an hour of sleep during the night and an hour this morning. Several attempts were made at pain management, and we have finally got a decent system in place. The every-hour morphine doses were too far apart so Hannah is now on a constant slow drip of morphine and she can have additional larger doses every ten minutes as needed. Tylenol and an antibiotic help too.
Our greatest issue now is the risk for infection. We will have regular blood draws to check white blood cells and we will keep a close eye on her temperature. She will probably continue to have a decent amount of pain from irritation in her belly. Right now, Hannah can only have IV nutrition, but if things go well, we may be able to start a very slow continuous feed tomorrow evening. IV fluids help her feel nourished, but she's not fooled into thinking its the real thing (I wouldn't either after not eating real food since Wednesday!). We will have to stay probably through Friday for monitoring before an escape home can be planned.
Hannah is now resting. My fingers (and toes) are crossed for a non-eventful night. I may look like a million bucks with two hours rest and no makeup, but Will really needs his beauty sleep:)
Friday, February 8, 2013
02.08.13
Surgery went well! Hannah's procedure lasted about two hours once she was taken back for sedation. There was no need to move or detach/reattach the G-tube, and the doctor only needed to make two small incisions. She woke up much easier this time after sedation than the last time, and was content when we were allowed into the recovery room. Before we were released to our room, the doctor gave Hannah a breathing treatment to help her throat from swelling due to the breathing tube placed during the procedure. It definitely helped her sound better than normal while recovering.
We made it to our room about noon and had a quiet afternoon. Hannah was doing well until about 5:30 when she began to look and sound uncomfortable. She was just taking tylenol, but was given something stronger to help, though it wasn't as effective as hoped. It was probably the most rough night she's had throughout her stays here. Because of not wanting to overdose Hannah, we finally got pain meds straightened out around 5:30 this morning.
It looks like we may be here an additional night as Hannah starts to be more comfortable. She also needs to have a bowel movement-the hope is that this will help with relieving some of her belly pain. Right now, Hannah is doped up and more calm. Her heart rate is lower and we are hoping that she continues to enjoy her medicine-induced happiness.
We made it to our room about noon and had a quiet afternoon. Hannah was doing well until about 5:30 when she began to look and sound uncomfortable. She was just taking tylenol, but was given something stronger to help, though it wasn't as effective as hoped. It was probably the most rough night she's had throughout her stays here. Because of not wanting to overdose Hannah, we finally got pain meds straightened out around 5:30 this morning.
It looks like we may be here an additional night as Hannah starts to be more comfortable. She also needs to have a bowel movement-the hope is that this will help with relieving some of her belly pain. Right now, Hannah is doped up and more calm. Her heart rate is lower and we are hoping that she continues to enjoy her medicine-induced happiness.
Wednesday, January 30, 2013
01.30.13
What we’ve learned:
Heart: Hannah’s heart is ok. She does have a small hole
where blood flows from one side to the other, but it is not a concern. Many
people are born with this, and while most of these cases close themselves, even
if it doesn’t, she shouldn’t need a surgery to fix it.
Lungs: Hannah has a small spot of lung disease on one of her
lungs. It is ‘mild’ but could pose potential risks if it gets worse. Thus, we
head back to Mayo on the 7th to have a Nissen band constructed
around the top of Hannah’s stomach. The doctor will take the top part of her
stomach, wrap it around the top of her stomach, and staple it to itself. This
is the best option to stop reflux from coming up into Hannah’s esophagus and
leaking into her lungs. It should be a quick and not to painful recovery for
her and we are hoping to be back home over the weekend.
Kidneys: With Cri-du-chat Syndrome, kidney function is
sometimes compromised. Hannah’s abdominal ultrasound looks good, and her kidneys
were fine.
Vision: The pediatric ophthalmologist agrees that the
structures of Hannah’s eyes are fine, but she may have a bit of delay in
developing her ability to see well close up. She may need glasses, but they
will retest her in a few months.
Physical Strength: Hannah will develop slowly. She is
getting stronger every day and we pump her full of therapy to help maximize her
growth. I was looking at a blog from a mom of a 5p minus child, and she had
posted her daughters milestones. Child to child, there is much variance, but as
a base, her daughter could sit alone at over a year, said her first words at over two
years, and walked alone at over four years. She does note that now the problem
is keeping up with her!
Cognitive Development: The greatest indicator to Hannah’s
future is based on the size of the piece missing on her fifth chromosome set.
Hers is large. It would also be based on the duplication on the tenth set,
which is also large. The bigger, the worse it effects a child. Hannah will
probably not be able to live alone and will deal with at least a moderate, more
probably a severe, mental handicap.
Weight: Hannah’s growing is great. Thanks to the G-tube, she
gets all she needs and is finally ready to move into a size two diaper! Thanks
to her cousins, she is more than ready to move into her stylish wardrobe:)
What we know:
Hannah is beautiful. She is perfect in her own way. I am so
thankful that Hannah was sent to us, she is a blessing that God has given our
family. Every first she has will mean
more and be more special than we could have ever imagined. Eli loves Hannah,
and her smiles when he gives her Eskimo kisses tell me that she already knows
and loves him.
Thursday, January 24, 2013
01.24.13
Short and quick before I get off to work this morning...
Hannah's PH Probe showed readings high enough during feedings that she needs to have a band placed around the top of her stomach. They will wait for her to get over this darn cold and have surgery on Feb. 7th. It should be a relatively quick recovery.
For now we are home sweet home with Will and Eli...and Eli has been very happy to see his "beauful" (beautiful) little sister:)
Hannah's PH Probe showed readings high enough during feedings that she needs to have a band placed around the top of her stomach. They will wait for her to get over this darn cold and have surgery on Feb. 7th. It should be a relatively quick recovery.
For now we are home sweet home with Will and Eli...and Eli has been very happy to see his "beauful" (beautiful) little sister:)
Tuesday, January 22, 2013
01.22.13
It's freezing cold outside. Hannah looks like a snowman in her little bundle suit:)
As expected, Hannah failed her sleep study. During the consult today, the doctor suggested that she use an oxygen machine when she is sleeping. She also wanted a blood draw to test Hannah's iron count as it can contribute to how often she's kicking her legs at night. She slept through the abdominal ultrasound and we should know the results of that and her PH Probe tomorrow. We are a bit anxious to hear about the possible reflux- crossing our fingers that there will not be a surgery.
We have one more day filled with appointments, but if we are lucky, we will be heading home tomorrow night:)
As expected, Hannah failed her sleep study. During the consult today, the doctor suggested that she use an oxygen machine when she is sleeping. She also wanted a blood draw to test Hannah's iron count as it can contribute to how often she's kicking her legs at night. She slept through the abdominal ultrasound and we should know the results of that and her PH Probe tomorrow. We are a bit anxious to hear about the possible reflux- crossing our fingers that there will not be a surgery.
We have one more day filled with appointments, but if we are lucky, we will be heading home tomorrow night:)
Monday, January 21, 2013
01.21.13
Today was a day of waiting. We checked in this morning for Hannah's biopsy and PH Probe placement. The look at her lungs showed what the pulmonary doctor had previously thought- that there is a bit of lung disease in the spot he saw on the CT scan. What they did learn is that they believe the spot is relatively new or at least an ongoing problem, so Hannah will be cut off from any oral feedings at this point.
Tomorrow the PH Probe will be pulled and data will be collected to see what if any reflux is happening, and based on the outcome, we will decide where to go next. No reflux means no surgery, and our fingers are crossed!
Unfortunately, Hannah is a bit of an escape artist and because of this, she has to wear 'no-nos,' arm cuffs that prevent her from moving or bending her arms and whipping out her nose tube. She's not happy about it, but she's still cute:)
Sunday, January 20, 2013
01.20.13
A quiet day today. Hannah didn't realize that it was Sunday and that we didn't have appointments today, so she was up early to welcome the morning...
We relaxed most of the day and just enjoyed being together. Mom made fried chicken and mashed potatoes and gravy for lunch and the BEST chocolate chip cookies for my three desserts. Eli spent time playing in the kid's room here and we all got to enjoy a visit with Christine, our friend that lives in town. Eli was especially happy to get another day with his little sister.
We relaxed most of the day and just enjoyed being together. Mom made fried chicken and mashed potatoes and gravy for lunch and the BEST chocolate chip cookies for my three desserts. Eli spent time playing in the kid's room here and we all got to enjoy a visit with Christine, our friend that lives in town. Eli was especially happy to get another day with his little sister.
Tomorrow morning we report for Hannah's appointment to have a better look at her lungs. While she's asleep, they will also place a PH Probe and begin to monitor any reflux for the following 24 hours (we will stay overnight for this one, too). Our fingers are crossed for no signs of reflux and no additional testing!
A big thank you to all who have sent well wishes and prayers our way. We are so very grateful for the support and generous love we are blessed with.
Saturday, January 19, 2013
01.19.13
Just a quick update to share tonight. Last night Hannah had her sleep study, but it didn't go well. The air in the room was really dry and it made it hard for me to breathe right, and even worse for Hannah. I didn't think that her sleep last night was a very good representation of her normal routine sleeping. She was also covered in probes (about 10 on her head and another 10 placed around her face and body) and had a breathing tube set in her nose to monitor breathing difficulties. The nurse was in a lot to check on her and re-position any probes that weren't picking up enough signal, so there wasn't much sleep. Overall I am interested to find out if Hannah slept well enough and deep enough to get a good read on her sleep patterns.
Today was spent with Will and Eli. We also moved into the Ronald McDonald House and used their free Rochester Children's Museum passes to take Eli out on the town. We also took him to the Ramada for an evening of swimming and pizza- though I think the pizza part pleased Will more than Eli...
We are looking forward to more family time tomorrow:)
Eli painted his own face at the Children's Museum...the next Picasso?
Today was spent with Will and Eli. We also moved into the Ronald McDonald House and used their free Rochester Children's Museum passes to take Eli out on the town. We also took him to the Ramada for an evening of swimming and pizza- though I think the pizza part pleased Will more than Eli...
We are looking forward to more family time tomorrow:)
Eli painted his own face at the Children's Museum...the next Picasso?
Friday, January 18, 2013
01.18.13
Another eventful day...This morning we met with the swallow study doctors to prep for the FEES study this afternoon. We then met with a physical medicine and rehabilitation to discuss Hannah meeting milestones and an overall discussion of her progress since she's left the hospital in November. It was encouraging to know that she is meeting her milestones, even if it is slow going.
Our afternoon was spent with a sleep study consultation and the FEES study. The consultation went well. Despite Hannah's lasting cold symptoms, we are still going forward with the sleep study tonight. As far as the FEES swallow study- fail. Hannah did not appreciate the camera down her nose (I am on her side on this one...) and after only a few swallows they stopped the study. The doctor decided to halt all oral intake until we can determine feeding aspiration by a different means. So, while this means less barf on me, it is a concern that she will regress on the what progress she had made in her swallowing abilities.
We are now back at our hotel for dinner and then we will head back downtown for tonight's sleep study.
On a happy note... Hannah was all smiles today (except for the camera in her nose bit). She is a happy, beautiful little girl who knows just when a grin is needed to brighten spirits. The doctors who saw her during our last stay are happy to see her growth over the past month. And, last but not least, we are #4 on the Ronald McDonald waiting list and should have a new roof over our heads tomorrow evening:)
Perfectly put by an amazing friend, "Praise God. Lay all of your troubles on Him."
Our afternoon was spent with a sleep study consultation and the FEES study. The consultation went well. Despite Hannah's lasting cold symptoms, we are still going forward with the sleep study tonight. As far as the FEES swallow study- fail. Hannah did not appreciate the camera down her nose (I am on her side on this one...) and after only a few swallows they stopped the study. The doctor decided to halt all oral intake until we can determine feeding aspiration by a different means. So, while this means less barf on me, it is a concern that she will regress on the what progress she had made in her swallowing abilities.
We are now back at our hotel for dinner and then we will head back downtown for tonight's sleep study.
On a happy note... Hannah was all smiles today (except for the camera in her nose bit). She is a happy, beautiful little girl who knows just when a grin is needed to brighten spirits. The doctors who saw her during our last stay are happy to see her growth over the past month. And, last but not least, we are #4 on the Ronald McDonald waiting list and should have a new roof over our heads tomorrow evening:)
Perfectly put by an amazing friend, "Praise God. Lay all of your troubles on Him."
Thursday, January 17, 2013
01.17.13
Before anything, I have to give a big, no huge! thank you to everyone at Washington Elementary for the generous and thoughtful send off on Tuesday afternoon. How grateful I am to be blessed with such caring and big-hearted peers. Will and I are overwhelmed by the support we've been shown.
In my best attempt to keep everyone updated, a blog seems the most effective and efficient way- let's hope that I can keep up:)
We arrived at Mayo late on Tuesday for Hannah's early appointment on Wednesday morning. We reported to St. Mary's for a chest CT. Hannah did have to be sedated for this in order to avoid wiggling and get a good picture of her lungs.
Thursday was draining. We were stacked with appointments, the telling one being genetics. Hannah has a 5p deletion consistent with a diagnosis of cri-du-chat syndrome and a 10q duplication that contains approximately 45 known genes. The cri-du-chat syndrome can manifest with cognitive delays, less muscle tone and a smaller head (though her head is growing proportionally with her body and so far is on track for her growth chart line). Hannah's swallowing and aspiration problems could be attributed to this. The duplication of chromosomes is a wild card, as there is less known about the effects of this chromosome set having an extra piece. Will and I will both be tested for the same disorders. It could be anomaly in Hannah or something that we passed down. One additional concern is organ function- especially the kidneys, so there is an ultrasound scheduled for Tuesday, as well as an Echo of her heart.
The results of Hannah's CT scan of her lungs yesterday showed very mild bronchiectasis in one lung that could eventually cause serious and permanent damage. Monday through Monday night Hannah will have a PH probe (very similar to an NG tube) placed down her nose that will register any refluxing into her lungs.
The good news? Hannah was so happy to be out of our arms and her carseat, that the moment she was able to stretch out at the hotel, she rewarded us with great big belly laughs- her first- and more beautiful laughs have never been heard!
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