Callie is doing great since her surgery and all the trips back and forth to Minnesota. Her follow up went great. All of the doctors were very happy with her progression. The neurosurgeon made the comment previously how serious her skull was, which made us very grateful to have found Gillette. Hearing this is something he would see in a medical journal it was so serious was a bit shocking, but really assures us this was defiantly the right thing to do. Since surgery and recovering from her infection she has become so much happier. She was always a very happy little girl, but it is so different now. She also has so much energy and is always giggling and moving. She stands so much better, is always crawling and wrestling with anyone on the floor (and she likes her brothers head the best).
With our follow up the infectious disease doctor (ID) decided to keep her on her IV medications one more week as she would be having heart surgery in January. We had a great plan in place until we got home from the 3 hour drive and her PICC line broke for the second time in 2 weeks. We were not even home more than 5 minutes. I truly just wanted to sit and cry. All I could think was there was no way I was driving back to Gillette and no one locally will replace it at night. After talking with Gillette I told them I was not going to drive back and she was just going to go without her medication for the night. They agreed this was ok and we could just talk with the doctor in the morning. They decided there was actually a greater risk of infection to replace the PICC again when she really did seem better so they had the local pediatrician pull her PICC line that day and we started on an oral antibiotic for another 10 days. I think Callie was so happy to have everyone stop messing with her and just get to her whole arm back.
It was confirmed this week that Callie will be having open heart surgery on January 7th. They will be fixing her ASD (whole in the heart from birth) along with her pulmonary stenosis (narrowed pulmonary valve – where the blood is pumped out to the lungs). She will spend 1 week in the PICU. This has been something we have been monitoring since birth. She has been stable since she was 1 year old, however she has a significant blockage that we knew it was only a matter of time before she would need this surgery. We have been waiting for her to get bigger and healthier. It has been quote the balancing act for the doctors to determine when the right time is. With the potential surgeries and sedations coming up in the next year it is time to get her heart fixed. We need to wait 2 months before moving on with any additional surgeries as she will be put on blood thinners through the heart surgery.
We do not have a set date yet, however we are thinking beginning of April she will have her second cranial surgery done. This one will be for her forehead. The purpose will be to allow for her brain to continue growing and make additional space. There is a possibility that from the movement of the bone and swelling there her surgery had on her eyes to lift the lids will “break” and need to be re-done. Only time will tell. The third cranial surgery would potentially be the mid-face. At this point it has been put on hold and the doctor will just follow her a year after the forehead surgery to determine if it will be necessary. Originally we thought all 3 would be required so that was great news to hear that maybe it won’t be needed.
We are still in the process of trying to find an ENT doctor that is familiar with the choanal atresia (Closed nasal passage) to start talking through that. We know it is still a year out so we have not spent to much energy trying to find someone. There is a lot going on and we remind ourselves one day at a time. Callie is showing huge progression and we are so proud of her!
Zak also saw the doctors at Gillette while we were there. We are excited that he does not have the Craniosynostosis (fused skull) like Callie! The cranial doctor would like to follow him annually though as his mid face is slightly pushed back and wants to be sure that it does not become an issue. He also saw an orthodontist while we were there and confirmed he will need some oral work done at some point as he does have a very small mouth. We will be seeing a dentist at Gillette and then will continue to follow an orthodontist. We also talked to the doctors about Zak’s continuing head banging. There are a few tests that they can run to rule things out before it is deemed as behavioral. We are still working through that to determine where to start and how we would like to move forward.
Friday, December 7, 2012
Tuesday, November 13, 2012
Finally Home
Callie came home yesterday from Gillette. It was a very long weekend! Too long at that.
On Sunday she had her PICC line placed. They sedated her for it so it is considered a surgical procedure. The doctor said it went in good and they had no issues. The rest of Sunday was fairly uneventful for Callie. I must say though I was so impressed with the PICU doctor. We were moved to the main floor on Saturday so he no longer needed to follow up. He stopped by on Saturday and Sunday to check on Callie. He wanted to make sure she was doing well with the PICC and we were able to get it placed. He is by far one of the best doctors we have ever met! Yesterday we were able to get out in the afternoon after a whole long day of trying to discharge. She did come home on IV medication for 2 weeks. We have to go back for a follow up now in a few weeks
As for me, Sunday was very eventful! In the middle of the afternoon I went to run to the store to find out that my wallet was missing from my purse. I looked and looked and no luck. That is when I suspected someone stole it, however nothing else was missing so it did not make much sense. I looked online and realized there were several transactions that we did not do and that was when it sunk in that someone stole my wallet while we were down for the PICC line placement.
On Sunday she had her PICC line placed. They sedated her for it so it is considered a surgical procedure. The doctor said it went in good and they had no issues. The rest of Sunday was fairly uneventful for Callie. I must say though I was so impressed with the PICU doctor. We were moved to the main floor on Saturday so he no longer needed to follow up. He stopped by on Saturday and Sunday to check on Callie. He wanted to make sure she was doing well with the PICC and we were able to get it placed. He is by far one of the best doctors we have ever met! Yesterday we were able to get out in the afternoon after a whole long day of trying to discharge. She did come home on IV medication for 2 weeks. We have to go back for a follow up now in a few weeks
As for me, Sunday was very eventful! In the middle of the afternoon I went to run to the store to find out that my wallet was missing from my purse. I looked and looked and no luck. That is when I suspected someone stole it, however nothing else was missing so it did not make much sense. I looked online and realized there were several transactions that we did not do and that was when it sunk in that someone stole my wallet while we were down for the PICC line placement.
Saturday, November 10, 2012
Doing good.
Callie had a very good day. The antibiotics have kicked in and no fever! Last night before they put in her IV they gave her some meds to relax her so she basically spelt from 6-midnight and on and off until 1:00am. She had a few naps through the night but mostly played. I am guessing she was so happy just to feel good. By 6am she was in full swing active mode! For the most part she has done well playing in the crib, which did surprise me a bit. I figured she would want more room to move. We were told during morning rounds that we would be moving to the floor today. Everyone knows how we feel about a main floor unit! Well at 3:00 we were moved.
This is our first experience on the floor so I was going into it with an open mind knowing how amazing everything has been up to this point. During admission onto the main unit Callie lost her IV. They were not able to flush it at all. We thought it was 'saved' however it was not. This brought up a whole new factor. The discussion that has been going on all day. Will Callie need to go home on IV medication? Results from the cultures are not back yet so we really just don't know for certain. If she goes home on IV medication she needs a PIC line (A peripherally inserted central catheter is a form of intravenous access that can be used for a prolonged period of time). If the infection is just a tissue infection she may not need to be on IV medication. So the big question is poke Callie who knows how many more times just to get an IV or place a PIC line in the morning (under sedation). The ICU doctor said wait until morning and the floor doctor wanted to put in an IV. Thankfully the ICU doctor that came on for night rotation came to the floor to see us as he heard they lost the IV (which he placed the night before). He was also the day shift doctor that followed Callie the whole week after her surgery. We talked through the issue and he agreed that he would wait until morning as it just is not worth poking Callie more. He talked to the other staff and no IV was placed. I have so much respect for this doctor. He truly understands our family, abilities to care for Callie and most of all he listens to what we want. After that was all dealt with all I have to say about the nurse we had is I hope the night one is good and I can get some sleep.
As for the PIC line it will be placed at 8am tomorrow. We are just assuming that it is going to be needed. We were really hoping to go home tomorrow, however by the sounds of it we may not be able to get IV medication on a weekend so we may be stuck until Monday. To make it even better both kids have to be here on Tuesday for appointments.
By the end of the day - well Callie is back to her old self. Full of spunk!
So many people have asked how I am doing as Chris is at home with Zak for this trip. Thankfully I do have help though as Grandma Kathy came along. Riding in the car alone with Callie was not an option. First thank you for thinking of me and asking, however I will tell you what most Mothers do. I am doing good. You go on peer love for your child and do what you need to do given the moment. Callie needs me the most right now and I need to be strong and supportive for her. I will say though I cannot wait for our life to get back to normal and get one good night of sleep as it has been a very long two weeks. I am also looking forward to real food as hospital food just does not cut it and a shake made with a blender (my morning breakfast shakes just are not the same).
Praying for some answers on all the cultures tonight along with Callie to continue with her healing as she is going in the right direction now.
This is our first experience on the floor so I was going into it with an open mind knowing how amazing everything has been up to this point. During admission onto the main unit Callie lost her IV. They were not able to flush it at all. We thought it was 'saved' however it was not. This brought up a whole new factor. The discussion that has been going on all day. Will Callie need to go home on IV medication? Results from the cultures are not back yet so we really just don't know for certain. If she goes home on IV medication she needs a PIC line (A peripherally inserted central catheter is a form of intravenous access that can be used for a prolonged period of time). If the infection is just a tissue infection she may not need to be on IV medication. So the big question is poke Callie who knows how many more times just to get an IV or place a PIC line in the morning (under sedation). The ICU doctor said wait until morning and the floor doctor wanted to put in an IV. Thankfully the ICU doctor that came on for night rotation came to the floor to see us as he heard they lost the IV (which he placed the night before). He was also the day shift doctor that followed Callie the whole week after her surgery. We talked through the issue and he agreed that he would wait until morning as it just is not worth poking Callie more. He talked to the other staff and no IV was placed. I have so much respect for this doctor. He truly understands our family, abilities to care for Callie and most of all he listens to what we want. After that was all dealt with all I have to say about the nurse we had is I hope the night one is good and I can get some sleep.
As for the PIC line it will be placed at 8am tomorrow. We are just assuming that it is going to be needed. We were really hoping to go home tomorrow, however by the sounds of it we may not be able to get IV medication on a weekend so we may be stuck until Monday. To make it even better both kids have to be here on Tuesday for appointments.
By the end of the day - well Callie is back to her old self. Full of spunk!
So many people have asked how I am doing as Chris is at home with Zak for this trip. Thankfully I do have help though as Grandma Kathy came along. Riding in the car alone with Callie was not an option. First thank you for thinking of me and asking, however I will tell you what most Mothers do. I am doing good. You go on peer love for your child and do what you need to do given the moment. Callie needs me the most right now and I need to be strong and supportive for her. I will say though I cannot wait for our life to get back to normal and get one good night of sleep as it has been a very long two weeks. I am also looking forward to real food as hospital food just does not cut it and a shake made with a blender (my morning breakfast shakes just are not the same).
Praying for some answers on all the cultures tonight along with Callie to continue with her healing as she is going in the right direction now.
Friday, November 9, 2012
Infection
Callie was admitted to Gillette Children's today for an infection. On Thursday she went to our pediatrician as the incision on the back of her neck was infected. The doctor ran a blood test however the incision was not draining anything to even get a culture. They did give her an antibiotic injection to hopefully get ahead until we received the results. Over night she spiked a fever of 104 and the incision started to drain. After Tylenol and ibuprofen the fever came down to 101. I called the pediatrician again to update them, however the results were not back yet. I also called Gillette just to let them know what was going on. After talking with the Gillette doctors this morning they decided the best thing was for us to come to MN and get admitted to the ICU where they know her best (as it relates to this surgery). We arrived in MN around 4:00pm. They were able to get a culture of her neck right away. The ICU doctor was going to put in a PIC line right away however anesthesiology would not approve the sedation as she has not been with out food long enough. We had to do an IV. The reason for wanting the PIC line was we could at least go home with that and do IV medication at home. They did get the IV in and were able to draw blood from it right away. All the labs have been sent in. They do have her on the IV antibiotics now as we wait for the results to come in. We are hoping tomorrow to get some answers.
Please say prayers for a speedy recovery so we are able to go home.
Please say prayers for a speedy recovery so we are able to go home.
Tuesday, November 6, 2012
Settled back in
Callie has been doing great since she came home on Friday. It was a crazy morning the day of discharge and really ever since we got home too!
The hospital had got her off the medication that she was on around midnight, however the nurse thought Callie still needed it and gave her more medication very early in the morning. We asked the doctor to stop it and he agreed. We told the new nurse that was on that we were ready to go home and within an hour the Neuro PA and ICU doctored agreed she could go. Although we were defiantly ready and Callie was back to her baseline we were a bit shocked it was so easy. I thought for sure they would make us go to the floor for a few days. We quickly packed the bags and were outta there!
Callie did very good on the way home. She slept most of the way. We could defiantly tell she was happy to be back home in her surroundings. She was not to mobile yet and still not overly smiley as she was still tired, but we could tell that she was happy to see her big brother. I am not to sure what Zak thought. Callie has been sleeping on the mat in the living room that Zak plays on. I often wonder if he is thinking move off my mat.
On Saturday night Callie rolled over and was up on all fours. I could tell that took a lot out of her. By Sunday she was crawling again and all over the place. I was so amazed how quickly she recovered especially once back in the house. She was defiantly able to get some more rest. She is back to crawling on Zak!
While we were gone in MN Zak lost another tooth! We are not sure when or where. Chris was brushing his teeth on Friday night and it was just gone. This is the first one we “lost”. I think Zak is happy that his life is back to “normal” and we are back into his routine, although then we changed the time on him so that will take a few days to get used to.
The hospital had got her off the medication that she was on around midnight, however the nurse thought Callie still needed it and gave her more medication very early in the morning. We asked the doctor to stop it and he agreed. We told the new nurse that was on that we were ready to go home and within an hour the Neuro PA and ICU doctored agreed she could go. Although we were defiantly ready and Callie was back to her baseline we were a bit shocked it was so easy. I thought for sure they would make us go to the floor for a few days. We quickly packed the bags and were outta there!
Callie did very good on the way home. She slept most of the way. We could defiantly tell she was happy to be back home in her surroundings. She was not to mobile yet and still not overly smiley as she was still tired, but we could tell that she was happy to see her big brother. I am not to sure what Zak thought. Callie has been sleeping on the mat in the living room that Zak plays on. I often wonder if he is thinking move off my mat.
On Saturday night Callie rolled over and was up on all fours. I could tell that took a lot out of her. By Sunday she was crawling again and all over the place. I was so amazed how quickly she recovered especially once back in the house. She was defiantly able to get some more rest. She is back to crawling on Zak!
While we were gone in MN Zak lost another tooth! We are not sure when or where. Chris was brushing his teeth on Friday night and it was just gone. This is the first one we “lost”. I think Zak is happy that his life is back to “normal” and we are back into his routine, although then we changed the time on him so that will take a few days to get used to.
Friday, November 2, 2012
Thursday, November 1, 2012
Code Brown
Callie had an awesome day.. other then one small issues. Code Brown! She had not gone since surgery so she got a suppository this morning. Needless to say she went, and went, and went. They actually stopped the IV antibiotic as she had peer liquid stools. It made for a lot of diaper changes this morning.
By midnight she will be off her IV med for pain and sedation. She is still in the PICU as she has to be closely monitored on this medication. Assuming she is going well tomorrow she will be moved to the Neuro unit. Both of the physician assistant for the doctors came by today. They were both pleased with how well Callie is doing and the progress she is making. She is still on a little blow by oxygen just to keep her levels us. This evening she played for about an hour on my lap. That was nice to see. She still is not talking much, just a few sounds here and there. Hopefully tomorrow we can hear more of her voice. She still tired easily so in time I am sure she will be telling us all about her story.
Callie had a visitor as well today from a close Friend. Zak's Godmother! It was nice to see her and catch up a little bit. It definitely makes the day pass quicker when it is broken up a little. Callie was being stubborn and really did not want to wake up when she was here.
If all goes well we are hoping to be home Saturday! It sure would be nice to get home and still have 1 day of the weekend to relax.
By midnight she will be off her IV med for pain and sedation. She is still in the PICU as she has to be closely monitored on this medication. Assuming she is going well tomorrow she will be moved to the Neuro unit. Both of the physician assistant for the doctors came by today. They were both pleased with how well Callie is doing and the progress she is making. She is still on a little blow by oxygen just to keep her levels us. This evening she played for about an hour on my lap. That was nice to see. She still is not talking much, just a few sounds here and there. Hopefully tomorrow we can hear more of her voice. She still tired easily so in time I am sure she will be telling us all about her story.
Callie had a visitor as well today from a close Friend. Zak's Godmother! It was nice to see her and catch up a little bit. It definitely makes the day pass quicker when it is broken up a little. Callie was being stubborn and really did not want to wake up when she was here.
If all goes well we are hoping to be home Saturday! It sure would be nice to get home and still have 1 day of the weekend to relax.
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