We still have no teeth yet, but plan to start baby cereal before the end of the month. Hoping we can put the yucky antibiotic into the cereal and keep it down better/ more often.
Tuesday, November 16, 2010
Double Whammie - cold and pukes
Thank you to anyone still checking Cailynn's blog! I just wanted to give an update. We are 2 months from her surgery and she is doing fantastic! Her scar is smooth and we have not had any fevers. Even Dad and Mom are getting used to the role switcheroo. We do ask for continued prayer for Cailynn through this cold and flu season. Right now she is battling head congestion and a stomach bug at the same time. Makes for a cranky, fussy baby and tired, worried Mommy.
We still have no teeth yet, but plan to start baby cereal before the end of the month. Hoping we can put the yucky antibiotic into the cereal and keep it down better/ more often.
Happy Thanksgiving!!
We still have no teeth yet, but plan to start baby cereal before the end of the month. Hoping we can put the yucky antibiotic into the cereal and keep it down better/ more often.
Wednesday, October 20, 2010
Back to work!
Well, I've been officially back to work for 2.5 weeks now and thankfully Cailynn has been infection free! We had an ultrasound last Thursday followed by a visit to the urologist and everything looks great! We have an appointment in 6 months for another ultrasound, VCUG, and urologist. I was told that there is a slight possibility that the VU reflux could fix itself, so the doctor wants to give her some time and that's why we will have another VCUG. In 6 months time there should be some improvement, if there is going to be any. So now we just pray for the VU reflux to be healed because then she would not need another surgery!
As Trent is still unemployed, he took on the role of Mr. Mom when I went back to work. As far as I can tell, he and the 2 girls are surviving. He is also home when the 2 big kids get off the bus. This makes my day shorter because for the first time, I can come straight home from work! Trent has mastered the Beco carrier, bottle feeding, and diaper changing (cloth!). Most days when I come home the 2 year old is still in her jammies, laundry is scattered about, and leftover lunch is on the table (its not as easy as you think Dads!) He's doing a fantastic job and I am so glad he is able to be home with the baby because I cannot. I feel somewhat helpless though as I can't do much to help him out during the day, especially days like yesterday that were filled with crying and poop! This role reversal has given me a bit of an identity crisis as I see him do all "my" jobs. I feel somewhat useless..... I just try to remember that this is temporary.... and we are still figuring it all out!
As Trent is still unemployed, he took on the role of Mr. Mom when I went back to work. As far as I can tell, he and the 2 girls are surviving. He is also home when the 2 big kids get off the bus. This makes my day shorter because for the first time, I can come straight home from work! Trent has mastered the Beco carrier, bottle feeding, and diaper changing (cloth!). Most days when I come home the 2 year old is still in her jammies, laundry is scattered about, and leftover lunch is on the table (its not as easy as you think Dads!) He's doing a fantastic job and I am so glad he is able to be home with the baby because I cannot. I feel somewhat helpless though as I can't do much to help him out during the day, especially days like yesterday that were filled with crying and poop! This role reversal has given me a bit of an identity crisis as I see him do all "my" jobs. I feel somewhat useless..... I just try to remember that this is temporary.... and we are still figuring it all out!
Saturday, September 18, 2010
PRAISE GOD!!!
Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. 1 Peter 5:6-7
Its been almost a week since Cailynn's surgery and I really want to thank everyone for your thoughts and prayers. The surgery itself went fantastic, according to the doc, and she is recovering/ healing nicely. I will let the pictures help tell the story, but want to thank Pastor Joe for giving of his time to keep us company during the 4 hours (only 4? felt like 40!!!) she was away from us. Thank you Pam, too :)
I need to thank my Mom, for so many things, but particularly for being there and keeping the 2 year old entertained, for visiting that night, for always being there when we need her.
We were in at 9:30 AM Monday morning, and went right to pre-op. Surgery was scheduled for 11:35. Answered a lot of questions, signed releases, asked some questions, and waited, and waited, and waited. A woman from the lab came up to draw blood :( Didn't get enough from the first vein, so had to stick her again, but got what she needed. Doc wass running late on another surgery, so it was 12:17 when they finally took her. It was heart wrenching to give her over to the nurse, but at least they carried her, and didn't wheel her away..
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| keeping big sister entertained in pre-op |
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| resting in Nana's arms before surgery |
They told us it was a 2- 2.5 hour procedure.... so after 3 hours, I asked for an update and was told they were closing. An hour later the Doc finally made his way out and told us she was in recovery. He said the surgery was textbook and that it couldn't have gone any better! I know God's hand was on his because it was a perfect surgery, he even said zero blood loss.... ??? She recovered well, and we got to meet her back in the room in the Almost Home unit. The nurses were familiar with us up there since I had spent a day and night there the week before. We were doubled up in a room at first, but around 7pm I asked if there was any way to get our own room (at the insistence of my hubby) and we did which made for a more restful night for both families. Cailynn slept on me all night. By this time all her leads and monitors were off, so I was only dealing with the IV and cath. Around midnight, during her IV antibiotic, her IV started to come out. The nurse tried to fix it, but lost it. OH, NO! I thought, and started praying again. They called the Doc and he just put her back on her oral antibiotic rather than put in a new IV - another prayer answered! THEN we rested.
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| after recovery |
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| still a little drugged.... |
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| back with mom... |
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| and dad |
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| incision site bandaged |
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| sooooo relieved |
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| IV, catheter, drainage tube, leads, O2 monitor, blood pressure cuff... I didn't know how to pick her up! |
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| Slept all night in mommy's arms, and most of Tues too. |
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| feeling better, more like my baby |
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| 2 inch incision on right side |
We got to go home Tuesday evening. She has been pretty comfortable, just needing pain meds around 4-5 in the evening. It looks like her incision is healing nicely, no sign of infection. She starts new meds tomorrow, and we are hoping she will be able to stay infection free for a long while.
Sunday, September 5, 2010
2nd worst day of my life
First of all, I want to say that I am writing this from home and not the hospital. For which I am so thankful. Second, Cailynn's surgery is Monday, September 13th, don't know the time yet. We have been working hard to be infection free until then.
Now for the "2nd worst day ever" part....
We have been using the PICC (peripherally inserted central catheter) line (that was started in the beginning of August during our second hospitalization) to administer Cailynn's antibiotics at home. It was pretty much smooth sailing, at home anyway, with the IV antibiotics. Then this past Thursday night, when I went to give her the 9pm dose, the saline flush just leaked out all over and was dripping from her arm, so I called the Home Health Care (HHC) nurse and she came out at like 10:30pm to see what was wrong and try to fix it. We had hoped it was just the connector piece that had come loose, but it wasn't. The line had a hole and was leaking. The HHC nurse called into the hospital to IV therapy and asked if there was any way to save the line and was told, no. So she called our doctor and got orders for us to go to the hospital the next morning at 10:30am to get a new PICC line put in. OK, no big deal really. We were supposed to be leaving for a long weekend in Erie, but maybe we will just leave a little later than planned, and with a brand new PICC and dressing so I'll have nothing to worry about..... or so I thought.
So Friday morning I took myself and Cailynn to the hospital and checked in to the Almost Home unit. We were told to be NPO (no more eating for the baby) after 10am. Of course, the IV therapy team was running behind, so they didn't come in til about 2pm. Before putting in the PICC, they have to start a peripheral IV to administer the sedation medication so Cailynn would not feel anything and would be calm for the PICC procedure. I was told that I was not going to be able to come with her to the treatment room when they did the PICC procedure, which I was not OK with and I made my feelings known. Eventually the IV therapist relented and said I could accompany her, but had to sit to the side during the procedure, but I could be in the room, so that was ok with me. Good thing too, because well..... it didn't go so well. Two IV therapists tried for 2 hours to get an IV started on her. They made 5 attempts where they actually put a needle in her, including one on her head!, all of them failures. At this point the poor baby had been crying for hours and hadn't eaten in 6 hours. The IV therapists were apologetic, and kept saying "this never happens." Our options were try to get orders for an oral sedation medication- which would take another 45 -60 minutes to start working, more time before she could eat. OR, we could go ahead with the PICC placement without sedation and be done in less than 45 minutes and she could be eating again. I went with the quicker route and the PICC was placed without sedation, but she was so tired from crying, that she mostly slept through the whole procedure anyway!
Finally it was done, we just needed to wait for our turn at the x-ray lab so they could check the placement of the line. So another hour wait, then x-ray, then wait for results. Results were not good. The line had curled around her shoulder so they needed to adjust it. By this time the IV therapist was not willing to keep going at this alone so she got a doctor to adjust the line and they did it under fluoroscope (a video x-ray). It took like what seemed forever and poor Cailynn screamed the whole time. It did not hurt her, but they had to hold her down and immobilize her arm, and she really hated that. My mom had come to stay with us after work so when we were done she brought us home. It was 7:30pm.
At 9pm I got her antibiotic ready but when I went to flush the line with saline, nothing happened. I could not get anything to go through the line. So I called the HHC nurse again and she called the hospital and after talking to them she recommended that I go back to the hospital and have them check it. So at 11pm I was back in the hospital. The same IV therapist had stayed past her shift to check out Cailynn's line. Long story short, she found a hole in the line and pulled it. That's 2 holes in 2 days. She said she goes 5 months and doesn't see one hole in a PICC line. Lucky, lucky us. Everything we had gone through that day and the result was NOTHING. I honestly felt something against us all day. I had prayed so hard, called all my prayer warrior friends and continued to watch my baby suffer.
The IV therapist called our doctor and we were told we needed to stay and spend the night so they could try again in the morning. At his point I finally conceded defeat and realized our little family getaway wasn't going to happen. I was broken and tired and done. At 2am the night IV therapist came to try again to get an IV started so Cailynn could get her medsmeds in the morning. But surprise, surprise! Couldn't get it! She was merciful though and only tried once, the only one left I suppose. So we went back to our room, Cailynn slept on my chest while I dozed in the chair, not really knowing what the morning would bring...
So then it was Saturday morning and as far as I knew, the plan was still to try and put in another PICC. No one wanted Cailynn or me to suffer any more. That was a huge consideration when discussing the next move, second only to her health. She needs to finish the treatment of her last infection, and we are desperately trying to keep her free of infection til her scheduled surgery.
Finally our doctor came and we started discussing our options.
1. Try another PICC. The problem was getting her sedated and that was the problem the day before. She could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection.
2. Put in a central line. That would require a visit to the operating room where a surgeon would place a catheter in a main vein near her neck or shoulder. It would be accessed at her chest and it would be in place as long as we wanted it. She would not need any more needles because they could draw blood from it, administer meds and fluids, and the anesthesiologist could use it too for her surgery next week. She would go under general anesthesia (gas) so no need to get an IV line started. Its pretty invasive for 5 more days of IV antibiotics, but I was leaning that way because of how much IV stuff she had already received and how many more times she is likely to have to have IV access in the near future. (I count 2 times in the next 10 days without counting the IV antibiotics). Again, she could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection. The doctors felt we had kinda pushed the limits of that already that day.
3. Try an oral antibiotic. The problems with oral antibiotics is that she doesn't always take them well (spit up, puke up or just push out of her mouth) and the bacteria we are fighting needs a really strong antibiotic and the doctor didn't know if there was even one we could use for such a young baby.
So we discussed this with the doctor. He went off to talk to the infectious disease doctors to see if there was something we could take orally to fight this bacteria. I was still leaning toward the central line, just because if we could do that and never have to torture her again with another IV it would be so worth it to me but Trent was more concerned about the invasiveness of it and wanted to take a more conservative route..... Then the doctor came back and proposed we put her on Cipro. It isn't indicated for babies under 1 yr old, but there are twins in the NICU who were on it because of bad infection so the infections disease doctors, the pharmacist, and our doctor felt that the drug could be used with our baby. The selling point to me was that she could be on the Cipro til her surgery date almost guaranteeing that she would not get another infection before that date. We got it flavored grape, praying it would be more palatable and she would tolerate it better. She will still need to get IVs, but the doctor wants them to try once she is under general anesthesia and if they still have so much trouble even when she is still, then they can consider putting in the central line while she is already in surgery. That option got us out of the hospital that day, without any more "trauma" for the baby (or mommy!).
So we finally came home about 4pm. And as the other kids were with my Mom, baby and I spent the rest of the day napping. She seems to take the Cipro OK, so I am encouraged that we will be able to have surgery on schedule. Hopefully there is no need for more blog updates til then!
Now for the "2nd worst day ever" part....
We have been using the PICC (peripherally inserted central catheter) line (that was started in the beginning of August during our second hospitalization) to administer Cailynn's antibiotics at home. It was pretty much smooth sailing, at home anyway, with the IV antibiotics. Then this past Thursday night, when I went to give her the 9pm dose, the saline flush just leaked out all over and was dripping from her arm, so I called the Home Health Care (HHC) nurse and she came out at like 10:30pm to see what was wrong and try to fix it. We had hoped it was just the connector piece that had come loose, but it wasn't. The line had a hole and was leaking. The HHC nurse called into the hospital to IV therapy and asked if there was any way to save the line and was told, no. So she called our doctor and got orders for us to go to the hospital the next morning at 10:30am to get a new PICC line put in. OK, no big deal really. We were supposed to be leaving for a long weekend in Erie, but maybe we will just leave a little later than planned, and with a brand new PICC and dressing so I'll have nothing to worry about..... or so I thought.
So Friday morning I took myself and Cailynn to the hospital and checked in to the Almost Home unit. We were told to be NPO (no more eating for the baby) after 10am. Of course, the IV therapy team was running behind, so they didn't come in til about 2pm. Before putting in the PICC, they have to start a peripheral IV to administer the sedation medication so Cailynn would not feel anything and would be calm for the PICC procedure. I was told that I was not going to be able to come with her to the treatment room when they did the PICC procedure, which I was not OK with and I made my feelings known. Eventually the IV therapist relented and said I could accompany her, but had to sit to the side during the procedure, but I could be in the room, so that was ok with me. Good thing too, because well..... it didn't go so well. Two IV therapists tried for 2 hours to get an IV started on her. They made 5 attempts where they actually put a needle in her, including one on her head!, all of them failures. At this point the poor baby had been crying for hours and hadn't eaten in 6 hours. The IV therapists were apologetic, and kept saying "this never happens." Our options were try to get orders for an oral sedation medication- which would take another 45 -60 minutes to start working, more time before she could eat. OR, we could go ahead with the PICC placement without sedation and be done in less than 45 minutes and she could be eating again. I went with the quicker route and the PICC was placed without sedation, but she was so tired from crying, that she mostly slept through the whole procedure anyway!
Finally it was done, we just needed to wait for our turn at the x-ray lab so they could check the placement of the line. So another hour wait, then x-ray, then wait for results. Results were not good. The line had curled around her shoulder so they needed to adjust it. By this time the IV therapist was not willing to keep going at this alone so she got a doctor to adjust the line and they did it under fluoroscope (a video x-ray). It took like what seemed forever and poor Cailynn screamed the whole time. It did not hurt her, but they had to hold her down and immobilize her arm, and she really hated that. My mom had come to stay with us after work so when we were done she brought us home. It was 7:30pm.
At 9pm I got her antibiotic ready but when I went to flush the line with saline, nothing happened. I could not get anything to go through the line. So I called the HHC nurse again and she called the hospital and after talking to them she recommended that I go back to the hospital and have them check it. So at 11pm I was back in the hospital. The same IV therapist had stayed past her shift to check out Cailynn's line. Long story short, she found a hole in the line and pulled it. That's 2 holes in 2 days. She said she goes 5 months and doesn't see one hole in a PICC line. Lucky, lucky us. Everything we had gone through that day and the result was NOTHING. I honestly felt something against us all day. I had prayed so hard, called all my prayer warrior friends and continued to watch my baby suffer.
The IV therapist called our doctor and we were told we needed to stay and spend the night so they could try again in the morning. At his point I finally conceded defeat and realized our little family getaway wasn't going to happen. I was broken and tired and done. At 2am the night IV therapist came to try again to get an IV started so Cailynn could get her medsmeds in the morning. But surprise, surprise! Couldn't get it! She was merciful though and only tried once, the only one left I suppose. So we went back to our room, Cailynn slept on my chest while I dozed in the chair, not really knowing what the morning would bring...
So then it was Saturday morning and as far as I knew, the plan was still to try and put in another PICC. No one wanted Cailynn or me to suffer any more. That was a huge consideration when discussing the next move, second only to her health. She needs to finish the treatment of her last infection, and we are desperately trying to keep her free of infection til her scheduled surgery.
Finally our doctor came and we started discussing our options.
1. Try another PICC. The problem was getting her sedated and that was the problem the day before. She could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection.
2. Put in a central line. That would require a visit to the operating room where a surgeon would place a catheter in a main vein near her neck or shoulder. It would be accessed at her chest and it would be in place as long as we wanted it. She would not need any more needles because they could draw blood from it, administer meds and fluids, and the anesthesiologist could use it too for her surgery next week. She would go under general anesthesia (gas) so no need to get an IV line started. Its pretty invasive for 5 more days of IV antibiotics, but I was leaning that way because of how much IV stuff she had already received and how many more times she is likely to have to have IV access in the near future. (I count 2 times in the next 10 days without counting the IV antibiotics). Again, she could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection. The doctors felt we had kinda pushed the limits of that already that day.
3. Try an oral antibiotic. The problems with oral antibiotics is that she doesn't always take them well (spit up, puke up or just push out of her mouth) and the bacteria we are fighting needs a really strong antibiotic and the doctor didn't know if there was even one we could use for such a young baby.
So we discussed this with the doctor. He went off to talk to the infectious disease doctors to see if there was something we could take orally to fight this bacteria. I was still leaning toward the central line, just because if we could do that and never have to torture her again with another IV it would be so worth it to me but Trent was more concerned about the invasiveness of it and wanted to take a more conservative route..... Then the doctor came back and proposed we put her on Cipro. It isn't indicated for babies under 1 yr old, but there are twins in the NICU who were on it because of bad infection so the infections disease doctors, the pharmacist, and our doctor felt that the drug could be used with our baby. The selling point to me was that she could be on the Cipro til her surgery date almost guaranteeing that she would not get another infection before that date. We got it flavored grape, praying it would be more palatable and she would tolerate it better. She will still need to get IVs, but the doctor wants them to try once she is under general anesthesia and if they still have so much trouble even when she is still, then they can consider putting in the central line while she is already in surgery. That option got us out of the hospital that day, without any more "trauma" for the baby (or mommy!).
So we finally came home about 4pm. And as the other kids were with my Mom, baby and I spent the rest of the day napping. She seems to take the Cipro OK, so I am encouraged that we will be able to have surgery on schedule. Hopefully there is no need for more blog updates til then!
Tuesday, August 24, 2010
so done with this...
I apoligize for not keeping you up to date. We came home after our last hospitalization with a PICC line in and directions to administer IV antibiotics. Sunday 8/15 was our last dose of IV antibiotic and the home care nurse was to come on Monday and remove the PICC line. Sunday I was looking forward to getting that thing out. By Monday at our visit to the pediatrician, I had seriously considered asking if we could keep the line in for a few weeks, in case we ended up back in the hospital. Then they wouldn't have to put in a new IV line. Call it mother's instinct or a whisper from God, but I listened.
And thankfully so. We were back in Children's Emergency on Saturday night because of fever. And no surprise, were admitted for UTI. We are now up to 3 hospitalizations in her short, 11 week life. I haven't written because I just don't know what to say anymore. Same drill really. IV antibiotics, have to stay until fever is gone for 24 hours and culture has grown. Someone coming in every other hour to poke or prod or bother Cailynn in some way. I've gone from being afraid, unsure, overwhelmed at our first stay, to an "old pro" this time. We've run into doctors and nurses from previous visits that still remember her name. Not sure if its because its only been 2 weeks since we were here last, or because she is so memorable in her cuteness!
Talked to the uroligist yesterday, and after asking my million questions that all boil down to, "Why does this keep happening?" have come to the realization that we will be back, probably in a couple more weeks, and will keep coming back until she is able to have her "big" surgery to correct her "plumbing." So more tests will be ordered...
(later......) Just heard from the nurse that we have been scheduled for an MRI at 9pm tonight, so I guess we are not going home today. She will be sedated and she will need another IV put in because they cannot put the contrast fluid through her PICC line. She also has to be NPO for 4 hours, so no more breastfeeding after 5pm. This will be rough as her fussy time is between 7-10pm. But we will make it through because we have to. I'm upset she has to have another IV line, I know how much that hurts her, but what can I do??? We just have to endure, deal with whatever comes up, and keep trusting God. Can't say its as easy as it was at first. Both Trent and I are getting emotionally worn out over the whole condition.
Thank you for being interested enough in our lives, in her life, to continue to read her blog. Thank you for your continued prayers.... don't really know what else to say....
And thankfully so. We were back in Children's Emergency on Saturday night because of fever. And no surprise, were admitted for UTI. We are now up to 3 hospitalizations in her short, 11 week life. I haven't written because I just don't know what to say anymore. Same drill really. IV antibiotics, have to stay until fever is gone for 24 hours and culture has grown. Someone coming in every other hour to poke or prod or bother Cailynn in some way. I've gone from being afraid, unsure, overwhelmed at our first stay, to an "old pro" this time. We've run into doctors and nurses from previous visits that still remember her name. Not sure if its because its only been 2 weeks since we were here last, or because she is so memorable in her cuteness!
Talked to the uroligist yesterday, and after asking my million questions that all boil down to, "Why does this keep happening?" have come to the realization that we will be back, probably in a couple more weeks, and will keep coming back until she is able to have her "big" surgery to correct her "plumbing." So more tests will be ordered...
(later......) Just heard from the nurse that we have been scheduled for an MRI at 9pm tonight, so I guess we are not going home today. She will be sedated and she will need another IV put in because they cannot put the contrast fluid through her PICC line. She also has to be NPO for 4 hours, so no more breastfeeding after 5pm. This will be rough as her fussy time is between 7-10pm. But we will make it through because we have to. I'm upset she has to have another IV line, I know how much that hurts her, but what can I do??? We just have to endure, deal with whatever comes up, and keep trusting God. Can't say its as easy as it was at first. Both Trent and I are getting emotionally worn out over the whole condition.
Thank you for being interested enough in our lives, in her life, to continue to read her blog. Thank you for your continued prayers.... don't really know what else to say....
Tuesday, August 10, 2010
Plan for the day.... GO HOME!
We don't really know what is next for her, and I didn't really want to ask yesterday. I just want to get through this experience and we will find out what is next at our next doctor visit.She spent a few hours after the procedure hooked up to monitors and IV fluids, but was off of them shortly after lunch. Thanks to friends, Mom and Dad were together for the procedure and when she returned. It was probably the most time we have spent together all week! Cailynn spend the rest of the day mostly in Mom's arms nursing and sleeping.
It seemed like last night lasted forever, but here it is, almost 6am and I am in the final countdown! I expect today to consist of long periods of boredom interrupted by bursts of flurry and activity as the different doctors and hospital people come to get everything set up for us to go home. Because of the IV antibiotics she must be on for another 10 days, we need to coordinate the home health care before we can be discharged. While I'd love to be out of here as soon as possible, I'm shooting for dinner at home.
I just want to thank those of you nearby who were able to come visit us during our stays in the hospital. I really appreciated your company and support. And to each of you who thought of us during your busy day, Thank you. It helped a lot to know we had a lot of people all over the country, and even the world, thinking of us and praying for us. I hope to not have to update this blog again soon for anything other than a doctor visit.
Sunday, August 8, 2010
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