Christmas was great. It was so nice to be home celebrating together. We had a nice dinner, played games with the kids, and just relaxed and hung out. Low key and absolutely perfect!
B is doing pretty well at home. He seems much happier and more contented. He smiles alot and has started cooing a little too. It's awesome to be able to interact with him now! A nurse from VNA comes every other day to take blood for CBC's, check his vitals, and monitor his growth. He's got a long way to go but is up to 7 pounds 14 ounces now. It's crazy to think that he is almost four months old and still wearing Newborn clothes -- such a little peanut!!
We're adjusting pretty well too I guess. Its definitely exhausting though. Right now, I'm the only one who knows 100% of his care so it's a lot of pressure. Tim is learning more and more and trying to give me a break but once he goes back to work he won't be here to help much. I'm trying to find out if B would qualify for any kind of nursing or respite care to help me out but it's tough figuring out where to start. Our pedi said maybe the hospital social worker, who said they can't help since he was now discharged and recommended we ask Early Intervention but we haven't even heard back from EI since B's referral. Frustrating! I'm sure I'll figure it out eventually.
The coming weeks will be pretty busy. Brady has transfusions 2-3 times a week, IVIG weekly, and an average of two other medical appointments a week. He is followed by surgery, lung center, hematology, feeding clinic, nutrition, developmental clinic, cardiology, and neuro & growth...basically, a small army of doctors and specialists.
On Jan 3rd he is having a clinical swallow evaluation. I'm really looking forward to it because it's the first step toward allowing him to start back on oral feedings. He has not had a bottle since the beginning of November. I miss the normalcy of snuggling my baby and feeding him his bottle. I really hope that working with the speech pathologists in the feeding clinic can get him back on track but there is a good chance he will never take a bottle and could take a very long time to learn how to eat and drink anything at all. Only time will tell I guess. I'm also hoping the swallow study will show what is going on with his reflux. Supposedly the Nissen wrap stops him from refluxing but I can definitely hear it happening still and it seems to be occurring more and more frequently. Last night he had a pretty scary episode where it seemed like he was trying to vomit (which he can't because of his nissen) and it caused him to have trouble breathing. His O2 sats dropped and he had some color change. The whole thing lasted about 8 terrifying minutes. When I called the hospital and spoke with the pulmo on call he didn't seem too concerned but he isn't B's regular doctor and doesn't really know B's complexities so I'm anxious for Dr. Sheehan to get back from vacation. I think more needs to be done to manage his GERD still and that taking him off all but one reflux med was a mistake. Guess we'll see what he thinks!
Friday, December 28, 2012
Tuesday, December 25, 2012
Saturday, December 22, 2012
Mystery Diagnosis
A while back, way back on caringbridge actually, I mentioned that the genetic lung disorder both B and Ethan have had been featured a few years ago on the TLC show "Mystery Diagnosis". Today I noticed the rerun was on so I taped it and posted it to my youtube in case any of you may want to watch it. The quality isn't the best but you get the point. Here's the link:
Mystery Diagnosis Episode
Mystery Diagnosis Episode
Wednesday, December 19, 2012
A minute to reflect
Yesterday marked three months since Brady's birth. As I sit here sipping my coffee and enjoying the quiet of our usually chaotic home I can't help but reflect on the last three months.
Awhile back, maybe a month into B's hospital stay, as I was leaving the house one night Miranda nonchalantly asked me a question that broke my heart.
She asked "Mommy, what day will I see you again?"
It wasn't a complaint. She wasn't upset. This was her new normal. She knew that Brady needed me. There was acceptance in her voice. It was that accpetance that killed me. My little girl has always come home from school to her mommy, every day. And now, she didn't even know when she would see me again.
Since Brady's birth there have been a lot of moments like that one, fleeting moments that leave my heart aching. Ethan now clings to me every minute he's home. Kristyna looks surprised every time she walks in the door and finds me here. It's still surreal to think about what our family has endured already, is dealing with now, and will continue to face in the future. Kristyna, Miranda, and Ethan have had their entire world turned upside down. They've been shuffled from house to house and person to person, and lost any sense of routine and normalcy, and yet they take it all in stride. They accept their new brother and all that comes along with him. They welcome him with open arms. Why? Because above all else we are a family. And as I tell my kids all the time. . .family is forever!
Awhile back, maybe a month into B's hospital stay, as I was leaving the house one night Miranda nonchalantly asked me a question that broke my heart.
She asked "Mommy, what day will I see you again?"
It wasn't a complaint. She wasn't upset. This was her new normal. She knew that Brady needed me. There was acceptance in her voice. It was that accpetance that killed me. My little girl has always come home from school to her mommy, every day. And now, she didn't even know when she would see me again.
Since Brady's birth there have been a lot of moments like that one, fleeting moments that leave my heart aching. Ethan now clings to me every minute he's home. Kristyna looks surprised every time she walks in the door and finds me here. It's still surreal to think about what our family has endured already, is dealing with now, and will continue to face in the future. Kristyna, Miranda, and Ethan have had their entire world turned upside down. They've been shuffled from house to house and person to person, and lost any sense of routine and normalcy, and yet they take it all in stride. They accept their new brother and all that comes along with him. They welcome him with open arms. Why? Because above all else we are a family. And as I tell my kids all the time. . .family is forever!
Saturday, December 15, 2012
68, 33 & other numbers...
33 days in ICU. . .
37 blood transfusions. . .
12/14/12. . .
1:27 pm. . .
Our Sweet Brady is FINALLY home where he belongs <3
Wednesday, December 12, 2012
It takes a village...
...or one really determined mommy!
The amount of coordinating that has gone into getting B home this week is absolutely crazy. Seriously, small countries are probably run with less effort, lol.
Yesterday the home supply company for B's oxygen was having a problem billing his insurance. They called me and said that IHA is saying Brady does not have coverage and I need to call them. So I called IHA and they told me they never received any information on Brady, didn't even know we had had a baby. Great. Turns out Tim's HR person misfiled Brady's enrollment forms and they were never submitted. I spent the entire morning on the phone with the benefits manager straightening everything out and getting him enrolled but he is officially covered under IHA, thank goodness!!
So last night the company delivered B's oxygen compressor and portable tanks. This afternoon they came and showed me how to use the compressor, the tanks, his pulse oximeter and also to go over infant CPR. I tried to set up delivery of his feeding pump & supplies and his IV pump & PICC supplies but due to crazy issues with insurance coverage they won't deliver "home care" supplies before his discharge papers are signed. So Friday will be even more hectic trying to get everything situated at home as quickly as possible. I'm nervous because B gets a continuous feed through a pump. If VNA is late delivering he will get behind on his nutrition requirements and because he's already so far behind growth wise, that's a big deal for him. Fingers crossed VNA comes when they say they will.
It's been quite a task setting him up with all of his outpatient appointments, getting all his meds filled, coordinating his homecare nursing, and all the supplies he'll need. He'll be at the hospital for blood transfusions as needed, most likely every 2-3 days, he'll get IVIG in the infusion clinic every Thursday and he'll need to be followed by: lung center, hematology, cardiology, surgery, GI, feeding clinic, neurology, hearing clinic, and early intervention -- that's A LOT of appointments! Right now, Brady is a full time job!! haha...But it will all be worth is when we get to snuggle him and all be together at home. I can't wait!
The amount of coordinating that has gone into getting B home this week is absolutely crazy. Seriously, small countries are probably run with less effort, lol.
Yesterday the home supply company for B's oxygen was having a problem billing his insurance. They called me and said that IHA is saying Brady does not have coverage and I need to call them. So I called IHA and they told me they never received any information on Brady, didn't even know we had had a baby. Great. Turns out Tim's HR person misfiled Brady's enrollment forms and they were never submitted. I spent the entire morning on the phone with the benefits manager straightening everything out and getting him enrolled but he is officially covered under IHA, thank goodness!!
So last night the company delivered B's oxygen compressor and portable tanks. This afternoon they came and showed me how to use the compressor, the tanks, his pulse oximeter and also to go over infant CPR. I tried to set up delivery of his feeding pump & supplies and his IV pump & PICC supplies but due to crazy issues with insurance coverage they won't deliver "home care" supplies before his discharge papers are signed. So Friday will be even more hectic trying to get everything situated at home as quickly as possible. I'm nervous because B gets a continuous feed through a pump. If VNA is late delivering he will get behind on his nutrition requirements and because he's already so far behind growth wise, that's a big deal for him. Fingers crossed VNA comes when they say they will.
It's been quite a task setting him up with all of his outpatient appointments, getting all his meds filled, coordinating his homecare nursing, and all the supplies he'll need. He'll be at the hospital for blood transfusions as needed, most likely every 2-3 days, he'll get IVIG in the infusion clinic every Thursday and he'll need to be followed by: lung center, hematology, cardiology, surgery, GI, feeding clinic, neurology, hearing clinic, and early intervention -- that's A LOT of appointments! Right now, Brady is a full time job!! haha...But it will all be worth is when we get to snuggle him and all be together at home. I can't wait!
Monday, December 10, 2012
Hurry up Friday!
-Orison Swett Marden
Brady's doctors say he will be able to go home Friday
(as long as he behaves himself and doesn't pull anything new this week)
This mommy is over the moon happy :) :)
Saturday, December 8, 2012
Hope
Brady has been cleared by nutrition, surgery, and respiratory to GO HOME! Hematology says they are hoping to discharge him by the end of the week!!!
He'll come home with a lot of care - G tube, PICC line & IV meds, and oxygen - and he'll need to come back here every other day to be transfused but he'd be home. I'm crying just typing this. It would be an absolutely incredible blessing to bring him home and be together as a family. If I've learned anything though, it's that nothing is set in stone. Things don't always go as planned and he may not come home this week but it is so wonderful to know it's even a possibility.
And so, I have hope.
He'll come home with a lot of care - G tube, PICC line & IV meds, and oxygen - and he'll need to come back here every other day to be transfused but he'd be home. I'm crying just typing this. It would be an absolutely incredible blessing to bring him home and be together as a family. If I've learned anything though, it's that nothing is set in stone. Things don't always go as planned and he may not come home this week but it is so wonderful to know it's even a possibility.
And so, I have hope.
Tuesday, December 4, 2012
Could it be RSV?
B started sneezing and coughing during the night Sunday night. This morning they sent out a respiratory screen and this afternoon he had a chest xray. We're keeping our fingers crossed that he just has a run of the mill cold but with it being the start of RSV season the docs are concerned. So far, he's managing okay, he's just boogery and slightly tachypnic.
He also started with some yellow discharge from his G tube site yesterday. They sent off a culture for possible infection and we're waiting for those results too.
We need to get this kiddo out of the hospital. The longer he's here the more he is exposed to and he's already so weak :(
On a positive note, since his IVIG on Thursday he has gone almost 3 days before needing a transfusion. Its still not near being under control but 3 days is certainly better than EVERY day!
He also started with some yellow discharge from his G tube site yesterday. They sent off a culture for possible infection and we're waiting for those results too.
We need to get this kiddo out of the hospital. The longer he's here the more he is exposed to and he's already so weak :(
On a positive note, since his IVIG on Thursday he has gone almost 3 days before needing a transfusion. Its still not near being under control but 3 days is certainly better than EVERY day!
Sunday, December 2, 2012
The forbidden word...
HOME.
We have been waiting 7 long long weeks to hear the doctors even mention getting B home and they finally have!
I talked with our pediatrician this week and discussed with her that we had been thinking about transferring B. She agreed with us that something needed to change. Apparently, she had been following the case all week and was planning to call us Monday to talk about the possibility of a transfer. She said that if this were her child she would be planning exactly that. She called the hospital and spoke with a few of B's hematology doctors and told them she had recommended a possible transfer and that we were seriously considering it based on the following concerns:
- His primary hematologist has not actual seen him since the week he was admitted.
- Lack of a next step plan or any sense of urgency to come up with one now that they're certain he isn't responding to corticosteroids or IVIG.
- Indifference toward his sky high ferratin levels (excess iron in his body)and the possiblity of transfusion induced iron overload.
- Failure to reach out to other hematology specialists & a perceived reluctance to work collaboratively.
- Brady's quality of life. He has spent all but 3 days of his life in a hospital. We need a plan to get him home!
Within an hour of Dr Miller contacting the doctor's here we got some results. They changed B's primary hematologist to Dr Higman, who has seen him pretty regularly since his admission. I talked with her at length about our concerns. She agreed to get in touch with ANY and AS MANY specialists as we would like and to work collaboratively with them (ie - order any tests they suggests, consider treatments they come up with, etc) to come up with a treatment plan. A ferratin level will be added to his daily labs to monitor how well the desferal is working. And, we now have a set list of goals to achieve in order to get Brady home...
-He must have completed his IV antibiotics. His cultures are negative as of 11/27 and he needs them for 10 days from that date so 12/7 will be his last day.
- He must be requiring 12 hours or less per day of TPN (hyperal & lipid nutrition though his IV) and tolerating tube feeds for a minimum of half his nutritional value. That means 10ml/hr continuous feed.
-Transfusion requirement must space out to about 48 hours between. Then we can come in every other day for outpatient transfusions.
I know it isn't a short list but its something tangible we can work toward. I'm confident we'll get there and I'm hopeful there's a possibility it will be before Christmas. To have our whole family home to celebrate together means more to us than we can put into words! I'm so glad we chose to stand up and advocate. Just the mere mention of a transfer has seemed to make a huge impact. We fully realize it may still come to that but for now, we are willing to give the doctors here another chance!
We have been waiting 7 long long weeks to hear the doctors even mention getting B home and they finally have!
I talked with our pediatrician this week and discussed with her that we had been thinking about transferring B. She agreed with us that something needed to change. Apparently, she had been following the case all week and was planning to call us Monday to talk about the possibility of a transfer. She said that if this were her child she would be planning exactly that. She called the hospital and spoke with a few of B's hematology doctors and told them she had recommended a possible transfer and that we were seriously considering it based on the following concerns:
- His primary hematologist has not actual seen him since the week he was admitted.
- Lack of a next step plan or any sense of urgency to come up with one now that they're certain he isn't responding to corticosteroids or IVIG.
- Indifference toward his sky high ferratin levels (excess iron in his body)and the possiblity of transfusion induced iron overload.
- Failure to reach out to other hematology specialists & a perceived reluctance to work collaboratively.
- Brady's quality of life. He has spent all but 3 days of his life in a hospital. We need a plan to get him home!
Within an hour of Dr Miller contacting the doctor's here we got some results. They changed B's primary hematologist to Dr Higman, who has seen him pretty regularly since his admission. I talked with her at length about our concerns. She agreed to get in touch with ANY and AS MANY specialists as we would like and to work collaboratively with them (ie - order any tests they suggests, consider treatments they come up with, etc) to come up with a treatment plan. A ferratin level will be added to his daily labs to monitor how well the desferal is working. And, we now have a set list of goals to achieve in order to get Brady home...
-He must have completed his IV antibiotics. His cultures are negative as of 11/27 and he needs them for 10 days from that date so 12/7 will be his last day.
- He must be requiring 12 hours or less per day of TPN (hyperal & lipid nutrition though his IV) and tolerating tube feeds for a minimum of half his nutritional value. That means 10ml/hr continuous feed.
-Transfusion requirement must space out to about 48 hours between. Then we can come in every other day for outpatient transfusions.
I know it isn't a short list but its something tangible we can work toward. I'm confident we'll get there and I'm hopeful there's a possibility it will be before Christmas. To have our whole family home to celebrate together means more to us than we can put into words! I'm so glad we chose to stand up and advocate. Just the mere mention of a transfer has seemed to make a huge impact. We fully realize it may still come to that but for now, we are willing to give the doctors here another chance!
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