This is Chris - I just got the word from Dr. Flake that Maya looks great and, pending the results of another x-ray, she can go home today - yipee!
I fed her 3 times last night, and she is eating great and is very alert when feeding and after for a while.
Sunday, April 29, 2007
Saturday, April 28, 2007
Maya gets drain removed - doing great!
Her chest drain tube was removed tonight, and there was immediate relief for Maya. We took her right out of the crib and Victoria held and fed her plenty and was even able to burp her with no visible discomfort to Maya. She even smiled at me when I made funny faces at her and gave her raspberry kisses.-Chris
A Good Feeding - Progress!
This is Chris - Victoria is having a much-needed rest on a fold-out chair bed next to Maya's crib.
Maya just woke up enough to gulp down 4 oz. of milk, with much less discomfort than last night. She is back to sleeping now. Her drain is starting to leak fluid around the outside of it, and not draining on the inside, so it possibly is clogged. Air is not accumulating near her lungs in X-rays however, so the docs are not concerned. The plan is to do one more X-ray this evening, and if all looks good, remove her tube. This will leave an open wound that they will cover with gauze. This wound should close up within a day.
We had an observant resident dr. notice her abdominal distension (which she has always had). They did an abdoninal x-ray and discovered a weak area of muscle wall near her belly button. They are not overly concerned, but this could lead to a hernia and will also need to be followed. It is amazing how the other doctors, who were so focused on her CCAM, missed other things going on. I love seeing a resident doctor come by, because they are so observant and pick up on things that more experienced doctors overlook. An astute resident in Hartford, present when Victoria was induced, noticed an intermittant murmur in Maya's heart, but that info was never followed up on by other doctors. That was most likely the "PDA" that they discovered on this visit.
So experience is best for operations, but for diagnoses, I recommend letting a medical resident examine a patient. They have all the conditions fresh in their minds and are open to new info.
I will be pulling Maya duty tonight while Victoria stays with Ronald. She may update www.flickr.com/photos/gorskipics from my laptop back in the RMH room. To contact her try her cell or e-mail Victoria.Gorski@gmail.com. Also videos are posted at http://video.google.com/videosearch?q=Chris+Gorski&num=10&so=1&start=0
-Chris
Maya just woke up enough to gulp down 4 oz. of milk, with much less discomfort than last night. She is back to sleeping now. Her drain is starting to leak fluid around the outside of it, and not draining on the inside, so it possibly is clogged. Air is not accumulating near her lungs in X-rays however, so the docs are not concerned. The plan is to do one more X-ray this evening, and if all looks good, remove her tube. This will leave an open wound that they will cover with gauze. This wound should close up within a day.
We had an observant resident dr. notice her abdominal distension (which she has always had). They did an abdoninal x-ray and discovered a weak area of muscle wall near her belly button. They are not overly concerned, but this could lead to a hernia and will also need to be followed. It is amazing how the other doctors, who were so focused on her CCAM, missed other things going on. I love seeing a resident doctor come by, because they are so observant and pick up on things that more experienced doctors overlook. An astute resident in Hartford, present when Victoria was induced, noticed an intermittant murmur in Maya's heart, but that info was never followed up on by other doctors. That was most likely the "PDA" that they discovered on this visit.
So experience is best for operations, but for diagnoses, I recommend letting a medical resident examine a patient. They have all the conditions fresh in their minds and are open to new info.
I will be pulling Maya duty tonight while Victoria stays with Ronald. She may update www.flickr.com/photos/gorskipics from my laptop back in the RMH room. To contact her try her cell or e-mail Victoria.Gorski@gmail.com. Also videos are posted at http://video.google.com/videosearch?q=Chris+Gorski&num=10&so=1&start=0
-Chris
Friday, April 27, 2007
Pictures of Maya post-op
Brianna look - Maya has a stegosaurus blood pressure cuff - how lucky!
Here are pictures of Maya's war wounds.
To contact Victoria please use her new E-mail address: Victoria.Gorski@gmail.com
Or for Chris the good ol' Seekerhiker@hotmail.com
She got to suck down 1.5 ounces of milk tonight like she hadn't had a drink for days - she gulped like crazy for about 1 minute, then her pain was too great so we laid her her back down (we held her up to bottle-feed) and she was given some morphine. No opening of the mouth after that.
2nd update on Maya's surgery- 9pm Friday
Victoria here... it is almost 9pm, they still haven't let Maya have milk yet. The politics of the hospital and the CYA. The NICU RNs won't do anything unless it is written in a work order from the Dr. It is interesting to watch the pecking order, lots of different RNs and MDs and which ones can actual make decisions vs. others and the conflicting information they say. Like one said a few hours after surgery she could eat, now we have to wait until after 8pm and when she is alert and wanting food.
The results of the xray showed fluid in the chest cavity, according to the NICU RN, that is normal and they are not yet concerned. They are watching for respiratory distress, which she is not displaying. The next xray will be in the morning.
I am staying at the hospital again tonight. They have a sleep room for me again and I intend to go to bed earlier tonight. Chris is staying at the Ronald McDonald House again tonight. Tomorrow night, Chris is going to have hospital duty and I will stay at the RMH.
Chris and I did manage to get out and grab a bite to eat outside the hospital tonight. We ate at a whole in the wall Indian restaurant. There were a lot of security guards on the UPENN campus tonight. We think there is a big sporting event or something going on. They were searching one man's suitcase outside one of the other hospitals... strange. But it was nice to be out of the hospital and spending some time focusing on something else for a while.
Next update tomorrow morning...
The results of the xray showed fluid in the chest cavity, according to the NICU RN, that is normal and they are not yet concerned. They are watching for respiratory distress, which she is not displaying. The next xray will be in the morning.
I am staying at the hospital again tonight. They have a sleep room for me again and I intend to go to bed earlier tonight. Chris is staying at the Ronald McDonald House again tonight. Tomorrow night, Chris is going to have hospital duty and I will stay at the RMH.
Chris and I did manage to get out and grab a bite to eat outside the hospital tonight. We ate at a whole in the wall Indian restaurant. There were a lot of security guards on the UPENN campus tonight. We think there is a big sporting event or something going on. They were searching one man's suitcase outside one of the other hospitals... strange. But it was nice to be out of the hospital and spending some time focusing on something else for a while.
Next update tomorrow morning...
Maya came out of surgery doing great!
This is Victoria. Maya was finished with surgery at 3:45pm. The surgeon met with us and told us the surgery went very well. He was able to complete it laproscopically vs. opening her up. He told us that the tumor was actually on her middle right lobe vs. her lower right lobe as they had originally thought. He said the tumor was large and hanging down blocking the view of the good lower lobe. So Maya's upper lobe and lower lobe will grow and fill in the space where the middle lobe would have been. They said there was no issue/complications from the cardiac issues (see previous blog on PDA/PFO issues).
Next steps... Maya currently has a chest tube in which has suction on to drain any fluid and/or air in her chest cavity. Later tonight they will do an xray of the chest with the tube in to see if there is any fluid or air in the chest cavity. Tomorrow if all is going well, they will remove the chest tube and do another xray to ensure there is no air and/or fluid in her chest cavity. She is currently on IV fluids and may be able to have milk tonight. They are monitoring her and if she is fussing, they will give her a bolus dosage of morphine for pain. Right now she is not fussing and is probably still on the pain drugs from surgery. They are also giving her humidified oxygen via a tube on her nose to help with the dryness in her throat from where the breathing tube was. We do not yet have an estimated discharge date yet. We will know more after the chest tube is out. We do know that they want her on antibiotics until Sunday as a precaution for the PDA/PFO as well as the chest tube.
If we get news from the xray before too late tonight, we will do another blog update today. Otherwise our next update will be tomorrow. That is unless Chris feels inspired to add on to the above ;-)
Thank you to all for your healing and prayers... they worked!
Love you all
Victoria and Chris
Next steps... Maya currently has a chest tube in which has suction on to drain any fluid and/or air in her chest cavity. Later tonight they will do an xray of the chest with the tube in to see if there is any fluid or air in the chest cavity. Tomorrow if all is going well, they will remove the chest tube and do another xray to ensure there is no air and/or fluid in her chest cavity. She is currently on IV fluids and may be able to have milk tonight. They are monitoring her and if she is fussing, they will give her a bolus dosage of morphine for pain. Right now she is not fussing and is probably still on the pain drugs from surgery. They are also giving her humidified oxygen via a tube on her nose to help with the dryness in her throat from where the breathing tube was. We do not yet have an estimated discharge date yet. We will know more after the chest tube is out. We do know that they want her on antibiotics until Sunday as a precaution for the PDA/PFO as well as the chest tube.
If we get news from the xray before too late tonight, we will do another blog update today. Otherwise our next update will be tomorrow. That is unless Chris feels inspired to add on to the above ;-)
Thank you to all for your healing and prayers... they worked!
Love you all
Victoria and Chris
Maya has gone in for surgery- 11:30am
Just a quick update to share that Maya has just been wheeled in for surgery. She had a bit of a rough night last night according to the nurse, she cried a lot. (I went and slept in a sleep room from 1am-7am) They stopped letting me feed her at midnight.
We expect her to be out of surgery anytime between 1:30pm- 4:30pm. Once we get word, we will update the blog. They have PC access in the NICU for families, so since she will be recovering in the NICU, we will be near enough the PC to give an update.
Please send healing and prayers. Thanks.
Victoria and Chris
We expect her to be out of surgery anytime between 1:30pm- 4:30pm. Once we get word, we will update the blog. They have PC access in the NICU for families, so since she will be recovering in the NICU, we will be near enough the PC to give an update.
Please send healing and prayers. Thanks.
Victoria and Chris
Thursday, April 26, 2007
Day before surgery in Philly
Chris and I arrived in Philly yesterday late afternoon (Wednesday). We were fortunate to be able to stay at the Ronald McDonald House of Philadelphia. What an amazing place. Over 300 volunteers and almost everything donated. It is the first Ronald McDonald house and it is housed in a mansion donated by a 19th century newspaper mogel. We met a woman there who spent more of the last 9 years of her daughter's life at the Ronald McDonald House than at her own home 3 hours away, because her daughter has needed intensive treatments at the Children's Hospital of Philadelphia. Without the support of the house and it's services at $15 per night, she would be bankrupt with nowhere else to stay to be close to her daughter. They offer free food, drinks, game rooms, arts and craft classes for kids, internet access, transportation to and from the hospital, wash facilities and supplies, all for that minimal fee. And to answer your question, no you do not get happy meals or fries there, only healthy food!
Chris typing here now - Victoria is in the NICU with Maya and her friend from Philadelphia visiting while I keep our place at this public PC. Maya has had a rough day. They had to sedate her for a CT scan with contrast, and they had to stick her 4 times to get a good vein. Just like her father - weak veins that hide, poor kid. Dr. Flake (the surgeon) discussed the game plan with us this afternoon after receiving the images. He said the CCAM is approximately the same size as pre-natally, and occupies the 3rd lobe of the right ling, but rests/is attached to the diapraghm on the right size. He reiterated the importance of removing this type of CCAM, because in the case of the type that rests against the diaphragm, it has a possibility of filling with fluid and bursting later in life, which would instantly collapse her right lung.
The Dr. told us that one of two operative procedures would be used. Ideally, he will go in thorascopically (basically a laparoscope that goes into the lung area) and carefully remove the CCAM via two small incisions that avoid cutting muscles between her ribs. This type of operation is delicate and takes 4 hours or more, but results in the least pain for Maya. If he decides early on in the surgery that the removal is too complicated by the CCAM's attachment level to the good lung tissue, he will switch to an "open" procedure, in which he cuts the muscle tissue between the ribs for more working room and pulls the lung partially out of her chest to work on it. During the surgery she will be sedated to the point that her lungs will deflate, and a breathing tube will be guided into her left lung for a machine to maintain breathing for her. The open procedure is faster, and is a 2-hour operation.
After the operation, a tube is inserted into her chest cavity to monitor for air leaking from the right lung. When the lung is declared sealed (usually one or two days...) they will release her...
At least that was the plan until we heard from a cardiologist later while we were in the NICU with Maya. She told us she did an angiogram of Maya's heart and discovered that she has a "PDA" (Patent Ductus Arteriosus ) as well as a "PFO" (Patent Foramen Ovale) , both conditions which are usually resolved at birth or soon thereafter. PDA is the more serious of the two. These are sometimes nothing to worry about and the PDA when monitored may close by age one or two, or it may need surgery. They will now be monitoring her VERY closely during the CCAM surgery and after, looking for signs of fluid buildup out side of the lungs. She may need to stay longer for monitoring. If there are signs of distress due to the pressure buildup on the top of the heart due to the PDA, they may need to inject her with medicine to close the PDA or even do open-heart surgery. If nothing is done during this visit, we will need to follow up with a cardiologist to closely monitor the condition. It is stressful because the cardiologist could not give us a prognosis or a timetable, like the nice if/then scenarios we were given for the CCAM.
Victoria here again. I will be staying with Maya in the hospital tonight. Should be interesting since they are saying no feedings after midnight and maybe surgery at 7am. That is a LONG time for Maya with no food and she will be VERY CRANKY! Maybe they will change their minds when she is screaming for a long time.
So needless to say we are exhausted and with the new cardiac information, a little stressed. We will be doing our next update post surgery...
Chris typing here now - Victoria is in the NICU with Maya and her friend from Philadelphia visiting while I keep our place at this public PC. Maya has had a rough day. They had to sedate her for a CT scan with contrast, and they had to stick her 4 times to get a good vein. Just like her father - weak veins that hide, poor kid. Dr. Flake (the surgeon) discussed the game plan with us this afternoon after receiving the images. He said the CCAM is approximately the same size as pre-natally, and occupies the 3rd lobe of the right ling, but rests/is attached to the diapraghm on the right size. He reiterated the importance of removing this type of CCAM, because in the case of the type that rests against the diaphragm, it has a possibility of filling with fluid and bursting later in life, which would instantly collapse her right lung.
The Dr. told us that one of two operative procedures would be used. Ideally, he will go in thorascopically (basically a laparoscope that goes into the lung area) and carefully remove the CCAM via two small incisions that avoid cutting muscles between her ribs. This type of operation is delicate and takes 4 hours or more, but results in the least pain for Maya. If he decides early on in the surgery that the removal is too complicated by the CCAM's attachment level to the good lung tissue, he will switch to an "open" procedure, in which he cuts the muscle tissue between the ribs for more working room and pulls the lung partially out of her chest to work on it. During the surgery she will be sedated to the point that her lungs will deflate, and a breathing tube will be guided into her left lung for a machine to maintain breathing for her. The open procedure is faster, and is a 2-hour operation.
After the operation, a tube is inserted into her chest cavity to monitor for air leaking from the right lung. When the lung is declared sealed (usually one or two days...) they will release her...
At least that was the plan until we heard from a cardiologist later while we were in the NICU with Maya. She told us she did an angiogram of Maya's heart and discovered that she has a "PDA" (Patent Ductus Arteriosus ) as well as a "PFO" (Patent Foramen Ovale) , both conditions which are usually resolved at birth or soon thereafter. PDA is the more serious of the two. These are sometimes nothing to worry about and the PDA when monitored may close by age one or two, or it may need surgery. They will now be monitoring her VERY closely during the CCAM surgery and after, looking for signs of fluid buildup out side of the lungs. She may need to stay longer for monitoring. If there are signs of distress due to the pressure buildup on the top of the heart due to the PDA, they may need to inject her with medicine to close the PDA or even do open-heart surgery. If nothing is done during this visit, we will need to follow up with a cardiologist to closely monitor the condition. It is stressful because the cardiologist could not give us a prognosis or a timetable, like the nice if/then scenarios we were given for the CCAM.
Victoria here again. I will be staying with Maya in the hospital tonight. Should be interesting since they are saying no feedings after midnight and maybe surgery at 7am. That is a LONG time for Maya with no food and she will be VERY CRANKY! Maybe they will change their minds when she is screaming for a long time.
So needless to say we are exhausted and with the new cardiac information, a little stressed. We will be doing our next update post surgery...
Tuesday, April 03, 2007
Latest news
Well I just typed a a huge blog entry then lost it - so here it is again in a condensed version:
Maya is doing great, her eyes are turining from grey-blue to hazel-brown, and she maintains some eye contact now. She weighs close to 10 lbs and has a voracious appetite. She is awake more of the time and is pretty content just looking around, except when she is grunting and groaning with bowels trying to work.
Victoria had to go in last week for removal of a piece of retained placenta. She needed to stay overnight but lost less blood that with Brianna, and did not need a transfusion.
Brianna is very loving to her sister. Last night she was "reading" a story to her and she often explains to her what things are. Very cute.
Her operation date has been upped to April 27 by Philadelphia, so hopefully that will not be an issue for me to be gone for a few days by my new employer, the CT DEP at which I start on April 13.
All for now...
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