Monday, September 30, 2013
Outside!
We went to the park today. We had the place to ourselves and Muriel loved it! Madeline stayed home, as she had a stomach bug and woke up vomiting at 6am. We have had her in quarantine and she ate two meals for dinner tonight...I think she's better now. ;)
Super Muriel run
Some of our humongous support system ran/walked to support Muriel this week in the Plainfield 5K. YOU ARE AMAZING, thank you!!!
Thursday, September 26, 2013
Suuuper Muriel
Thank you to everyone participating (and the over achieving runners :)) in the Plainfield 5k on Sunday to show your support for Muriel!!! We loooove our Super Muriel shirts and can't wait to see pictures of all of you wearing them! Jeff will see you there. You are truly the kindest, most thoughtful friends we could ask for. Thank you, thank you, thank you!!!
Home!
What a very long day. Its Wednesday (well technically Thursday morning) - a day earlier than Dr. Sajan expected us to leave as of this past weekend. I was gone all day Tuesday and Dr. Nater actually wanted to discharge us then. We appealed for one more night - mainly so I could be there to help get her ready and everything packed up, but also because we are both still a little unsure about her oxygen saturation levels.
She is still on 1Lpm of oxygen, which really isn't much, but without it she drops pretty low - into the 70s. The target according to Dr. Sajan is 85%. So we went home with an oxygen tank. On arrival we found that the oxygen company had delivered a whole room full of tanks and a large machine that somehow produces close to 100% oxygen flow from air, with a 50 foot nylon (?) tube. I'm dying to understand how that works.
We are also squeamish about her weight. When we arrived a month ago she weighed close to 10Kg. On checkout she weighed 8.2Kg. Close to a 20% weight loss! Wouldn't mind that myself, but on her it makes her look like skin and bones. We know she is on heavy diuertics, and we can blame most of it on water loss, but also that she hasn't been eating well. Then the vomiting of her meds and anything she did manage to eat. We were assured that all of these things would suddenly, magically, appear to resolve themselves when we get her out of the hospital atmosphere.
I'm happy to say that it already seems to be the case. I made some of her favorite (fat, vitamin K, and egg free) pasta and tomato sauce, and she ate like a horse tonight. She crawled around on the floor after her sisters - tethered by the 50ft tubing - and seemed to be in a state of shock that she was home. Megan's phone is still trying to upload the pics - perhaps will be online sometime tonight or tomorrow.
I'm off to bed, but will post more tomorrow about our insurance nightmare. Should serve as a warning to any Fontan candidate parents following our story. I'll include her medication schedule which we have to manage.
VERY happy to be home, and can report that Muriel is sleeping soundly in her own bed. She still has a pulse oximeter tied to her toe, a nasal cannulus for the oxygen, and an Ng tube for meds, but compared to the multitude of things hanging off of her in the past few weeks, she must be relieved.
She is still on 1Lpm of oxygen, which really isn't much, but without it she drops pretty low - into the 70s. The target according to Dr. Sajan is 85%. So we went home with an oxygen tank. On arrival we found that the oxygen company had delivered a whole room full of tanks and a large machine that somehow produces close to 100% oxygen flow from air, with a 50 foot nylon (?) tube. I'm dying to understand how that works.
We are also squeamish about her weight. When we arrived a month ago she weighed close to 10Kg. On checkout she weighed 8.2Kg. Close to a 20% weight loss! Wouldn't mind that myself, but on her it makes her look like skin and bones. We know she is on heavy diuertics, and we can blame most of it on water loss, but also that she hasn't been eating well. Then the vomiting of her meds and anything she did manage to eat. We were assured that all of these things would suddenly, magically, appear to resolve themselves when we get her out of the hospital atmosphere.
I'm happy to say that it already seems to be the case. I made some of her favorite (fat, vitamin K, and egg free) pasta and tomato sauce, and she ate like a horse tonight. She crawled around on the floor after her sisters - tethered by the 50ft tubing - and seemed to be in a state of shock that she was home. Megan's phone is still trying to upload the pics - perhaps will be online sometime tonight or tomorrow.
I'm off to bed, but will post more tomorrow about our insurance nightmare. Should serve as a warning to any Fontan candidate parents following our story. I'll include her medication schedule which we have to manage.
VERY happy to be home, and can report that Muriel is sleeping soundly in her own bed. She still has a pulse oximeter tied to her toe, a nasal cannulus for the oxygen, and an Ng tube for meds, but compared to the multitude of things hanging off of her in the past few weeks, she must be relieved.
Tuesday, September 24, 2013
Outside!
We were outside for about an hour yesterday afternoon. Muriel soaked up some rays and even stood and attempted to walk (with assistance)!
Monday, September 23, 2013
Oxygen
Looks like we are going home Tuesday or Wednesday of this week! We will be dragging an oxygen tank with us though. Unfortunately Muriel is not able to keep her oxygen saturation up without oxygen support. So she will be hauling a giant tank around, or rather I will be following her around with it!
Boo-boo
Muriel's wrist from the IV... :( It is out now. All that remains is her PICC line and her arterial line.
Sunday, September 22, 2013
Officially three weeks in the hospital
Three weeks ago today we drove Muriel to the hospital at Dr. Shetty's orders. It seems more like three months. But we are nearing the end.
Yesterday her left chest tube was taken out, and the x-ray this morning showed no fluid. Thank goodness! Today the IV in her right arm was taken out, so she has use of both hands again. Her nitric oxide (a mix in her oxygen to keep her blood vessels dilated) has been slowly weened over the past 24 hours, and sometime tonight should be gone. A giant machine is involved in the NO mix, which has kept her from being able to take any more wagon rides. She has been on milrinone since Tuesday for the same reason - to dilate blood vessels - which has kept her from going downstairs to the main floor (not sure why they don't want you to be on the main floor on this drug, but that is my understanding). We have been slowly weening the milrinone as well, and expect to be off of it by tomorrow.
She has been getting IV heparin to anti-coagulate her blood (to avoid the blood clot issue we discovered in her artificial fontan vessel). That will be replaced by cumadin, which we will be going home on, presumably for life (or until they can find something better). She got her second dose of cumadin today and have been weening off the heparin. Expect to be off heparin tomorrow.
She still has the arterial line in her leg and the double access line in her left arm, and the Ng tube for giving oral meds (that has made a world of difference in her vomiting, and as a result her sodium levels are now normal). Oral meds are still fairly plentiful - some diuretics (which will continue at home for a few months), some to protect her stomach and intestines (saw some blood in her vomit, and suspect she is having stomach troubles), various electrolyte supplements. All are needed less and less though, as we get closer to getting out of here.
As for her clinical state, she is almost back to the little girl we brought in here three weeks ago. She gives the doctors dirty looks, throws her toys off the bed, and is able to point and yell for the things she wants. She *really* wants out of the bed, and was even standing for a few minutes last night (a bit shaky though).
Its starting to look like Tuesday could be the day we get discharged, which is good and bad. As Megan mentioned my grandfather passed away this week, and the funeral is Tuesday. I have family flying in today and tomorrow - will be a very busy week. Megan may have to get packed up without me here, though either her mother or sister will likely be able to help.
We should know more tomorrow as meds stop and we see how she does. It is just as likely that they will want to keep her a day or so more. We want to desperately avoid having to bring her back here, which I understand is common for children completing the Fontan. Hoping our "return" visit was built into this extended stay already.
Will keep posting even after we get home, as I am hoping this will serve as a log for before, during, and after our Fontan experience, such that other parents going through this know what they might expect to go through.
 |
| High fashion |
She has been getting IV heparin to anti-coagulate her blood (to avoid the blood clot issue we discovered in her artificial fontan vessel). That will be replaced by cumadin, which we will be going home on, presumably for life (or until they can find something better). She got her second dose of cumadin today and have been weening off the heparin. Expect to be off heparin tomorrow.
She still has the arterial line in her leg and the double access line in her left arm, and the Ng tube for giving oral meds (that has made a world of difference in her vomiting, and as a result her sodium levels are now normal). Oral meds are still fairly plentiful - some diuretics (which will continue at home for a few months), some to protect her stomach and intestines (saw some blood in her vomit, and suspect she is having stomach troubles), various electrolyte supplements. All are needed less and less though, as we get closer to getting out of here.
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| Sleeping on mommy's lap |
Its starting to look like Tuesday could be the day we get discharged, which is good and bad. As Megan mentioned my grandfather passed away this week, and the funeral is Tuesday. I have family flying in today and tomorrow - will be a very busy week. Megan may have to get packed up without me here, though either her mother or sister will likely be able to help.
We should know more tomorrow as meds stop and we see how she does. It is just as likely that they will want to keep her a day or so more. We want to desperately avoid having to bring her back here, which I understand is common for children completing the Fontan. Hoping our "return" visit was built into this extended stay already.
Will keep posting even after we get home, as I am hoping this will serve as a log for before, during, and after our Fontan experience, such that other parents going through this know what they might expect to go through.
Saturday, September 21, 2013
Turned the corner and headed down the street!
Muriel's blood cultures are NOT growing! We won't have a definite negative for 5 days, but as Dr. Penk told us last night, the results they get "excited" about come back relatively quickly and are treated agressively. If she does have a positive result in the next few days, they will simply administer antibiotics. In summation, no blood infection so far!
Muriel hasn't been interested in food this morning and what we did get in-3 grapes- she gagged but kept down. This could be due to the NG tube. Things are definitely going well and she is getting her last chest tube out today! Coumadin will also begin again tonight, which will take around 3 days to get the dose correct. This means we could be going home as soon as Tuesday! Sadly, Jeff lost his grandpa and the funeral is also on Tuesday in Polo, IL.
Friday, September 20, 2013
New toy!
Muriel and daddy put a fun new toy together today. The child life department here at Hope is phenomenal and generous!
NG for me :(
After vomiting countless times, Muriel got a feeding tube inserted today. I am actually glad. Watching her vomit after every medication- especially sodium supplements- is heart wrenching. We are used to the NG tube, as she had it from birth to 4 months. It (hopefully) won't be coming home with us.
Thank Goodness for Insurance!
So thankful for insurance. Muriel's trip to the cardiac Cath lab on August 20th was billed as $38,000. This does not include the doctor bills from the cardiologist or anesthesiologist or the stay in the hospital after!
Fever
Last night around 10 pm Muriel spiked a 102.6 fever. Dr. VanBergen was on and ordered a blood culture. She needed a sample out of her PICC line and out of her blood stream. This meant another blood draw and needle prick. The arterial line and other IV couldn't be used since there is a chance that an infection could be in the lines, not in her blood. The blood was sent to the lab to see if any bacteria grow in a petri dish. We were with her until 3am when we finally needed to sleep. When we arrived at 9am, she was just waking up and again had a fever, just 100.8. She vomited all her 9 am meds. She had a catheter to extract some urine in case the fevers are due to a UTI (doubtful). With the catheter she got Ativan her anti anxiety drug. With that came some cooing and smiling, much to mom's delight. Dr.Sajan also heard her and came to listen and laugh along. Grandma and Aunt Kate are here now to visit and Muriel is taking her afternoon nap. So far, no goobers in the petri dish!
Thursday
Yesterday during the day was a pretty good day! Muriel played, had a visit from the music therapist, and ate pickles and olives. Both are high sodium foods, but oops the olives had fat! Dr. Sajan said Muriel "has turned the corner". Woo hoo!
Thursday, September 19, 2013
3rd day post-op
Things are definitely starting to look up for little Muriel. She lost her right side chest tube this morning, after a night of very little drainage. The left side is also nearly dry, but will stay for at least another day. She was awake most of the morning and did a good job eating. She is talking and seeming more herself. I've been out of the room most of the day trying to catch up on some work, so am missing some details at the moment. I'll post again tonight. Just don't want folks to think we have forgotten them. Seems quite a few people are following progress this way, and I can't be letting you down!
Wednesday, September 18, 2013
2nd night post-op
Another fairly quiet day here at Advocate Children's Hospital, PSHU, bed 9. Muriel again slept most of the day, but when awake much more alert. Her chest tube drainage is *way* down. Dr. Ilbawi mentioned we may remove one of them tomorrow. The fluid is also very clear. There seems to be no sign of the milky "Chyle" we were concerned with last week, though we will continue the no-fat diet anyway, just to be safe. Literally *anything* we can do to avoid her accumulating fluid again we will be doing.
Muriel ate well this evening for the first time in several weeks. We were able to get some chicken breast, rice, yogurt, and a (very) little bit of mashed potatoes to go down without coming back up, in addition to a very salty (!) bit of applesauce. I tried to hide the sodium supplement in the mashed potatoes again, which worked last night, but she would have none of it tonight. Why she would eat salty applesauce instead I have absolutely no idea.
She has become constipated again. Poor nurse Sarah was again interrupted during her dinner (!) to utilize her, umm, small fingers for a task suited well for them. That was successful, but we are now back on softeners to help out while her diuretics are up again.
Muriel got an "echo" (ultrasound) test today and all her plumbing was pronounced working in good order. Dr. Sajan was very happy with it in fact.
All in all it was a good day, and I do believe we can say she has "turned the corner" - an actual quote from Dr. Sajan, who I don't believe would say such a thing without truly believing it. I think we will start seeing a number of things shut down and removed tomorrow.
I realized just now that every picture of Muriel for the past several days, though cute, are all of her passed out. We will endeavor to get a picture of her awake and post it tomorrow. Sorry I haven't added many pictures to my posts lately. My poor phone, which was inadvertently soaked in red wine several weeks ago, is really on its last legs. Basically reliant on Megan's phone for pics, which is why you have seen her posting them lately. Works for me.
Muriel ate well this evening for the first time in several weeks. We were able to get some chicken breast, rice, yogurt, and a (very) little bit of mashed potatoes to go down without coming back up, in addition to a very salty (!) bit of applesauce. I tried to hide the sodium supplement in the mashed potatoes again, which worked last night, but she would have none of it tonight. Why she would eat salty applesauce instead I have absolutely no idea.
She has become constipated again. Poor nurse Sarah was again interrupted during her dinner (!) to utilize her, umm, small fingers for a task suited well for them. That was successful, but we are now back on softeners to help out while her diuretics are up again.
Muriel got an "echo" (ultrasound) test today and all her plumbing was pronounced working in good order. Dr. Sajan was very happy with it in fact.
All in all it was a good day, and I do believe we can say she has "turned the corner" - an actual quote from Dr. Sajan, who I don't believe would say such a thing without truly believing it. I think we will start seeing a number of things shut down and removed tomorrow.
I realized just now that every picture of Muriel for the past several days, though cute, are all of her passed out. We will endeavor to get a picture of her awake and post it tomorrow. Sorry I haven't added many pictures to my posts lately. My poor phone, which was inadvertently soaked in red wine several weeks ago, is really on its last legs. Basically reliant on Megan's phone for pics, which is why you have seen her posting them lately. Works for me.
2nd morning post-op
First of all my apologies for not posting yesterday. I simply needed a break. It was a very quiet day actually - Muriel slept most of it, waking up for a few minutes at a time to get a drink, cough up some phlegm, or express her disdain at having so many things tieing her to the bed, again.
This morning not much has changed. No pumps off yet, no tubes gone yet. Her latest xray, as of early this morning, shows her left lung a little worse than yesterday. Some fluid accumulation (which I don't quite understand, given the chest tube is there), and the lung overall is hazy. Left side chest tube output is still pretty high - over 200ml yesterday. Other than noting it the staff didn't seem overly concerned. Dr. Sajan made a point to tell me that they don't expect the drainage to stop for another few days, and not to worry.
She was awake when I arrived just after 8AM, and coughing. She has had this cough since surgery - seems she can't quite get rid of some congestion in her upper airways. The coughing clearly hurts her, and is painful to watch. After sleeping she tends to cough for a few minutes and is then better, and is ready to eat or drink something. Mainly clear liquids so far, though I did manage to get some rice and HEAVILY salted mashed potatoes (yup - sodium levels are starting to freefall again) into her, and some yogurt this morning.
She is still sedated round the clock. Drugs this time 'round are phenobarbitol and loritab (basically tylenol with codine). She isn't quite as out of it as she was with the atavan, but she is certainly sleeping a lot.
Other than the congestion, the sodium levels, and the darn chest tube drainage she looks very good, according to the staff. Its still pretty early after surgery, and I think it is hard to keep that in mind, given that we have been here nearing three weeks. I wouldn't have expected her to be packed and ready to go two days after her last surgery, so I have to keep reminding myself that she needs a bit of time to recover. Mentally this is really so hard - I'm drained.
She is supposed to get her foley catheter out today, so lets hope this is the start of seeing lots of things disappear, again. I'll take a pic when it happens and post later today.
This morning not much has changed. No pumps off yet, no tubes gone yet. Her latest xray, as of early this morning, shows her left lung a little worse than yesterday. Some fluid accumulation (which I don't quite understand, given the chest tube is there), and the lung overall is hazy. Left side chest tube output is still pretty high - over 200ml yesterday. Other than noting it the staff didn't seem overly concerned. Dr. Sajan made a point to tell me that they don't expect the drainage to stop for another few days, and not to worry.
She was awake when I arrived just after 8AM, and coughing. She has had this cough since surgery - seems she can't quite get rid of some congestion in her upper airways. The coughing clearly hurts her, and is painful to watch. After sleeping she tends to cough for a few minutes and is then better, and is ready to eat or drink something. Mainly clear liquids so far, though I did manage to get some rice and HEAVILY salted mashed potatoes (yup - sodium levels are starting to freefall again) into her, and some yogurt this morning.
She is still sedated round the clock. Drugs this time 'round are phenobarbitol and loritab (basically tylenol with codine). She isn't quite as out of it as she was with the atavan, but she is certainly sleeping a lot.
Other than the congestion, the sodium levels, and the darn chest tube drainage she looks very good, according to the staff. Its still pretty early after surgery, and I think it is hard to keep that in mind, given that we have been here nearing three weeks. I wouldn't have expected her to be packed and ready to go two days after her last surgery, so I have to keep reminding myself that she needs a bit of time to recover. Mentally this is really so hard - I'm drained.
She is supposed to get her foley catheter out today, so lets hope this is the start of seeing lots of things disappear, again. I'll take a pic when it happens and post later today.
Steady as she goes...
Muriel has been resting comfortably today and tonight. She has a fair amount of congestion in her lungs that she needs to cough up, but she has pain when she coughs from her incision so she does not enjoy coughing. Hopefully she will get it out to avoid suction, which I know she will hate. Her sodium is at 128 and needs to go up. Jeff fed her a few bites of mashed potato with sodium supplement on top. I think that went down better than salty applesauce. Duh, huh? She is on higher doses of heparin to thin her blood and avoid clotting until Coumadin can get started. All together a pretty good day.
Tuesday, September 17, 2013
Monday, September 16, 2013
First night post-op... again!
Muriel was not too happy when she woke up. She was extremely dry, her throat was hoarse and raw, and now she has lines in both arms, somewhat precluding the use of both hands. As before, we had to wait for her stomach and intestines to "wake up" before feeding her anything or letting her drink anything. This takes time though luckily it is directly proportional to the amount of time she spent under anesthesia, which for this surgery was short.
By the time the doctors came for rounds early this evening - around 5:30PM - she was hoarsely crying and pointing at the fridge and sink. Dr. Penk took pity and let her have 2 ounces of Pedialyte. That made her happy for all of ten seconds. Her poor nurse (Tracey) was being hounded by the surgeons and then the doctors about her sedatives, all thinking she had forgotten to give them. She has built up quite a tolerance!
Nurse Tracey came up with the idea of Italian Ice, which we could give her slowly and drag out the happiness. Megan started spoon feeding it to her around 6PM and I finished giving it to her at 6:30PM. Not bad for 3 ounces! She was extremely happy, and after crying for another ten minutes fell asleep. She has been sleeping ever since... it is 11PM now and I am starting to think she is down for the night.
She is now approved for applesauce, yogurt, and whatever else she wants to drink. Dr. Penk has decided that tonight she can cheat on her fluid allowance, and that we will start in ernest again tomorrow morning. But she is sleeping! If only she knew what a deal she was missing.
I think we will probably give up soon and try to get some sleep tonight. Yet another emotional day here, and we are both exhausted, again. I really think - as do all the staff here - that she will feel much better tomorrow. All signs seem to point to a speedy recovery. Its hard to keep my hopes up after having them dashed over and over again the past two weeks. Regardless their confidence, as usual, is convincing. Fingers crossed.
By the time the doctors came for rounds early this evening - around 5:30PM - she was hoarsely crying and pointing at the fridge and sink. Dr. Penk took pity and let her have 2 ounces of Pedialyte. That made her happy for all of ten seconds. Her poor nurse (Tracey) was being hounded by the surgeons and then the doctors about her sedatives, all thinking she had forgotten to give them. She has built up quite a tolerance!
Nurse Tracey came up with the idea of Italian Ice, which we could give her slowly and drag out the happiness. Megan started spoon feeding it to her around 6PM and I finished giving it to her at 6:30PM. Not bad for 3 ounces! She was extremely happy, and after crying for another ten minutes fell asleep. She has been sleeping ever since... it is 11PM now and I am starting to think she is down for the night.
She is now approved for applesauce, yogurt, and whatever else she wants to drink. Dr. Penk has decided that tonight she can cheat on her fluid allowance, and that we will start in ernest again tomorrow morning. But she is sleeping! If only she knew what a deal she was missing.
I think we will probably give up soon and try to get some sleep tonight. Yet another emotional day here, and we are both exhausted, again. I really think - as do all the staff here - that she will feel much better tomorrow. All signs seem to point to a speedy recovery. Its hard to keep my hopes up after having them dashed over and over again the past two weeks. Regardless their confidence, as usual, is convincing. Fingers crossed.
In recovery
Muriel is in recovery with the breathing tube removed. Dr El Zein just came in to tell us that everything was fine. With the fenestration (an open hole between the artificial vessel and her right atrium) her saturation levels, granted while on oxygen, are around 90%. Pressure gradient across her now completely open ASD (in essence she has a single atrium now) is now zero, which is good. There is still a gradient over her pulmonary vein (hope I am getting this right) due to surgery. They will keep a watch on it, but he believes this will go away or not be an issue.
During the fenestration procedure they discovered clotting in the artificial vessel. That's pretty scary. Had they become loose they could have lodged anywhere, including occluding the vessel itself. She will go on a higher dose of Heparin in a few hours (once they are sure there is no bleeding) to avoid this happening again. This is the main reason we will be on cumadin and aspirin when we go home.
Ok - we are ready to go in to see her...
During the fenestration procedure they discovered clotting in the artificial vessel. That's pretty scary. Had they become loose they could have lodged anywhere, including occluding the vessel itself. She will go on a higher dose of Heparin in a few hours (once they are sure there is no bleeding) to avoid this happening again. This is the main reason we will be on cumadin and aspirin when we go home.
Ok - we are ready to go in to see her...
Closing and heading to recovery
Nurse came in about fifteen minutes ago to announce that she is being closed up and will be in recovery shortly. We should be able to see her soon. Don't have any additional information yet, but wanted to let everyone know that she is fine and will send pics soon.
Mid-op update
Muriel is now off the bypass machine and being measured to see how the effectiveness of this very quick operation (we were told the actual surgery itself would only be ten minutes long). If all is well they will close up and she will be off to recovery. If not they will perform the fenestration I mentioned earlier. If she has it her oxygen saturation level will be slightly lower for a time (though still far higher than when we arrived two weeks ago). At some later point she would then have a catheter procedure to close the fenestration and her Fontan would again be "complete".
If she does need the fenestration it only adds a few more minutes to the operation, and she need not go back on the bypass machine. She did get intubated for this surgery, but the anesthesiologist promised that his top post-op priority would be to let her go the recovery room without the breathing tube. Her poor throat will be raw again for a day or two.
She did get another femoral arterial line to continuously monitor blood pressure. She got another IV line in her wrist for drug delivery. Her PICC line from yesterday stayed and played a role in the surgery, so that was at least convenient. She got another chest drain tube, through the same hole that was just closed (trying at least to minimize scarring). She did NOT get another femoral venous line, mainly because the PICC was in place.
Just waiting at this point for her to be transferred to recovery and then back to the PSHU. We will keep our same room. It may be a few hours before we will be able to take and post pics though. In the meantime we are being stuffed with cookies and brownies from Aunt Gayle, who is sitting with us in the waiting room.
If she does need the fenestration it only adds a few more minutes to the operation, and she need not go back on the bypass machine. She did get intubated for this surgery, but the anesthesiologist promised that his top post-op priority would be to let her go the recovery room without the breathing tube. Her poor throat will be raw again for a day or two.
She did get another femoral arterial line to continuously monitor blood pressure. She got another IV line in her wrist for drug delivery. Her PICC line from yesterday stayed and played a role in the surgery, so that was at least convenient. She got another chest drain tube, through the same hole that was just closed (trying at least to minimize scarring). She did NOT get another femoral venous line, mainly because the PICC was in place.
Just waiting at this point for her to be transferred to recovery and then back to the PSHU. We will keep our same room. It may be a few hours before we will be able to take and post pics though. In the meantime we are being stuffed with cookies and brownies from Aunt Gayle, who is sitting with us in the waiting room.
OR again...
Muriel slept while mommy held her this morning. We were off to the OR under mild sedation and she went in at about 11:30. Really hoping this procedure helps!
Sisters visit!
Madeline and Mirabelle visited Muriel yesterday. They got to paint her window and gave her lots of love.
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