Friday 12/28/18

Meghan had an ok night. Labs are looking better this morning, hemo is at 9.8. White is higher but expected from the back to back surgeries. Doctors changed her dressing up and vitals look decent. Only thing was her potassium was a little low so they gave her something for that. Goal for the rest of today is just resting and to get off the heavier medications. They will slowly be lowering them and the vent settings. 

Thursday 12/27/18

Doctors changed her dressing around 5am and saw no active bleeding and drains have slowed down. Late morning they did another labs and it  was back down to 6.9 again, they gave her a unit of blood. For now doctors have decided to keep her on the vent to keep her comfortable. ACES doctors called Rob around 2pm and she is still bleeding. They were checking her dressing and saw bright red. They do think it’s something they will be able to fix vascular so the doctors are with Meghan now to come up with a plan for surgery. Also mentioned at some point they want to put a stent in the pancreas to stop it from leaking and oozing. While waiting for an OR they redid labs and hemo was back down to 6.4 so she will be getting 2 units of blood before surgery. Went to surgery around 615-630pm and we didn’t hear until 1045pm. When they got down there the bleeding had stopped again. they did see an artery they believe was the cause of the bleeding. It was the artery that went into her spleen and did “coiling” to close it off. They will not do a stent for the pancreas until all the bleeding is under control and inflammation is down. Also a dye test was done in the pancreas and it didn’t show anything leaking right now. Ventilator will remain on again tonight. Fingers crossed this was the fix. 

Wednesday 12/26/18

so unfortunate news, Meghan will probably be in ICU longer than we thought. She had some clotting again in her abdomen and her hemoglobin dropped to 6.9. She received 3 units of blood and 2 of plasma. The official read of the CT came back and they saw a large clot in her abdomen near the pancreas. They put Meghan on a medication to treat as if the pancreas is oozing/leaking again. She is going to the OR for minimally invasive surgery. They believe she is bleeding due to the output from her drains. So in surgery they did find where she was bleeding and it had slowed down by the time they got her to the OR. It was an oozing bleed again and they put a special gel foam instead of packing to prevent a secondary surgery to remove packing. They did say to Rob they removed a ton of clots in her abdomen. The doctors believe that Meghan’s blood is thinning from malnutrition, inflammation and the pancreas. Doctors are going to change up the mixture of TPN she is getting to help. Around 7pm she started to bleed again. When they were taking her off the vent after surgery she had a coughing/gagging fit. When this happened she dislodged her abdomen muscle. They put a new pressure dressing on and have it under control. Doctors are going to leave her on the vent overnight to keep her comfortable. Around 10pm they gave her a unit of blood and plasma as precaution but she is not currently bleeding. We are hopeful for a calm night. 

Tuesday 12/25/18

They ended up taking off the skin graft that was just placed and there was some clotting under that. The bleeding and clotting was only in that area. She was moved back to SICU (Surgical ICU) for a 48 hour evaluation. They did the CT and no major bleeds were showing. Very eventful morning but she is now resting and hopefully will be back to the immediate care with no issues. Hope you all had a good Christmas and also thank you for the continued prayers ❤️

Tuesday 12/25/18 - as of now

Meghan was up most of the night and and around 3am she threw up. The tube in her nose got clogged from her stomach bile. They cleared it and it is fixed. Also her vac on her abdomen was clogged so they needed to clear that and now it is playing catch up. Her heart rate has been elevated for the last 90 mins so they are watching that. X-ray is coming up to make sure the tube is placed correctly in her nose. Her sugar is normally a little high but it came back at 395. They gave her some insulin. Nurses think she could be bleeding from the output of her drains. ACES has been paged to come to do a full evaluation. Rob is telling us she is pale and doctors are waiting for labs to come back. Her hemo dropped to 6.1 so they are giving her blood. Her sugar came back again at 400. ACES is currently looking at her vac bedside. 

Monday 12/24/18

Meghan had a good night rest. Labs were done today. Meghan’s white count is still higher at 22 but doctors still aren’t concerned with the rise since she had surgery. She stood today for 20 mins at 60 degrees and then back into her chair for about 2 hours. Meghan again is resting and just watching some tv. 

Sunday 12/23/18

Overnight for Meghan was pretty calm, she was just a little anxious. Meghan had another visit with Hunter for the day, which they both really enjoyed. Starting tomorrow they are going to try and get her to do standing three times a day as she can tolerate. Speech will be back after Christmas to do another swallow test. Meghan’s plan for the rest of the afternoon and night is just to get some rest.

Saturday 12/22/18

Meghan’s white count went up a little to 20 but doctors expected that with her surgery yesterday. She was relaxing and in her chair for a good part of her day. Mom, Dad and Gram went to visit today and said Meghan was looking good and had a decent day. She was doing some standing exercises. She did have some pain but they gave her a little extra medication to help with it.

Friday 12/21/18

Meghan had another good night and only woke up once. Her labs are the best they have been in a while. Her white blood cell count is 14, hemoglobin is at 8.7 and her platelets at 429. She went to surgery for the skin graft around 1-130pm. Surgery went well. Original plan didn’t work out and they did have to use donor skin. They found two new small holes in her bowels. They aren’t sure if the graft will take because of them, that is why they decided to use donor skin. They will keep an eye on this graft and reevaluate in 4-6 days. She will have to have a third graft done with her own skin. Please everyone say an extra prayer that this graft takes and Meghan can get one step closer to move to the rehabilitation facility. 

Thursday 12/20/18

Meghan only woke up once last night. Graft will definitely be happening tomorrow. Dr. Diaz is happy with how her first skin graft is looking. The tiny holes in the intestines are healing and there is less fluid build up. She can not move to rehab until all the skin grafts take and are healing. Doctors plan on using Meghan’s skin if they can but have donor skin ready if need be. 

Wednesday 12/19/18

Doctor decided second graft will probably happen on Friday. Meghan’s nurses decorated her room today for Christmas, some lights, a small tree and stockings. Normal exercises today for Meghan, not too much going on. 

Tuesday 12/18/18

Speech will most likely come by tomorrow and do another swallow test. They will continue swallow tests until she passes. She stood again today for 10 minutes. Her main doctor will be doing a full evaluation of her abdomen and making decisions about her second skin graft.

Monday 12/17/18

Meghan is finally getting more rest at night and this morning she finally felt like she had some energy. Meghan stood again today for 15 minutes at 52 degrees. There are still no updates on her feeding tube and doctors said she could even go home on TPN (iv nutrition). They are telling us the tiny holes in her bowel will heal on their own once she is closed with the skin grafts. 

Sunday 12/16/18

Sorry to everyone reading these updates, I have been a bit behind. We have just been a little busy with Kennedy and work this time of year. Thank you to everyone that is still reading and keeping Meghan in your thoughts & prayers. Meghan had an uneventful night. Hunter went to visit with Meghan for the afternoon. He knows mommy is at the hospital and has a boo boo on her nose. He sits in a higher chair and holds mommy’s hand during their visits. They redid labs today and white blood cell count did go down. Fingers crossed we stay in this right direction. 

Saturday 12/15/18

Meghan had an uneventful night and got some sleep. She was trying to write today, it wasnt very clear but better than a few weeks ago. We will take all the baby steps we can get! Some of Meghan’s friends came by to visit with her for the day. Also Mom, Dad, Gram and I went down to surprise her. Meghan did the speaking valve while we were there. She said “I’m trying” and “I don’t think it sounds like my voice”. She was doing great and it was clear enough for all of us to hear. It was nice to see her and we are all ready for her to just get home. 

Friday 12/14/18

Meghan’s white count is down to 28.2 and her hemo is 8.2. Some nurses from the ICU came up to see Meghan today. They helped her do a bunch of exercises and she was happy to see them. Also she stood again for a few seconds, Meghan is very determined to get stronger each day. 

Thursday 12/13/18

Meghan has been working on her talking a little bit. Having the speaking valve on feels different to talk but she’s trying. She stood again twice on the floor with support from the nurse. Each time was for about 15 seconds long. Her doctor is going to check her abdomen on Monday to see if she will have her next skin graft surgery before moving to rehab. 

Wednesday 12/12/18

Labs were exactly the same from Monday. Meghan will be standing today at 45 & 50 degrees. Meghan has been asking to walk, she just wants to get moving. Finally in 3 months Meghan stood on her own feet off the bed completely upright. She had her nurse supporting her and helping but she did it. She had the catheter from her lung area removed also. So busy day for Meghan. She had a lot of PT and standing on her feet for 15 seconds each time. 

Tuesday 12/11/18

Meghan got some sleep last night. Doctors changed her one medication. The one she was on was very strong and doctors didn’t think she needed it anymore. Labs will still be every 48 hours. X-ray today of her lungs looked better. Hopefully the catheter will be removed tomorrow. Speech is scheduled to see her twice a week. Next step for the trach is hopefully removing it. Doctors want her secretions to be less before that happens. Hopefully next step is to move her to the rehabilitation hospital. That can happen if everything continues to go in the right direction. 

Monday 12/10/18

Meghan’s labs were taken and white count did go down a little bit to 31.5. They will be doing a swallow test today. She failed the swallow test so only swabs of liquid for now. The catheter in her lung area has only had 40cc’s come out of that for few days. Doctors are hopeful that can get removed soon. She did some PT today, sitting on the edge of her bed but no standing. 

Sunday 12/9/18

Hunter got to visit with Meghan today. He got to sit next to her and hold mommy’s hand. Another X-ray was done and new fluid was found in her lung. They are going to get her sitting in the chair and keep up with PT in the hope that it works itself out. Although where the new fluid was found it could possibly become pneumonia. They are going to treat her that way to try and prevent it. Hopefully she will be able to rest tonight. 

Saturday 12/8/18

Labs were taken this morning and again white blood cell count went up to 36. Doctors are telling Rob that they think it is from her aspirating. Platelets have gone up to 989 & hemo is at 8.3. They did another chest X-ray and the fluid is decreasing. When they start the feeding tube it will be in the J tube. This kind of tube by passes the stomach and goes straight into her intestines. 

Friday 12/7/18

CT showed that she was aspirating, meaning when she was swallowing the water and Gatorade a small amount was going into her lungs. So for now she is not allowed to drink anything. Doctors explained to Rob that the fluid is minimal and will work it self out. As far has her abdomen goes her skin graft is looking good. They are going to let that continue to heal before any other grafts are placed. Oxygen levels have been good today. They won’t put another catheter in unless any fluid becomes an issue for Meghan’s breathing, which it isn’t now. Doctors are telling us pneumonia isn’t an issue right now because the fluid isn’t in that layer of lung. The catheter in the area near the lungs is still in for now and draining a minimal amount. If Meghan has no other issues, doctors are talking about moving her to rehab maybe by the end of next week. Nothing is set in stone they are just saying it’s possible if no other issues arise. A Psychologist came by today to see Meghan and is putting her on a medication just to help with some anxiety she is having & hopefully let her get some rest. And for the first time in 3 months she spoke. She had the speaking value on the trach and she said to Rob “ I can talk”.

Thursday 12/6/18

Meghan was waking up a lot last night and getting more rest during the day. Her white count went up a little today to 26. They are going to do a CT to make sure there isn’t a build up of fluid anywhere in her abdomen. Teagan went to visit Meghan today. Around 9pm Meghan’s oxygen levels were going back and forth between 88-93, should be 97-100. Respiratory is going to give her a treatment and that should work. She is going to CT finally around 11pm. Her oxygen level went back up and is doing ok. We won’t have results until the morning from the CT. 

Wednesday 12/5/18

The catheter she has in around her lungs is still draining fluid but very minimal. OT will be with her today and she has been working on exercises herself too. She stood for 15 minutes at 60 degrees. Not much else going on for Meghan today, but Princess Teagan is 3 months old. 

Tuesday 12/4/18

Meghan had a rough night, not getting comfortable and coughing up secretions a lot of the night. She was given more Tylenol today, she still has a small fever. Major thing for today her doctors decided to drain the fluid by her lungs. Doctors explained to Rob that the fluid is no longer in her lungs but the area around them. The fluid is causing pressure on her lungs which is making it harder for Meghan to breath. Lung procedure is done right in her room with a local anesthetic and place a catheter into the area. For now her trach will stay at a 6. The secretions she has still are so thick and doctors do not want to cause any issues with downsizing. They have also changed out one of her bacterial medications, due to the length of time she was on the previous one. Procedure was done for her fluid near her lungs around 1:30pm. They told Rob it drained out 1400 CCs of fluid.

Monday 12/3/18

Today Meghan’s nurse have set up a schedule for her so she has some routine during her days. IR will take her today, she is on their schedule just don’t have a time yet. Doctors have stopped the Delauded pain button and now she only has the fentanyl patch. If she needs anything else to help with pain they will administer that as needed. She is working on her stretches daily and hopefully continually getting stronger. IR replaced the drain around 6pm.

Sunday 12/2/18

Meghan isn’t sleeping the greatest lately. She has a small fever that goes with the MRSA so she is getting Tylenol for that. They did another X-ray just to double check placement of the drain and after pulling the film underneath her, a stitch was pulled out and drain came out. IR will come and fix this at some point today. Meghan’s plan for the day is to be in the chair a lot and she is more comfortable sitting up. IR was unable to get to Meghan today. The site where the drain was isn’t leaking and she does have the drain on top of the abdomen. Meghan’s vitals are still looking good and spending most of her time in her chair. 

Saturday 12/1/18

Meghan was up most of the night, still getting up some secretions. This afternoon they did decide to give Meghan a unit of blood not because she is bleeding but from being on TPN (iv nutrition). The blood will help with some proteins for Meghan. She still is getting dextrose in her bowels to wake them up. Doctors don’t plan on changing her trach at this time, they don’t want to downsize too quickly. The cultures they took yesterday came back positive for MRSA. She is being put on a new medication for that today. The drain is right where they took the culture of puss. So the nurses told Rob that with the new medication and drain right in that area it shouldn’t become a bigger issue. 

Friday 11/30/18

Meghan didn’t get much sleep overnight but resting early this morning. Her labs were taken this morning and white blood cell count went up just a little bit. Doctors aren’t concerned at this time. PT and OT came to work with her for a little and now she is sitting in her chair. Pain management came to see her today and switch her to the fentanyl patch instead of dilaudid. They did a new culture today of some stuff that was coming out of her drains. Same as the other cultures they check it daily for any new growth or any new infections. Meghan did 8 hours in her chair. Also she was able to cough up some fluid and secretions, so hopefully some of that was the fluid in her lungs.