Thursday 2/28/19

Meghan had a decent night. She was going to be the first case today for the procedure to remove the fluid from her uterus but an emergency came in before her. OB took her down for the procedure around 2pm. Procedure went well. They removed 20ml of fluid from the uterus. They will do cultures with the fluid to see if there are any infections. During the procedure Meghan received 4 units of plasma. Doctors told Rob they did this as precaution from the procedure. 

Wednesday 2/27/19

Meghan had a good night and got some rest. Labs were stable this morning. PT and OT worked with her today. She stood on the floor with support from her nurses and that made Meghan smile. She spent some time in her chair today too. Vitals are stable and again hoping Meghan gets sleep tonight. 

Tuesday 2/26/19

Meghan started to bleed again last night around 10pm. ACES was paged to her room and was checking her out. This bleed was from a blood clot becoming loose from a previous bleed. Doctors removed it and changed out her wound vac. Meghan’s skin graft looks ok and the bleeding has stopped. They redid labs and her hemo was at 7.3. This mornings lab came back and her hemo did drop to 6.9. Doctors gave her a unit of blood. OB will be doing the procedure to remove the fluid from her uterus on Thursday. She has been wearing her boots today on and off for 2 hours at a time and they had her standing in the bed for 20 mins at 40 degrees. Hopefully tonight is a calm restful night. 

Monday 2/25/19

Meghan couldn’t get comfortable last night, so she didn’t get much sleep. The drains that are by the fistulas (holes) in her intestines are putting out a lot of fluid. Hemo is at 7 and white is at 18. The nurse told Rob that she does look a little pale right now but vitals are stable. We are hoping to hear from IR with a plan for all the fluid. So IR, ACES, gastro and OB all met today. Meghan’s most recent CT was showing fluid in her uterus. The doctors think this could be part of the rise in the white count too. This week OB will go into the uterus and remove the fluid. They will not be removing the whole uterus at this time. Her doctors do not want to cause the possibility of making anything worse. We are hoping Meghan gets some much needed rest tonight. 

Sunday 2/24/19

Meghan got some rest last night and hasn’t asked for pain medication today. Meghan has spent over 6 hours in her chair today and with boots on and off every hour. She told the nurses she is tired and hopefully she will get some rest tonight. 

Saturday 2/23/19

Meghan didn’t sleep well last night. Mom and Dad went down to visit with Meghan today. They took her late this morning for a CT to check all of her drains. Nurse Practitioner told Mom and Dad that she looked at the CT herself and the pancreas is definitely still leaking fluid. She is going to get IR (interventional radiology) to see Meghan hopefully on Monday. She wants to see if they can do another drain to get that fluid out of Meghan’s abdomen. Hemo was at 7 today but heart rate was ok, so they are not giving her blood right now. Meghan is wearing boots on and off to help with foot drop. They have created a schedule for her one hour on one hour off. 

Friday 2/22/19

Meghan slept almost the whole night. Hemo is at 7.4, white is at 16.6 and platelets are 249. Around noon Meghan had another fever of 100.5 and ACES are with her now. She is currently bleeding from somewhere in her abdomen again. The nurse told Rob it isn’t a bad bleed but visible and in her drains. So ACES called Rob and yesterday they put something on her abdomen to suction out any extra fluids. The suction caused the bleed to start, they turned it off and now it is set just for gravity to drain the fluid. Meghan is now doing ok and getting her TPN overnight. Last temperature they took was 98.2. 

Thursday 2/21/19

Meghan got some rest last night. The skin graft is looking good. Meghan’s heart rate was a little elevated this morning but back to normal. Vitals are all looking stable. They tried to put meds through her J tube this morning and it was blocked. They will be doing a test to see what is going on with that. While ACES was with her today they do believe the pancreas is still leaking fluid. Late morning Meghan had a temperature so they will be doing labs again to check everything. So ACES had decided to change her J Tube to a red rubber drain. They want to get GI doctors involved again to see how they can maybe help all this pancreatic fluid. The doctors did drain some more fluid today from a small hole in her abdomen. They do not want any of that fluid to destroy any of her skin graft. Meghan went for the procedure to get her drain changed and everything went well. Hopefully this helps and we can continue to move forward. For now she will be staying at the hospital. 

Wednesday 2/20/19

Meghan didn’t sleep well last night. This morning she had a small bleed under her wound vac on her abdomen. They could stitched it up and it stopped. Not much else going for Meghan today. Hoping she will get some rest tonight. 

Tuesday 2/19/19

Meghan got some decent sleep last night. ACES had cleared her to go back to Midtown and they are just waiting for a bed to be open. Meghan still didn’t ask for pain meds today. Nicole got to show her some pictures and videos of Teagan. She was using her speaking valve for a little bit. The doctor came by to fix her stitches by her J tube (that is the tube putting dextrose in her intestines). All of her vitals right now are good and hoping for a restful night. 

Monday 2/18/19

In the morning we got to see Teagan too. Meghan’s AST has gone down to 63 and ALT to 76. Her bilirubin was at 3, all heading in the right direction. Today was the first day in a very long time that Meghan didn’t ask for pain meds. She has spent most of her day in her chair too. 

Sunday 2/17/19

We all got to see Hunter in the morning before going to visit Meghan. All the kids aren’t allowed at the hospital right now because of flu season. Meghan was in her chair for most of the day. She was getting upset, she thought she was in the hospital for a year. We all reassured her it has felt like forever but it’s only 5 months. She seemed a little better after talking with everyone. Hoping she stays positive and starts to heal.

Saturday 2/16/19

Labs are looking a little better but still high. Mom, Dad, me, Jimmy and Nicole all went down today to visit. Meghan was happy to see everyone. Her nurse was trying to tell her to just keep up what she is doing and PT is really on her. She was sleeping on and off for most of the day. She can use her speaking valve but it is uncomfortable for her. All of Meghan’s vitals were good all day. 

Friday 2/15/19

Overnight Meghan got sick 3 times in 2 hours. They will be transferring her back to the hospital. Her vitals are stable and they have started her on antibiotics in case this is a new infection. She got a unit of blood before her drain procedure. The nurse told Rob she looks a little jaundice. Her AST and ALT are double/triple the normal count. Those labs deal with liver enzymes. Meghan’s bilirubin is at 3.7. Prayers please for a calm night 🙏🏼

Thursday 2/14/19

Meghan still has a fever. Speech did come to see Meghan today and worked with the speaking valve for about 30 mins. OT had her brushing her own teeth and had her coloring a little bit. PT was focusing on her legs today. The CT came back and her gallbladder is definitely inflamed and she has more fluid in that area. Meghan’s doctors want to place a larger drain in that area. They are going to transfer her back to the hospital. Right now they do not have an open room for Meghan to go back to. IR can do this procedure at the rehab facility so they will wait for now and see how Meghan’s night goes. 

Wednesday 2/13/19

Meghan had a decent night and PT and OT were with her this morning. Meghan has a small fever, they are going to take her for a CT just to make sure everything is ok. Unofficial report looks like the gallbladder is inflamed and there is fluid in the pancreatic area.   

Tuesday 2/12/19

Meghan had an okay night. Labs and vitals are stable. PT and OT worked with Meghan today but she got a little nauseous so they let her rest the rest of the day. 

Monday 2/11/19

Meghan couldn’t get comfortable last night and didn’t get much sleep. Hemo count is at 8.8, white count is at 12.1 and platelets are at 217. Doctors are happy with these labs. PT came to meet Meghan today. They will be working with her 5 times a week. We aren’t sure of times or how many hours but the weekends will be her rest time. Vitals are good and day one of PT will start tomorrow. 

Sunday 2/10/19

Meghan’s hemo did jump up to 9. Yesterday they gave her a unit of blood as well as the iron. No signs of active bleeding just gave it as a  precaution. Hunter went to visit Meghan today. Hoping PT will be in to meet her so she can start her new schedule. 

Saturday 2/9/19

Meghan slept most of the night. Labs came back and hemo is at 7.1 and white count is at 10.5. The nurse explained to Rob white count will go up and down for a little because her body is trying to heal so much. They are going to give her liquid iron for 5 days to see if that helps keep her hemo levels up. Meghan met the dietitian today and no changes to the current TPN (IV nutrition) she is on. The doctors have not said anything about starting tube feeds again for now. PT does not work with the patients over the weekend to let them rest so she will meet them on Monday. 

Friday 2/8/19

Meghan had a decent night and labs are holding stable, white count is at 7.7 which is one of the lowest we have seen. Speech therapist came and worked with Meghan today. She is using the speaking valve more. The doctors will wait until they are totally in a clear for surgeries before removing her trach. Meghan had a relaxing calm day and hopefully going to get some rest. 

Thursday 2/7/19

Meghan had a decent night and got some rest. All of her vitals are stable. She was using her speaking valve again. Transfer to rehab was successful and Meghan is settled in her new room. Today they don’t have her doing to much but getting use to everything new. Labs will still be done daily and we are hopeful she will slowly start her healing process. 

Wednesday 2/6/19

Meghan didn’t sleep well and labs are stable. Meghan moving to rehab at midtown was 100% approved. Her transfer is scheduled for 10am tomorrow. Gastro doctors called Rob and the stent that was placed a while ago did not come out on its own so that needs to be changed. They did this procedure via  camera this afternoon. The doctors did not see any improvement in the pancreas so they replaced the stent. This will be replaced in 4 weeks again if needed to prevent infection. If Meghan still needs the stent at that point her team of doctors will come up with a long term plan. Later that night Meghan’s nurse told Rob that her graft is looking really good. She still has a small wound vac over it and no signs of any bleeding. 

Tuesday 2/5/19

Last night labs came back and were ok, doctors think Meghan was dehydrated. They ending up giving her some fluids. This morning Meghan was using her speaking valve a little bit and labs were all stable. ACES saw Meghan and are happy with how things are looking, the graft and drains. Later in the afternoon ACES has medically cleared Meghan to go to rehab. There are still things in the works so we don’t know exactly what day but the process has started. They are currently waiting for insurance to okay the move. She will be going to rehab at midtown. This is still affiliated with the hospital and ACES will be checking in with her. Rehab does have somewhat of an ICU if something would happen, they can stabilize her and she would go right back to the hospital. Once this happens we are all praying hard we do not go backwards. Also today Princess Teagan is 5 months old! 💗

Monday 2/4/19

Meghan had an ok night. Labs are about the same as yesterday morning. Speech therapy came to see her today. She does have a speaking valve now but it still is uncomfortable. Speech will continue to work with her. Rob just let us know her drains are putting out a little more fluid than normal and it has a tint of red, so they sent labs. Vitals are still stable. 

Sunday 2/3/19

Meghan’s labs this morning were ok. Hemo is 7.8, white count is 14.5 and platelets are at 280. They did check her skin graft and believe 80% has taken. The doctors are still not sure if she will need a second graft. Where they took her skin from on her leg is healing nicely. Unfortunately for now they stopped her tube feeds. It was backing up and coming out of her drains so the doctors knew it was leaking into her abdomen. They are going to continue with dextrose through her intestines. Dextrose is less of a chance of infection if it does end up leaking into her abdomen. Rehab is still on the radar for Meghan but it still really depends on her skin graft. She stood for 15 mins at 45 degrees today. 

Saturday 2/2/19

Meghan woke up a few times last night and it was uneventful. Meghan will get an X-ray today to check the placement of drains. Nothing is wrong they do these every so often just to check everything. Today she stood for 18 mins at 45 degrees. All of Meghan’s vitals are looking good. 

Friday 2/1/19

Meghan had a restless night again. Meghan got a new trach today. If they put their finger over a certain piece Meghan was able to say hello a few times. 😊 She will be working with PT today and had the heat lamp on her leg on and off. 

Thursday 1/31/19

Meghan didn’t get much sleep last night, just couldn’t get comfortable. Labs are all around the same and no major drops. In rounds this morning, doctors were happy with vitals, how Meghan’s leg looked, and her drain output. For now they will leave the abdomen alone until Tuesday to check it. If it looks good there could be talk of moving to rehab. That is all depending on how the skin graft looks, no decision will be made until then. Her tube feedings are still at 10ml and they evaluate that day to day. Right now, no talk of upping her feedings. Meghan’s vitals are good and she hasn’t felt nauseous all day. Hopeful for a restful night. 🙏🏼💛

Wednesday 1/30/19

Meghan had an ok night. Where they took the skin from her leg she said it was sore. Today they are going to give her 2 units of plasma. In her labs they test a ton of different things. Certain ones they are watching are factor 8 and INR which are clotting factors. They want to be proactive with the new graft. She still has no signs of active bleeding. 🙏🏼 Meghan was in her chair today for a few hours. Where the doctors took the skin off of Meghan’s leg it is leaking some fluid. Doctors said that is totally normal and they brought in a heat lamp for her leg to help keep it dry. Vitals have been stable all day.