Thursday 11/29/18

Meghan was able to get some rest last night and they did labs again this morning. Everything was about the same. Reason for the labs back to back days is IR is going to change the drains today. So they just wanted to double check things before the procedure. Goal for PT and OT is 3 times a week. They will show the nurses stretches and things they want worked on. When they are with Meghan they will check progress and show new things for her to work on. Pain management isn’t changing anything with the pain meds due to her drains being changed today, it is something they might talk about tomorrow. So update with her ACES team. All of the drains on her right side have been removed. The spaces where fluid was building up is gone and drains aren’t needed. The left side they believe still needs the drains. Those will be removed and replaced today with IR. They don’t think the fluid in her lungs it is from drinking. They explained to Rob with all the extra fluid in her abdomen & body, gravity is taking over and it’s working it’s way up from the abdomen. They will have her sitting more in the chair so she is in an upright position and speech will be helping with breathing exercises to help move that fluid. She is allowed to have her Gatorade, water and hard candies. She went for the drain procedure around 2pm. They did find a spot on the left side that was not draining. That one was removed and replaced. They are stopping the blue dye in the dextrose. They did see some of it in her ostomy bag. They didn’t see it in her abdomen which is good but told Rob it could be mixing with the brown color fluid and they wouldn’t know. But good news it isn’t all leaking out. They are going to keep giving her dextrose to try and wake her bowels up. This is to get them functioning to hopefully start tube feeds in the near future if she is able. 

Wednesday 11/28/18

Labs were taken this morning and everything is still about the same. Hemo is 7.5, white blood cell count is 18.8. Platelets have gone way up to 722. A group of doctors IR (Inventional Radiology) came to see Meghan today. There was a little bit of fluid built up and doctors believe her drains just need to be changed. IR will use CT and remove the current drains and replace them in the same positions. The vac that was on top of the dressing will be removed and replaced with a different type of wound management. This was explained to Rob as a bigger ostomy bag with a drain that will sit on top of the dressing. Speech therapy came by today and they said her trach is still too big to let Meghan make any sounds. They are going to talk to her doctors to see what the next steps will be with the trach. So this afternoon they did a routine chest X-ray and saw she had a little more fluid in her lung. So for now she is not allowed to drink any fluids. Every time she was drinking a small amount of fluid was going down the wrong way and getting into her lungs. Also a reason why they think she has been getting so nauseous. She doesn’t have an infection or pneumonia, they said with movement and being active (as much as she can) it will go away on its own. New things for her bowels, they are going to put dextrose with blue dye through her intestines. This is to test if & where Meghan has any leaking coming from her bowels. The blue dye will come out of the drains & doctors will recheck this tomorrow.

Tuesday 11/27/18

Meghan got moved in to her new room early this morning. Doctors don’t have much planned for her today, just to rest. Dressing change tomorrow so we may get more information on how the graft is looking. PT is also scheduled for tomorrow. Hopefully Meghan has another night of good sleep.

Monday 11/26/18

Meghan almost slept all night so that was good. Labs again today and all stable. Her white blood cell count went to 17.1 so that is moving in the right direction. Meghan was resting for most of the day. We took all the kids to get pictures with Santa. Hunter & Kennedy were not fans, Teagan didn’t mind him at all. 😊 They redid Meghan’s vac on the dressing on her abdomen tonight. Today’s good news is Meghan will be finally leaving the ICU. She will still be in this hospital but moved to an immediate care floor. After 82 days of the horrible ups & downs please keep praying we keep moving in this right direction. ❤️🙏🏼

Sunday 11/25/18

Meghan had a restless night. She just couldn’t get comfortable and didn’t get much sleep. This afternoon they had Meghan standing for 10 minutes at 35 degrees and 10 minutes at 40 degrees. The standing pretty much wipes her out and she slept most of the day. The doctors did a dressing change on her abdomen and did end up removing a little bit of the skin graft where it was not taking. No plan for replacing it at this time. The ventilator machine has left the room now. She is way past the 72 hour goal of no vent and will hopefully not need it in the future. She stood again for 10 minutes at 30 degrees, 5 minutes at 35 degrees, and 5 minutes at 40 degrees. Hopefully she will get some much needed sleep tonight. 

Saturday 11/24/18

Labs were taken this morning and everything is holding steady and about the same. She had a little bit of a panic attack this morning and they gave her a treatment of Albuterol to help. Mom, Dad and Gram got to visit today. Meghan is having some pain and discomfort but ok. She was telling mom what Santa pictures she wants of the kids and got to see pictures of them. 

Friday 11/23/18

Meghan slept a little more last night so that was good. Waiting for rounds to see if a plan was made for the day. She sat up again for about 10 mins and was saying it felt better than laying down. So results from the CT came back. The tube is in the correct position, bad news is they found a small hole in her intestines. The drain is right next to where the hole is and whatever fluid was coming out was being drained. The doctors are telling Rob that the body will heal itself and they are happy with everything else. Even with this small hole moving out of ICU is still on the radar. PT and OT didn’t come today. 

Thursday 11/22/18

Labs have been about the same but Meghan is just restless overnight. Doctors talked to Rob that leaving the ICU is on the radar but nothing definite yet. She is still going off the vent. Not much happening today for Meghan, but she was having some tenderness and pain on her left side today. They are going to do a CT just to check everything out. Unofficial report came back and the tube that was going to be her feeding tube looks like it has moved out of her intestines. They will not do anything until the official report comes back. 

Wednesday 11/21/18

Meghan got a wheelchair today with a higher back for more support. She will be able to go around the unit and hopefully build strength in her arms. Speech came in to work with her today and she got a sound out but they said it will be a little bit yet. ACES came to do a dressing change. Little more of the graft did take and if the other spot doesn’t they will do another skin graft in the future. 

Tuesday 11/20/18

Meghan’s labs were decent from early this morning. After doctors have seen Meghan today they will have her trach downsize to a 6. She has been off the vent now for 51 hours and still going. They had moved Meghan into her chair today and took her outside for about 10 minutes. The nurses asked Meghan and she said yes she would like that for change of scenery. She was in the chair today for about 3 hours. Moving forward she will not go back on the vent unless there is an issue. 

Monday 11/19/18

Meghan has been off the vent for 25 hours. Blood pressure and heart rate have been good so no labs and still will be on the 48 hour rotation. Speech therapist will be in today to see Meghan.  Hopefully to downsize her trach, which is another step to being able to talk again. Tube feeding is suppose to start at some point in this week.  Ophthalmologist was in to see Meghan today, normal check and they are very happy with everything they see. Speech said her trach now is too big. She has an 8 now which is the biggest size. They put in an order to downsize to a 6 and this will allow more air to go past the trach and make it easier to speak. PT and OT are with Meghan and goal today is 20 minutes around 30-35 degrees. She did 5 minutes at 41 degrees and 15 minutes at 35 degrees. ACES came in and changed the dressing on the skin graft and about 2/3 have taken. They are happy with the way things are looking. They will do another dressing change on Wednesday. Doctors do not want to downsize the trach at this time so they will be revisiting in the future. Right now the skin graft is the only thing covering her organs, they did not fix her muscle. So in a year she will have another surgery to fix her muscle in her abdomen. That will be a 2 day surgery and she will be in the hospital for about 10 days. This afternoon she did another stand for 20 minutes at 35 degrees. Tonight Meghan has hit 36 hours off the vent and still going. 💪🏼🙏🏼

Sunday 11/18/18

Doctors were in to see Meghan for morning rounds and are happy with the way things are looking. Infectious disease doctors were in as well today and her white blood cell count is at 23.7. They aren’t going to change anything as it is slowly going in the right direction. She is off the vent again this morning. She did sit on the side of her bed today for about 20 minutes and resting now. Also was able to keep down some Gatorade today. 

Saturday 11/17/18

No labs today they are going to be doing them every 48 unless major change in blood pressure, heart rate or coloring. She was having some pain but excited for the day because Hunter and Teagan will be visiting. Both kids got to see and be with their mommy today! Meghan was upset because she just wants to get home. Mom, Dad, Gram, Ginny and George all were up for the visit as well. Today was the first time the family of 4 was all together. 💛 Meghan’s next goal is to be off the vent for 72 hours. At that point they will talk about full time rehab. She was tired from the day and was going to be resting. She hit 16 hours today off the vent. We are all so happy with the baby steps and Meghan is continuing to fight hard to get stronger. 

Friday 11/16/18

Meghan couldn’t get comfortable last night so she is tired today. Her hemo did drop again to 6.6 and they gave her a unit of blood. The doctors do not think Meghan is bleeding. They think it is dropping because she is using red blood cells and everything faster than her body can reproduce them. Her hemo went up to 7.7 after the unit of blood. She went to surgery around 2-230pm for the skin graft. Skin has been applied and a new tube placed in her intestines. This tube for now will be a drain and then when ready become a feeding tube. Doctors were happy with how the skin graft looked. One spot on the lower portion may not take just how it looked on the skin. She may have another graft in the future. She didn’t need any blood products during surgery. Blood pressure and heart rate are doing well. The coloring in the skin graft is pale for now, as it heals it will turn more towards Meghan’s skin tone.

Thursday 11/15/18

Meghan did pretty well overnight and asked around 2am to side on the edge of her bed. She will be off the vent and doing PT & OT as well. Hunter went to visit with Meghan today. It was a good visit and Meghan was very happy to see him. She was off the vent for 13 hours today and did well. She will have her skin graft surgery tomorrow but later in the day.

Wednesday 11/14/18

Meghan was off the vent early this morning. She was able to keep down some Gatorade and hasn’t gotten sick yet. Hemo did drop overnight but no blood was given at this time. Meghan was off the vent today for 10 hours total time. She again had a little fever so they gave her Tylenol for that. They are going to do some new cultures to see if there is any change infection wise. Did labs to recheck levels and hemo went up and she did not receive blood. Also next step in getting Meghan’s abdomen completely closed they are thinking they may do her skin graft on Friday. They will place that and watch it closely for any rejection of the new skin. They do not want to use Meghan’s skin to avoid any new chance of irritation or infection so they will use donor skin. If the skin doesn’t take they just will remove it. There is a way less risk of rejection than like an internal organ from a donor.

Tuesday 11/13/18

Meghan was getting sick a lot of the night. They are thinking it may be all the different flavors that they are allowing her to have in drinks and ice pops. Hemo is still little low but they are watching it. Doctors may let Meghan go a day without labs to see if that helps hemo stay stable. Meghan also will be doing PT and OT again today. She likes sitting on the edge of the bed, she says it is a more comfortable position. They are going to only let her have water & Gatorade now to limit flavors. Hopefully to get her to keep them down and not get sick. They were able to get Meghan in the chair from her room and wheel her out on the floor just to see something different. She then wanted to stay in the chair and look out her window. She was off the vent for 4 hours today. They did have to give her some Tylenol last night as she had a little bit of a fever. She was tolerating the Gatorade and hopefully won’t get sick tonight. 

Monday 11/12/18

Overnight Meghan asked to sit up and stretch. She sat up with support for a total of 40 minutes. During that time for 15 minutes she supported herself all on her own. Hemo went down a little bit ago so during rounds this morning doctors decided to only draw labs once a day at 4am. They think that may be causing the drop. Meghan’s blood pressure, coloring and heart rate are all stable. Meghan asked again during the day to sit up on the side of her bed. She said she feels better like that and less pain. Also today she did stand for 15 mins at 31 degrees. They let her have a popsicle today too. She did get sick from it but they will keep trying to let her have different things. She does not currently have the feeding tube in and the doctors have not mentioned to Rob when that will be. Hopefully Meghan will get some much needed rest today. She definitely is fighting hard to build up her strength.  

Sunday 11/11/18

Meghan’s hemo dropped again over night to 6.8 and they gave her a unit of blood. They think it may be a small bleed but nothing is coming out of drains and all of her numbers are ok. They will be doing swallowing tests today as well. First standing today was for 19 minutes at 30 degrees. Swallow test went fine and she is starting to drink some water. Although shortly after she got sick and all of the water came up. In the afternoon she did about 20 minutes of standing.

Saturday 11/10/18

Meghan didn’t sleep to much but doing ok. Hemo dropped again a little to 7.4 but doctors are monitoring closely. Meghan’s blood pressure & heart rate were ok so no plan for now. Plan for today is off the trach again for 2 hours at a time if she can. She also did 10 minutes standing at 34 degrees. She has been approved for some drinks, Gatorade and flat ginger ale. 

Friday 11/9/18

She was off the vent completely for 5 hours. She still is nauseous but they think it’s from her pain medication. Her 4am labs came back off and nurses retook them. They were around the same as they have been the nurse told Rob she thinks some of the flush was in the line and it made the numbers off. Meghan’s lab have been ok. Her platelets are much better now around 459. And we did ask the doctor it is better they are higher but can it be too much and they said hey wouldn’t worry until 1000. Tube feedings are still on hold until the drains have very minimal output. If they feed too soon they could cause issues in her gut again. The CT of her abdomen came back ok. Drains looked ok , intestines though still no better. She was on and off the vent today so that was another good thing. 

Thursday 11/8/18

Today they were getting Meghan a standing bed. The doctors/nurses can increase the angle and slowly get Meghan vertical. CT was also ordered to check Meghan’s drains. She stood for the first time in 2 months at 25 degrees for 12 minutes. Again later in the day she did 15 minutes at 25 degrees. Labs all day have been pretty much the same and no majors changes good or bad. 

Wednesday 11/7/18

PT and OT were with Meghan again in the morning. PT would like to get Meghan a standing bed to get her moving some more. Her hemo has been stable and staying around 8.6-8.8. Meghan has been resting and hopefully day by day she keeps regaining strength. 

Tuesday 11/6/18

Meghan had an ok night, some discomfort. She is still getting nauseous at times. The doctors are waiting about a week before starting Meghan’s feeding tube to make sure intestines are healing. Meghan’s next big goal is to get off the vent completely. She is breathing on her own but just having pressure support. So each day they will take her off the vent for a few hours and see how she does. Also her white blood cell count has been staying around 40. Doctors are telling Rob they think this is still high due to all the healing Meghan’s body is trying to do internally. 

Monday 11/5/18

Meghan was up a lot of the night but she did get a lot of rest during the day yesterday. PT came to do some exercises with her. She did really well. She sat up on her own with no support for 10 minutes. Small steps all in the right direction today. Teagan is 2 months old and is so sweet! Thank you to everyone that is reading this and your continued prayers! We all are hopeful this is Meghan’s turning point! 

Sunday 11/4/18

Overnight her hemo did drop slightly to 6.9 and she did get one unit of blood. They aren’t super concerned at this moment because of the very slow drop. Since the back pain medication had been taken out they are going to start her on Effexor to help with pain. This is will in combination with Dilaudid. Her hemo today has been holding around 8.4, so doctors were happy with that. Meghan got to watch Mickey’s 90th spectacular and hopefully resting for the rest of the night. 

Saturday 11/3/18

Labs were stable overnight, Rob said she had a decent night. Mom, Dad, Gram and Teagan got to visit with Meghan today. Meghan got to hold Teagan again and was communicating/mouthing really well with everyone. She went for surgery around 1pm. So surgery went well. She did not need blood during surgery and nothing is currently bleeding. They were able to close her abdomen with a special mesh. Her next surgery would be to do a skin graft but not for about 2-3 weeks pending on any changes in between. Bowels are still swollen and abdomen still infected but doctors were happy with what they saw. They wanted to close so no new infections started, best protection is having her closed. Rest of the evening she was resting. 

Friday 11/2/18

Meghan had a decent night and labs were stable. Her team of doctors were happy with that! Her results from the tests that the hematologist sent came back all normal. OT was visiting with her today and were working on legs and ankles. They have her in a boot at times to help stretch her ankle. Today they also took out her line for dialysis. She has not been on dialysis now for a week. Doctors are very happy with urine output and don’t see her needing that in the future. The catheter in her back for extra pain meds will come out today as well. It is only effective for short term. White count is still in high 40s but doctors aren’t too concerned at this point because they know what her infection looks like and will be going back in tomorrow. 

Thursday 11/1/18

Meghan had bleeding again overnight and she was given 2 units of blood. This morning she was getting pale again and was mouthing to Rob that she felt the same as she did yesterday. Nurses did stat labs and hemo is down to 5.5, they are getting her more blood now. Doctors are coming up with a plan for today. 

Plan is to give her more blood products and hope she would clot on her own. They turned her drains & vac off so the new blood products would stay in her abdomen. They will retake labs in 90 mins to see where numbers are at. Meghan’s abdomen was building up and they wanted to take her down to get in and see what was happening. Went to surgery around 1230pm.

She had another bigger bleed. A vein had given out and it was an area that was affected by the pancreas. They fixed it and Meghan is stable. They repacked her abdomen with pressure and will recheck everything in 2 days. Rob told us Meghan is pretty swollen but that is because of all the products she has been receiving over the past two days. She was having some pain so doctors are upping her pain meds to help get her comfortable.