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.

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.

Wednesday 10/31/18 continued

So they found the bleed on the scan, it was near her right kidney. She went to the OR around 11am. They also today had a vascular doctor in surgery. If the bleed was a vein they would try and go through it and fix it from the inside. He came out around 1pm and said it was not a vein bleed. It was ooze bleeding all over her abdomen again. They think the spot they saw on the CT was the contrast dye building up in one area. Doctor came to talk with Rob after surgery. She had the oozing bleeding in her whole abdomen. They found an arterial bleed that they fixed. They packed her again and had to undo the closure on the lower part of her abdomen. The top stayed the way they fixed it yesterday. Next surgery is Friday. The plan is to remove packing, drain out any extra fluids. Use mesh to close her abdomen and do nothing else internally. By not touching anything they are hoping things can heal. They will no longer be flushing her abdomen. If she does begin to bleed again they will go back in if necessary. The biggest issue is how weak her body is. They would like to see if not bothering the abdomen at all, with her own immune system and the medication to see if that will get the infection under control. She was given 13 units of blood, 10 plasma and 3 platelets. Meghan is now resting and hopefully a peaceful night for her!

Wednesday 10/31/18

Hemoglobin is now 4.2. They started giving blood in her room. They are going to do a CT of the abdomen so they can find out where the bleed is coming from. They also have vascular doctors now looking into things with the surgical team. If it is a vein they can do a procedure and go inside the vein and fix it that way. They have already given her 3 units of blood and 3 of plasma. She was sent to CT and will continue to be given blood products until they can read the scan. She is back now from that and now we are waiting to hear more info.

Tuesday 10/30/18

Meghan went down for surgery around 9am and was in surgery until 1145am. They did begin to close her abdomen. They have a mesh over the top and bottom with an area open incase they have to go back in for any bleeding. The doctor said pancreas is looking ok but can’t be 100% sure if it is done causing damage. There was no current bleeding and will monitor that for 6 hours. After the 6 hour mark if no signs of a bleed they will begin the medicated flush of the antibiotic fluid. During surgery they did replace the feeding tube in her nose and will have that ready once they want to start feeds again. That will not happen yet but shortly. Meghan didn’t need any blood during surgery. Meghan was resting and just relaxing as best as she can. Next surgery will be on Friday, to try and let things rest and heal as much as they can before going back in. Around 1030pm Meghan’s blood pressure dropped and they put her on a little bit of medication for it. They drew labs to see if anything was going on. Her hemoglobin was 9.2 around 4pm and now is 6.2. They are giving her two units blood and will re draw in 90 mins to watch counts.

Monday 10/29/18

Today was a day of rest for Meghan. The doctor opted to wait another day for surgery with the antibiotic wash out so Meghan can heal internally as much as possible. Damned if you do damned if you don’t with surgery. If they go in too early it could remove any clotting. If they don’t go in the infections sit and can get worse. Her white blood cell count is still rising and back up to 50. Meghan is set as of now to be the first case tomorrow for surgery. 

Sunday 10/28/18

She had a very busy night after again being rushed back to the OR. She is sleeping and getting rest. She will not be going to the OR today because of last night. Mom, Gram and I got to visit Meghan today. For everything she went through last night she looked good. She was communicating by mouthing with us and we showed her the cards that came for her. She enjoyed reading and seeing them. The rest of the day she has been resting. She will go back to the OR tomorrow later in the day for the antibiotic wash out as well as looking & checking for bleeding. 

Saturday 10/27/18

This morning one of Meghan’s drains fell out. The nurse was changing her dressing and it came out, looked like the stitch had come out. Rob also stated that her sponges looked like there was liquid just sitting on top and very saturated. Doctors were paged to come and take a look at her and stat labs were taken. Her blood pressure had gone down and another number they watch (MAPS) was 56. Doctors think she may be bleeding again. Back to the OR 😢 she went down around 1030am. I will update as soon as I have info. Please say a prayer! 

She is out of surgery. She was bleeding again from her right side and they do not know what caused this to start. They could see exactly where the bleeding was and it has already stopped. They have packed it to keep pressure. The drain that fell was not working correctly and that is why the fluid saturated her sponges, it had no where else to go. Bowels looked the same, no better no worse. Overall look they said abdomen looked better due to medicated flushes. So they want to do those in the OR to help assist in fighting the infection. They may do these every 24 hours for a few days. Pancreas looked the same no changes or bleeding in that area. CT results from over night didn’t show anything they don’t already know. Blood pressure is back up and MAPS is currently 85. 

They had a sonogram done to check for blood clots in her veins. They did find a small one by her neck but it is on the wall and she still has good blood flow. They also believe she is having a small reaction to the new anti fungal medication they started today. Doctors told Rob that this is not uncommon since it’s such a strong medication. Next plan is surgery tomorrow. They will be washing her out again with the medicated fluid. Meghan had her bladder scan done since she hadn’t peed. She did have a full bladder. They told Rob the reason she wasn’t peeing could be from the low blood pressure. They thought it would be a benefit to put a regular catheter in so that was placed. She was put back on a little bit of blood pressure medication for now. Meghan had been pretty out of it today and in and out of sleeping. They noticed her coloring was off and she was very pale. Nurses had ACES (her surgical team) paged to come take a look. When the doctors came in they wanted labs stat and thought two possible things 1. She was becoming septic 2. A new bleed. Her hemoglobin has dropped to 2.6 and she started getting blood right away. Platelets have been moving in the right direction and was over 300 and now currently 65. She got already 8 units of blood, 8 plasma and 2 platelets in her room and headed back to the OR. She had a new bleed. It was an area by the pancreas. She got 2 more units of blood in surgery and 1 of plasma. 

Friday 10/26/18

Surgery is still on for this afternoon. During surgery they will be placing an erector spinae catheter. This is for pain medication. The doctors told Meghan that was an available option and she wanted to try it. OT was with Meghan today making changes to her splints for her hands to not be so curled all the time. Meghan had a little bit of a temperature and was given Tylenol for it. Doctors explained to Rob they believe since she has the current infection she may have had a small temperature the whole time but dialysis can cover that up. She went to surgery around 130pm. Meghan’s surgeon did not come up and talk to Rob but another doctor did. All the info they had was that the bowel is still very irritated, however no breakdown at this time. The infection is still not under control. They are switching out her irrigation fluid to a medicated one. She did get one unit of blood in surgery. Also now will only be pulling labs once a day at 4am. Since Meghan is off dialysis they said it isn’t necessary. With dialysis they need to monitor her electrolytes all the time. With her being off the machine they do not need to do this. Meghan is also scheduled for a CT of her abdomen just as a double check for everything going on. 

Thursday 10/25/18

Meghan did get some sleep last night. Doctors are trying to find a pain medication that works for Meghan, she is having some pain. They did change one medication but she felt nauseous again so they switched back. Other option would be an epidural but there are also risks with that. Good news of today because she is producing urine they have changed her to intermittent dialysis. They also have an external catheter, less chance of infection than placing a regular one to collect her urine. Her labs early in the morning all went in the right direction by a lot and was good but 4pm labs all went back up. They think the earlier ones were false labs due to her body continuously getting flushed. She has a lot of extra fluid inside. She was completely off the vent today for over 10 hours. She has been trying to get some rest as much as she can and surgery is set for tomorrow, she is the second case.

Wednesday 10/24/18

Surgery was pretty quick this morning. Doctors washed out her abdomen and really no changes. Her bowels are still very swollen and possibility of breakdown is still a very serious issue. She did not need any area repaired today and no bleeding. So the good side of today nothing got worse since Monday but nothing got better either. The bowels are a waiting game, not much the doctors can do for them. They would like to close her as soon as possible to prevent any new infections. That being said they need these current infections to respond to the medications before that can happen. The doctors theory behind the bowels being so bad is from the c-diff and everything else happening in her abdomen. Meghan got some rest for the rest of the day today and her next surgery will be on Friday with the hope they see some progression.

Tuesday 10/23/18

Meghan rested well last night, as far as labs go not much has changed. They had put her in the chair again today and off of the ventilator. She tolerated that well. Meghan was put on two new antibiotics to try and get this infection under control. Meghan also had something called touch therapy. It is just a light massage for her arms and legs. Meghan seemed to enjoy that and would like to have it done again. This is suppose to be helping in making patients be able to relax. Meghan’s labs have been changed to only twice a day. At this point the levels they are watching do not change that fast in a six hour window. A 12 hour gap will give the doctors more information to see if the new medications are working or not. Surgery is set for tomorrow morning first case.

Monday 10/22/18

Meghan went for surgery around 11am. The report today is steps backwards. 😢 The infection got worse. They had to repair a part in her intestines that they have already repaired once. It broke down again. No feeding tube was replaced at this time. Infectious disease doctors will be talking with Meghan’s surgical team and trying to see what medications they can change for the infections. Bleeding has stopped but the infection in her intestines is her main issue now. Doctors basically told Rob they are going to try and get a class of antibiotics that works and Meghan slowly starts healing or things are going to keep breaking down. Waiting to hear from infectious disease and her evening labs.

Sunday 10/21/18

They have opted against taking her lung fluid sample. Due to her body being weak it’s a possibility of causing bleeding and they don’t want that. White blood cell count is slowly going in the right direction and her breathing is ok. Mom and Dad got to visit with Meghan today. They said her swelling in her arms and hands have really gone down. They didn’t move her into a chair today so she could rest before surgery. Surgery will be at some point tomorrow, no set time yet. Hemoglobin dropped slightly but they will wait to see what labs are later and before surgery to see if she will get blood. Meghan rested for the rest of the day and hopefully will gain strength for tomorrow’s surgery.

Saturday 10/20/18

This morning nurses were moving some of Meghan’s lines & tubes to prevent infection. They do this every few days to keep everything clean. They have her again in the chair to sit up. Teagan got cleared again to go up and see Meghan. She had a good day with a few visitors. Meghan was having some pain but was given some pain meds to take care of that and rested for the rest of the evening.

Friday 10/19/18

Last night Meghan peed on her own so that was a positive. This is a sign her kidneys are functioning, although she still is and remains on dialysis. She has had a little bit of fluid in her lung and because her one blood level (white blood cell count) has been higher they are thinking about doing a procedure to get a sample to rule out infection. Doctors think they are getting the infections in her abdomen under control. That being said the white blood cell count is still high so they want to just check it maybe. Today Meghan was moved to her chair in the room to get her out of the bed. She did get sick twice and that shouldn’t happen with the tube down through her nose.  The nurse flushed the tube and gave her some nausea medicine to help with that.

Thursday 10/18/18

Surgery went well. The area of major bleeding has stopped, although she could be oozing slightly. Doctors were ok with that progression. She did receive platelets but did not need any blood during surgery. During surgery they did realize a small hole in her stomach from the feeding tube. The doctor explained to Rob that was a minor thing that can happen from movement of feeding tube. They did repair it and replaced the tube. Also doctors took new cultures from her abdomen to help get this infection under control. Those are checked daily to see what grows and what possible way they could change her antibiotics. After surgery Mom and Gram were able to visit with her today and she was awake and wanted to see pictures of the kids. Mom said she was smiling and even laughing a little when they were sharing stories with her. Meghan’s abdomen is still open and will have another surgery by Monday. They do not have a plan yet of what day. Continued prayers are appreciated and we hope this is our turning point to get Meghan heading in the right direction. 

Wednesday 10/17/18

Meghan finally had a decent day, after 43 days and 19 surgeries. Doctors got her back into a chair sitting up. She also was taken off the ventilator completely for a little bit to see how she would tolerate it and she did ok. Labs were pretty much the same all day. Holding at the same is better than going down. Surgery tomorrow will be to make sure the doctors see nothing new, flush out her abdomen and change sponges. Doctors really don’t want to poke at anything to make anything mad unless it’s necessary. She is set right now to be first case tomorrow morning.

Tuesday 10/16/18

Last night Meghan didn’t get much sleep, she was mouthing questions to Rob and nurses. She was asking about her surgeries and basically what has happened. In morning rounds they decided to change Meghan’s pain medication because she was telling them she was still in some pain. Her labs have been up and down as they have been for a while now. She did receive two units of blood today & platelets. Doctors are trying to possibly get her sitting in a chair soon to help with skin breakdown just from being in her bed so much. Ending up having a hematologist come in tonight to look at Meghan and she did a couple a tests to see if she has any underlying issues with her blood. Meghan’s body is consuming her platelets faster than she can regenerate them on her own. Surgery is being pushed to Thursday to let Meghan’s body have another day of rest.

Monday 10/15/18

Meghan had her next surgery and not much changed. Special packing has been removed, her abdomen is still open but just covered with the sponges. Pancreas still looks the same, no better/no worse. One culture done from her abdomen has shown some bacteria growing and it’s being treated with the antibiotics she has been on. They plan on still flushing her abdomen as well. Meghan’s lab has still been up and down, some head in the right direction and then go back. Right now plan is next surgery on Wednesday.

Sunday 10/14/18

Due to Meghan’s late surgery Friday into Saturday morning her next surgery got pushed until tomorrow. Meghan is on a lot of antibiotics to try and get this infection in her abdomen under control. She is still on blood pressure medication to help that stay up. She will keep receiving blood as needed. Her levels have been up and down all day. The doctors are hoping to see some progress in tomorrow’s surgery as always we are too! Gram, Jimmy, Nicole and I all got to visit today. Meghan did know we were there but she was resting most of the time. 

Saturday 10/13/18

Meghan got back to her room in ICU around 230am. She did have another bleed in an artery that the pancreas caused damage to. They were able to get it under control and repacked her abdomen. She received 12 units of blood during the surgery which was high but a lower amount than past surgeries. During the morning the doctor did a chest x-ray to make sure her lungs were clear. The left lung had a small amount of fluid but doctors were not concerned at this time. They ending up having to up the ventilator setting so that she does not have a CO2 build up in her lungs. Over night when Meghan is deep sleeping she was only breathing 6-8 times a min, the ventilator will assist with this. The infection that she has in her abdomen is the doctors main concern. They took cultures during surgery so that they can narrow down the exact class of antibiotics to help kill that infection. For the remainder of today Meghan did get some rest. Mom and dad got to visit with her and she was awake and responsive. She wanted mom to come back in the room after saying goodbye for the night and mouthed I love you! 💜

Friday 10/12/18

Meghan went to surgery around 4pm. Her abdomen is still open and the doctors said she still has the infection in the abdomen. Her pancreas has still caused a little damage and some tissue has been removed. They are still going to be doing the flushing in her abdomen to help get rid of the infection. When Meghan was back in her room after surgery her blood pressure went down a little and doctor put her back on medication to control it. Her blood pressure couldn’t be controlled. Doctors were monitoring closely and I guess because of levels they are bringing her back to the OR. They are thinking possibility of a new bleed. I will update this post once we know more info. 

Thursday 10/11/18

Meghan has been stable, they are still doing some irrigation in her abdomen to hopefully help with the infection in that area. Surgery is still on for tomorrow, she may go in the am but there is someone ahead of her on the schedule. Jimmy visited Meghan at the hospital today. He let us know she was talking (mouthing) a little bit but she was very tired. She pretty much spent the remainder of the day resting. Her hemoglobin has gone down a little bit but the doctors are not concerned at this point.

Wednesday 10/10/18

Surgery this morning was around 8am. The doctors said the bleeding has stopped. They didn’t see any new damage and uterus looked ok. Plan moving forward is start again with light irrigation to flush out her abdomen while she is still open. This will help with the infection in her abdomen. She will again have surgery on Friday with hopes of starting to close. Labs will still continue every 6 hours and will be monitored closely for levels and the output of her drains.

Tuesday 10/9/18

Meghan was been resting a lot today. Her labs were up and down. They put compression sleeves on her arms to help with her swelling. Jimmy and Nicole went to visit at night and said her arms and hands did look better. Plan for surgery tomorrow is still to go in and recheck and hope there is no new bleeding and the bleeding they saw on Monday has stopped. She is still receiving IV nutrition, they will not start feeding tube until her bleeding in the abdomen has been controlled. Surgery will mostly likely be in the morning tomorrow.

Monday 10/8/18

She went for surgery around 8am. Mom and I got there as she was returning to her room in ICU. Nurse practitioner came up to tell us about surgery. She still has ooze bleeding and was repacked with special packing that has medication to help the blood clot. Packing was done on her upper left quadrant, that is where most of the bleeding was. Her right ovary was removed because it was looking necrotic. Her colostomy bag was placed on her right side. Current labs, hemoglobin dropped a little and they were giving her a couple units of blood in her room. They turned down her ventilator setting and she is breathing more on her own. Hopefully Meghan gets some rest tonight. Next surgery will be on Wednesday providing everything stays the same for tomorrow. 

Sunday 10/7/18

Family had a meeting with Meghan’s doctors today. Pretty much no change in Meghan. They need to get the bleeding under control before moving on with anything else. Surgery is going to be tomorrow to recheck everything and plan of the day for Meghan is to rest. 

Saturday 10/6/18

Meghan is resting and not much has changed. Levels up & down. She was given blood and platelet to help keep the blood count up to have it heal. Meghan will continue to rest for the rest of the day. 

Friday 10/5/18

This morning Meghan had her drain on her abdomen repositioned to better spot for it to continue draining. Doctors had to change the antibiotics for the infection in her blood because the ones she was on the bacteria was becoming unresponsive to it. Meghan’s abdomen was becoming a little big again. ACES (her surgical team of doctors) came in to evaluate her they don’t like her abdomen. Back to the OR, they believe she still is bleeding and want to get in to see and control it. Doctor came back to update after surgery and it was the same issue. The ooze bleeding was unable to clot because they were continuously flushing her internally it didn’t have a chance to form the clots. Flushing has been stopped and repacked. Next surgery will be Sunday or Monday. 

Thursday 10/4/18

Overnight labs were similar and no major changes, slightly up and down but not alarming. She went for surgery around 1:30pm and surgeon came up to talk to everyone right after. Doctors were happy with what they saw. Pancreas and area near it has stopped bleeding! Didn’t have to repack with the pressure and said things looked a ton better than the last 48 hours. They redid the placement of her drains so she can continue to drain internal fluid if needed. Also looked at her ovaries and uterus. One ovary looks ok, other one is questionable. Uterus is pretty beat up but at this time they don’t want to remove it if it isn’t necessary. Could be a potential future surgery. Next surgery to recheck again will be on Saturday if no major changes in between time. Recent labs have been looking ok and nothing alarming. They have been checking for skin breakdown just from being in the bed so much and they are having a wound specialist check her out as well. Overall a good night for Meghan and we will all continue to pray that we still head in this direction.

Wednesday 10/3/18

Surgeons told rob to have family come to the hospital - Meghan went back to surgery to see what the leaking is and check for internal bleeding. Went down to surgery around 4am and now waiting to here from the doctors. Pancreas was irritated again and area around that was bleeding. This bleed is oozing out and only way to stop it is applying pressure.. so they were doing that in the OR. They got it under control and Meghan received a lot of blood during surgery. Doctor let Meghan sit in the OR for a little after packing her abdomen to make sure she was stable enough to go back to her ICU room. She is now resting and that is the plan for the day, another surgery is set for tomorrow to re check everything and will continue this pattern for a few days. Saying goodnight Meghan was sleepy but awake and knew we were all with her. I told her I would be back in a couple days but mom, dad, gram, jimmy & Nicole would be there tomorrow. I said I love you and she mouthed it back to me 💜

Tuesday 10/2/18

Tuesday 10/2 - White blood cells up more overnight to 68 and blood pressure has slightly dropped. On a positive note kidneys have slightly improved and no dialysis at this time will be needed. Feeding tube is at the highest setting so Meghan is getting some good nutrition today. One drain is going to be removed as it has not had fluid output for 3 days. Heart procedure was done too and nothing was found sticking to her heart. Late labs came back and white blood cell count is up to the 90s. Doctors are retesting and think the high count is from the C Diff. Meghan just went into surgery around 745pm . They noticed her incisions were leaking. They opened a few of her stitches in her room and fluid was coming out. They want to see what is going on. She is currently still in surgery. Out of surgery - pancreatitis enzymes damaged the blood vessel & supply to her colon. Colon was removed. Meghan was left open and will be for monitoring. When she came back to her ICU room, slowly she began again to start leaking again out of incisions and which is the body’s response when something is wrong (like stress/infection) body wants to send blood to heal it.

Monday 10/1/18

Overnight white blood cell count went from 44-60. The doctors at this point still think it is the  c diff because of the high white blood cells. They are having a gastroenterologist come in and see Meghan. He is suggesting a fecal transplant, which is giving Meghan healthy stool to have good bacteria in her digestive tract to help heal her. Also a procedure will be done to take pictures of her heart to make sure the fungus in the blood isn’t sticking to her heart. The fecal transplant was done and have to wait at least 36 hours to see if she will need a second treatment. Heart procedure will be done tomorrow.

Sunday 9/30/18

White blood cell count in 40-50 range which is high but stable. Kidney levels are still about the same. The doctors did a abdominal CT again to see if any changes and nothing come back out of the ordinary. 

Saturday 9/29/18

Meghan has been given laxatives and a rectal catheter to help control the C Diff. Labs all day and just another day to try and let Meghan’s body rest. Rest is the best for thing for her.

Friday 9/28/18

The rash Meghan has is about the same no worse. Off all medications except medicine for C Diff. Kidneys are looking ok but doctors still want her on dialysis. White blood cell count is about the same still high but not much change. Infections have put off getting Meghan to stand but PT is still doing some exercises with her in her room and getting her sitting in a chair.

Thursday 9/27/18

White blood cell count is more stable today although lactade is rising. They are thinking possible bowel infection, tested and positive for c-diff. She will be on antibiotics and limited visitors due to that being contagious.

Wednesday 9/26/18

White blood cell count was still a little high today. She did have two bowel movements. Meghan developed a rash which they think could be a reaction to a medication. Meghan is still mouthing she wants to go home. Drs want us to bring Meghan’s socks and sneakers to have her try and get standing by the end of the week

Tueaday 9/25/18

Meghan’s white blood cell count went up and having a CT to check for infection. No infection was found at this time. She did have an enema done to try and get her bowels moving. She was sitting up today again too 

Monday 9/24/18

Brought Teagan up to the hospital so Meghan could see her again. Meghan was sitting up in the chair for a while again today. Physical therapist came in and started stretching and moving Meghan’s arms, hands, legs and feet. Nurses kept on checking her feeding tube and tolerating ok. She was taken off constant dialysis and moved to intermediate dialysis. 

Sunday 9/23/18

Meghan was sitting up in a chair today and also asking the doctors if she could go home. Labs were all good today and about the same. Meghan’s main goal of the day was to get rest.

Saturday 9/22/18

Meghan got to meet Teagan! 💗😍😇 crying happy tears but Meghan got to hold and be with her new little angel!

Friday 9/21/18

Meghan went to surgery around 730am. Finally they did see some improvement and colon looked ok. Thank god. They did close her the best they could, they felt there was no more “gunk” spreading. She does have a mesh netting to help with the incision set. In the future she may have a little hernia but that can be repaired at a later date. She is back in her room resting.  They will slowly begin taking her off of machines to see how the body reacts and tolerates everything. She was again in the chair today sitting up. 

Thursday 9/20/18

Meghan was stable overnight and this morning plan is to just rest and let her body hopefully begin to heal. The nurses moved her into a recliner chair to let her sit up and get off of her hospital bed. She slept most of the day and surgery is set for early tomorrow morning to recheck her colon and other organs.

Wednesday 9/19/18

Went for surgery at 8am. Meghan is stable after surgery but still open. Pancreas overall looks ok, right looks better than the left. Whatever the pancreas was putting out is still being found internal and they need to get all that “gunk” out in order to close her because that will continue to spread if any is left behind which is causing tissue to die. Spleen was removed to due to repetitive bleeding and overall didn’t look good so it was removed. Some of the gunk was on and affected a section of Meghan’s colon. Surgery will be set for Friday instead of tomorrow to let Meghan rest and the doctors said they need a whole 24 hours to notice a change if there is one. Surgery is to recheck the colon if that is worse they will have to remove part of it. For the rest of the night doctors want Meghan to get much needed rest.

Tuesday 9/18/18

Today is a day for Meghan to get rest and get stronger for her future surgeries. Not much changed throughout the day which was a good sign for the doctor. She still has the trach in her neck but she is now off the ventilator! Doctors all day we’re testing her abilities, lifting her arms, wiggling her toes and answering questions. We hope she got some rest and surgery is set for 8am tomorrow. Teagan update- she is doing so well! Grandma is taking very good care of her. She’s feeding well and gained weight she is now up to 6lbs 5oz and she grew an inch since birth. 

Monday 9/17/18

Test has been negative so far for the EEG. Meghan just went to surgery to hopefully recheck and close her. They ended up cutting out some tissue in the area but overall pancreas looks ok. Didn’t close her yet they don’t want to force anything at this point. It will be a slow closing process. They did do the tracheotomy for future surgeries so she could have the breathing tube out of her mouth and then the ventilator can just be hooked up to that. After surgery while recovering she was slowly becoming responsive and following simple commands. Mom Gram Heather Jimmy and Nicole all got to go back to the hospital to see her and she was communicating to us by mouthing words, telling us she was too hot and wanted the blankets off and asking the nurse questions about what’s happening. She knew she just had a baby and the nurse asked her basic questions and she new all of the answers except the month! It was a great feeling to see her awake and she knew all of us! 

Sunday 9/16/18

Meghan is stable and fluids were cut down so she seems less swollen this morning. Doctors said tomorrow’s plan for surgery will be to close if they are 100% sure she is healing and heading in the right direction. If they want her to stay open they will decide to do the temporary tracheotomy for future surgeries and would then be able to remove breathing tube. Ventilator would be continued through the trach. One of the lead doctors came in to talk to Rob this afternoon and he still isn’t happy that she can’t follow simple commands - opening eyes/squeezing hands, etc. they will be doing the EEG overnight tonight. That is the test they were going to originally do and one of the reasons she got transferred to University of Maryland. This test will record brain activity and see if those silent seizures are happening. 

Saturday 9/15/18

Meghan’s hemoglobin went down so they gave her more blood today and also found yeast in the blood. Her already being on antibiotics will help that. Doctor will just continually watch her levels and if any changes will make decisions on further testing from there.

Friday 9/14/18

Went down at 8am to surgery. Surgeon came out to talk with us, everything is the same, which that's basically what they wanted to see. She is still open and will be because doctor said no point in closing when they need to keep re checking - next surgery would be scheduled for Monday - unless things change over the weekend. Pretty much the only other thing is a possible temporary tracheotomy because she would be more comfortable without the tube down her throat and that would only be temporary and then she wouldn't be on sedation meds. Goal for today is rest and nutrition. She will have small amounts through feeding tube and also IV nutrition. 

Thursday 9/13/18

Went for Surgery at 10am. Definitely severe pancreatitis at this point, they started to scrape the bad cells off pancreas. They doctor has only seen one other pancreas look this bad. Meghan has been left open again because they want to keep an eye on everything. Being that the Pancreas is so bad inflammation started again down her right side of her abdomen inside. She will have another surgery again tomorrow with the same surgeons and chief of surgery to recheck everything again. Today at some point when Meghan has had somewhat rested they will do another ct on abdomen with dye, this test will show any infections elsewhere and an other abnormalities they cannot see with their own eyes. Results of CTs were ok. No worries for the head/brain function and abdomen showed what they already knew. 

Wednesday 9/12/18

Meghan was taken off of sedation and slowly suppose to be waking up. Not great progress overnight but throughout the day she is moving back and forth not opening her eyes though. Surgery tomorrow is to hopefully close her stomach up. They will be rechecking everything before they close. Responded to daddy’s voice again very well. Around 11:30 though Meghan’s platelets again dropped and lactate was high - meaning possibly her organs aren’t getting enough oxygen. Put her ventilator back on and letting her rest will re test in a few hours and hope they see improvement. Surgery still will be set for tomorrow morning 

Tuesday 9/11/18

Saw Meghan this morning and went for surgery at 730am. Surgery went well, they did not close her fully due to still waiting to watch fluid. We are having slow progress but progress. Doctors are encouraged she has gone in a good direction at this point but still a long road ahead. Feeding tube will be started today and sedation will continue but at a low level so she can show movement - opening eyes/squeezing hands which we have all gotten to see. They are doing that so if that suddenly stops they would know something neurological would be off. Dialysis is still going and they are trying to pull more “gunk” off of the blood so fluid doesn’t start to build up again. Meghan is stable and things about the same.

Monday 9/10/18

Meghan was stable overnight and they stopped her blood pressure medications again they lighted the sedation and wanted to see if she would be responsive. They wanted to do a full neurological exam and see if she would respond to simple commands - opening her eyes and moving her arms. Which she did well and responded to mommy and daddy. They are letting her rest overnight and second surgery is to scrape bad cells off pancreas if needed and close or just go in recheck if things are ok then close her up with a Smaller drain so fluid can continue to drain surgery is set for 7am 

Sunday 9/9/18

Stable overnight and morning was the same. Meghan was sent for a ct of the abdomen because of fluid in her belly. Labs were done every 6 hours. We all got to meet with the doctors- everyone got to ask their questions.  at that time there was no infection that they knew of - clotting was good at this point- the doctors are not sure what is making Meghan so sick they are looking at all possibilities. After ct results they knew she had a lot of fluid and and possible pancreatitis talking surgery options. The doctors wanted to go in and see what was going on for themselves in there - surgery was explained as her numbers at this point are starting to decrease if we go in and release the fluid it can relieve pressure and recheck all organs and intestines - if there was any small damage to intestines they could remove a part and fix that later if there was a lot of damage there was not much else they could do. Successful surgery no damage to intestines, pancreas looked inflamed and irritated. Surgery was finished, stomach was left open with packing and a drain so the fluid could continue to drain. Now they want to watch her levels overnight and let her body rest. 

Saturday 9/8/18

Morning report was ok Meghan was stable and doctors were trying to figure out a plan to move forward  - started short term dialysis to help with kidneys, they aren’t functioning the way they should be - labs came back and doctor believe she had some internal bleeding another surgery to fix that. Successful surgery they found the bleed and plugged it and Meghan was stable. Again closely watched overnight for labs!

Friday 9/7/18

Doctors were watching all of her levels and went back into surgery for possible stomach infection and checking the third spacing fluid on her diaphragm. Kidneys and liver aren’t functioning as they should, talked about starting dialysis. Stable back to icu for monitoring no infection - Friday night doctor decided to do a CT of the head to check brain function - test came back ok but doctors were unsure if Meghan was having “silent” seizures. GBMC did not have the equipment to do this so we had to transfer to University of Maryland medical center. When she arrived she was somewhat responsive and at that point in time because she was able to do simple commands they didn’t feel like the seizure test was the main concern at that time. Overnight stable and continuous labs and checking levels 

Thursday 9/6/18

Mom and gram stayed with Meghan during the day. Nurses were trying to get Meghan to get up to at least start moving. Physically could not get up, nurses kept checking and looked at her incisions and called in NP and within minutes Meghan was rushed back to surgery to remove numerous clots and had a double blood transfusion - stable and put into ICU and watching levels of everything 

Wednesday 9/5/18

Went into labor and had emergency c section due to Teagan’s heart rate, went well, baby was sent right to NICU & Meghan to regular room to recover