There are many things with this hospital stay that are the same or similar to last time and there are many things that are different. Plus we forget about how things were when he was in hospital for 15 days last time. Today was day 10 this time and I am absolutely exhausted and want Rob home so badly. I will go back a few days and tell you about our week.
Since the surgery wasn't as complicated this time and we were not dealing with a tracheostomy and a skin graft (praise the Lord!) there were many days that almost nothing happened and we did lots of just waiting around. Maybe that is why this stay feels harder. On Wednesday morning the drain that was removing fluid around the lymph nodes was removed! This is the tube Isaac refers to as the rainbow tube and it doesn't hurt but is uncomfortable so Rob was very pleased to get it out. The doctors would come and check on him each day but for the most part they would say things are going well but be patient and then be on their way. We knew Friday would be a big day because Speech Language Pathology (SLP) was coming to assess Rob's swallowing. I made sure I was there as early as I could be on Friday but no one came all morning, or afternoon. Once 3pm hit I went to the nurses and said that they needed to get someone from SLP here because we were not waiting until Monday to start this process. About 10 minutes later Desmond showed up to do the swallowing assessment. I explained our experience with and NG tube and swallowing problems. We really felt we were going to have to do some convincing that we knew what we were talking about. From last time we knew that Rob cannot swallow with the NG tube in however normally they do not remove that tube until you can swallow....you see the problem here!! Desmond got Rob to try swallowing some thickened juice and as we knew would be the case he was not able to swallow it properly. He said he wanted to do a Fluoroscopy (like they did in May) so that he able to see how things are working on Monday and for the weekend we would leave the tube in and have nothing by mouth. He left the room and I burst into tears. I was frustrated that we weren't heard and needed things to keep moving forward. Rob was the strong one and told me that we had to keep trusting God and that He was watching out for us. No more then 10 minutes later Desmond comes back into the room and said he talked to Dr.Pathak and he said to pull the NG tube and let Rob swallow. And just like the NG tube was gone!!!! Praise the Lord. We could have both done a dance we were so excited. After the tube was removed Rob's swallowing was assessed again. He did much better but there is still fear he is aspirating some into his lungs. Basically over the weekend Rob was put on a thickened clear fluid diet. The only problem with that is the hospital does not have many options on this diet and having apple, orange or cranberry juice and tea or coffee is not enough calories for Rob so I asked if he could have Ensure. The last few days have been spent practicing swallowing and meals take quite awhile. Please pray that Rob is able to get back to where he was with swallowing and he no longer aspirates. It feels like we took about 10 steps backward but we know Rob can get back to where he was. On Monday he will see SLP again and hopefully they are pleased with his progress and give the ok to go home.
On Saturday morning half of the staples were removed. It is normal for them to do every other and wait a day to make sure nothing opens up. Tomorrow he should be able to get the rest out as it is looking really good.
Without having an NG tube it meant that Rob's IV could be closed off temporarily and he could leave without his IV pole. This weekend we were able to go for lots of walks and went across the street to the little park. We were even able to take Isaac to the playground and Rob pushed him on the swings!
So we go into a new week hoping that as soon as possible Rob can come home. At this point I think he would do better at home and any care he needs I can help him with. Pray that we are both patient, that Rob comes home on Monday, that the doctors listen and that Rob can gain strength in his swallowing.
We continue to place our hope in the only one who can give us hope. God continues to show us his love and encourage us. We still have times of discouragement but then God leaves a little encouragement for us to keep us going and trusting in Him.
Love Karen
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